They call it the "Reminiscence Neighborhood," but actually it's a minimum security jail.
The residents can't leave unless an approved person escorts them for a few hours or few days visit to the outside world. Most never leave at all.
The security measures are fairly simple. Only one elevator is available for residents and their guests. To leave the third floor, one has to punch in a code to open a door and reach the elevator. Then on the first floor, one has to walk past a central desk in order to walk out the front door or reach the parking elevators.
Most residents don't know a code exists and couldn't remember it if they knew it.
Mom has no idea that she's confined because she leaves the third floor and the building frequently with someone accompanying her.
But some residents know they are trapped and haunt the hall near the elevator, waiting for people to go through the door so they can follow them out.
Regina is one of the smart ones trying to escape. When she's near the door to the elevator, I punch in the code and slip through the door quickly, before she can follow me. But the code disarms the door alarm for 30 seconds, so Regina can open the door and slip out after some leaves in the elevator.
One time I arrived in the elevator to find her standing there, about to enter the elevator after I walked out to the third floor.
"Oh--Regina!" I said, not sure what to do next.
I opened the door to the third floor to call someone, forgetting to punch in the code, and the door alarm went off, bringing a staff member running. Regina was apprehended and gently drawn back to the Rem Neighborhood.
Another time when I was leaving the floor to take my mother to a doctor's appointment, an agitated resident was in the area of the elevator, determined to leave. Staff members were dealing with him, but meanwhile no one could use the elevator.
I waited, then wheeled my mother around the floor to the service elevator, escorted by Beth, the Rem director, so we could leave on that elevator.
It turned out, however, that Beth had the key but didn't know how to activate that elevator, so we wheeled back to the first elevator. I was starting to feel claustrophobia: would we ever escape? This was making us late to the appointment.
That feeling of being trapped in dementialand occurred again last night. I had spent nine hours with Mom, first taking her to church, then to lunch at my house, then back to Ocean View.
Then I sat with her for an hour as she ate her dinner, waiting for her evening caregiver to arrive at 6 pm.
Dinner hour on the Rem floor is a real spectacle.
Sue sits there alert and curious, wondering what to do with her spoon, until a caregiver finally comes and puts spoonfuls of pureed food into her mouth.
Ralph leaves the table and returns, demanding his food, unaware that he has just eaten.
Julie shouts incessantly, "Could somebody please help me? Someone, anyone. I'm just asking for a little help, but you're all ignoring me. I guess I'll just sit in this chair 'til I die. I'll be happy to die. I'd rather die than be here. Help me, somebody, please!"
"Oh, Julie, Julie Adams," says Bethlehem, the lead caregiver, who is one of 4 staff members cleaning up dishes and managing the 26 residents. No one has time right now to push Julie's wheelchair to her room, and it's better to keep her with the group rather than leave her alone in the room.
"She always yells like that," comments Mom.
Leota sits blank and cheerful at the other end of Mom's table as a caregiver tells her, "You must eat something, Leota. Here, take a spoonful of this."
The new lady on the floor announces, "I'm boycotting." She hasn't eaten since she arrived.
I chat with Ryan, the young man who cares for John. "Don't you ever take him out for a walk around the block?" I ask.
"No, I can't do it," he answers. "If he gets out on the street, he wants to go home. I have to tell him 'No, your wife is dead,' and he gets upset."
Finally Racquel, Mom's evening caregiver, arrives and I bolt for the elevator after a few seconds of greeting.
"Oh, you aren't coming back to the room?" she asks. Usually I talk with the caregivers a bit, taking an interest in their families and their lives.
Tonight, however, I have a feeling of desperation as I punch in the code to reach the elevator. The door opens, then closes behind me, and I sigh with relief. I'm on the other side of the door.
On the first floor, I walk to the other elevator, go down to the parking garage, and punch the code again to leave the elevator lobby and get to my car.
As I start to drive out of the garage, I come around a corner and face a huge grilled gate blocking my path.
Panic comes before I can talk myself out of it: another wall preventing my escape. I know the electronic monitor will see my car at the gate and open it. I know this.
Finally it happens: the gate slides up slowly, and I drive out. A wave of relief hits me, and I find myself fighting back tears.
I'm not as tough as I think. A full day of caregiving, topped by dinner with people thirty years ahead of me in the life cycle, is enough to do me in.
Monday, November 07, 2005
Sunday, November 06, 2005
A Lucid Moment
Mom was looking at the smocked dresses she had made for her granddaughters fifteen and twenty years ago. The tiny folds of smocking were held together by embroidered patterns, different on each dress--panda bears, flowers, a red school house flanked by two orange school buses.
One of the dresses had a small flowered label sewed inside the back collar: "Made by Grandma."
"They're so beautiful!" I marvelled. "How did you ever do it?"
"I don't know," she said. "My hands don't even work now." The contrast between her skilful fingers then and now is shocking. Now she can barely sign her name.
"Anne, do you think I'll ever walk again?" she asked suddenly.
I was surprised at her question: usually she doesn't remember that she can't walk, and she doesn't try to make careful assessments about the future.
"Uh--well..." I delayed, trying to be honest, thinking back to her broken hip fifteen months ago and the various health crises since then. "I don't think so, but..."
"I want to walk so badly."
A sharp pain--the realization of her sadness--shot through me, and suddenly I had an answer.
"It depends on whether you exercise. If you stand up at your walker and try to walk, like we did yesterday, and do it every day, I think you could do it."
"I do exercise! I do them every day," she declared, but I knew she meant pushing the pedals on her small foot machine and other very light exercises.
The last time her physical therapist visited, he said she needed to walk with parallel bars and do other stretching and balance exercises daily in order to improve. The home health services provided after her September hospital visit have expired, however.
Unless I can get another PT order from Dr. Susan C., Mom won't have more physical therapy. Medicare only pays for therapy when patients improve; if the patient stays the same or is in declining mobility, there is no coverage.
It's up to me to get another order and to make sure she gets out to those appointments several times per week--I've let this fall between the cracks.
"The girls should know that there's a lot of love in these," Mom said, her mind back on the smocked dresses. "They're done so perfectly."
"Yes, they know that," I said. "You put so much time and love into these dresses."
I was thinking, "This beautiful, colorful smocking will be here when you are gone. They will become heirlooms."
Will my daughters put these dresses on their daughters, or will the smocked look be too old-fashioned for kids to wear?
Will Mom ever walk more than ten feet with her walker again?
"Que sera, sera," as the song says. "The future's not ours to see."
One thing I do know: I won't be spending my seventies doing intricate handwork like this.
These smocked beauties will forever tell a story that begins: "Made by Grandma. Grandma Evelyn, who was born in Telluride in 1919...."
One of the dresses had a small flowered label sewed inside the back collar: "Made by Grandma."
"They're so beautiful!" I marvelled. "How did you ever do it?"
"I don't know," she said. "My hands don't even work now." The contrast between her skilful fingers then and now is shocking. Now she can barely sign her name.
"Anne, do you think I'll ever walk again?" she asked suddenly.
I was surprised at her question: usually she doesn't remember that she can't walk, and she doesn't try to make careful assessments about the future.
"Uh--well..." I delayed, trying to be honest, thinking back to her broken hip fifteen months ago and the various health crises since then. "I don't think so, but..."
"I want to walk so badly."
A sharp pain--the realization of her sadness--shot through me, and suddenly I had an answer.
"It depends on whether you exercise. If you stand up at your walker and try to walk, like we did yesterday, and do it every day, I think you could do it."
"I do exercise! I do them every day," she declared, but I knew she meant pushing the pedals on her small foot machine and other very light exercises.
The last time her physical therapist visited, he said she needed to walk with parallel bars and do other stretching and balance exercises daily in order to improve. The home health services provided after her September hospital visit have expired, however.
Unless I can get another PT order from Dr. Susan C., Mom won't have more physical therapy. Medicare only pays for therapy when patients improve; if the patient stays the same or is in declining mobility, there is no coverage.
It's up to me to get another order and to make sure she gets out to those appointments several times per week--I've let this fall between the cracks.
"The girls should know that there's a lot of love in these," Mom said, her mind back on the smocked dresses. "They're done so perfectly."
"Yes, they know that," I said. "You put so much time and love into these dresses."
I was thinking, "This beautiful, colorful smocking will be here when you are gone. They will become heirlooms."
Will my daughters put these dresses on their daughters, or will the smocked look be too old-fashioned for kids to wear?
Will Mom ever walk more than ten feet with her walker again?
"Que sera, sera," as the song says. "The future's not ours to see."
One thing I do know: I won't be spending my seventies doing intricate handwork like this.
These smocked beauties will forever tell a story that begins: "Made by Grandma. Grandma Evelyn, who was born in Telluride in 1919...."
Friday, November 04, 2005
Obsession
When Mom is all dressed up with her hair freshly coiffed, her nails done, wearing earrings and jewelry, she is elegant.
But lately she's been looking a bit battered: there are two red scabby patches on her chin and several other small red spots elsewhere on her chin and forehead.
These began when she kept insisting that the three or four hairs on her chin needed to be shaved. Never mind that these hairs weren't there--they were being shaved several times a day by whichever caregiver she could get to do it, once again.
To Mom, however, the hairs were there and they were bothering her. She started rubbing her chin to get them off. Then she had to rub to get the rough skin off, the patches irritated by her scratching and rubbing. She scratched spots on her forehead too.
For the last week the caregivers and I have been pulling her hand away from her face and nagging her.
If I say "No! Don't rub your chin" and remove her hand, she starts again twenty seconds later.
"I'm just trying to clean it," she says.
"It's already clean!" I say. "Your face is washed every day."
"But this part needs to be cleaned off."
"No, that's a scab. If you rub it off, it will bleed."
We get into a game where she rubs again, and I catch her in the act, and she laughs.
But she can't help it. Her mind is in a groove that it can't get out of.
Part of Lewy Body Dementia is obsessiveness.
The first obsessions I noticed had to do with toileting. She was worried about losing her continence and wanted to use the toilet many times per day, even though she was wearing Depends. I would limit her to one bathroom trip per hour, but she wanted to use the toilet every ten minutes or so.
While at the toilet, she had to have the water running "for inspiration." If it was just a trickle, that wasn't enough. She had to hear it loudly. Then it had to be hot water.
Then she got into counting and folding the squares of toilet paper as she sat on the toilet.
Later her obsessive-compulsive behavior turned to coughing and spitting into a tissue. She went through two boxes of tissue per day while her doctor changed her medications to try to get rid of the nasal drip and phlegm that was causing the cough.
The next issue was rubbing her crotch with her hand inside her Depend.
In each of these phases, redirecting her to some other activity was the only solution. Scolding and arguing did not work. Her mind would return to the activity like a phonograph record with its needle stuck in one place.
The only good news is that so far each obsession has faded, to be replaced by something else.
It's sad to watch her mind deteriorate, to see her brain losing its connections to the frontal temporal lobe that produces intelligent, logical thought.
But lately she's been looking a bit battered: there are two red scabby patches on her chin and several other small red spots elsewhere on her chin and forehead.
These began when she kept insisting that the three or four hairs on her chin needed to be shaved. Never mind that these hairs weren't there--they were being shaved several times a day by whichever caregiver she could get to do it, once again.
To Mom, however, the hairs were there and they were bothering her. She started rubbing her chin to get them off. Then she had to rub to get the rough skin off, the patches irritated by her scratching and rubbing. She scratched spots on her forehead too.
For the last week the caregivers and I have been pulling her hand away from her face and nagging her.
If I say "No! Don't rub your chin" and remove her hand, she starts again twenty seconds later.
"I'm just trying to clean it," she says.
"It's already clean!" I say. "Your face is washed every day."
"But this part needs to be cleaned off."
"No, that's a scab. If you rub it off, it will bleed."
We get into a game where she rubs again, and I catch her in the act, and she laughs.
But she can't help it. Her mind is in a groove that it can't get out of.
Part of Lewy Body Dementia is obsessiveness.
The first obsessions I noticed had to do with toileting. She was worried about losing her continence and wanted to use the toilet many times per day, even though she was wearing Depends. I would limit her to one bathroom trip per hour, but she wanted to use the toilet every ten minutes or so.
While at the toilet, she had to have the water running "for inspiration." If it was just a trickle, that wasn't enough. She had to hear it loudly. Then it had to be hot water.
Then she got into counting and folding the squares of toilet paper as she sat on the toilet.
Later her obsessive-compulsive behavior turned to coughing and spitting into a tissue. She went through two boxes of tissue per day while her doctor changed her medications to try to get rid of the nasal drip and phlegm that was causing the cough.
The next issue was rubbing her crotch with her hand inside her Depend.
In each of these phases, redirecting her to some other activity was the only solution. Scolding and arguing did not work. Her mind would return to the activity like a phonograph record with its needle stuck in one place.
The only good news is that so far each obsession has faded, to be replaced by something else.
It's sad to watch her mind deteriorate, to see her brain losing its connections to the frontal temporal lobe that produces intelligent, logical thought.
Sunday, October 30, 2005
Shopping for Corduroy Pants
My mistake was telling Mom a few days ago that Roz had bought a pair of corduroy pants. I was just updating her with news of her grandchildren away at college, but the image of those pants stayed in her mind.
Scene 1
I arrive on Sunday afternoon, still a bit shaky from the stomach flu, and planning a not-too-strenuous few hours.
Mom, however, has her mind on corduroy pants.
First let me explain that she never used to spend much time or money on shopping. She was a no-nonsense nurse--first psychiatric, then public health and ob/gyn. Then she taught nursing at the University of Maryland for 13 years. After that she was a Red Cross volunteer and a Meals on Wheels driver, along with finally joining the social clubs that had been her own mother's life: PEO and DAR.
Now she can't do any of that. Because of her gradually appearing dementia, she gave up driving, volunteer work, and even the social clubs.
There are three things she can still do, outside of coming to my house to eat a meal and be with the family:
1) go to church,
2) dine at restaurants (if wheel-chair accessible)
3) shop.
Her favorite thing is shopping. Wielding the power of the credit card, she feels important. If she has several shopping bags on her lap, being pushed around in a wheelchair doesn't feel so bad.
"Thank goodness you're here," she says when I arrive at 3 pm. "I need to go find some corduroy pants."
"What? You have lots of pants," I answer. "You don't need to buy any more."
"Roz bought some corduoy pants, and I need some too," she declares.
"Not today," I say, but she begins whimpering.
"You never let me go shopping..."
I'm startled by her launch into high-pitched, barely intelligible entreaties.
"What do you mean I never take you shopping? Two weeks ago you bought that new lavender silk blouse, two pairs of shoes, and a necklace."
"Well, that was two weeks ago." She continues crying, and I marvel at her shameless use of tears for manipulation. "There won't be any corduroy left--someone else will buy them."
After more aruing, I cave. "Okay, we'll go to Macy's," I say.
Then I try humor: "You have such a sad life here, being waited on hand and foot. You only get to go shopping every two weeks."
"It's true!" she insists, laughing.
Scene 2
We arrive at the mall, driving up several floors while looking for a handicapped parking place. I don't want to park on top, where the sunshine will be too bright for her. I spot two empty spaces together and quickly take one of them, grateful for the extra space in which to get Mom out of the car, but after I park a shiny gray sportscar slips into the spot next to me.
"Oh no!" I'm thinking, and I dramatically pull the wheelchair out of the back of my van as the driver and his friend get out of their car. But they don't take the hint. They click to lock the car doors and walk off.
Now I face a moral dilemma. Can I get Mom into the wheelchair without scratching the sportscar? Should I get back in my van and look for another spot? What if there are no more large spaces or handicap spaces?
I should have parked in the middle of the two spaces to reserve the extra space I needed to maneuver her out of the car without doing any harm to other cars.
I experiment with opening my car door and resting it ever so gently against the other car. It seems okay. I think I can do this without reparking the van.
Scene 3
I am debating whether to take her to Sears or Macy's. How are we going to find corduroy pants in a size that will fit her? She's gone from 5'7" to less than 5'; her waist has expanded, and her back is permanently hunched over by a couple of crushed vertebrae. How can she even try pants on? The only way she can stand up is by holding onto a handicap bar.
I decide to take a brief tour through the petite section of Macy's before heading to Sears.
Mom decides to enlist the help of a saleslady and starts shrieking,"Corduroy pants! Corduroy pants."
Soon a kind woman is helping us search, and the miracle happens: she finds some soft dark brown pants that don't look corduroy to me but indeed have a fine thin ribbed pattern.
"Actually the pants need to have an elastic waist," I explain, looking at some velveteen pants that have just such a waist. When I shop for Mom, I buy "Petite Large" with an expandable waistline (translate: short fat). No trying on needed.
Today we will try to try on, I decide. I pile both pants onto Mom's lap, but she has noticed a white sweater with a collar of lush tan rabbit's fur.
"This is what I was looking for," she exults, and I remember her remark a few days ago about wanting a coat with a fur collar. I let her add the sweater to the stack of clothes in her lap. She continues to see silky blouses and other things she wants to buy. I'm checking price tags and trying to figure out how to leave the store with as few items as possible.
Scene 4
We are in a large, handicapped-accessible fitting room, thanks to the kind attendant. There's plenty of room for the wheelchair, and there's even a white bar to hold onto. I'm committed to taking Mom's shoes and skirt off to slip on the pairs of pants, and I think I can get her standing briefly to try the pants on.
There's just one problem: a bad smell that makes me think she may have had a BM in her Depend. I forgot to bring any extras with me, so I can't take her to the restroom.
The thought occurs to me: "Does 'you break it, you buy it' apply to soiling clothes while trying them on?"
Scene 5
We are at the cash register, about to buy the corduroy pants and the rabbit fur sweater for a total of about $150 before tax.
"Where's my purse?" Mom asks. "Just use my credit card."
"Okay," I say.
The elaborate deception begins.
I hand her the soft pink leather purse and she begins trying to get her wallet out. Meanwhile, I hand the cashier her debit card, which I keep in my wallet. It has my name on it, but it is for her bank account.
"Here, Mom, let me get your wallet out," I say. I take the wallet and hold it, pretending to remove a credit card. Later I return the wallet to the purse in her lap.
I punch in the PIN code and return the card to my wallet.
That's how we handle things financially. My sister and I keep Mom's debit and credit cards; I write her checks. There's actually nothing of any importance in her wallet, except a little cash. She continues to believe that she needs her wallet and purse to go shopping, and we don't tell her otherwise.
Scene 6
We wheel back to the car. I'm tired and getting ever more queasy but grateful that we don't have to go to Sears.
I open the car door and--tap--it hits the sportscar still sitting next to me, not very hard but hard enough to flake off a tiny bit of paint, one square millimeter, from the rim near the wheel.
I panic and read the name of the car: Boxster XP or something like that.
"Maybe it's just a snazzy Toyota," I say to myself, walking around to the front to see if there's any other name on it.
"Porsche."
Return of the moral dilemma: should I leave a note, offering to pay for the damage? As I begin writing various versions in my head, it quickly becomes apparent that anything I say will be ludicrous.
"Battered van owner to Porsche owner: I'm sorry I didn't keep looking for a wheelchair-accessible parking space today. Feel free to contact me (but only if this is your first ding) and let me know your cost to--"
Scene 7
Mom is back at Ocean View, fingering the rabbit fur around her new sweater. "It's so soft and warm," she says with satisfaction.
I'm sewing the extra button that came with the pants onto the waistband to make it as large as possible.
"You got your shopping trip," I say. "We found the corduroy pants."
I hang them up in her closet next to her nine pairs of elastic-waist pants. No, she didn't need these purchases, but she spends her days locked in the Reminiscence Neighborhood.
These pleasures are all she has left.
Scene 1
I arrive on Sunday afternoon, still a bit shaky from the stomach flu, and planning a not-too-strenuous few hours.
