Today I'm taking Mom out in the minivan for her last big outing before my surgery next Tuesday. She probably won't leave her residence for 4-5 weeks after this, until her doctor's appointment on June 12, but I don't tell her this.
Though we are supposed to arrive at Beverly Hills Prosthetics and Orthotics at 11 am, I have tried to cram too many errands into my morning before arriving to pick Mom up. It's my last day to do everything because John and I leave tomorrow with Marie for his cousin's daughter's wedding in Chicago, returning Monday night just before my Tuesday morning surgery.
I'm feeling pressured because I need to return Mom to her residence in time for me to attend a meeting of the local violence prevention coalition, arriving with snacks and copies of last month's minutes.
At any rate, I am not feeling calm or patient when I arrive at 10:30 am. If only Jona were still working the day shift with Mom, so she could have Mom ready at the door when I arrive.
Instead I have to go to Mom's floor, assist her to the toilet, and wheel her down to my parked car.
"I have to have my purse! My fur coat!" Mom cries as I try to wheel her out the door of her room.
The purse is a charade; I keep her Blue Cross card and checkbook in my wallet, but she fumbles with her purse whenever we pay for something. The fur coat is actually a sweater trimmed with rabbit fur.
"Here you go, but it's not cold out. You don't need to put the sweater on," I argue.
"My blood is colder than your blood," she retorts, trying to pull it on over the pink sweater and blouse she is already wearing.
"Okay!" I say crossly. She has one sleeve on and I roughly pull on the other.
She looks rumpled and odd with two sweaters on. Because the second sweater is angora wool, she will be slippery in my hands when I lift her out of the wheelchair and into the car. I've argued this point with her before, but I don't try today.
Soon we are flying down the freeway, taking the La Cienega exit at 11 am. I am trying to remember whether I turn right or left on Wilshire Boulevard to find Beverly Hills P- O Inc.
After locating a handicapped parking place, getting Mom into the wheelchair (slippery sweater and all), and getting up the elevator, we enter the elegant office.
David Cooley, PT, CPO, is wonderfully kind even though it is 11:15 am and we have thrown his next appointments off schedule.
We saw him for the first time last January, when he recommended that Mom wear a wool-lined boot at night to keep the inversion of her feet from getting worse. At that time he suggested not buying the malleable retrocalcineal passive resistive ankle-foot orthotics (PRAFOs) at a cost of $325 for each foot because we could get a similar boot at any medical equipment store, so we passed on the fancy PRAFOs and just ordered a lesser boot from Wishing Well.
It soon became apparent, however, that making Mom sleep with the cheaper model on was pointless. During the night the boot's velcro ripped away from the cross piece meant to keep the boot in a vertical position. Eventually my sister Emily recommended that we go back to the orthotics guy, where we are today.
"Evelyn has contractures of the hip, knee, ankle, and Achilles tendon," David reports after rotating Mom's feet. "Her foot cannot rest flat on the floor. She has a 40-45 degree equinus contracture with a varus component. We can't improve the contracture of her ankle and foot, but we can arrest it."
He explains that the equino contracture means she can't extend her foot down, while varus means her foot turns in. He says the varus actually can be reduced but not the equinus.
Then David explains the purchase options, again suggesting that we not buy the boots that cost $325 each. Another option is bilateral AFOs, splints inserted into her shoes to keep her feet straighter, only useful when she is actually walking.
With the level of medical terminology and decision-making clearly beyond my reach, I call Emily, who has a Master's in physical therapy, and miraculously reach her on her cell.
"Okay, Emily, could you talk with this gentleman about orthotics and let me know what you think we should do?"
After a short but technical consultation with David, Emily concludes that the PRAFOs are definitely the way to go, but that we should get them through brother Bill, a doctor working at Fort Lewis Army Base near Tacoma. He can probably get them for next to nothing.
"Okay," I say. "But I don't know... I'm leaving for Chicago tomorrow and then having surgery. I can't be in charge of getting these boots through Bill."
"Do whatever you want," she says.
"I like the red ones and the white ones--the tan ones are all right too," Mom says. She is talking about her SAS shoes of various colors.
I tell David, "We'll take the PRAFOs now. We'll write a check and see whether we can get reimbursement from Blue Cross."
By this time it's almost noon, and he needs to go to his next appointment, but he shuffles around in his closet, finds two of the things, and spends ten minutes fitting them for Mom's feet.
They are to be worn at night and when she is resting in her recliner, to keep her toes pointed up to the ceiling and her ankle flexed as close to a right angle as possible.
We make a trip to the bathroom and head back to Santa Irena.
As we wheel back to the car, Mom is happy because she is holding a big shiny bag with her new shoes and the words Beverly Hills Prosthetics Orthotics embossed on the side.
She asks for an ice cream cone, but the best I can do is a frozen ice cream drumstick from the pharmacy in the building.
Then we go to the dry cleaners and another ice cream shop on the way home.
She is back to Ocean View by 2 pm, but it's 3 pm by the time I leave the building and head for my next appointment.
To her this excursion meant lots of fun and attention. Good--but it's her last until mid-June.
