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.
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?

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.

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?

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...

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.

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."
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.

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.

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.
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.
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.
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.
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."
"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.

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.

Sunday, October 09, 2005


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.

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.

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.

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.

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.