Mom, however, has her mind on corduroy pants.
First let me explain that she never used to spend much time or money on shopping. She was a no-nonsense nurse--first psychiatric, then public health and ob/gyn. Then she taught nursing at the University of Maryland for 13 years. After that she was a Red Cross volunteer and a Meals on Wheels driver, along with finally joining the social clubs that had been her own mother's life: PEO and DAR.
Now she can't do any of that. Because of her gradually appearing dementia, she gave up driving, volunteer work, and even the social clubs.
There are three things she can still do, outside of coming to my house to eat a meal and be with the family:
1) go to church,
2) dine at restaurants (if wheel-chair accessible)
3) shop.
Her favorite thing is shopping. Wielding the power of the credit card, she feels important. If she has several shopping bags on her lap, being pushed around in a wheelchair doesn't feel so bad.
"Thank goodness you're here," she says when I arrive at 3 pm. "I need to go find some corduroy pants."
"What? You have lots of pants," I answer. "You don't need to buy any more."
"Roz bought some corduoy pants, and I need some too," she declares.
"Not today," I say, but she begins whimpering.
"You never let me go shopping..."
I'm startled by her launch into high-pitched, barely intelligible entreaties.
"What do you mean I never take you shopping? Two weeks ago you bought that new lavender silk blouse, two pairs of shoes, and a necklace."
"Well, that was two weeks ago." She continues crying, and I marvel at her shameless use of tears for manipulation. "There won't be any corduroy left--someone else will buy them."
After more aruing, I cave. "Okay, we'll go to Macy's," I say.
Then I try humor: "You have such a sad life here, being waited on hand and foot. You only get to go shopping every two weeks."
"It's true!" she insists, laughing.
Scene 2
We arrive at the mall, driving up several floors while looking for a handicapped parking place. I don't want to park on top, where the sunshine will be too bright for her. I spot two empty spaces together and quickly take one of them, grateful for the extra space in which to get Mom out of the car, but after I park a shiny gray sportscar slips into the spot next to me.
"Oh no!" I'm thinking, and I dramatically pull the wheelchair out of the back of my van as the driver and his friend get out of their car. But they don't take the hint. They click to lock the car doors and walk off.
Now I face a moral dilemma. Can I get Mom into the wheelchair without scratching the sportscar? Should I get back in my van and look for another spot? What if there are no more large spaces or handicap spaces?
I should have parked in the middle of the two spaces to reserve the extra space I needed to maneuver her out of the car without doing any harm to other cars.
I experiment with opening my car door and resting it ever so gently against the other car. It seems okay. I think I can do this without reparking the van.
Scene 3
I am debating whether to take her to Sears or Macy's. How are we going to find corduroy pants in a size that will fit her? She's gone from 5'7" to less than 5'; her waist has expanded, and her back is permanently hunched over by a couple of crushed vertebrae. How can she even try pants on? The only way she can stand up is by holding onto a handicap bar.
I decide to take a brief tour through the petite section of Macy's before heading to Sears.
Mom decides to enlist the help of a saleslady and starts shrieking,"Corduroy pants! Corduroy pants."
Soon a kind woman is helping us search, and the miracle happens: she finds some soft dark brown pants that don't look corduroy to me but indeed have a fine thin ribbed pattern.
"Actually the pants need to have an elastic waist," I explain, looking at some velveteen pants that have just such a waist. When I shop for Mom, I buy "Petite Large" with an expandable waistline (translate: short fat). No trying on needed.
Today we will try to try on, I decide. I pile both pants onto Mom's lap, but she has noticed a white sweater with a collar of lush tan rabbit's fur.
"This is what I was looking for," she exults, and I remember her remark a few days ago about wanting a coat with a fur collar. I let her add the sweater to the stack of clothes in her lap. She continues to see silky blouses and other things she wants to buy. I'm checking price tags and trying to figure out how to leave the store with as few items as possible.
Scene 4
We are in a large, handicapped-accessible fitting room, thanks to the kind attendant. There's plenty of room for the wheelchair, and there's even a white bar to hold onto. I'm committed to taking Mom's shoes and skirt off to slip on the pairs of pants, and I think I can get her standing briefly to try the pants on.
There's just one problem: a bad smell that makes me think she may have had a BM in her Depend. I forgot to bring any extras with me, so I can't take her to the restroom.
The thought occurs to me: "Does 'you break it, you buy it' apply to soiling clothes while trying them on?"
Scene 5
We are at the cash register, about to buy the corduroy pants and the rabbit fur sweater for a total of about $150 before tax.
"Where's my purse?" Mom asks. "Just use my credit card."
"Okay," I say.
The elaborate deception begins.
I hand her the soft pink leather purse and she begins trying to get her wallet out. Meanwhile, I hand the cashier her debit card, which I keep in my wallet. It has my name on it, but it is for her bank account.
"Here, Mom, let me get your wallet out," I say. I take the wallet and hold it, pretending to remove a credit card. Later I return the wallet to the purse in her lap.
I punch in the PIN code and return the card to my wallet.
That's how we handle things financially. My sister and I keep Mom's debit and credit cards; I write her checks. There's actually nothing of any importance in her wallet, except a little cash. She continues to believe that she needs her wallet and purse to go shopping, and we don't tell her otherwise.
Scene 6
We wheel back to the car. I'm tired and getting ever more queasy but grateful that we don't have to go to Sears.
I open the car door and--tap--it hits the sportscar still sitting next to me, not very hard but hard enough to flake off a tiny bit of paint, one square millimeter, from the rim near the wheel.
I panic and read the name of the car: Boxster XP or something like that.
"Maybe it's just a snazzy Toyota," I say to myself, walking around to the front to see if there's any other name on it.
"Porsche."
Return of the moral dilemma: should I leave a note, offering to pay for the damage? As I begin writing various versions in my head, it quickly becomes apparent that anything I say will be ludicrous.
"Battered van owner to Porsche owner: I'm sorry I didn't keep looking for a wheelchair-accessible parking space today. Feel free to contact me (but only if this is your first ding) and let me know your cost to--"
Scene 7
Mom is back at Ocean View, fingering the rabbit fur around her new sweater. "It's so soft and warm," she says with satisfaction.
I'm sewing the extra button that came with the pants onto the waistband to make it as large as possible.
"You got your shopping trip," I say. "We found the corduroy pants."
I hang them up in her closet next to her nine pairs of elastic-waist pants. No, she didn't need these purchases, but she spends her days locked in the Reminiscence Neighborhood.
These pleasures are all she has left.
Friday, October 28, 2005
Detective Work
The mystery began not with a dead body but with a scary wake-up call.
At 7:10 am Mom woke up yelling for help and vomiting the entire contents of her stomach.
Jona called me. Because I had gone to bed at 2 am, I was still sleeping when the cell phone rang. I lept out of bed and began to dress and rush down to Ocean View.
By 7:30 I arrived in her room and began the detective work. Jona had managed to clean her up and get her dressed. I knelt in front of Mom, looked at her, and held her hands, which were shaking uncontrollably.
Was she having an allergic reaction to food or medicine, as on June 14? That one nearly killed her.
Was she okay--just having a mildly upset stomach?
Was it a 24-hour flu, something going around Ocean View?
Was it the flu shot she had 36 hours earlier?
I remembered the pistachio nuts I had let her eat the night before, likely suspects for the allergic reaction theory. But then again she had also eaten a handful of orange and black M & M's I had put out in a dish for Halloween. Maybe it was just an upset stomach from eating too much sugar.
Jona reported that Maxine, the lead caregiver for the Reminiscence Neighborhood this morning, had come in to check on her, with Ogart, the caregiver to whom Mom was assigned. He rarely has to deal with her because she has "a private," Jona.
Maxine had taken her vitals: a blood pressure of 161/71, pulse of 56, and temperature of 97 degrees. They had concluded that this event did not warrant a trip to the ER.
Jona also reported that Mom had diarrhea. "Does this mean she is more sick or less sick?" I wondered.
When in doubt, I call everyone: my sister Emily; Suzann, the RN for Ocean View, who hadn't come in yet; Beth, the director of the Rem floor. I was about to call Dr. Susan C. to leave a message asking for advice when I ran into Ilona, a caregiver fixing breakfast in the kitchen.
"Oh yes," she said. "Ralph and Bob and Dorothy had this too, the next day after the flu shot."
It all made sense: these frail old people had been affected by the flu shot on Tuesday.
I went back to the room and talked a bit more with Mom and Jona. Emily had recommended 7-Up, toast, bananas, applesauce. Mom was refusing to eat anything. It didn't look good for even taking her meds this morning, so I talked with the medicine dispenser for the floor and we cancelled the big calcium pills and vitamins for the day. At lunch we would try her thyroid, and her Coumadin wasn't needed until 5 pm.
I went home at 9 am, and Mom got through the day pretty well with no more vomiting.
But in the evening a Monte Carlo Casino Night was scheduled: hors d'oevres, drinks, live music, and professionals with green felt tables to deal cards in games of chance. I wouldn't have gone, except that I had told Connie, Mom's evening caregiver, to come at 8 pm instead of 6 pm.
At 6:30 pm I put Mom's lipstick on and wheeled her down to the big party. She was feeling better and enjoyed the music and excitement at first.
She hadn't eaten all day, so I tried to put together a plate of crackers and some of the milder hor d'oeuvres. She tried both and said they made her feel sick, but she downed three chilled shrimp with no problem at all. I ate some of the hor d'oeuvres.
At the party, we consulted with another mother and daughter, who reported that her mother had vomited on Monday, prior to the flu shot. She had asked the staff whether others had been ill--was it a problem with something that came out of the kitchen?--and met with raised eyebrows. Apparently that was not a line of questioning one could safely pursue.
At 7:30 Mom was tired and insisted on returning to her room, so we left.
Connie arrived shortly thereafter, and I helped her with Mom's shower because Mom didn't feel good. I was half expecting her stomach to reject the shrimp at any minute. We discussed why the vomiting had occurred, and with the new evidence from the other daughter, I concluded that it must be a 24-hour flu going around. I left at 8 pm.
This afternoon, a day later, however, the truth emerged.
I was in the dining/kitchen area and asked Mom how she was feeling. She felt okay and had eaten normally today.
"She was vomiting yesterday," I mentioned to Marnie, the lead caregiver of the 2 - 10 pm shift.
"Yes, they all were," she said. "The cook was sick. He was vomiting earlier this week."
"Oh," I said.
Marnie's frankness stunned me. No coverup, nothing. I appreciated that.
Anyway, the whodunnit was solved. It was the cook and a flu that had already hit many of the residents.
By the way, I'm feeling sick to my stomach tonight, not eating dinner. I shouldn't have eaten those hors d'oeuvres--or did I get it from my mother?
At 7:10 am Mom woke up yelling for help and vomiting the entire contents of her stomach.
Jona called me. Because I had gone to bed at 2 am, I was still sleeping when the cell phone rang. I lept out of bed and began to dress and rush down to Ocean View.
By 7:30 I arrived in her room and began the detective work. Jona had managed to clean her up and get her dressed. I knelt in front of Mom, looked at her, and held her hands, which were shaking uncontrollably.
Was she having an allergic reaction to food or medicine, as on June 14? That one nearly killed her.
Was she okay--just having a mildly upset stomach?
Was it a 24-hour flu, something going around Ocean View?
Was it the flu shot she had 36 hours earlier?
I remembered the pistachio nuts I had let her eat the night before, likely suspects for the allergic reaction theory. But then again she had also eaten a handful of orange and black M & M's I had put out in a dish for Halloween. Maybe it was just an upset stomach from eating too much sugar.
Jona reported that Maxine, the lead caregiver for the Reminiscence Neighborhood this morning, had come in to check on her, with Ogart, the caregiver to whom Mom was assigned. He rarely has to deal with her because she has "a private," Jona.
Maxine had taken her vitals: a blood pressure of 161/71, pulse of 56, and temperature of 97 degrees. They had concluded that this event did not warrant a trip to the ER.
Jona also reported that Mom had diarrhea. "Does this mean she is more sick or less sick?" I wondered.
When in doubt, I call everyone: my sister Emily; Suzann, the RN for Ocean View, who hadn't come in yet; Beth, the director of the Rem floor. I was about to call Dr. Susan C. to leave a message asking for advice when I ran into Ilona, a caregiver fixing breakfast in the kitchen.
"Oh yes," she said. "Ralph and Bob and Dorothy had this too, the next day after the flu shot."
It all made sense: these frail old people had been affected by the flu shot on Tuesday.
I went back to the room and talked a bit more with Mom and Jona. Emily had recommended 7-Up, toast, bananas, applesauce. Mom was refusing to eat anything. It didn't look good for even taking her meds this morning, so I talked with the medicine dispenser for the floor and we cancelled the big calcium pills and vitamins for the day. At lunch we would try her thyroid, and her Coumadin wasn't needed until 5 pm.
I went home at 9 am, and Mom got through the day pretty well with no more vomiting.
But in the evening a Monte Carlo Casino Night was scheduled: hors d'oevres, drinks, live music, and professionals with green felt tables to deal cards in games of chance. I wouldn't have gone, except that I had told Connie, Mom's evening caregiver, to come at 8 pm instead of 6 pm.
At 6:30 pm I put Mom's lipstick on and wheeled her down to the big party. She was feeling better and enjoyed the music and excitement at first.
She hadn't eaten all day, so I tried to put together a plate of crackers and some of the milder hor d'oeuvres. She tried both and said they made her feel sick, but she downed three chilled shrimp with no problem at all. I ate some of the hor d'oeuvres.
At the party, we consulted with another mother and daughter, who reported that her mother had vomited on Monday, prior to the flu shot. She had asked the staff whether others had been ill--was it a problem with something that came out of the kitchen?--and met with raised eyebrows. Apparently that was not a line of questioning one could safely pursue.
At 7:30 Mom was tired and insisted on returning to her room, so we left.
Connie arrived shortly thereafter, and I helped her with Mom's shower because Mom didn't feel good. I was half expecting her stomach to reject the shrimp at any minute. We discussed why the vomiting had occurred, and with the new evidence from the other daughter, I concluded that it must be a 24-hour flu going around. I left at 8 pm.
This afternoon, a day later, however, the truth emerged.
I was in the dining/kitchen area and asked Mom how she was feeling. She felt okay and had eaten normally today.
"She was vomiting yesterday," I mentioned to Marnie, the lead caregiver of the 2 - 10 pm shift.
"Yes, they all were," she said. "The cook was sick. He was vomiting earlier this week."
"Oh," I said.
Marnie's frankness stunned me. No coverup, nothing. I appreciated that.
Anyway, the whodunnit was solved. It was the cook and a flu that had already hit many of the residents.
By the way, I'm feeling sick to my stomach tonight, not eating dinner. I shouldn't have eaten those hors d'oeuvres--or did I get it from my mother?
Wednesday, October 26, 2005
Drinking the Kool-Aid
"I told Miss Colorado we were going to go home pretty soon," Mom announced when I came in the room this afternoon. "It wouldn't be much longer until we got the article done."
"Oh," I said. "Did you work on your computer today?"
"Yes, I got a lot done," she said with satisfaction.
"That's good," I said.
I didn't say: "You can't talk to a doll. You're not ever going home to Colorado. You aren't writing any article or book, and you don't even know how to operate that laptop."
I've learned how to hold a conversation with someone who has dementia.
A year and a half ago, when my mother had first entered "the secure floor" of a different assisted living, I didn't know how to talk to her. I arrived to take her out in the car one day and couldn't find her sweater.
When I told Crystal, the caregiver, that I couldn't find it, she said, "Oh, your mother left it in Mary's room. She was in there trying on Mary's nightgown."
That stunned me. I learned that residents were allowed to go into any room because they couldn't remember which room was their own. They were allowed to take any item or put on any clothing they found, without being told "That doesn't belong to you."
I realized why we had been told not to leave anything of value in Mom's room.
"We just enter into their world," said Crystal, so cheerful and crazy that she seemed like a cult member. "Joe in Room 119 thinks he's the captain of a ship, so if he tells me we're at sea in the morning, I take him to the ship's galley for breakfast. If a resident says we're in Disneyland, we're in Disneyland."
Since then I've drunk the Kool-Aid. I'm pretty good at interacting with people who are way out there in Dementialand.
Mom spent about six years writing and self-publishing her memoir, Adventures of a Telluride Native (available from Western Reflections Publishing). A few years ago she started typing up her five-year diary from 1936 to 1941, but that project got bogged down as her dementia increased. Then she thought she was writing a sequel to her memoir, and now she's not sure whether she's writing an article or a book, nor does she know exactly what it's about.
She was thrilled, however, when Emily bought her a laptop, and she likes to think of herself as working on it. With the help of her caregivers, she uses it to keep a diary of sorts.
This work actually is quite important to her peace of mind. It enables her to explain to herself why she can't go back to Colorado just now: "I have to finish the article."
By the way, Miss Colorado's real name is Anne of Green Gables. She's a doll Mom bought me ten or fifteen years ago, having originally named me for this orphan heroine in the novel by Lucy Maud Montgomery.
The doll has lived in Colorado, but I brought her back to California in September.
"She wanted to come visit you," I told Mom.
Since that day, Mom has had daily conversations with the doll, who stands on the table next to the television set and whose identity has morphed into "Miss Colorado."
"Here--she wants to hold your necklace overnight," I say, hanging it conveniently from her hand.
Am I playing along in the game, or am I as far out there as she is?
I talk to dolls and plan to return to Colorado any day now--as soon as I finish one last article.
"Oh," I said. "Did you work on your computer today?"
"Yes, I got a lot done," she said with satisfaction.
"That's good," I said.
I didn't say: "You can't talk to a doll. You're not ever going home to Colorado. You aren't writing any article or book, and you don't even know how to operate that laptop."
I've learned how to hold a conversation with someone who has dementia.
A year and a half ago, when my mother had first entered "the secure floor" of a different assisted living, I didn't know how to talk to her. I arrived to take her out in the car one day and couldn't find her sweater.
When I told Crystal, the caregiver, that I couldn't find it, she said, "Oh, your mother left it in Mary's room. She was in there trying on Mary's nightgown."
That stunned me. I learned that residents were allowed to go into any room because they couldn't remember which room was their own. They were allowed to take any item or put on any clothing they found, without being told "That doesn't belong to you."
I realized why we had been told not to leave anything of value in Mom's room.
"We just enter into their world," said Crystal, so cheerful and crazy that she seemed like a cult member. "Joe in Room 119 thinks he's the captain of a ship, so if he tells me we're at sea in the morning, I take him to the ship's galley for breakfast. If a resident says we're in Disneyland, we're in Disneyland."
Since then I've drunk the Kool-Aid. I'm pretty good at interacting with people who are way out there in Dementialand.
Mom spent about six years writing and self-publishing her memoir, Adventures of a Telluride Native (available from Western Reflections Publishing). A few years ago she started typing up her five-year diary from 1936 to 1941, but that project got bogged down as her dementia increased. Then she thought she was writing a sequel to her memoir, and now she's not sure whether she's writing an article or a book, nor does she know exactly what it's about.
She was thrilled, however, when Emily bought her a laptop, and she likes to think of herself as working on it. With the help of her caregivers, she uses it to keep a diary of sorts.
This work actually is quite important to her peace of mind. It enables her to explain to herself why she can't go back to Colorado just now: "I have to finish the article."
By the way, Miss Colorado's real name is Anne of Green Gables. She's a doll Mom bought me ten or fifteen years ago, having originally named me for this orphan heroine in the novel by Lucy Maud Montgomery.
The doll has lived in Colorado, but I brought her back to California in September.
"She wanted to come visit you," I told Mom.
Since that day, Mom has had daily conversations with the doll, who stands on the table next to the television set and whose identity has morphed into "Miss Colorado."