Thursday, May 18, 2006
Wednesday, May 17, 2006
How Much Your Visits Mean
I didn't visit Mom until 6 pm for the third day in a row (I'm preparing to go away for a four-day weekend, and when I get back I'm having a hysterectomy, so I'm trying to get all loose ends tied up this week.)
When I arrived, Mom was angry.
My usual big cheery "Hi, Mom! How are you?" met a sullen response.
"Not very well because you haven't been here."
"I was here yesterday, but you were sleepy, watching Lucy. Don't you remember?" I kneel on the floor, face to face with Mom in her wheelchair so she can see me.
"You don't know how much your visits mean to me."
"Oh... but I did come!"
"These people don't do things right. They don't care. I have to keep telling them."
"But Connie was here," I say, "She's pretty good." I grin up at Connie, her private caregiver, who spends a lot of time listening to Mom's complaints about how neglected she is. Connie works 5-10 pm MWF and 2-10 pm TTh.
"And tomorrow she'll take you out to get your nails done," I add, taking Mom's hand. "Look, you need to get your nails done."
The nails are too long and the pink polish is getting a bit ragged.
"Yes, it's been three weeks," Connie says.
"Oh dear," I sigh. "Has it really? Let's write it on the calendar for every other Thursday, otherwise we'll forget."
A few months ago parts of her nails turned white, and a manicurist told me it was because the polish had been left on too long. I never wear polish, so I don't know these things, but I had resolved to make sure she had manicures every three weeks.
"Good. I'll take her tomorrow," Connie agreed.
"What do I need to buy for her?" I asked. "I want to get enough Depends and plastic gloves and things to last for ten days or more."
"I made you a list," Connie says, handing it to me.
"Oh thank you," I say. "That's great."
"I have to go to Sav-On now, Mom. I'll be back in an hour or so. Connie will give you your shower."
"Okay," Mom says grudgingly.
I'm off to buy 4 packages of Depends and lots of other things, but echoing in my mind are Mom's words:
You don't know how much your visits mean to me.
When I arrived, Mom was angry.
My usual big cheery "Hi, Mom! How are you?" met a sullen response.
"Not very well because you haven't been here."
"I was here yesterday, but you were sleepy, watching Lucy. Don't you remember?" I kneel on the floor, face to face with Mom in her wheelchair so she can see me.
"You don't know how much your visits mean to me."
"Oh... but I did come!"
"These people don't do things right. They don't care. I have to keep telling them."
"But Connie was here," I say, "She's pretty good." I grin up at Connie, her private caregiver, who spends a lot of time listening to Mom's complaints about how neglected she is. Connie works 5-10 pm MWF and 2-10 pm TTh.
"And tomorrow she'll take you out to get your nails done," I add, taking Mom's hand. "Look, you need to get your nails done."
The nails are too long and the pink polish is getting a bit ragged.
"Yes, it's been three weeks," Connie says.
"Oh dear," I sigh. "Has it really? Let's write it on the calendar for every other Thursday, otherwise we'll forget."
A few months ago parts of her nails turned white, and a manicurist told me it was because the polish had been left on too long. I never wear polish, so I don't know these things, but I had resolved to make sure she had manicures every three weeks.
"Good. I'll take her tomorrow," Connie agreed.
"What do I need to buy for her?" I asked. "I want to get enough Depends and plastic gloves and things to last for ten days or more."
"I made you a list," Connie says, handing it to me.
"Oh thank you," I say. "That's great."
"I have to go to Sav-On now, Mom. I'll be back in an hour or so. Connie will give you your shower."
"Okay," Mom says grudgingly.
I'm off to buy 4 packages of Depends and lots of other things, but echoing in my mind are Mom's words:
You don't know how much your visits mean to me.
Tuesday, May 16, 2006
I Love Lucy
Visiting Mom is not my priority this week, so I don't show up at her residence until 7 pm or so.
Earlier in the day I made a pre-op visit to the doctor for my upcoming surgery and went to a P.E.O. committee meeting, helping plan programs for meetings in the coming year. (I count P.E.O. time as time spent on Mom.)
When I arrive at her room, she is already showered, dressed in her nightgown, and resting in her recliner with her pink flannel blanket tucked up to her chin, watching an episode of I Love Lucy on the laptop computer propped up on a chair in front of her.
Her room is dark except for the glow of the computer screen in black and white. Connie stands by, cleaning up towels and things from the bath.
"Hi, Mom. How are you?" I begin. "I see you're watching Lucy."
"Yes--she's always so funny," Mom answers, her small face peeping out from the blanket that covers the rest of her. Her eyes are slits, barely open. She hardly turns her head to greet me, so completely is her attention absorbed by Lucy's antics.
A year ago I bought her a boxed set of 6 CDs of I Love Lucy, and watching them has become an evening ritual.
Tonight Lucy is trying to play the saxophone in order to get into Ricky's band and travel with him. She learned the saxophone in high school but can only play one song, squawkingly.