"Here--she wants to hold your necklace overnight," I say, hanging it conveniently from her hand.
Am I playing along in the game, or am I as far out there as she is?
I talk to dolls and plan to return to Colorado any day now--as soon as I finish one last article.
Tuesday, October 25, 2005
To Be or Not To Be
Rest in peace--that's what Mom wants to do on an average morning, unless she has the option of going shopping or spending time with one of her children.
She wants to sit in her recliner in front of the television, watching videotapes of her earlier life. She also likes to push the pedals on her small bicycle machine or go out on a doctor visit.
She does not want to do exercises--leg lifts, arm raises, knee lifts like marching in a chair, or arm pushes up from her recliner to stand at her walker.
Can I blame her? I don't get to the gym too often; I should exercise much more than I do.
But in her case, lack of mobility puts her on a steep incline toward death. (Come to think of it, my lack of exercise does the same--it's just that I'm further away from that end, so my choices don't seem to matter so much.)
During each hospitalization--a year ago for her broken hip, last June for her near asphyxia, last September to get a pacemaker--she loses mobility but eventually regains some of the lost ground.
The net loss, however, has put her where she is today: in a wheelchair or chair all day along, unable to walk even with a walker and assistance. The physical therapist today said that walking again is not a realistic goal; the goal is simply standing and bearing her own weight in transfers from chair or toilet to wheelchair. Right now it takes two people, or one very strong person, to manage most of these maneuvers.
The moral issue, therefore, is this: should we cajole her into doing exercises to reach these very limited goals?
Or should we let her rest, and decline, in peace?
She wants to sit in her recliner in front of the television, watching videotapes of her earlier life. She also likes to push the pedals on her small bicycle machine or go out on a doctor visit.
She does not want to do exercises--leg lifts, arm raises, knee lifts like marching in a chair, or arm pushes up from her recliner to stand at her walker.
Can I blame her? I don't get to the gym too often; I should exercise much more than I do.
But in her case, lack of mobility puts her on a steep incline toward death. (Come to think of it, my lack of exercise does the same--it's just that I'm further away from that end, so my choices don't seem to matter so much.)
During each hospitalization--a year ago for her broken hip, last June for her near asphyxia, last September to get a pacemaker--she loses mobility but eventually regains some of the lost ground.
The net loss, however, has put her where she is today: in a wheelchair or chair all day along, unable to walk even with a walker and assistance. The physical therapist today said that walking again is not a realistic goal; the goal is simply standing and bearing her own weight in transfers from chair or toilet to wheelchair. Right now it takes two people, or one very strong person, to manage most of these maneuvers.
The moral issue, therefore, is this: should we cajole her into doing exercises to reach these very limited goals?
Or should we let her rest, and decline, in peace?
Monday, October 24, 2005
The Steep Decline
"There will be a steep decline," said Claudia K., the neuropsychologist who has analyzed Mom's dementia for a year and a half.
"With Alzheimer's Disease there's a slow steady decline like this," she said, drawing a line inclined down at a 45-degree angle. "But with Lewy Body people tend to stay on a plateau for a long time and then go into a sharp decline."
Since that pronouncement a year ago, we've been on the lookout for this sharp decline. There have been serious medical crises--the broken hip, the allergic reaction and swollen tongue, the pulmonary embolism and pacemaker implantation. But Mom has made amazing come-backs from each of these hospitalizations.
Another factor making it difficult to notice a decline is her fluctuation in mental acuity from day to day. One day she is sleepy and can barely talk; the next day she's agitated and very talkative, reporting vivid dreams; the next day she's normal.
Today, however, I was stunned by her condition when I arrived at 3:15 pm. Perhaps because I've been out of town, I was unprepared for what bad shape she was in. I saw the steep decline.
She was nearly asleep in her recliner, snuggled in the flowered velour blanket, with the curtains closed and the lights out, but she quickly talked to me when I arrived. "Oh, is tha' you, Anne? Than' goo'ness you're here."
Her words were slurred together; her eyes opened but closed again.
"Yes, I'm here. Would you like to go out and get some French fries or an ice cream cone?"
I had a few errands to run, and I thought I would take her with me as I drove about town. I had imagined stopping by and immediately leaving with her. No way. I sat down in a chair opposite her and stared: her eyes were closing again, and she was slumped to one side, not sitting straight forward in the recliner.
"I see you're sleepy. Oh, you got your hair done this morning--you must be tired from that."
"Yes... was exhausting. The girl too' forever, washing my hair, rinsing, pu'ing i' on rollers, pu'ing me unner a hairdryer."
I decided to take Mom out anyway, mainly because I needed to make a deposit at my credit union. We started with a trip to the bathroom; then she demanded her "Kuhner's," which I finally succeeded in interpreting as V-8 juice.
She held up amazingly well while going to the dry cleaners, a gas station, and two banks--as well as polishing off a butter pecan ice cream cone. The hardest part was transferring her 120 lbs. from the toilet to her cheelchair or vice versa.
After she was out in the car riding around, while managing the drips from the ice cream cone, she seemed okay. Her speech was not slurred. The steep decline seemed to be a thing of the past--except that I noticed my own shoulder muscles were sore from lifting her. I was exhausted.
Speaking of a steep decline...
"With Alzheimer's Disease there's a slow steady decline like this," she said, drawing a line inclined down at a 45-degree angle. "But with Lewy Body people tend to stay on a plateau for a long time and then go into a sharp decline."
Since that pronouncement a year ago, we've been on the lookout for this sharp decline. There have been serious medical crises--the broken hip, the allergic reaction and swollen tongue, the pulmonary embolism and pacemaker implantation. But Mom has made amazing come-backs from each of these hospitalizations.
Another factor making it difficult to notice a decline is her fluctuation in mental acuity from day to day. One day she is sleepy and can barely talk; the next day she's agitated and very talkative, reporting vivid dreams; the next day she's normal.
Today, however, I was stunned by her condition when I arrived at 3:15 pm. Perhaps because I've been out of town, I was unprepared for what bad shape she was in. I saw the steep decline.
She was nearly asleep in her recliner, snuggled in the flowered velour blanket, with the curtains closed and the lights out, but she quickly talked to me when I arrived. "Oh, is tha' you, Anne? Than' goo'ness you're here."
Her words were slurred together; her eyes opened but closed again.
"Yes, I'm here. Would you like to go out and get some French fries or an ice cream cone?"
I had a few errands to run, and I thought I would take her with me as I drove about town. I had imagined stopping by and immediately leaving with her. No way. I sat down in a chair opposite her and stared: her eyes were closing again, and she was slumped to one side, not sitting straight forward in the recliner.
"I see you're sleepy. Oh, you got your hair done this morning--you must be tired from that."
"Yes... was exhausting. The girl too' forever, washing my hair, rinsing, pu'ing i' on rollers, pu'ing me unner a hairdryer."
I decided to take Mom out anyway, mainly because I needed to make a deposit at my credit union. We started with a trip to the bathroom; then she demanded her "Kuhner's," which I finally succeeded in interpreting as V-8 juice.
She held up amazingly well while going to the dry cleaners, a gas station, and two banks--as well as polishing off a butter pecan ice cream cone. The hardest part was transferring her 120 lbs. from the toilet to her cheelchair or vice versa.
After she was out in the car riding around, while managing the drips from the ice cream cone, she seemed okay. Her speech was not slurred. The steep decline seemed to be a thing of the past--except that I noticed my own shoulder muscles were sore from lifting her. I was exhausted.
Speaking of a steep decline...
Sunday, October 23, 2005
Why Aren't You Here?
"Emily, why aren't you here? I'm waiting for you to take me to church."
The cell phone call interrupted Emily's Sunday morning.
"I came to see you yesterday, Mom," Emily said. "I'm not coming today. Arlene is with you today."
Emily and Duncan are pastors. Their busiest time is Sunday morning, and phone calls at that time are forbidden. But I was out of town, and Mom was with a caregiver, refusing to believe that neither I nor Emily would show up.
After a while she called me, at the steering wheel driving down Interstate 5 toward Los Angeles. At lunch I returned her call. "I'm on my way back, Mom."
She launched into her report on calling Emily. It was just like the Sunday two weeks ago when I was out of town: Mom resorted to phone calls to assert her presence and try to elicit a response from someone.
"I'll be back tonight, late, after you are asleep. I'll see you tomorrow."
"No, come tonight. I'll still be awake."
So I did go to see her at 7 pm before arriving home. She was fine, snuggled up under a velour blanket in her recliner, watching television. I talked with her and the caregiver, Racquel. I showed Mom trinkets from my trip and cut up pieces of fudge for her, bought at a restaurant and gift shop near Hanford.
Later I learned she had continued calling Emily throughout the day, either unable or unwilling to understand that Emily wasn't coming.
Is this dementia?
Or is this her normal, controlling personality coming through loud and clear?
She still manages to manipulate me and Emily into feeling guilty and doing most of what she wants done. That was true twenty years ago and is still true today.
Maybe she's not the crazy one--we are.
The cell phone call interrupted Emily's Sunday morning.
"I came to see you yesterday, Mom," Emily said. "I'm not coming today. Arlene is with you today."
Emily and Duncan are pastors. Their busiest time is Sunday morning, and phone calls at that time are forbidden. But I was out of town, and Mom was with a caregiver, refusing to believe that neither I nor Emily would show up.
After a while she called me, at the steering wheel driving down Interstate 5 toward Los Angeles. At lunch I returned her call. "I'm on my way back, Mom."
She launched into her report on calling Emily. It was just like the Sunday two weeks ago when I was out of town: Mom resorted to phone calls to assert her presence and try to elicit a response from someone.
"I'll be back tonight, late, after you are asleep. I'll see you tomorrow."
"No, come tonight. I'll still be awake."
So I did go to see her at 7 pm before arriving home. She was fine, snuggled up under a velour blanket in her recliner, watching television. I talked with her and the caregiver, Racquel. I showed Mom trinkets from my trip and cut up pieces of fudge for her, bought at a restaurant and gift shop near Hanford.
Later I learned she had continued calling Emily throughout the day, either unable or unwilling to understand that Emily wasn't coming.
Is this dementia?
Or is this her normal, controlling personality coming through loud and clear?
She still manages to manipulate me and Emily into feeling guilty and doing most of what she wants done. That was true twenty years ago and is still true today.
Maybe she's not the crazy one--we are.
Monday, October 17, 2005
Baking Rolls at 4 am
The call came at 4:11 am: "Your mom is upset--can you talk to her?"
I lept out of bed, taking the phone to another room to minimize the disturbance to John, who was trying to sleep through the event.
"Hi, Mom. What are you doing?"
"I need to take the rolls out of the oven, but this lady won't let me. She says it's a nightmare, and I guess it is, but she won't let me check."
"What oven? If you were baking cinnamon rolls, you would be baking them in my oven, here at my house. Were you baking them here, for us?"
"No, I'm a volunteer. I was making them for a bunch of children."
"Mom, there's no oven on your floor. The food is cooked on the first floor and brought up--"
"I just want to go down there and check on them but she won't let me."
"But Mom, you're in bed. It's 4 am. If you got up and went all the way down to the first floor, you'd have more trouble getting back to sleep."
"They're going to burn. When it starts to smell up here, they'd better go down and have the police turn it off, or it could burn up the whole place."
"Mom! It's a nightmare."
"Yeah, this lady thinks I'm crazy."
"You're not crazy. You have an illness that gives you these nightmares. Your brain does things in dreams that seem real, but you're just dreaming. You had too much excitement yesterday, shopping at Macy's and going to that movie. And tomorrow you are going to wear the new lavender silky blouse we bought. Isn't that a cute blouse?"
"Yes, I like that blouse. I like going shopping."
"You need to get your sleep so you can get up tomorrow and wear that lavender outfit and get your hair done. Can you take a drink of orange juice or V-8 or something and try to go back to sleep?"
"Okay, I guess I can."
"I'll come see you tomorrow afternoon."
"What time?"
"I'll come about 3 pm or 4 pm."
"Okay."
"Goodnight."
I went back to bed and lay awake for three quarters of an hour, wondering if Racquel had been able to calm Mom down, if I should stop taking her to stimulating events like movies, if Jona was already up and on her way to start her work with Mom at 6 am.
I lept out of bed, taking the phone to another room to minimize the disturbance to John, who was trying to sleep through the event.
"Hi, Mom. What are you doing?"
"I need to take the rolls out of the oven, but this lady won't let me. She says it's a nightmare, and I guess it is, but she won't let me check."
"What oven? If you were baking cinnamon rolls, you would be baking them in my oven, here at my house. Were you baking them here, for us?"
"No, I'm a volunteer. I was making them for a bunch of children."
"Mom, there's no oven on your floor. The food is cooked on the first floor and brought up--"
"I just want to go down there and check on them but she won't let me."
"But Mom, you're in bed. It's 4 am. If you got up and went all the way down to the first floor, you'd have more trouble getting back to sleep."
"They're going to burn. When it starts to smell up here, they'd better go down and have the police turn it off, or it could burn up the whole place."
"Mom! It's a nightmare."
"Yeah, this lady thinks I'm crazy."
"You're not crazy. You have an illness that gives you these nightmares. Your brain does things in dreams that seem real, but you're just dreaming. You had too much excitement yesterday, shopping at Macy's and going to that movie. And tomorrow you are going to wear the new lavender silky blouse we bought. Isn't that a cute blouse?"
"Yes, I like that blouse. I like going shopping."
"You need to get your sleep so you can get up tomorrow and wear that lavender outfit and get your hair done. Can you take a drink of orange juice or V-8 or something and try to go back to sleep?"
"Okay, I guess I can."
"I'll come see you tomorrow afternoon."
"What time?"
"I'll come about 3 pm or 4 pm."
"Okay."
"Goodnight."
I went back to bed and lay awake for three quarters of an hour, wondering if Racquel had been able to calm Mom down, if I should stop taking her to stimulating events like movies, if Jona was already up and on her way to start her work with Mom at 6 am.
Sunday, October 16, 2005
Remembering the Fifties
I took Mom to see The Prize Winner of Defiance, Ohio, today after church. It's part of my campaign to give both of us something interesting to do on Sundays when I am her caregiver from 8 am to 6 pm.
We had a lunch of canned tamales and raisin toast before driving to the Beverly Center, where it was showing. Parking and getting up the elevator to the eighth floor was exciting because AIDS Walk 2005 had just ended nearby, but we navigated the crowds and bought two matinee tickets for $13.50.
Mom just wanted to go to Macy's and Bloomingdale's, not a movie. It's not often she gets to wheel past so many sparkling store windows.
"You'll like this movie," I said. "It's about a mother with ten kids who has to raise them by herself."
Having just watched Good Night and Good Luck, I wasn't sure I'd like another film about the pre-feminist, smothering '50 years, but I figured it was right up her alley, kind of an updated Please Don't Eat the Daisies.
"I don't know what's so special about her--I had four kids and raised them," she said.
Then she announced, "I want potato chips" as I bought a cranberry drink for her and a lemonade for me. I knew she meant popcorn or French fries, but I managed to steer her past all temptations and into the theater, just at the end of the previews. She is only allowed soft, moist foods, and I didn't feel like breaking the rules and dealing with a possible airway emergency during the film.
As it turned out, she got through the whole two hours uneventfully, other than some mild choking on the cranberry juice, and she stayed awake, even though her afternoon are usually devoted to naps. After I convinced her not to talk during the show, she sat there alert, rapt the whole time. (Two weeks ago, she began asking to leave March of the Penguins half-way through the 95 minutes, but not today.)
As for me, I hardly remembered she was with me.
It turned out that the heroine was named Evelyn, slim and dark-haired as Mom had been, and her husband was alcoholic. After the first scene of him drinking, throwing things out the back door, and bashing the brand-new freezer Evelyn had won in a jingle contest, I regressed to about ten years old and sat there in paralyzed fear, hating him and wanting her to divorce him or at least get the deed to the house changed to her name, not his.
I had lived through this whole scenario, the oldest of four children watching Mom cope with Pop's alcoholism, and I knew that the film was a true story based on a memoir by one of the daughters, Terry Ryan.
Afterward I asked Mom how she liked the movie.
"I saw some similarities," she said. Pretty sharp for someone who can't even remember the names of all her children.
And we were off to Macy's, Bloomingdale's, and back to Ocean View by 5:30 pm. On the way home, Mom got her French fries.
We had a lunch of canned tamales and raisin toast before driving to the Beverly Center, where it was showing. Parking and getting up the elevator to the eighth floor was exciting because AIDS Walk 2005 had just ended nearby, but we navigated the crowds and bought two matinee tickets for $13.50.
Mom just wanted to go to Macy's and Bloomingdale's, not a movie. It's not often she gets to wheel past so many sparkling store windows.
"You'll like this movie," I said. "It's about a mother with ten kids who has to raise them by herself."
Having just watched Good Night and Good Luck, I wasn't sure I'd like another film about the pre-feminist, smothering '50 years, but I figured it was right up her alley, kind of an updated Please Don't Eat the Daisies.
"I don't know what's so special about her--I had four kids and raised them," she said.
Then she announced, "I want potato chips" as I bought a cranberry drink for her and a lemonade for me. I knew she meant popcorn or French fries, but I managed to steer her past all temptations and into the theater, just at the end of the previews. She is only allowed soft, moist foods, and I didn't feel like breaking the rules and dealing with a possible airway emergency during the film.
As it turned out, she got through the whole two hours uneventfully, other than some mild choking on the cranberry juice, and she stayed awake, even though her afternoon are usually devoted to naps. After I convinced her not to talk during the show, she sat there alert, rapt the whole time. (Two weeks ago, she began asking to leave March of the Penguins half-way through the 95 minutes, but not today.)
As for me, I hardly remembered she was with me.
It turned out that the heroine was named Evelyn, slim and dark-haired as Mom had been, and her husband was alcoholic. After the first scene of him drinking, throwing things out the back door, and bashing the brand-new freezer Evelyn had won in a jingle contest, I regressed to about ten years old and sat there in paralyzed fear, hating him and wanting her to divorce him or at least get the deed to the house changed to her name, not his.
I had lived through this whole scenario, the oldest of four children watching Mom cope with Pop's alcoholism, and I knew that the film was a true story based on a memoir by one of the daughters, Terry Ryan.
Afterward I asked Mom how she liked the movie.
"I saw some similarities," she said. Pretty sharp for someone who can't even remember the names of all her children.
And we were off to Macy's, Bloomingdale's, and back to Ocean View by 5:30 pm. On the way home, Mom got her French fries.
Friday, October 14, 2005
Vampires That Come in the Night
What would you do if you woke up in your own bed and someone was there trying to take your blood?
This is the situation Mom now faces. She is back on Coumadin and her blood coagulation levels have to be checked every two weeks. I could take her to a lab to have this done, but in an attempt to avoid one more medical visit, I asked Ocean View to do it. They hired a lab that sends people out to draw the blood, and apparently the most convenient time for these people is shortly after 5 am.
Someone with a normally functioning brain might be able to wake up, listen to the explanation for the visit, and face the finger prick with a minimum amount of trepidation. Might be able.
But not someone with Lewy Body Dementia. Just waking up is a problem--that is, distinguishing between whether the events taking place are a nightmare or reality. Add to that the difficulty of enough mental acuity to absorb the explanation and enough courage to face yet another of the dozens of finger pricks and IV insertions she has endured in the past month, when she had surgery to have a pacemaker implanted.
When I visited her today, I asked if the people had come by yet to check her prothrombin time.
"I think they came," Mom said, "but I don't know if I was dreaming or not."
"Yes, they came at 5:40 am," said Jona. "Connie wrote it down in her night report."
"Oh no," I said. "They came while it was still dark? That's the second time they came that early. Sorry about that, Mom. A little scary, isn't it!"
"I don't like them to come at all. I don't want my finger pricked," she said.
And I remembered the time in December of 2004 when the night visit of a man taking blood had precipitated a mental breakdown. We had just moved Mom from Colorado into assisted living near Emily in Mission Viejo. She had been in her apartment there about two weeks when she reported being raped in the night.
"No, you must have dreamed it," we assured her. "No one would come in and bother you here in the middle of the night."
But her agitation continued, and the next night she got up at 3 am or so and sat in the middle of her floor sorting old papers and letters. When the caregiver came in at 7 am to dress her and take her to breakfast, she refused to be interrupted. Soon she was hitting and kicking the caregiver, who persisted in trying to get her ready because she had a lot of people to get to breakfast by 7:30 am.
Before we were notified, Mom had been 5150'd. The police had come and carried her away on a stretcher.
At this point we looked into what had happened the day before, and yes, a man had come into her room to do a blood test in the pre-dawn hours.
To Mom, being approached by a lone man as she lay in her nightgown asleep in bed in her apartment was terrifying. Most likely it was not a rape, but it might as well have been, given the fragile state of her mind.
Somehow, after her brush with the police, we managed to get her released back to assisted living instead of to a geriatric mental hospital. We cancelled the in-house blood tests and took her to the lab ourselves to have her coagulation times checked.
Later she was taken off Coumadin, but now after a pulmonary embolism, she is back onto an anti-coagulation program--and back in the hands of the vampires.
Once again our choices are either to get them to change the hour of their visits or to take her to the lab ourselves.
This is the situation Mom now faces. She is back on Coumadin and her blood coagulation levels have to be checked every two weeks. I could take her to a lab to have this done, but in an attempt to avoid one more medical visit, I asked Ocean View to do it. They hired a lab that sends people out to draw the blood, and apparently the most convenient time for these people is shortly after 5 am.
Someone with a normally functioning brain might be able to wake up, listen to the explanation for the visit, and face the finger prick with a minimum amount of trepidation. Might be able.
But not someone with Lewy Body Dementia. Just waking up is a problem--that is, distinguishing between whether the events taking place are a nightmare or reality. Add to that the difficulty of enough mental acuity to absorb the explanation and enough courage to face yet another of the dozens of finger pricks and IV insertions she has endured in the past month, when she had surgery to have a pacemaker implanted.
When I visited her today, I asked if the people had come by yet to check her prothrombin time.
"I think they came," Mom said, "but I don't know if I was dreaming or not."
"Yes, they came at 5:40 am," said Jona. "Connie wrote it down in her night report."
"Oh no," I said. "They came while it was still dark? That's the second time they came that early. Sorry about that, Mom. A little scary, isn't it!"
"I don't like them to come at all. I don't want my finger pricked," she said.
And I remembered the time in December of 2004 when the night visit of a man taking blood had precipitated a mental breakdown. We had just moved Mom from Colorado into assisted living near Emily in Mission Viejo. She had been in her apartment there about two weeks when she reported being raped in the night.
"No, you must have dreamed it," we assured her. "No one would come in and bother you here in the middle of the night."
But her agitation continued, and the next night she got up at 3 am or so and sat in the middle of her floor sorting old papers and letters. When the caregiver came in at 7 am to dress her and take her to breakfast, she refused to be interrupted. Soon she was hitting and kicking the caregiver, who persisted in trying to get her ready because she had a lot of people to get to breakfast by 7:30 am.
Before we were notified, Mom had been 5150'd. The police had come and carried her away on a stretcher.
At this point we looked into what had happened the day before, and yes, a man had come into her room to do a blood test in the pre-dawn hours.
To Mom, being approached by a lone man as she lay in her nightgown asleep in bed in her apartment was terrifying. Most likely it was not a rape, but it might as well have been, given the fragile state of her mind.
Somehow, after her brush with the police, we managed to get her released back to assisted living instead of to a geriatric mental hospital. We cancelled the in-house blood tests and took her to the lab ourselves to have her coagulation times checked.
Later she was taken off Coumadin, but now after a pulmonary embolism, she is back onto an anti-coagulation program--and back in the hands of the vampires.
Once again our choices are either to get them to change the hour of their visits or to take her to the lab ourselves.
Wednesday, October 12, 2005
Zen and the Art of Wheelchair Maintenance
Most wheelchairs occupied by seniors don't leave the building where the person lives.
Family, physical therapists, doctors, nurses, even shrinks come to the residence. At most the wheelchair gets to the patio or around the block, so it rarely needs repair.
But Mom's wheelchair had an exciting life, thrown into the back of a van almost daily, wheeling all over Santa Irena--until today, when its wheel fell off.
Emily, Jona, and Mom were a few blocks from Ocean View, taking a walk, when Emily noticed the wheelchair wobbling a little. Then a lot.
Then the left wheel came off the axle, and Mom would have been dumped out if Emily had not been there and caught the collapsing wheelchair.
Family, physical therapists, doctors, nurses, even shrinks come to the residence. At most the wheelchair gets to the patio or around the block, so it rarely needs repair.
But Mom's wheelchair had an exciting life, thrown into the back of a van almost daily, wheeling all over Santa Irena--until today, when its wheel fell off.
Emily, Jona, and Mom were a few blocks from Ocean View, taking a walk, when Emily noticed the wheelchair wobbling a little. Then a lot.
Then the left wheel came off the axle, and Mom would have been dumped out if Emily had not been there and caught the collapsing wheelchair.
~
Note 1: Emily visits once a week; Jona goes out pushing Mom in the wheelchair every day. By the grace of God, the wheel fell off with Emily right there to help.
~
Note 2: Bill doesn't want Mom on Coumadin because Mom might fall, and any head injury with thin blood can result in fatal bleeding.
"She can't fall," I keep telling him. "She's in a wheelchair with a caregiver 24/7."
"Yesterday I did surgery on someone who was knocked out of a wheelchair and hurt. There was internal bleeding everywhere--it was a complete mess."
"She won't fall out of the wheelchair," I told him. But now, a few days later, it almost happened.
"She can't fall," I keep telling him. "She's in a wheelchair with a caregiver 24/7."
"Yesterday I did surgery on someone who was knocked out of a wheelchair and hurt. There was internal bleeding everywhere--it was a complete mess."
"She won't fall out of the wheelchair," I told him. But now, a few days later, it almost happened.
~
Anyway, Emily pushed the wheel back on and for the next two blocks managed to walk alongside Jona and Mom, holding the wheel on and calling me on her cell phone.
"The wheel came off--can you call the rental company and get them to replace it? We have to have a new wheelchair immediately."
I didn't see how this was going to work. New wheelchairs do not arrive immediately, especially when you call at 4:30 pm. I had placed a few calls to OxyTech in the last three days trying to arrange a repair, and there had been no reply to my message.
"Emily, we should just buy a new one," I countered
We debated the issue as the injured wheelchair rolled on, held up by Emily.
Finally she and Jona got Mom back to Ocean View and up to the third-floor dining room.
"I need to go to the bathroom," Mom demanded.
"No," said Emily and Jona. After any outdoor trip, we return to her room and the toilet, but not this time.
Emily ran to the parking garage and showed up at the medical equipment store at 4:55 pm.
"We're closing," announced Frank, the patient, perennially cheerful salesman.
"I need a wheelchair," Emily countered, and within five minutes the deal was made.
She walked out with a shiny new titanium blue "companion chair" with four small wheels, costing $350. "Companion" means Mom can't push it by herself, using her arms; there are no big wheels. This is okay because she is pretty much beyond self-locomotion and because the brakes are on the two rear wheels, easily locked and unlocked by someone pushing her.
"The wheel came off--can you call the rental company and get them to replace it? We have to have a new wheelchair immediately."
I didn't see how this was going to work. New wheelchairs do not arrive immediately, especially when you call at 4:30 pm. I had placed a few calls to OxyTech in the last three days trying to arrange a repair, and there had been no reply to my message.
"Emily, we should just buy a new one," I countered
We debated the issue as the injured wheelchair rolled on, held up by Emily.
Finally she and Jona got Mom back to Ocean View and up to the third-floor dining room.
"I need to go to the bathroom," Mom demanded.
"No," said Emily and Jona. After any outdoor trip, we return to her room and the toilet, but not this time.
Emily ran to the parking garage and showed up at the medical equipment store at 4:55 pm.
"We're closing," announced Frank, the patient, perennially cheerful salesman.
"I need a wheelchair," Emily countered, and within five minutes the deal was made.
She walked out with a shiny new titanium blue "companion chair" with four small wheels, costing $350. "Companion" means Mom can't push it by herself, using her arms; there are no big wheels. This is okay because she is pretty much beyond self-locomotion and because the brakes are on the two rear wheels, easily locked and unlocked by someone pushing her.
~
Note 3: Maintenance of the old wheelchair was a full-time job. It had arrived on October 1 a year ago, when Mom moved to Ocean View Assisted Living from the skilled nursing facility where she had done rehab after breaking her left hip, undergoing surgery, and spending ten days in the hospital.
We had planned to buy a wheelchair, but the SNF staff told us that they would measure her and order the right one through Medicare at no cost to us.
Within a day or two we rolled out the door with a free wheelchair, as promised, but after a few weeks the brake mechanism was loose. When the brakes were on, the wheels would still slide backwards a few inches while Mom transferred into it from a chair or toilet.
I became good friends with Jeff from OxyTech, who usually showed up within a day after I called for a repair. It turned out that we had a rent-to-own plan, so he was obligated to maintain the chair. Usually a few adjustments with his tools did the job, but then the leg rests got bent and were hard to take on and off; finally one had to be replaced.
Sometimes when a repairs were needed on a holiday weekend, I took out a wrench and screwdriver, trying to do it myself. That was hopeless.
A few months ago I called for a repair involving both the leg rests and some plastic part under the seat that had broken.
"How could you break this?" asked Jeff when he saw it. "I've never seen this break before. I'll just have to replace the whole chair."
I refused to feel guilty. "We go out in the van almost every day, and I'm not strong enough to lift it gently into my van. I just kind of heave it in."
What I didn't say was, "At least she goes out--the other people who rent your chairs probably never leave a 300 square foot area."
Almost no one from the Reminiscence Neighborhood ever leaves, even for the afternoon. Out of 28 people, maybe 4-5 go out with family members or on bus excursions, and those are not the ones in wheelchairs.
We had planned to buy a wheelchair, but the SNF staff told us that they would measure her and order the right one through Medicare at no cost to us.
Within a day or two we rolled out the door with a free wheelchair, as promised, but after a few weeks the brake mechanism was loose. When the brakes were on, the wheels would still slide backwards a few inches while Mom transferred into it from a chair or toilet.
I became good friends with Jeff from OxyTech, who usually showed up within a day after I called for a repair. It turned out that we had a rent-to-own plan, so he was obligated to maintain the chair. Usually a few adjustments with his tools did the job, but then the leg rests got bent and were hard to take on and off; finally one had to be replaced.
Sometimes when a repairs were needed on a holiday weekend, I took out a wrench and screwdriver, trying to do it myself. That was hopeless.
A few months ago I called for a repair involving both the leg rests and some plastic part under the seat that had broken.
"How could you break this?" asked Jeff when he saw it. "I've never seen this break before. I'll just have to replace the whole chair."
I refused to feel guilty. "We go out in the van almost every day, and I'm not strong enough to lift it gently into my van. I just kind of heave it in."
What I didn't say was, "At least she goes out--the other people who rent your chairs probably never leave a 300 square foot area."
Almost no one from the Reminiscence Neighborhood ever leaves, even for the afternoon. Out of 28 people, maybe 4-5 go out with family members or on bus excursions, and those are not the ones in wheelchairs.
~
After the purchase I called Jeff to tell him we had bought a new wheelchair and needed to end our rental contract. When he arrived to pick up the broken chair, I raised the issue of money--we had rented for a year. Didn't we own a chair by now? Maybe he owed us a working wheelchair.
"We didn't make any profit on this one," he said. "There were so many repairs, and it's the second one I gave you. This chair can't be repaired--I'll have to junk it."
"We didn't make any profit on this one," he said. "There were so many repairs, and it's the second one I gave you. This chair can't be repaired--I'll have to junk it."
"Okay," I conceded. "But I want a statement of how much we have paid, through Medicare and Blue Cross, and what the total cost of the chair was, and when we would have finished renting it and just owned it."
Jeff agreed to send a statement, and meanwhile I began calculating: 13 months with Medicare paying $59.52 per month and Blue Cross Blue Shield paying $14.88. Apparently Oxytech had received $74.40 per month, a total of $967.20, after billing $105 per month or $1365.
Was the chair's original price that much? I doubt it.
At any rate, Mom now rides in a simpler chair, with smaller wheels, arm rests that don't allow her chair to slip under a dining room table, and leg rests that do not adjust the angle at which they're inclined. It was neither the cheapest chair ($250) nor the most expensive--but it's probably what we should have done in the first place.
Tuesday, October 11, 2005
Fluctuation in Levels of Responsiveness
Last January I didn't much notice the line in the neurologist's report about "fluctuation in levels of responsiveness, most likely related to underlying dementia process, such as Lewy Body dementia."
I knew it was a reference to a time when Mom had leaned forward in her chair and been unresponsive for a couple of minutes while my sister was with her, frantically trying to revive her. Another time I had witnessed a milder, briefer moment when Mom's eyes were fixed, her face unchanging until she suddenly returned to full consciousness.
But it didn't occur to me that these spells would become longer and more frequent.
In the last month they have occurred twice--once on September 10 during the Bingo game, when her blood pressure, drooling, paleness, and clamminess seemed to point toward a pause in her heartbeat--and once on September 23, when she self-diagnosed, "Oh, I'm dead."
That time the leading theories were 1) a Lewy Body event, 2) a petit mal seizure, and 3) a TIA (transient ischemic attack).
Today the question was whether to increase her anti-seizure medication, on the theory that the event might have been an absence seizure. If it was a TIA, the newly started anti-coagulation program should take care of it.
Emily and I are betting that the checking-out was one of these Lewy Body "fluctuations in levels of responsiveness." Dr. Susan C. called to discuss it, and we decided not to increase the Keppra. Psychtropic meds and neuroleptic tranquilizer drugs make Mom really sleepy. "Extreme sensitivity to antipsychotic agents" is a symptom of Lewy Body dementia, and treatment with them doubles the rate of cognitive decline, according to an article in Postgraduate Medicine by Jonathan T. Stewart (vol. 113, May 2003).
The neurologist, Dr. Claudia K., had noted last January that "given Mrs. E's history of intolerance of neuroleptics, it might also be expected that she would have difficulty tolerating seizure medications as well."
But what can you do? She had seizures last June when her throat was blocked, and sleepy or not, she's been on anti-seizure meds ever since.
At least we are now expecting more of these unconscious episodes, and all of us are less likely to panic than we were a month ago.
The NINDS description of Lewy Body mentions "loss of, or fluctuating, cognition." Another article lists "fluctuating arousal and/or cognition" as a symptom. Stewart notes "unexplained loss of consciousness and falls."
We're keeping this in mind. The next time she loses consciousness and can't be roused, we will not panic or call for paramedics. If her blood pressure and pulse are okay, we'll just wait for the Lewy Body event to end.
I knew it was a reference to a time when Mom had leaned forward in her chair and been unresponsive for a couple of minutes while my sister was with her, frantically trying to revive her. Another time I had witnessed a milder, briefer moment when Mom's eyes were fixed, her face unchanging until she suddenly returned to full consciousness.
But it didn't occur to me that these spells would become longer and more frequent.
In the last month they have occurred twice--once on September 10 during the Bingo game, when her blood pressure, drooling, paleness, and clamminess seemed to point toward a pause in her heartbeat--and once on September 23, when she self-diagnosed, "Oh, I'm dead."
That time the leading theories were 1) a Lewy Body event, 2) a petit mal seizure, and 3) a TIA (transient ischemic attack).
Today the question was whether to increase her anti-seizure medication, on the theory that the event might have been an absence seizure. If it was a TIA, the newly started anti-coagulation program should take care of it.
Emily and I are betting that the checking-out was one of these Lewy Body "fluctuations in levels of responsiveness." Dr. Susan C. called to discuss it, and we decided not to increase the Keppra. Psychtropic meds and neuroleptic tranquilizer drugs make Mom really sleepy. "Extreme sensitivity to antipsychotic agents" is a symptom of Lewy Body dementia, and treatment with them doubles the rate of cognitive decline, according to an article in Postgraduate Medicine by Jonathan T. Stewart (vol. 113, May 2003).
The neurologist, Dr. Claudia K., had noted last January that "given Mrs. E's history of intolerance of neuroleptics, it might also be expected that she would have difficulty tolerating seizure medications as well."
But what can you do? She had seizures last June when her throat was blocked, and sleepy or not, she's been on anti-seizure meds ever since.
At least we are now expecting more of these unconscious episodes, and all of us are less likely to panic than we were a month ago.
The NINDS description of Lewy Body mentions "loss of, or fluctuating, cognition." Another article lists "fluctuating arousal and/or cognition" as a symptom. Stewart notes "unexplained loss of consciousness and falls."
We're keeping this in mind. The next time she loses consciousness and can't be roused, we will not panic or call for paramedics. If her blood pressure and pulse are okay, we'll just wait for the Lewy Body event to end.
Monday, October 10, 2005
A Good Hair Day
I rush over to visit Mom as soon as possible Monday morning, expecting her to be sitting in her recliner, bored and self-pitying.
Instead she is in the residence Beauty Salon, happily chatting with Elisa, who is putting rollers into her hair as Jona sits nearby reading the newspaper.
"Hi, Mom--I'm back," I announce.
"Oh, let me see your face," she says. She doesn't turn her neck easily any more, either to the side or to look up, and she has to see me to be sure I am really here.
I kneel beside her to get my face within her line of vision. Like a baby, she is reassured by seeing my face.
"You were gone so long," she says.
"Yeah, four whole days," I say with sarcastic emphasis.
"Well, it was long to me."
When her hair is all in rollers, we transfer her to her wheelchair and put her head under a hairdryer.
She's happy and busy, so I leave, promising to return later. She doesn't need me now.
Instead she is in the residence Beauty Salon, happily chatting with Elisa, who is putting rollers into her hair as Jona sits nearby reading the newspaper.
"Hi, Mom--I'm back," I announce.
"Oh, let me see your face," she says. She doesn't turn her neck easily any more, either to the side or to look up, and she has to see me to be sure I am really here.
I kneel beside her to get my face within her line of vision. Like a baby, she is reassured by seeing my face.
"You were gone so long," she says.
"Yeah, four whole days," I say with sarcastic emphasis.
"Well, it was long to me."
When her hair is all in rollers, we transfer her to her wheelchair and put her head under a hairdryer.
She's happy and busy, so I leave, promising to return later. She doesn't need me now.
Sunday, October 09, 2005
Abandonment
I was going out of town for four days, spending time on Santa Catalina Island with some women friends.
The plans for Mom's care and amusement during these four days were elaborate. In addition to the staff at Ocean View, Mom's personal caregivers would show up regularly, changing shifts every twelve hours.
To top it off, my brother Jim was flying in from Denver. He spent time in Mom's room, took her to Denny's on Thursday, and toured the Getty Museum with her and Jona on Friday. She had a great time.
On Saturday our sister Emily visited Mom, doing some physical therapy with her.
But still Mom asked about me, noted that I was absent. I called her on Thursday and Friday, asking how she was doing and reminding her where I was.
On Sunday morning John discovered an angry message on our phone machine:
"This is your Mother! I thought we were going to church today. When are you going to see me? I'm very worried about it. I'm not on your list any more, I guess. Good-bye. Leave a message."
He called Mom and explained: "Anne's not home... She's in Santa Catalina this weekend with her friends. She'll be back tomorrow."
"Okay," she said. But she felt abandoned, and tomorrow was as far away as the moon.
The plans for Mom's care and amusement during these four days were elaborate. In addition to the staff at Ocean View, Mom's personal caregivers would show up regularly, changing shifts every twelve hours.
To top it off, my brother Jim was flying in from Denver. He spent time in Mom's room, took her to Denny's on Thursday, and toured the Getty Museum with her and Jona on Friday. She had a great time.
On Saturday our sister Emily visited Mom, doing some physical therapy with her.
But still Mom asked about me, noted that I was absent. I called her on Thursday and Friday, asking how she was doing and reminding her where I was.
On Sunday morning John discovered an angry message on our phone machine:
"This is your Mother! I thought we were going to church today. When are you going to see me? I'm very worried about it. I'm not on your list any more, I guess. Good-bye. Leave a message."
He called Mom and explained: "Anne's not home... She's in Santa Catalina this weekend with her friends. She'll be back tomorrow."
"Okay," she said. But she felt abandoned, and tomorrow was as far away as the moon.
Tuesday, October 04, 2005
Almost a Day Off
Emily was going to visit Mom today, so I expected a day off--a whole day to get things done without having to go to Ocean View. After four hours of making a doctor visit last Friday, three hours of taking her on errands Saturday, ten hours of care on Sunday, and five hours of doctor visiting on Monday, I was ready for a day off.
But Jona, her caregiver 12 hours a day, six days a week, wasn't feeling well. (How does she manage to keep up these hours, showing up every day at 6 am, always cheerful and kind? I don't know.)
Anyway, Jona told the agency she would not be coming to work Tuesday, and the substitute caregiver wasn't available.
That meant Emily's visit in the afternoon was critical; the morning and early afternoon would be shared between me and the Ocean View staff.
I decided not to call and see how things were going--just to stop by about noon. But at 11:15 am I got an anxious call from Mom.
"Hi, Mom. How are you?"
"Awful. I'm having a terrible day. They wouldn't let me come back to my room, but now I'm back here and this lady called you for me, but I can't find your phone number. What's your phone number?"
"It's because you don't have Jona today, Mom. That's why you had to stay out in the common area after breakfast."
I quoted my phone number and promised to come soon. Clearly Mom was having a difficult time just sitting out with the other residents, not having her own caregiver to talk with and to attend to her every need.
By noon I arrived with a pumpkin, a newspaper, and photos of the twins with the doll buggy.
She fell asleep about the time I arrived, but I woke her and took her to lunch. At 1 pm I left, promising her that Emily would arrive soon.
"Maybe now you'll appreciate Jona," I teased. "You keep firing the caregivers, but maybe now you'll appreciate having someone at your beck and call all day long."
Emily showed up.
The evening caregiver, Connie, showed up. I called at 6:15 pm to make sure.
Will Jona be able to make it to work tomorrow?
I feel guilty for asking her to work these long hours... but I completely depend on her to keep Mom happy for most of the day, six days per week.
The alternative would be three caregivers per 24 hours, each with an eight-hour shift, instead of two with a twelve-hour shift, but Jona seems satisfied with the long shift because of the higher income.
Jona's an immigrant from the Philippines, having completed a couple of years of college in computers before coming here. After watching her care for Mom during the past year, I feel as if she's another daughter; I should be sending her off to college, like Roz, Ellen, and Marie, rather than employing her to sit with my mother all day six days per week.
But instead I'm just hoping she'll show up tomorrow.
But Jona, her caregiver 12 hours a day, six days a week, wasn't feeling well. (How does she manage to keep up these hours, showing up every day at 6 am, always cheerful and kind? I don't know.)
Anyway, Jona told the agency she would not be coming to work Tuesday, and the substitute caregiver wasn't available.
That meant Emily's visit in the afternoon was critical; the morning and early afternoon would be shared between me and the Ocean View staff.
I decided not to call and see how things were going--just to stop by about noon. But at 11:15 am I got an anxious call from Mom.
"Hi, Mom. How are you?"
"Awful. I'm having a terrible day. They wouldn't let me come back to my room, but now I'm back here and this lady called you for me, but I can't find your phone number. What's your phone number?"
"It's because you don't have Jona today, Mom. That's why you had to stay out in the common area after breakfast."
I quoted my phone number and promised to come soon. Clearly Mom was having a difficult time just sitting out with the other residents, not having her own caregiver to talk with and to attend to her every need.
By noon I arrived with a pumpkin, a newspaper, and photos of the twins with the doll buggy.
She fell asleep about the time I arrived, but I woke her and took her to lunch. At 1 pm I left, promising her that Emily would arrive soon.
"Maybe now you'll appreciate Jona," I teased. "You keep firing the caregivers, but maybe now you'll appreciate having someone at your beck and call all day long."
Emily showed up.
The evening caregiver, Connie, showed up. I called at 6:15 pm to make sure.
Will Jona be able to make it to work tomorrow?
I feel guilty for asking her to work these long hours... but I completely depend on her to keep Mom happy for most of the day, six days per week.
The alternative would be three caregivers per 24 hours, each with an eight-hour shift, instead of two with a twelve-hour shift, but Jona seems satisfied with the long shift because of the higher income.
Jona's an immigrant from the Philippines, having completed a couple of years of college in computers before coming here. After watching her care for Mom during the past year, I feel as if she's another daughter; I should be sending her off to college, like Roz, Ellen, and Marie, rather than employing her to sit with my mother all day six days per week.
But instead I'm just hoping she'll show up tomorrow.
Monday, October 03, 2005
"You Left Me"
We had just completed a doctor visit--driving to the office building, waiting in the lobby, having weight and blood pressure checked, seeing the doctors, and having blood drawn.
And then I remembered: we had to sign up for the Coumadin Clinic.
I asked a receptionist about it, and she directed me back to another room.
"You can just leave your mother here," she said. "The room you're going to is so small."
"Okay," I said. "Mom, can you just wait here in the lobby? There aren't any magazines, but can you just wait a few minutes?"
"Of course," she said. "No problem."
So I disappeared through the swinging door and talked to the clinic manager for about two minutes.
But then Mom appeared next to me, flustered, anxious, being pushed in her wheelchair by the receptionist.
"You left me there! Why did you leave me?"
"It's okay, Mom," I explained. "I just had to talk to this lady. I'm done now. We can go home."
We went to get a V-8, stop at the dry cleaners, and drive back to Ocean View.
And then I remembered: we had to sign up for the Coumadin Clinic.
I asked a receptionist about it, and she directed me back to another room.
"You can just leave your mother here," she said. "The room you're going to is so small."
"Okay," I said. "Mom, can you just wait here in the lobby? There aren't any magazines, but can you just wait a few minutes?"
"Of course," she said. "No problem."
So I disappeared through the swinging door and talked to the clinic manager for about two minutes.
But then Mom appeared next to me, flustered, anxious, being pushed in her wheelchair by the receptionist.
"You left me there! Why did you leave me?"
"It's okay, Mom," I explained. "I just had to talk to this lady. I'm done now. We can go home."
We went to get a V-8, stop at the dry cleaners, and drive back to Ocean View.
Sunday, October 02, 2005
A Happy Day
"I should just die and go be with Kermit," Mom says every now and then, when she starts to reflect on her quality of life.
She hates not having control over her life or her own body--having to wait for someone to take her to the bathroom, having to wear Depends taken off and put on by a caregiver, not being able to drive a car or travel to visit her home in Boulder or her family cabin near Telluride, Colorado.
She was hospitalized for a week last June and again in September, each time losing more of her strength and mobility. During July and August her diet was restricted to pureed foods because her swallowing was judged not good enough for even soft, chewy foods. Potato chips and popcorn have been forbidden for almost a year.
But she finds pleasure and laughter in various things every day, and occasionally she has a great day. One of those days was today.
I had planned a special treat: letting her watch me make cinnamon rolls, the way she had done for her four children fifty years ago. I set the dough to rise before I went to pick her up.
For the first time since August, we went to church. She was not in the hospital and I was in town, available to manage her and the wheelchair.
Then for the first time in a few years, I took her to see a movie. We watched March of the Penguins, and her main comment was right on target: what about the people who filmed it? How did they cope with the cold weather and conditions? She was ready to leave about halfway through, but probably no sooner than most other viewers.
Afterward we bought Panda Express meals for lunch and took them to my house. I wheeled her up the new ramp to the front door and installed her at the kitchen table, where she ate two pieces of cinnamon raisin toast for dessert, while watching me punch down the dough for the cinnamon rolls, roll it out, sprinkle it with cinnamon and sugar, and place the cut rolls in a pan to rise.
She was falling asleep by that point, so after a difficult bathroom trip, I helped her into a recliner for a nap.
Before she could fall asleep, however, John's sister Lee dropped by with Leo and their three-year-old twins, Juliette and Jacqueline. The girls remembered the antique doll buggy they had played with last time--which had belonged to Grandma when she was their age, early in the 1920s. Soon we were all sitting in the back yard watching them push the buggy and rearrange the covers on the doll.
Mom--aka Grandma Gussie--was delighted. She was able to keep up with the limited kinds of conversation that occur around that kind of event. Elegantly dressed in her best Jones New York pink tailored coat and flowered rayon skirt and blouse, she made perfect sense. One would never have suspected she had any dementia.
"You should curl their hair," she told Lee. "I had curls when I was their age. I can show you how to do it--you take the hair like this and wrap it around a rag and then wrap the rag back around it and tie it."
When Leo gave each of the twins a turn at being held upside down, Lee and Grandma expressed equal dismay: "Don't do that! You might drop her."
We all ate cinnamon rolls hot out of the oven with milk.
And then the twins were put in their carseats and taken home; Grandma was wheeled back to the car and driven back to the secure floor of Ocean View Assisted Living.
She was tired, but she had had a happy day.
She hates not having control over her life or her own body--having to wait for someone to take her to the bathroom, having to wear Depends taken off and put on by a caregiver, not being able to drive a car or travel to visit her home in Boulder or her family cabin near Telluride, Colorado.
She was hospitalized for a week last June and again in September, each time losing more of her strength and mobility. During July and August her diet was restricted to pureed foods because her swallowing was judged not good enough for even soft, chewy foods. Potato chips and popcorn have been forbidden for almost a year.
But she finds pleasure and laughter in various things every day, and occasionally she has a great day. One of those days was today.
I had planned a special treat: letting her watch me make cinnamon rolls, the way she had done for her four children fifty years ago. I set the dough to rise before I went to pick her up.
For the first time since August, we went to church. She was not in the hospital and I was in town, available to manage her and the wheelchair.
Then for the first time in a few years, I took her to see a movie. We watched March of the Penguins, and her main comment was right on target: what about the people who filmed it? How did they cope with the cold weather and conditions? She was ready to leave about halfway through, but probably no sooner than most other viewers.
Afterward we bought Panda Express meals for lunch and took them to my house. I wheeled her up the new ramp to the front door and installed her at the kitchen table, where she ate two pieces of cinnamon raisin toast for dessert, while watching me punch down the dough for the cinnamon rolls, roll it out, sprinkle it with cinnamon and sugar, and place the cut rolls in a pan to rise.
She was falling asleep by that point, so after a difficult bathroom trip, I helped her into a recliner for a nap.
Before she could fall asleep, however, John's sister Lee dropped by with Leo and their three-year-old twins, Juliette and Jacqueline. The girls remembered the antique doll buggy they had played with last time--which had belonged to Grandma when she was their age, early in the 1920s. Soon we were all sitting in the back yard watching them push the buggy and rearrange the covers on the doll.
Mom--aka Grandma Gussie--was delighted. She was able to keep up with the limited kinds of conversation that occur around that kind of event. Elegantly dressed in her best Jones New York pink tailored coat and flowered rayon skirt and blouse, she made perfect sense. One would never have suspected she had any dementia.
"You should curl their hair," she told Lee. "I had curls when I was their age. I can show you how to do it--you take the hair like this and wrap it around a rag and then wrap the rag back around it and tie it."
When Leo gave each of the twins a turn at being held upside down, Lee and Grandma expressed equal dismay: "Don't do that! You might drop her."
We all ate cinnamon rolls hot out of the oven with milk.
And then the twins were put in their carseats and taken home; Grandma was wheeled back to the car and driven back to the secure floor of Ocean View Assisted Living.
She was tired, but she had had a happy day.
Saturday, October 01, 2005
Scary Numbers
I'm waking up slowly on this Saturday morning, and then it hits me: October 1 and I haven't mailed Mom's payment to Ocean View Assisted Living.
For two years, since she moved to California and I took over her checkbook, I haven't missed a payment. It's always due on the first of the month, mailed to a billing office on the east coast, and I'm very careful about being on time.
But now I have blown it. I find the bill and write out the check: $7,267.
I must be crazy to pay this amount per month for my mother to live in a nice residence where there are caregivers, a nurse, housekeepers, cooks, and a team of medicine managers who wheel their carts around each floor four times per day dispensing medications.
But what are my alternatives? Caring for her in my own home? I couldn't even provide the wholesome meals three times per day, much less the medications and the constant supervision. And then there's John: whenever I mention the possibility of having her live with us, he puts his foot down: no.
My sister and two brothers are equally reluctant to take on full-time care. Therefore, Mom will be in a care facility near one of us, and I find it convenient to have her near me.
We have taken turns at caring for her: Jim did it while she was still living in her own home in Boulder, Colorado, and needed various kinds of assistance on a weekly basis. Bill and Sandy took her into their home for two months after she fell and got a crushed vertebra. When we moved her to California, Emily supervised her in an assisted living near her home, an hour and a half from me.
The situation changed when Mom broke her left hip in August 2004. After she spent ten days in the hospital and four weeks in Garden Grove Convalescent Home, the staff thought she should continue to live right there. After all, she needed help with showering, toileting, and transferring from a chair to the wheelchair; she had become fairly wheel-chair dependent, though the physical therapist had been able to get her walking 200 feet with stand-by assistance several times per week. The price was right--$4-5,000 per month, about the same as her income.
But Mom hated being there. Could we leave her in a nursing home for the rest of her life? We toured other possibilities in the area, but even the nicest SNFs look like a hospital. The nurses station is central; floors are linoleum; most people are in wheelchairs and pretty grim-looking; IV poles abound.
The price tag of Ocean View Assisted Living didn't look so bad when we figured she might not last there too long. We heard statistics that most people her age who break a hip don't live more than a year afterward, so wedecided to try for assisted living as long as possible. After all, she has a monthly retirement income of $4721 and a healthy nest egg from selling her home in Boulder four years ago.
It became a calculation of how long she might live vs. how fast we were using up her financial resources. She's 86 years old and in pretty good health except for her diminishing mobility and her diagnosis of Lewy Body. Which will run out first, her money or her health?
Early in October, 2004, we moved her into Ocean View on the memory-impaired, secure floor at the maximum level of care. She's surrounded by beautiful interior decoration and nice carpets. No nurses station is to be seen.
She spends most of the day in her private room, surrounded by her own furniture: her bureau covered with earrings and necklaces, a table full of mail and framed photos, a glass doll cabinet, an elegant black desk and chair, a television, walls with family portraits. Three times per day she wheels out to the cheerful dining room, passing the living room with television and fireplace. From the patio, in addition to various apartment buildings, there's a glimpse of the Pacific Ocean.
My greatest fear was that she wouldn't last even a month--that after moving all her furniture and clothes into the studio apartment, she would fall or have a health crisis that would take her right back to the hospital or a SNF.
Sure enough, she fell within a week after arriving. She couldn't remember that she needed a wheelchair or walker. If the staff left her sitting in an easy chair or on the toilet, she would get up and try to walk--and fall. If she were put to bed for the night, she would try to get out of bed to go to the bathroom. Full-length bedrails and restraints, either in bed or in a wheelchair, are not allowed because Ocean View is not a nursing home--it's not licensed for such things.
With a ratio of 4-5 caregivers for 25 residents, however, the staff could not watch Mom while she was on the toilet or in her recliner napping or watching television, which was where she wanted to be most of the day. She hated going to group activities in the common area.
When she fell for the third or fourth time, without any serious injury that would send her back to the hospital, I decided to hire a personal caregiver at night in addition to the staff at Ocean View.
I figured we could afford to pay the high monthly fee, plus $14 per hour for someone to keep an eye on Mom at night, for a few months. If she made it to Thanksgiving, or even Christmas, we could always move her to a nursing home early in 2005 or whenever her money ran out.
Somehow she made it, month after month, but only because we added a personal caregiver for 6 am to 2 pm, in addition to 6 pm to 6 am. At 2 pm I showed up to visit her, and at 4:30 I left her sitting in the dining room for dinner. That meant four hours of care that we didn't have to pay for, as well as all day on Sundays, when I took her to church and to my home. Emily did the 1-2 hr. drive to spell me one or two afternoons per week.
When summer came, I took a few weeks off and began paying for personal care around the clock. Bill and Jim visited, but none of us felt like saying, "Okay, it's time to save money by moving her into a nursing home."
So that's how we arrived at October 1, 2005, and a bill of $7,267--not counting the personal caregivers.
For two years, since she moved to California and I took over her checkbook, I haven't missed a payment. It's always due on the first of the month, mailed to a billing office on the east coast, and I'm very careful about being on time.
But now I have blown it. I find the bill and write out the check: $7,267.
I must be crazy to pay this amount per month for my mother to live in a nice residence where there are caregivers, a nurse, housekeepers, cooks, and a team of medicine managers who wheel their carts around each floor four times per day dispensing medications.
But what are my alternatives? Caring for her in my own home? I couldn't even provide the wholesome meals three times per day, much less the medications and the constant supervision. And then there's John: whenever I mention the possibility of having her live with us, he puts his foot down: no.
My sister and two brothers are equally reluctant to take on full-time care. Therefore, Mom will be in a care facility near one of us, and I find it convenient to have her near me.
We have taken turns at caring for her: Jim did it while she was still living in her own home in Boulder, Colorado, and needed various kinds of assistance on a weekly basis. Bill and Sandy took her into their home for two months after she fell and got a crushed vertebra. When we moved her to California, Emily supervised her in an assisted living near her home, an hour and a half from me.
The situation changed when Mom broke her left hip in August 2004. After she spent ten days in the hospital and four weeks in Garden Grove Convalescent Home, the staff thought she should continue to live right there. After all, she needed help with showering, toileting, and transferring from a chair to the wheelchair; she had become fairly wheel-chair dependent, though the physical therapist had been able to get her walking 200 feet with stand-by assistance several times per week. The price was right--$4-5,000 per month, about the same as her income.
But Mom hated being there. Could we leave her in a nursing home for the rest of her life? We toured other possibilities in the area, but even the nicest SNFs look like a hospital. The nurses station is central; floors are linoleum; most people are in wheelchairs and pretty grim-looking; IV poles abound.
The price tag of Ocean View Assisted Living didn't look so bad when we figured she might not last there too long. We heard statistics that most people her age who break a hip don't live more than a year afterward, so wedecided to try for assisted living as long as possible. After all, she has a monthly retirement income of $4721 and a healthy nest egg from selling her home in Boulder four years ago.
It became a calculation of how long she might live vs. how fast we were using up her financial resources. She's 86 years old and in pretty good health except for her diminishing mobility and her diagnosis of Lewy Body. Which will run out first, her money or her health?
Early in October, 2004, we moved her into Ocean View on the memory-impaired, secure floor at the maximum level of care. She's surrounded by beautiful interior decoration and nice carpets. No nurses station is to be seen.
She spends most of the day in her private room, surrounded by her own furniture: her bureau covered with earrings and necklaces, a table full of mail and framed photos, a glass doll cabinet, an elegant black desk and chair, a television, walls with family portraits. Three times per day she wheels out to the cheerful dining room, passing the living room with television and fireplace. From the patio, in addition to various apartment buildings, there's a glimpse of the Pacific Ocean.
My greatest fear was that she wouldn't last even a month--that after moving all her furniture and clothes into the studio apartment, she would fall or have a health crisis that would take her right back to the hospital or a SNF.
Sure enough, she fell within a week after arriving. She couldn't remember that she needed a wheelchair or walker. If the staff left her sitting in an easy chair or on the toilet, she would get up and try to walk--and fall. If she were put to bed for the night, she would try to get out of bed to go to the bathroom. Full-length bedrails and restraints, either in bed or in a wheelchair, are not allowed because Ocean View is not a nursing home--it's not licensed for such things.
With a ratio of 4-5 caregivers for 25 residents, however, the staff could not watch Mom while she was on the toilet or in her recliner napping or watching television, which was where she wanted to be most of the day. She hated going to group activities in the common area.
When she fell for the third or fourth time, without any serious injury that would send her back to the hospital, I decided to hire a personal caregiver at night in addition to the staff at Ocean View.
I figured we could afford to pay the high monthly fee, plus $14 per hour for someone to keep an eye on Mom at night, for a few months. If she made it to Thanksgiving, or even Christmas, we could always move her to a nursing home early in 2005 or whenever her money ran out.
Somehow she made it, month after month, but only because we added a personal caregiver for 6 am to 2 pm, in addition to 6 pm to 6 am. At 2 pm I showed up to visit her, and at 4:30 I left her sitting in the dining room for dinner. That meant four hours of care that we didn't have to pay for, as well as all day on Sundays, when I took her to church and to my home. Emily did the 1-2 hr. drive to spell me one or two afternoons per week.
When summer came, I took a few weeks off and began paying for personal care around the clock. Bill and Jim visited, but none of us felt like saying, "Okay, it's time to save money by moving her into a nursing home."
So that's how we arrived at October 1, 2005, and a bill of $7,267--not counting the personal caregivers.
Friday, September 30, 2005
A Visit to Beverly Hills
Today is our visit to the cardiologist who did the surgery for Mom's pacemaker sixteen days ago. For twenty days she hasn't been anywhere except her residence, the hospital, a few trips in the wheelchair around the block, and one visit to my house.
Jona has Mom at the front door, sitting in the wheelchair and ready to go when I arrive at 9 am.
The doctor's office turns out to be on North Robertson in Beverly Hills; there's a lot of traffic, but we make good time.
"Oh, is that where John works?" asks Mom, pointing to the skyscrapers of Century City and Beverly Hills.
"No," I say, once again explaining that those tall buildings are not downtown Los Angeles, though they look like it.
We arrive and park in a glamorous medical complex. The elevator has glass walls so we can see the large fountain and pool surrounded with greenery in the lobby as we sail up from the parking levels.
On the second floor, we find Suite 150, but there is no door; we wheel right into the waiting room where the receptionist sits overlooking the fountain. We sit down and watch the people in the elevators as the glass boxes slide up and down.
The other people in the waiting room are in matching groups, older and younger, as we are: an Asian man my age with his frail father in a wheelchair; an elegant older Caucasian woman with an equally elegant blonde daughter my age; three women in lovely flowered sunhats, speaking Farsi, one older, two about my age.
Forty-five minutes later, we're admitted to a small examination room; Mom is told to change into a gown from the waist up. Fifteen minutes later Dr. Noel B. enters. I have spent the hour making a whole page of notes about events since the surgery and questions that I have.
"How have you been doing?" he asks Mom.
"Fine," she says.
"Except for one episode a week ago where she was nonresponsive for ten minutes," I add and start to describe it.
"That has nothing to do with her heart," he concludes, as Bill did a week ago.
"Okay," I say and look over my list of other questions and concerns.
"Her incision is healing well. Excellent!" he says, about to leave.
"I just want to know about the pacemaker, when it was reset a couple days after her surgery, what level of demand it is set to now," I begin.
"I can get you that information, but that's not what this appointment is for today. I'm just checking on the incision. You need to call the Pacemaker Clinic and make an appointment for November or December, to have the pacemaker checked after the leads have matured."
He disappears to get a written report on the surgery, and Mom says to me, "Don't overdo him or he won't come back." She knows exactly what's happening.
When he comes back, I ask again: "Well, I just wondered about whether the pacemaker is monitoring both the atrium and the ventricles--the specialist in the hospital said it was not set to read 'A-fibs and fluts.'"
"It paces in the atrium, but her ventricle does itself, unless it needs help. The demand is set at 60. In the atrium it's set so it doesn't track rapid beats."
"Okay, thanks," I say, accepting the papers he hands me.
We're back out in the elegant lobby, never having paid a penny, thanks to Medicare.
We wheel out onto the sidewalk to look around, but this part of Beverly Hills doesn't seem to have any shops or anything interesting, so we enter a liquor store next door and buy two lime popsicles and a small glass bottle of Coca Cola with "USC Trojans--2004 National Champions" on the back.
We retreat to the parking levels, pay $9, and drive back to Santa Irena, where we meet Jona.
"How did it go?" she asks.
"Okay," I say. "All he wanted to do was look at the incision. It was fine."
Jona looks at me with wonderment.
"Yeah, we knew it was fine," I say.
We look at each other, shaking our heads, thinking about all the effort it took to get Mom up and out by 9 am for the big expedition to the doctor.
"Oh well, at least we saw Beverly Hills, didn't we, Mom?" I smile.
Jona has Mom at the front door, sitting in the wheelchair and ready to go when I arrive at 9 am.
The doctor's office turns out to be on North Robertson in Beverly Hills; there's a lot of traffic, but we make good time.
"Oh, is that where John works?" asks Mom, pointing to the skyscrapers of Century City and Beverly Hills.
"No," I say, once again explaining that those tall buildings are not downtown Los Angeles, though they look like it.
We arrive and park in a glamorous medical complex. The elevator has glass walls so we can see the large fountain and pool surrounded with greenery in the lobby as we sail up from the parking levels.
On the second floor, we find Suite 150, but there is no door; we wheel right into the waiting room where the receptionist sits overlooking the fountain. We sit down and watch the people in the elevators as the glass boxes slide up and down.
The other people in the waiting room are in matching groups, older and younger, as we are: an Asian man my age with his frail father in a wheelchair; an elegant older Caucasian woman with an equally elegant blonde daughter my age; three women in lovely flowered sunhats, speaking Farsi, one older, two about my age.
Forty-five minutes later, we're admitted to a small examination room; Mom is told to change into a gown from the waist up. Fifteen minutes later Dr. Noel B. enters. I have spent the hour making a whole page of notes about events since the surgery and questions that I have.
"How have you been doing?" he asks Mom.
"Fine," she says.
"Except for one episode a week ago where she was nonresponsive for ten minutes," I add and start to describe it.
"That has nothing to do with her heart," he concludes, as Bill did a week ago.
"Okay," I say and look over my list of other questions and concerns.
"Her incision is healing well. Excellent!" he says, about to leave.
"I just want to know about the pacemaker, when it was reset a couple days after her surgery, what level of demand it is set to now," I begin.
"I can get you that information, but that's not what this appointment is for today. I'm just checking on the incision. You need to call the Pacemaker Clinic and make an appointment for November or December, to have the pacemaker checked after the leads have matured."
He disappears to get a written report on the surgery, and Mom says to me, "Don't overdo him or he won't come back." She knows exactly what's happening.
When he comes back, I ask again: "Well, I just wondered about whether the pacemaker is monitoring both the atrium and the ventricles--the specialist in the hospital said it was not set to read 'A-fibs and fluts.'"
"It paces in the atrium, but her ventricle does itself, unless it needs help. The demand is set at 60. In the atrium it's set so it doesn't track rapid beats."
"Okay, thanks," I say, accepting the papers he hands me.
We're back out in the elegant lobby, never having paid a penny, thanks to Medicare.
We wheel out onto the sidewalk to look around, but this part of Beverly Hills doesn't seem to have any shops or anything interesting, so we enter a liquor store next door and buy two lime popsicles and a small glass bottle of Coca Cola with "USC Trojans--2004 National Champions" on the back.
We retreat to the parking levels, pay $9, and drive back to Santa Irena, where we meet Jona.
"How did it go?" she asks.
"Okay," I say. "All he wanted to do was look at the incision. It was fine."
Jona looks at me with wonderment.
"Yeah, we knew it was fine," I say.
We look at each other, shaking our heads, thinking about all the effort it took to get Mom up and out by 9 am for the big expedition to the doctor.
"Oh well, at least we saw Beverly Hills, didn't we, Mom?" I smile.
Thursday, September 29, 2005
Airway Emergencies
No phone calls in the middle of the night! Hurrah!
I don't show up for my daily visit until 4:30 pm. Mom is already sitting in the dining room, eating grapes while waiting for dinner to start. Several other residents are also early for dinner.
"How was her day?" I ask Jona.
"Fine. She was fine today--not a sleepy day, not agitated."
"Great," I say. "Thanks--you can go now. Thanks for everything." I like to let Jona leave at 4 pm or so because she works a 12-hour day, 6 am to 6 pm. Instead of visiting my mother at 2 pm as I used to, I try to come by 4 pm and let Jona get away before traffic gets bad. But it's now after 4:30 so traffic will be terrible.
"Okay," says Jona, always cheerful and smiling.
I scoop up the pile of red grape skins from the placemat and throw it out.
A staff member of Ocean View brings Mom a bowl of soup, a thin dark broth. She picks up the spoon with her left hand, but I make her use the right hand to eat.
"It needs exercise," I say. "It's still swollen." She takes a few spoonfuls, laboriously. The fingers of her right hand are swollen and clumsy.
I begin showing her photos of Colorado, which I have just picked up from the photo shop. She's looking at each one with interest. She tires of trying to steer the small spoonfuls into her mouth and picks up the bowl to drink the soup.
But on the second swallow she chokes and tries to cough. Some soup must have gone down her airway instead of the throat. She makes choking noises. I thump her back, which doesn't help. Bethlhem comes and raises Mom's arms above her head, which helps. The four other residents sitting around the table watch the scene with varying levels of alarm and alertness.
Soon Mom is coughing well and able to talk. Crisis resolved. I throw out the soup, and she moves on to the main course, pasta with chicken. I make a mental note: "No drinking of soup. Too hard. Her swallowing skills aren't up to it."
Then Elva at another table chokes. She is older than Mom, maybe 92, less glamorous: a small gaunt figure with large black glasses and a few strands of thin grey shoulder-length hair that start a few inches back from her forehead.
Bethlhem and Marnie are able to resolve this crisis too. I admire their skill and fortitude.
"Just another exciting meal in the Reminiscence Neighborhood," I reflect later, leaving Connie to deal with my mother, Bethlhem and Marnie to cope with other crises until 10 pm.
I don't show up for my daily visit until 4:30 pm. Mom is already sitting in the dining room, eating grapes while waiting for dinner to start. Several other residents are also early for dinner.
"How was her day?" I ask Jona.
"Fine. She was fine today--not a sleepy day, not agitated."
"Great," I say. "Thanks--you can go now. Thanks for everything." I like to let Jona leave at 4 pm or so because she works a 12-hour day, 6 am to 6 pm. Instead of visiting my mother at 2 pm as I used to, I try to come by 4 pm and let Jona get away before traffic gets bad. But it's now after 4:30 so traffic will be terrible.
"Okay," says Jona, always cheerful and smiling.
I scoop up the pile of red grape skins from the placemat and throw it out.
A staff member of Ocean View brings Mom a bowl of soup, a thin dark broth. She picks up the spoon with her left hand, but I make her use the right hand to eat.
"It needs exercise," I say. "It's still swollen." She takes a few spoonfuls, laboriously. The fingers of her right hand are swollen and clumsy.
I begin showing her photos of Colorado, which I have just picked up from the photo shop. She's looking at each one with interest. She tires of trying to steer the small spoonfuls into her mouth and picks up the bowl to drink the soup.
But on the second swallow she chokes and tries to cough. Some soup must have gone down her airway instead of the throat. She makes choking noises. I thump her back, which doesn't help. Bethlhem comes and raises Mom's arms above her head, which helps. The four other residents sitting around the table watch the scene with varying levels of alarm and alertness.
Soon Mom is coughing well and able to talk. Crisis resolved. I throw out the soup, and she moves on to the main course, pasta with chicken. I make a mental note: "No drinking of soup. Too hard. Her swallowing skills aren't up to it."
Then Elva at another table chokes. She is older than Mom, maybe 92, less glamorous: a small gaunt figure with large black glasses and a few strands of thin grey shoulder-length hair that start a few inches back from her forehead.
Bethlhem and Marnie are able to resolve this crisis too. I admire their skill and fortitude.
"Just another exciting meal in the Reminiscence Neighborhood," I reflect later, leaving Connie to deal with my mother, Bethlhem and Marnie to cope with other crises until 10 pm.
Wednesday, September 28, 2005
The Morning After
I thought I had solved everything. I had gone to Mom's residence, calmed her down, and tucked her back into bed. Feeling somewhat saintly, I had returned home at 2:30 am and gone to bed, sleeping in to get a total of six hours.
I had promised her, "I'll be back at 2 pm."
But at 2 pm, I thought 3 pm would be good enough. At 3 pm, the phone rang.
"Anne, should I take the doll to your house? You want to keep her there, don't you?"
"Hi, Mom. You mean Anne of Green Gables? She can stay at your place. I thought I'd take her back to Colorado next summer."
"Oh, okay--"
"How are you doing today?"
"Fine, I'm fine, but when are you coming?"
"I'll come in about half an hour. I'll be there soon," I promised. I didn't ask to talk with her caregiver, Jona. Everything sounded normal.
But then I didn't arrive until 4 pm.
Jona began by explaining, "She's agitated today."
I heard the whole story, starting with Connie's report to Jona about the rest of the night.
Mom had only slept for twenty minutes before waking at 2:40 am and again insisting on getting out of bed: "I'm going to the meeting. I have to get dressed."
Somehow Connie had kept Mom in bed and gotten her back to sleep. Mom had slept off and on for 2-3 hrs., waking and asking for orange juice, getting a change of her Depend.
Jona had arrived at 6 am, and Connie had gone home to sleep.
"She was awake and agitated," Jona reported. "She was trying to get out of bed, so I sat on the end of the bed. She was saying, 'I'm going to the meeting! Get me dressed,' and she was trying to push the bedrail out with her knee. 'I'll kick you,' she kept saying and she was crying. "Go ahead, kick me,' I said, and she did."
"Oh dear! I'm so sorry. This is the first time you've seen her this way, isn't it?"
"Yes," admitted Jona.
"It's usually at night when she gets agitated," I noted.
"She wanted to call you. She kept saying, 'Call Anne! Call Anne! I have to go to the meeting. she knows this.
"Thanks for not calling," I said. "And I thought everything was okay when I went home and went to sleep. Oh well."
"Yes. She kept saying, 'You don't help me--you're not doing anything. Give me my earrings! Take my gown off--I don't want this on for a meeting.' And when she was hitting the rail with her knee, I said, 'You're on coumadin! Don't hurt yourself."
"Oh no--you're right. She's on coumadin again. We have to watch out for that now."
"Actually it was a loud noise that woke her up at 6. While I had the door open to come in, a door slammed and Julie started yelling, 'Help me! Somebody help me! I'm dying and nobody cares!"
"Oh, yes, Julie does that," I reflected.
Julie lives down the hall, sarcastic and demanding, another one of the interesting characters in the Reminiscence Neighborhood. The sane residents are on the first two floors; those with various kinds of dementia are on the secure floor, known as Rem.
"She yells every day early in the morning."
"Early in the morning? I didn't know that."
"But your mom finally went back to sleep and slept until 8 am. And then she was okay. I dressed her and took her to breakfast. She ate a good breakfast; at 9 am she was back in the room, sitting in her recliner, but she still wanted to get out, 'to go with Anne to a meeting.' So I asked her, 'What is this meeting?' and she said, 'With Anne. Anne is going to take me to a meeting.' I took her out for a walk, but then she didn't want to go to lunch. She said she was going to have lunch at your house."
"Oh dear--I told her I would be back at 2 pm and I would take her to my house. I guess that's the meeting she was talking about. So she stayed agitated most of the day?"
"Yes, she kept wanting to call you. I wouldn't let her. Then she went to sleep, and Jim called."
"Oh, good. Did she wake up enough to talk to him? Were her words slurred?"
"No, she talked fine. She went back to sleep but then she wanted to call you. She said, 'Let me have my doll. Anne wants to take it back to her place.' I finally called you for her."
"I should have come at 2," I realized. "Sorry, Jona, that you had to cope with this for so long." And I turned to my mother: "Mom, we're leaving now. Do you still want to come to my house for cinnamon raisin toast?"
"Yes! I haven't been to your house for a year," she charged, not opening her eyes. She had been sitting in her recliner half-asleep during this conversation.
"It's been a long time. You came to my house after WomenChurch, at the end of August, remember? We went to Claremont and then we went to my house. Okay, Jona, thank you so much. You can go home now. I'll take her to my house."
But Jona insisted on helping me get Mom to the toilet before she left. After that event I wheeled Mom down the hall to one elevator, then to the other elevator for the parking garage, and managed to get her into the front seat of my minivan, folding the wheelchair and lifting it into the back.
I stopped at Bob's Market to buy cinnamon raisin bread, milk, bananas, and a few of her other favorite foods. At my house I helped her into the wheelchair and easily pushed her up the new ramp built in July, into the house.
We feasted on toast and milk. I made her two pieces and cut off the crust for myself because she's not allowed to eat dry, scratchy foods. Her swallowing isn't that good, probably because of the Lewy Body disease, which affects her muscles with some Parkinson's-type symptoms.
But she wanted more toast. I gave her two more pieces, then half a grapefruit cut up.
"Can I have another piece?" she asked.
"No!" I said. "You've had four pieces, and it's dinner time. This is just a snack. You need to go back to Ocean View and have that tuna salad they are serving. You need the protein."
"You won't let me have it because you're selfish."
"Give me a break! You really want one more piece, don't you? Alright, one more piece."
Back in the car, she had another demand: "What about that other food I saw? Those long slender things. I want one of them."
"What long slender things?" I asked, thinking, "Carrots. She saw the carrots on the counter and wants one."
"You know--those long slender things."
"Well, maybe Sunday. We'll go to church on Sunday, and then we'll come here for lunch." I didn't explain that uncooked carrots are forbidden--she's allowed soft and chewy foods, nothing hard or chokable.
After driving back to Ocean View, I take her to her room, get the tuna salad, and take it back to her room. Dinner in the dining room has ended--it's now 6:15 pm. Mom begins to eat the tuna fish with gusto. Connie has arrived to do another 12 hours of care.
"How are you, Connie? Did you get some sleep? Jona told me Mom was awake again at 2:40 am."
"Yes," Connie says, laughing, showing me her sheet of notes from the night. She laughs about everything, somehow. Each caregiver keeps a detailed list of notes about my mother's food, meds, bms, activities--even things like "8 pm Watched Insomnia. By Robin Williams."
"Okay, well, I hope you have a quiet night tonight. I hope she sleeps well."
"Yes," says Connie, bustling around to get things ready for Mom's evening shower.
"If you have any problems--" I add, pausing.
I almost say, "--don't call me." Somehow I'm really tired; I feel like going home, lying down, and waking up whenever.
But then I manage to say, "Just call me." Cheerfully. Smiling.
"Yes, right," Connie says, wrinkling her brow to show her determination, concern. Probably about as fake as my smile.
I slip out of the room, closing the door behind me, walking past the crowd of residents watching the evening movie, trying not to make eye contact with anyone. Another conversation with a resident is beyond my energy level. I know each familiar face, each flavor of dementia.
I have to escape, but first I have to pass through another crowd gathered to play a word memory game.
"Heavens to ________" the caregiver begins.
"Betsy!" answers Verma.
"Congratulations! You knew it," I say, smiling at her while heading for the elevator.
I punch in the door code and escape, praying that Connie will not call, that I will get a good night's sleep.
I had promised her, "I'll be back at 2 pm."
But at 2 pm, I thought 3 pm would be good enough. At 3 pm, the phone rang.
"Anne, should I take the doll to your house? You want to keep her there, don't you?"
"Hi, Mom. You mean Anne of Green Gables? She can stay at your place. I thought I'd take her back to Colorado next summer."
"Oh, okay--"
"How are you doing today?"
"Fine, I'm fine, but when are you coming?"
"I'll come in about half an hour. I'll be there soon," I promised. I didn't ask to talk with her caregiver, Jona. Everything sounded normal.
But then I didn't arrive until 4 pm.
Jona began by explaining, "She's agitated today."
I heard the whole story, starting with Connie's report to Jona about the rest of the night.
Mom had only slept for twenty minutes before waking at 2:40 am and again insisting on getting out of bed: "I'm going to the meeting. I have to get dressed."
Somehow Connie had kept Mom in bed and gotten her back to sleep. Mom had slept off and on for 2-3 hrs., waking and asking for orange juice, getting a change of her Depend.
Jona had arrived at 6 am, and Connie had gone home to sleep.
"She was awake and agitated," Jona reported. "She was trying to get out of bed, so I sat on the end of the bed. She was saying, 'I'm going to the meeting! Get me dressed,' and she was trying to push the bedrail out with her knee. 'I'll kick you,' she kept saying and she was crying. "Go ahead, kick me,' I said, and she did."
"Oh dear! I'm so sorry. This is the first time you've seen her this way, isn't it?"
"Yes," admitted Jona.
"It's usually at night when she gets agitated," I noted.
"She wanted to call you. She kept saying, 'Call Anne! Call Anne! I have to go to the meeting. she knows this.
"Thanks for not calling," I said. "And I thought everything was okay when I went home and went to sleep. Oh well."
"Yes. She kept saying, 'You don't help me--you're not doing anything. Give me my earrings! Take my gown off--I don't want this on for a meeting.' And when she was hitting the rail with her knee, I said, 'You're on coumadin! Don't hurt yourself."
"Oh no--you're right. She's on coumadin again. We have to watch out for that now."
"Actually it was a loud noise that woke her up at 6. While I had the door open to come in, a door slammed and Julie started yelling, 'Help me! Somebody help me! I'm dying and nobody cares!"
"Oh, yes, Julie does that," I reflected.
Julie lives down the hall, sarcastic and demanding, another one of the interesting characters in the Reminiscence Neighborhood. The sane residents are on the first two floors; those with various kinds of dementia are on the secure floor, known as Rem.
"She yells every day early in the morning."
"Early in the morning? I didn't know that."
"But your mom finally went back to sleep and slept until 8 am. And then she was okay. I dressed her and took her to breakfast. She ate a good breakfast; at 9 am she was back in the room, sitting in her recliner, but she still wanted to get out, 'to go with Anne to a meeting.' So I asked her, 'What is this meeting?' and she said, 'With Anne. Anne is going to take me to a meeting.' I took her out for a walk, but then she didn't want to go to lunch. She said she was going to have lunch at your house."
"Oh dear--I told her I would be back at 2 pm and I would take her to my house. I guess that's the meeting she was talking about. So she stayed agitated most of the day?"
"Yes, she kept wanting to call you. I wouldn't let her. Then she went to sleep, and Jim called."
"Oh, good. Did she wake up enough to talk to him? Were her words slurred?"
"No, she talked fine. She went back to sleep but then she wanted to call you. She said, 'Let me have my doll. Anne wants to take it back to her place.' I finally called you for her."
"I should have come at 2," I realized. "Sorry, Jona, that you had to cope with this for so long." And I turned to my mother: "Mom, we're leaving now. Do you still want to come to my house for cinnamon raisin toast?"
"Yes! I haven't been to your house for a year," she charged, not opening her eyes. She had been sitting in her recliner half-asleep during this conversation.
"It's been a long time. You came to my house after WomenChurch, at the end of August, remember? We went to Claremont and then we went to my house. Okay, Jona, thank you so much. You can go home now. I'll take her to my house."
But Jona insisted on helping me get Mom to the toilet before she left. After that event I wheeled Mom down the hall to one elevator, then to the other elevator for the parking garage, and managed to get her into the front seat of my minivan, folding the wheelchair and lifting it into the back.
I stopped at Bob's Market to buy cinnamon raisin bread, milk, bananas, and a few of her other favorite foods. At my house I helped her into the wheelchair and easily pushed her up the new ramp built in July, into the house.
We feasted on toast and milk. I made her two pieces and cut off the crust for myself because she's not allowed to eat dry, scratchy foods. Her swallowing isn't that good, probably because of the Lewy Body disease, which affects her muscles with some Parkinson's-type symptoms.
But she wanted more toast. I gave her two more pieces, then half a grapefruit cut up.
"Can I have another piece?" she asked.
"No!" I said. "You've had four pieces, and it's dinner time. This is just a snack. You need to go back to Ocean View and have that tuna salad they are serving. You need the protein."
"You won't let me have it because you're selfish."
"Give me a break! You really want one more piece, don't you? Alright, one more piece."
Back in the car, she had another demand: "What about that other food I saw? Those long slender things. I want one of them."
"What long slender things?" I asked, thinking, "Carrots. She saw the carrots on the counter and wants one."
"You know--those long slender things."
"Well, maybe Sunday. We'll go to church on Sunday, and then we'll come here for lunch." I didn't explain that uncooked carrots are forbidden--she's allowed soft and chewy foods, nothing hard or chokable.
After driving back to Ocean View, I take her to her room, get the tuna salad, and take it back to her room. Dinner in the dining room has ended--it's now 6:15 pm. Mom begins to eat the tuna fish with gusto. Connie has arrived to do another 12 hours of care.
"How are you, Connie? Did you get some sleep? Jona told me Mom was awake again at 2:40 am."
"Yes," Connie says, laughing, showing me her sheet of notes from the night. She laughs about everything, somehow. Each caregiver keeps a detailed list of notes about my mother's food, meds, bms, activities--even things like "8 pm Watched Insomnia. By Robin Williams."
"Okay, well, I hope you have a quiet night tonight. I hope she sleeps well."
"Yes," says Connie, bustling around to get things ready for Mom's evening shower.
"If you have any problems--" I add, pausing.
I almost say, "--don't call me." Somehow I'm really tired; I feel like going home, lying down, and waking up whenever.
But then I manage to say, "Just call me." Cheerfully. Smiling.
"Yes, right," Connie says, wrinkling her brow to show her determination, concern. Probably about as fake as my smile.
I slip out of the room, closing the door behind me, walking past the crowd of residents watching the evening movie, trying not to make eye contact with anyone. Another conversation with a resident is beyond my energy level. I know each familiar face, each flavor of dementia.
I have to escape, but first I have to pass through another crowd gathered to play a word memory game.
"Heavens to ________" the caregiver begins.
"Betsy!" answers Verma.
"Congratulations! You knew it," I say, smiling at her while heading for the elevator.
I punch in the door code and escape, praying that Connie will not call, that I will get a good night's sleep.
Lewy Body at 2 am
"Your mom is agitated... she wants to get up and get dressed. Can you talk to her?"
The call from the caregiver came at 1: 30 am. I was in town and hadn't gone to bed yet.
"Hi, Mom. How are you?"
"Well, I'm fine but this lady is trying to control me. I have to drive to Denver, and she's trying to stop me."
"Oh, she is?"
"Yes, and I am sick and tired of these people who think they can tell me what to do."
"Yeah, it's frustrating, isn't it. But it is 1:30 in the morning, you know."
"Yes, I know, but I have to get dressed--"
"Okay, I'm going to come over. I'll see you in a few minutes."
I pulled on sweatpants and a sweatshirt over my pajamas and drove over to Ocean View Assisted Living, thinking, "Why not? It's the easiest way to calm her down. And it's probably because I just drove in from Colorado and told her about the trip, got her all excited."
I used my garage pass to enter the building's basement parking, took the elevator using the building code, and walked through the silent corridors to the third floor.
Connie in pajamas, her futon rolled up, opened the door to Mom's room.
Mom was sitting on the edge of her bed in her Lanz flannel flowered nightgown, next to the short bed safety bar that was intended to keep her in bed for the night. We aren't allowed to have a full-length bar--the facility is only licensed for assisted living, not skilled nursing.
"Hi, Mom. How are you?" I asked, squeezing in to sit at the foot of the bed.
"I'm fine now that you are here. But I have to get dressed and she won't let me. I've got to get to Denver."
"How are you planning to get there? Are you going to take a plane or are you driving?" I sat with one arm around her, hugging her from the side, rubbing her back.
"I'm just driving but she won't let me--"
"Well, there's no need to leave at 2 am. Do you know it is 2 am?"
"Yes, I know but this lady is not helping me. She took away my watch and my opal ring." Mom studied her right hand, minus the ring.
"Where's her watch, Connie? She needs her watch. It's good to know what time it is." We found it and the ring, which would not go on her finger. The right hand was still swollen from her struggles and agitation in the middle of the night three weeks earlier.
"Now, Mom, if you're going by car, that means I'm driving. And I just drove for 11 hours yesterday, from Kayenta to LA, so I don't want to drive to Denver right now. That wouldn't be a good idea."
"No..." she smiled, realizing that plan would be a little ridiculous.
"Actually I don't plan to go back until next summer. The next time we drive in a car to Denver will be then. Here are those Navajo beaded earrings I brought you. You should wear them tomorrow with some outfit."
We continued talking and sitting there.
"Are you doing your hand exercises? We have to get this swelling down."
"Yes, I do them all the time. Just leave me alone. You think you're the boss of me, but I'm the boss of my own body."
"Now you're mad at me. You want to get rid of me. Okay, let's all go back to bed. You go to bed and I'll go home and go to bed."
"Okay," she said, looking back toward the pillow. She lay down, and Connie and I lifted and slid her three feet backwards so her head was on the pillow.
"Okay, good night," I said, kissing her and arranging the pillows and covers. "I'll see you tomorrow at 2 pm. You can pick out a good outfit to wear with those basket earrings. Yellow or black to match it."
"Yes, I'll wear that yellow suit."
"And be sure to check the sky next time. See, if I turn this little light out--"
"No, don't turn it out! I leave it on."
"But if I turn it out and open the curtains, you can see the sky. Can you see the sky? It's black now, isn't it?"
"Turn that light on!"
"If you want to get up, check the sky. If the sky's blue, it's time to get up. If it's still black-- Okay, I'll turn the light on again. Connie, if she tries to get up, open the curtains--"
"I already did that--I showed her it was dark."
"Okay... I hope you can get some sleep."
I walked back through the third floor, chatting with Rose (who had made the critical decision to call 911 in the June 14 crisis at 1 am) and a new staff person and Lorenza, now working only a three-night shift while taking classes to earn her LVN and also caring for her four children.
I drove home under the dark, starry sky and got to bed by 2:30 am, thinking yeah, it was worth it, an hour well spent.
The call from the caregiver came at 1: 30 am. I was in town and hadn't gone to bed yet.
"Hi, Mom. How are you?"
"Well, I'm fine but this lady is trying to control me. I have to drive to Denver, and she's trying to stop me."
"Oh, she is?"
"Yes, and I am sick and tired of these people who think they can tell me what to do."
"Yeah, it's frustrating, isn't it. But it is 1:30 in the morning, you know."
"Yes, I know, but I have to get dressed--"
"Okay, I'm going to come over. I'll see you in a few minutes."
I pulled on sweatpants and a sweatshirt over my pajamas and drove over to Ocean View Assisted Living, thinking, "Why not? It's the easiest way to calm her down. And it's probably because I just drove in from Colorado and told her about the trip, got her all excited."
I used my garage pass to enter the building's basement parking, took the elevator using the building code, and walked through the silent corridors to the third floor.
Connie in pajamas, her futon rolled up, opened the door to Mom's room.
Mom was sitting on the edge of her bed in her Lanz flannel flowered nightgown, next to the short bed safety bar that was intended to keep her in bed for the night. We aren't allowed to have a full-length bar--the facility is only licensed for assisted living, not skilled nursing.
"Hi, Mom. How are you?" I asked, squeezing in to sit at the foot of the bed.
"I'm fine now that you are here. But I have to get dressed and she won't let me. I've got to get to Denver."
"How are you planning to get there? Are you going to take a plane or are you driving?" I sat with one arm around her, hugging her from the side, rubbing her back.
"I'm just driving but she won't let me--"
"Well, there's no need to leave at 2 am. Do you know it is 2 am?"
"Yes, I know but this lady is not helping me. She took away my watch and my opal ring." Mom studied her right hand, minus the ring.
"Where's her watch, Connie? She needs her watch. It's good to know what time it is." We found it and the ring, which would not go on her finger. The right hand was still swollen from her struggles and agitation in the middle of the night three weeks earlier.
"Now, Mom, if you're going by car, that means I'm driving. And I just drove for 11 hours yesterday, from Kayenta to LA, so I don't want to drive to Denver right now. That wouldn't be a good idea."
"No..." she smiled, realizing that plan would be a little ridiculous.
"Actually I don't plan to go back until next summer. The next time we drive in a car to Denver will be then. Here are those Navajo beaded earrings I brought you. You should wear them tomorrow with some outfit."
We continued talking and sitting there.
"Are you doing your hand exercises? We have to get this swelling down."
"Yes, I do them all the time. Just leave me alone. You think you're the boss of me, but I'm the boss of my own body."
"Now you're mad at me. You want to get rid of me. Okay, let's all go back to bed. You go to bed and I'll go home and go to bed."
"Okay," she said, looking back toward the pillow. She lay down, and Connie and I lifted and slid her three feet backwards so her head was on the pillow.
"Okay, good night," I said, kissing her and arranging the pillows and covers. "I'll see you tomorrow at 2 pm. You can pick out a good outfit to wear with those basket earrings. Yellow or black to match it."
"Yes, I'll wear that yellow suit."
"And be sure to check the sky next time. See, if I turn this little light out--"
"No, don't turn it out! I leave it on."
"But if I turn it out and open the curtains, you can see the sky. Can you see the sky? It's black now, isn't it?"
"Turn that light on!"
"If you want to get up, check the sky. If the sky's blue, it's time to get up. If it's still black-- Okay, I'll turn the light on again. Connie, if she tries to get up, open the curtains--"
"I already did that--I showed her it was dark."
"Okay... I hope you can get some sleep."
I walked back through the third floor, chatting with Rose (who had made the critical decision to call 911 in the June 14 crisis at 1 am) and a new staff person and Lorenza, now working only a three-night shift while taking classes to earn her LVN and also caring for her four children.
I drove home under the dark, starry sky and got to bed by 2:30 am, thinking yeah, it was worth it, an hour well spent.
Friday, September 23, 2005
Oh, I'm Dead
Mom had been working on her laptop computer, then got tired and took a nap.
At 5 pm, Jona decided to wake her up for dinner. But she wouldn't wake up.
"Evelyn, wake up. It's dinner time," Jona repeated, finally using the electric control to raise the recliner to a sitting-straight-up position.
The motion roused her. She opened her eyes and, looking at Jona, said, "Oh, I'm dead."
She closed her eyes again and was unrousable for ten minutes.
Jona ran to get Marnie and Bethlehem. Soon Beth, director of the Reminiscence Neighborhood, was in the room, along with Anna, the LVN in charge of the residence when the nurse was not present.
Jona kept talking to Evelyn, patting her hands, trying to get her to respond.
Her pulse was excellent, her blood pressure fine. But she did not respond. They debated what to do: Call the paramedics? No, her vitals were okay. Use the Epi-Pen? No, her tongue was not swollen or blocking her throat--her breathing continued.
Here eyeballs were moving left, then right beneath her eyelids. Was she in REM sleep? Or was it a petit mal seizure?
"Open your eyes! It's dinner time," Jona said. No response.
"Can you open your mouth?" She opened it slightly.
Suddenly Evelyn woke up and said, "Oh, you people leave me alone."
She was weak--her hands had no strength, but otherwise she seemed to be fine, as if nothing had happened. They took her to dinner, and she ate well.
"Why did you do that?" asked Jona, but Evelyn had no answer. She usually has an answer for everything, a story, an excuse, but this time she didn't seem to know anything had happened.
Jona called me at 6 pm, which was 7 pm in Colorado. I happened to be in Telluride, where the cell phone gets a signal. She related the whole story.
"Oh Jona, I'm sorry you had to go through another crisis--how scary," I said. It had been less than two weeks since the bingo game, when she had lost consciousness, gone to the ER, and ended up with a pacemaker.
"Yes, it was scary because she said, 'Oh, I'm dead.' But this time her tongue was not hanging out; she was not drooling or pale."
"Okay--well, you don't think she needs to go to the ER?"
"No, she's okay now," Jona concluded.
I said goodby and sat in the car. It was a rainy evening. Should I be doing something? At least I could call Bill or Jim or Emily. Actually, everyone was out of town. Bill was in San Antonio for a conference; Jim was in Houston for a conference, or had been until Hurricane Rita evacuated the town; Emily was driving Meridith back to college.
Emily's theories: 1) a Lewy Body event or 2) a petit mal seizure.
Bill said it was not a heart thing (one of the leading explanations of the bingo game collapse)because the pacemaker would now prevent the heart from slowing to the point of her losing consciousness. He rated Emily's theory #1 as possible and her theory #2 as unlikely. His theories: 1) a TIA (transient ischemic attack) or 2) what she wanted to do.
He called back the next day and said it might have been an "absence seizure," something that is not harmful. He wanted to know if they had stopped her anti-seizure medication. I checked, but she was still on Keppra, started after her anoxic seizures in June.
That evening I didn't try to reach Jim.
I drove back to Trout Lake, wondering how Mom could command my attention even here, a thousand miles away.
At least she hadn't died--or had she? Apparently she had hovered somewhere on the edge of consciousness, remote from the voices around her, and it had seemed like death.
At 5 pm, Jona decided to wake her up for dinner. But she wouldn't wake up.
"Evelyn, wake up. It's dinner time," Jona repeated, finally using the electric control to raise the recliner to a sitting-straight-up position.
The motion roused her. She opened her eyes and, looking at Jona, said, "Oh, I'm dead."
She closed her eyes again and was unrousable for ten minutes.
Jona ran to get Marnie and Bethlehem. Soon Beth, director of the Reminiscence Neighborhood, was in the room, along with Anna, the LVN in charge of the residence when the nurse was not present.
Jona kept talking to Evelyn, patting her hands, trying to get her to respond.
Her pulse was excellent, her blood pressure fine. But she did not respond. They debated what to do: Call the paramedics? No, her vitals were okay. Use the Epi-Pen? No, her tongue was not swollen or blocking her throat--her breathing continued.
Here eyeballs were moving left, then right beneath her eyelids. Was she in REM sleep? Or was it a petit mal seizure?
"Open your eyes! It's dinner time," Jona said. No response.
"Can you open your mouth?" She opened it slightly.
Suddenly Evelyn woke up and said, "Oh, you people leave me alone."
She was weak--her hands had no strength, but otherwise she seemed to be fine, as if nothing had happened. They took her to dinner, and she ate well.
"Why did you do that?" asked Jona, but Evelyn had no answer. She usually has an answer for everything, a story, an excuse, but this time she didn't seem to know anything had happened.
Jona called me at 6 pm, which was 7 pm in Colorado. I happened to be in Telluride, where the cell phone gets a signal. She related the whole story.
"Oh Jona, I'm sorry you had to go through another crisis--how scary," I said. It had been less than two weeks since the bingo game, when she had lost consciousness, gone to the ER, and ended up with a pacemaker.
"Yes, it was scary because she said, 'Oh, I'm dead.' But this time her tongue was not hanging out; she was not drooling or pale."
"Okay--well, you don't think she needs to go to the ER?"
"No, she's okay now," Jona concluded.
I said goodby and sat in the car. It was a rainy evening. Should I be doing something? At least I could call Bill or Jim or Emily. Actually, everyone was out of town. Bill was in San Antonio for a conference; Jim was in Houston for a conference, or had been until Hurricane Rita evacuated the town; Emily was driving Meridith back to college.
Emily's theories: 1) a Lewy Body event or 2) a petit mal seizure.
Bill said it was not a heart thing (one of the leading explanations of the bingo game collapse)because the pacemaker would now prevent the heart from slowing to the point of her losing consciousness. He rated Emily's theory #1 as possible and her theory #2 as unlikely. His theories: 1) a TIA (transient ischemic attack) or 2) what she wanted to do.
He called back the next day and said it might have been an "absence seizure," something that is not harmful. He wanted to know if they had stopped her anti-seizure medication. I checked, but she was still on Keppra, started after her anoxic seizures in June.
That evening I didn't try to reach Jim.
I drove back to Trout Lake, wondering how Mom could command my attention even here, a thousand miles away.
At least she hadn't died--or had she? Apparently she had hovered somewhere on the edge of consciousness, remote from the voices around her, and it had seemed like death.
Tuesday, September 20, 2005
Resurrection
Mom sailed out the hospital doors today, chatting happily and wearing the pink hat. No crowd of photographers recorded the event--they vanished on Friday after Britney and baby were discharged.
But jaws dropped, nevertheless. Anyone who saw her vegetative state on Friday or Saturday, or even part of yesterday, couldn't believe she was dressed and out of that hospital bed.
Was the sleepiness and slurred speech we saw then just her slowness to metabolize the anesthesia from the surgery on Wednesday evening? Or was it one of those Lewy Body states where, on some days, the brain just doesn't seem to boot up? Or was it the Remeron? She talked with her eyes closed, barely able to wake up enough for her meals.
Anyway, her blood was thin enough today (INR 2.0) that the doctor okayed her to leave. Yesterday I was praying that she would be awake and alert when the doctor came by to make the decision, and she was.
By 3 pm her caregiver Jona and I were giving her a shampoo in her room at Ocean View Assisted Living. By 5 pm she was in the dining room in her wheelchair, happy to be back at the table with the other residents.
Why didn't she collapse into a stupor from the effort of getting out of bed for the first time in 8 days, getting dressed, and enduring a shampoo and set?
I don't know--but I am going to take a planned, but shortened, drive to Colorado before anything else happens.
But jaws dropped, nevertheless. Anyone who saw her vegetative state on Friday or Saturday, or even part of yesterday, couldn't believe she was dressed and out of that hospital bed.
Was the sleepiness and slurred speech we saw then just her slowness to metabolize the anesthesia from the surgery on Wednesday evening? Or was it one of those Lewy Body states where, on some days, the brain just doesn't seem to boot up? Or was it the Remeron? She talked with her eyes closed, barely able to wake up enough for her meals.
Anyway, her blood was thin enough today (INR 2.0) that the doctor okayed her to leave. Yesterday I was praying that she would be awake and alert when the doctor came by to make the decision, and she was.
By 3 pm her caregiver Jona and I were giving her a shampoo in her room at Ocean View Assisted Living. By 5 pm she was in the dining room in her wheelchair, happy to be back at the table with the other residents.
Why didn't she collapse into a stupor from the effort of getting out of bed for the first time in 8 days, getting dressed, and enduring a shampoo and set?
I don't know--but I am going to take a planned, but shortened, drive to Colorado before anything else happens.
Saturday, September 17, 2005
The Turd
I walked into the hospital room to visit my mother, two days after she had a pacemaker implanted in her chest.
She lay in the bed pale and immobile with her eyes shut and mouth gaping open. I assumed she had not moved since my visit earlier in the day, had not left the bed since a difficult stumble onto the commode the day before the surgery. She had lost much of her mobility in the past month or two, since a previous hospitalization.
"Go ahead and take a break," I told Jona, her caregiver, who was helping her with meals and whatever she needed.
After she left, I saw a small round brown ball on the floor.
Kind of like the fake turd my daughter Roz likes to leave in the bathroom, along with plastic cockroaches, as a joke.
I picked it up with bare hands.
It was not fake.
"But this is a nice hospital," I thought to myself. "How can there be a turd on the floor?"
I threw it in the toilet, cleaned the floor, washed my hands, and forgot about it.
Until three days later, when my mother announced, as I was serving her lunch, "I'm having a BM!"
Not waiting to call an aide, I swung into action and managed to get her almost on the commode before much happened. Afterward an aide came and helped me clean her up and clean the floor.
By the time Jona returned, Mom was lying in bed, dressed and ready to leave the hospital, looking as peaceful as if nothing had happened.
But now I had an idea or two about how that turd got there.
She lay in the bed pale and immobile with her eyes shut and mouth gaping open. I assumed she had not moved since my visit earlier in the day, had not left the bed since a difficult stumble onto the commode the day before the surgery. She had lost much of her mobility in the past month or two, since a previous hospitalization.
"Go ahead and take a break," I told Jona, her caregiver, who was helping her with meals and whatever she needed.
After she left, I saw a small round brown ball on the floor.
Kind of like the fake turd my daughter Roz likes to leave in the bathroom, along with plastic cockroaches, as a joke.
I picked it up with bare hands.
It was not fake.
"But this is a nice hospital," I thought to myself. "How can there be a turd on the floor?"
I threw it in the toilet, cleaned the floor, washed my hands, and forgot about it.
Until three days later, when my mother announced, as I was serving her lunch, "I'm having a BM!"
Not waiting to call an aide, I swung into action and managed to get her almost on the commode before much happened. Afterward an aide came and helped me clean her up and clean the floor.
By the time Jona returned, Mom was lying in bed, dressed and ready to leave the hospital, looking as peaceful as if nothing had happened.
But now I had an idea or two about how that turd got there.
Monday, September 12, 2005
The Pink Hat
Waiting is a big part of what you do in a hospital.
Mom's surgery is probably going to be Tuesday, if the cardiologist has time today to analyze her case and make the decision. If not, it will be Wednesday. (The doctors point out that she's getting Heparin to stabilize the blood clot, so waiting is not a total waste of time.)
Meanwhile, Mom sits in her hospital bed, bored, feeling fine, chatting with Jona or me. She can't figure out why she is in the hospital. All she did was faint for a moment or two.
"Let's go to your house for dinner," she says. "And we'll go to church tomorrow."
"No," I say. "You can't just bust out of here. You're in the hospital. Church was yesterday, but we didn't go because you're here. Tomorrow you're going to have surgery--they're going to put in a pacemaker."
"Oh," she says with disappointment. We talk. She's telling me about the Bingo game and going to the ER.
"John came to visit me," she says, beaming. "He brought me a pink hat."
Which is partly true--he did visit her, a rare event. Usually she sees him at home when I bring her to spend Sunday afternoon, but this time it was in the ER.
It's also true that last summer he pointed out a bright pink sunhat in a hardware store, when we were on vacation and needed to bring back a gift. I gave it to her in July "from John."
"Where is that hat?" she asks. "John picked it out for me."
"It's back at Ocean View," I answer, but soon just for fun, I go to get it and put it on her.
She sits in splendor in the hospital bed, in the dazzling pink hat, surprising the various aides and medical people who pop into her room.
Mom's surgery is probably going to be Tuesday, if the cardiologist has time today to analyze her case and make the decision. If not, it will be Wednesday. (The doctors point out that she's getting Heparin to stabilize the blood clot, so waiting is not a total waste of time.)
Meanwhile, Mom sits in her hospital bed, bored, feeling fine, chatting with Jona or me. She can't figure out why she is in the hospital. All she did was faint for a moment or two.
"Let's go to your house for dinner," she says. "And we'll go to church tomorrow."
"No," I say. "You can't just bust out of here. You're in the hospital. Church was yesterday, but we didn't go because you're here. Tomorrow you're going to have surgery--they're going to put in a pacemaker."
"Oh," she says with disappointment. We talk. She's telling me about the Bingo game and going to the ER.
"John came to visit me," she says, beaming. "He brought me a pink hat."
Which is partly true--he did visit her, a rare event. Usually she sees him at home when I bring her to spend Sunday afternoon, but this time it was in the ER.
It's also true that last summer he pointed out a bright pink sunhat in a hardware store, when we were on vacation and needed to bring back a gift. I gave it to her in July "from John."
"Where is that hat?" she asks. "John picked it out for me."
"It's back at Ocean View," I answer, but soon just for fun, I go to get it and put it on her.
She sits in splendor in the hospital bed, in the dazzling pink hat, surprising the various aides and medical people who pop into her room.
Sunday, September 11, 2005
Analyzing The Event
Everything that happened yesterday is now known as The Event.
While I was talking with the nurse at 10:30 pm last night, the doctor walked in, Joshua G., a cheerful resident who sounded like Sherlock Holmes as he outlined the task of figuring out why Mom had fainted.
"We don't yet know why this event occurred, but after looking at her chest x-ray I ordered a CT scan that showed a mass near her heart: a first-order pulmonary embolism, somewhat significant, but subacute to chronic. It did not happen in the last 24 hours, but it was not on the scan done in June. It could have happened sometime in the last few weeks."
"So that isn't really why she fainted?"
"No--a blood clot can cause syncopy, but this probably was not the cause of The Event. We will observe her heart rate and other things for a few days, and we will give her Heparin followed by Coumadin."
"Okay," I said. "Thank you." I went home and to bed.
When I came back at 10:30 am, Dr. G. was still there. He had been up all night, and he had more to report.
"During the night her heart had a few pauses, about two seconds long, intermittently. Her heart rate dropped into the low 30s. Therefore, it's possible that she had a second-degree heart block yesterday. This could have caused her loss of consciousness. For this we usually recommend a demand pacemaker, which delivers a small jolt when the heart slows."
"Okay, fine" I said. But I was wondering how he could string two sentences together with no sleep. Nice guy, smiley, young--but I know how spacey I get when I'm sleep-deprived.
I called my brother Bill, who is a general surgeon in Washington state, to run this info by him.
"How could she get a blood clot, when she has a venal caval filter?" I asked.
He provided a background lecture on venal caval filters and why doctors don't use them as much now--"They can cause the vena cava to totally occlude."
He told me to ask: "Have they done a Dopplar duplex ultrasound of the great vessels?"
To remember this question, I wrote it down, trying to suppress the image in my mind of ocean-going vessels. Knowing a little bit of Medispeak is like knowing a little French. When you ask a question and sound fluent, you provoke a torrent of response that may be incomprehensible.
"Also ask if they know where the clot came from," he said. "The ultasound may show a bigger clot somewhere else, from which this clot broke off."
When I called my sister Emily, she reminded me of another possible cause of the fainting: an LBD-type of event. Lewy Body Dementia causes a fluctuating mental status--grogginess one day, alertness the next, agitation the next. But apparently these mental changes can include moments of totally checking out--and then returning.
To summarize: we don't know why The Event occurred. But several detectives are on the case.
While I was talking with the nurse at 10:30 pm last night, the doctor walked in, Joshua G., a cheerful resident who sounded like Sherlock Holmes as he outlined the task of figuring out why Mom had fainted.
"We don't yet know why this event occurred, but after looking at her chest x-ray I ordered a CT scan that showed a mass near her heart: a first-order pulmonary embolism, somewhat significant, but subacute to chronic. It did not happen in the last 24 hours, but it was not on the scan done in June. It could have happened sometime in the last few weeks."
"So that isn't really why she fainted?"
"No--a blood clot can cause syncopy, but this probably was not the cause of The Event. We will observe her heart rate and other things for a few days, and we will give her Heparin followed by Coumadin."
"Okay," I said. "Thank you." I went home and to bed.
When I came back at 10:30 am, Dr. G. was still there. He had been up all night, and he had more to report.
"During the night her heart had a few pauses, about two seconds long, intermittently. Her heart rate dropped into the low 30s. Therefore, it's possible that she had a second-degree heart block yesterday. This could have caused her loss of consciousness. For this we usually recommend a demand pacemaker, which delivers a small jolt when the heart slows."
"Okay, fine" I said. But I was wondering how he could string two sentences together with no sleep. Nice guy, smiley, young--but I know how spacey I get when I'm sleep-deprived.
I called my brother Bill, who is a general surgeon in Washington state, to run this info by him.
"How could she get a blood clot, when she has a venal caval filter?" I asked.
He provided a background lecture on venal caval filters and why doctors don't use them as much now--"They can cause the vena cava to totally occlude."
He told me to ask: "Have they done a Dopplar duplex ultrasound of the great vessels?"
To remember this question, I wrote it down, trying to suppress the image in my mind of ocean-going vessels. Knowing a little bit of Medispeak is like knowing a little French. When you ask a question and sound fluent, you provoke a torrent of response that may be incomprehensible.
"Also ask if they know where the clot came from," he said. "The ultasound may show a bigger clot somewhere else, from which this clot broke off."
When I called my sister Emily, she reminded me of another possible cause of the fainting: an LBD-type of event. Lewy Body Dementia causes a fluctuating mental status--grogginess one day, alertness the next, agitation the next. But apparently these mental changes can include moments of totally checking out--and then returning.
To summarize: we don't know why The Event occurred. But several detectives are on the case.
Saturday, September 10, 2005
A Game of Bingo
In the Reminiscence Neighborhood, Bingo can be exciting.
In addition to what numbers are called and varying levels of ability at covering numbers, you've got many other levels of chance: whether players will leave the table, whether someone not playing will make an escape attempt through the secure door, whether someone's heart or brain will shout "Bingo," ending the game.
Today I called Mom to say, "I'm flying home from New York--I'll see you tomorrow."
"I'm winning!" she reported, using the cell phone of her caregiver, Jona.
Within minutes I boarded the plane and turned off my cell phone, happily, thinking "For the next five or six hours, no one needs me. I can be out of touch with the world."
But half an hour later, Jona noticed that Evelyn was slumped in her chair.
"Evelyn, are you okay? Evelyn!" All the care givers joined in the effort to rouse her, but she sat motionless, her body bent forward and to one side.
"Evelyn, can you talk to me? Evelyn! Can you talk to me?" cried Jona. This had never before happened in the year she had been working six days a week as Evelyn's private caregiver. There had been a crisis three months earlier, an allergic reaction causing Evelyn's tongue to swell and block her airway, but that had happened on Connie's shift, and today seemed different from that. Her tongue was not swollen, though it was hanging out of her mouth, and saliva was drooling from each corner.
"Marnie, call 911!" Jona decided.
Phone calls went out and almost two minutes passed as she continued to be unresponsive. Everyone tried to rouse her.
And then, amazingly, she opened her eyes. "Leave me alone... I want to go back to my room."
Meanwhile the nurse's aide and medications nurse rushed into the room from the second floor to find a big fuss being made over a patient who seemed to be fine.
"Why did you call 911? She doesn't need to go to the ER."
"Anne told us to call 911 if anything happens, even if it turns out that she's fine."
"You didn't need to call 911!"
Then the paramedics arrived, trying to assess the situation.
"Leave me alone--let me go back to my room!" Evelyn yelled.
"She's pale--her skin is cold," Jona told them. "She was unconscious for one or two minutes."
"I was just sleeping," Evelyn insisted.
But the paramedics took her vitals and decided not to take any chances. Over her protests, they put her on a stretcher and carried her out to the ambulance. Jona stayed with her and negotiated the questions and paperwork of the emergency room--all without so much as a Medicare or Blue Cross card.
Meanwhile Lorraine at the reception desk of Ocean View Assisted Living was enjoying a real emergency. She reached Emily at a football game in Maryland: "Your mother's unconscious! The paramedics are arriving!" Somehow word of Evelyn's miraculous recovery never reached her as she witnessed the action at the front door, including the inglorious exit via stretcher.
Lorraine did not reach me. I was peacefully reading The Atlantic at 40,000 feet, then sleeping for the last hour of the flight.
"You may turn on your cell phones," I heard and realized we were taxiing to the gate. When I turned the thing on, it exploded with messages.
Emily in a voice of alarm: "Mom's been admitted to the hospital. She was playing Bingo...."
John in a text message: "I visited your mother in the ER. She seems fine but--"
Groggily, I stumbled off the plane and to the baggage area, where John met me and took me directly to the hospital. By the time I got to bed, it was 3 am New York time.
In the constant game of chance at Ocean View Assisted Living, Mom was the winner of today's prize: an ambulance ride.
In addition to what numbers are called and varying levels of ability at covering numbers, you've got many other levels of chance: whether players will leave the table, whether someone not playing will make an escape attempt through the secure door, whether someone's heart or brain will shout "Bingo," ending the game.
Today I called Mom to say, "I'm flying home from New York--I'll see you tomorrow."
"I'm winning!" she reported, using the cell phone of her caregiver, Jona.
Within minutes I boarded the plane and turned off my cell phone, happily, thinking "For the next five or six hours, no one needs me. I can be out of touch with the world."
But half an hour later, Jona noticed that Evelyn was slumped in her chair.
"Evelyn, are you okay? Evelyn!" All the care givers joined in the effort to rouse her, but she sat motionless, her body bent forward and to one side.
"Evelyn, can you talk to me? Evelyn! Can you talk to me?" cried Jona. This had never before happened in the year she had been working six days a week as Evelyn's private caregiver. There had been a crisis three months earlier, an allergic reaction causing Evelyn's tongue to swell and block her airway, but that had happened on Connie's shift, and today seemed different from that. Her tongue was not swollen, though it was hanging out of her mouth, and saliva was drooling from each corner.
"Marnie, call 911!" Jona decided.
Phone calls went out and almost two minutes passed as she continued to be unresponsive. Everyone tried to rouse her.
And then, amazingly, she opened her eyes. "Leave me alone... I want to go back to my room."
Meanwhile the nurse's aide and medications nurse rushed into the room from the second floor to find a big fuss being made over a patient who seemed to be fine.
"Why did you call 911? She doesn't need to go to the ER."
"Anne told us to call 911 if anything happens, even if it turns out that she's fine."
"You didn't need to call 911!"
Then the paramedics arrived, trying to assess the situation.
"Leave me alone--let me go back to my room!" Evelyn yelled.
"She's pale--her skin is cold," Jona told them. "She was unconscious for one or two minutes."
"I was just sleeping," Evelyn insisted.
But the paramedics took her vitals and decided not to take any chances. Over her protests, they put her on a stretcher and carried her out to the ambulance. Jona stayed with her and negotiated the questions and paperwork of the emergency room--all without so much as a Medicare or Blue Cross card.
Meanwhile Lorraine at the reception desk of Ocean View Assisted Living was enjoying a real emergency. She reached Emily at a football game in Maryland: "Your mother's unconscious! The paramedics are arriving!" Somehow word of Evelyn's miraculous recovery never reached her as she witnessed the action at the front door, including the inglorious exit via stretcher.
Lorraine did not reach me. I was peacefully reading The Atlantic at 40,000 feet, then sleeping for the last hour of the flight.
"You may turn on your cell phones," I heard and realized we were taxiing to the gate. When I turned the thing on, it exploded with messages.
Emily in a voice of alarm: "Mom's been admitted to the hospital. She was playing Bingo...."
John in a text message: "I visited your mother in the ER. She seems fine but--"
Groggily, I stumbled off the plane and to the baggage area, where John met me and took me directly to the hospital. By the time I got to bed, it was 3 am New York time.
In the constant game of chance at Ocean View Assisted Living, Mom was the winner of today's prize: an ambulance ride.
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