"That's like you with the oboe," I say. "That time the Telluride High School band went to the competition in Grand Junction, and the director told you not to play--just to pretend."
"Yes," says Mom, laughing. "'Don't you dare make a sound!' he told me."
I watch the show for a few minutes but leave shortly after.
She doesn't need me. She and Connie are perfectly happy.
Earlier in the day I made a pre-op visit to the doctor for my upcoming surgery and went to a P.E.O. committee meeting, helping plan programs for meetings in the coming year. (I count P.E.O. time as time spent on Mom.)
When I arrive at her room, she is already showered, dressed in her nightgown, and resting in her recliner with her pink flannel blanket tucked up to her chin, watching an episode of I Love Lucy on the laptop computer propped up on a chair in front of her.
Her room is dark except for the glow of the computer screen in black and white. Connie stands by, cleaning up towels and things from the bath.
"Hi, Mom. How are you?" I begin. "I see you're watching Lucy."
"Yes--she's always so funny," Mom answers, her small face peeping out from the blanket that covers the rest of her. Her eyes are slits, barely open. She hardly turns her head to greet me, so completely is her attention absorbed by Lucy's antics.
A year ago I bought her a boxed set of 6 CDs of I Love Lucy, and watching them has become an evening ritual.
Tonight Lucy is trying to play the saxophone in order to get into Ricky's band and travel with him. She learned the saxophone in high school but can only play one song, squawkingly.
"That's like you with the oboe," I say. "That time the Telluride High School band went to the competition in Grand Junction, and the director told you not to play--just to pretend."
"Yes," says Mom, laughing. "'Don't you dare make a sound!' he told me."
I watch the show for a few minutes but leave shortly after.
She doesn't need me. She and Connie are perfectly happy.
Monday, May 15, 2006
Fluctuating Cognition
One of the main symptoms of Lewy Body Disease is the affected person's abilities fluctuating from day to day, even hour to hour.
Today Mom had a sleepy day. After sleeping all night, she slept most of the day.
I didn't visit her until 6 pm, and the caregivers immediately reported that she had been sleeping in her recliner all day. It was difficult to get her awake to go to lunch and dinner.
When I greeted her, she immediately spoke to me and opened her eyes, looking normal to me for a few moments.
"I brought you from flowers from Marie."
"Oh, good. They're beautiful," she said, looking at them.
"Marie should have brought them herself, but today is her first day at her job, being a hostess for a restaurant."
"Oh, I see. She'll enjoy that."
"I see you had your hair done," I said.
"Yes, but that woman is always a problem," Mom said. True. The hairdresser sends customers back to their rooms if she isn't ready for them, sometimes makes a few curls with a curling iron instead of putting the hair on rollers to dry.
But while I spoke to Connie, her private caregiver, for a few minutes, Mom went back to sleep.
"Okay, Mom. I'll put the flowers in water. Look at this one--isn't it pretty?"
No response. She sat in her wheelchair with her eyes closed.
"You look sleepy, Mom."
No response.
"I guess we had such a big day yesterday, going to Denny's and everything, that you're tired today."
No response.
"Okay, I'm going to go to Sav-On and buy some Depends. I'll be back soon."
No response. Not even opening her eyes.
It's as if her brain were a computer that hadn't booted up properly. Just no screen there at all.
What a contrast to yesterday, when she did so much walking and talking, laughing and telling me one crazy story after another.
It's as if she were manic yesterday or in high gear but locked in neutral today.
Now I feel grateful for the interaction we had yesterday, strange as some of it was. At least she was somewhat like her old self, talking and laughing.
Today is scary. It reminds me that each day is a gift, not guaranteed for tomorrow.
Today Mom had a sleepy day. After sleeping all night, she slept most of the day.
I didn't visit her until 6 pm, and the caregivers immediately reported that she had been sleeping in her recliner all day. It was difficult to get her awake to go to lunch and dinner.
When I greeted her, she immediately spoke to me and opened her eyes, looking normal to me for a few moments.
"I brought you from flowers from Marie."
"Oh, good. They're beautiful," she said, looking at them.
"Marie should have brought them herself, but today is her first day at her job, being a hostess for a restaurant."
"Oh, I see. She'll enjoy that."
"I see you had your hair done," I said.
"Yes, but that woman is always a problem," Mom said. True. The hairdresser sends customers back to their rooms if she isn't ready for them, sometimes makes a few curls with a curling iron instead of putting the hair on rollers to dry.
But while I spoke to Connie, her private caregiver, for a few minutes, Mom went back to sleep.
"Okay, Mom. I'll put the flowers in water. Look at this one--isn't it pretty?"
No response. She sat in her wheelchair with her eyes closed.
"You look sleepy, Mom."
No response.
"I guess we had such a big day yesterday, going to Denny's and everything, that you're tired today."
No response.
"Okay, I'm going to go to Sav-On and buy some Depends. I'll be back soon."
No response. Not even opening her eyes.
It's as if her brain were a computer that hadn't booted up properly. Just no screen there at all.
What a contrast to yesterday, when she did so much walking and talking, laughing and telling me one crazy story after another.
It's as if she were manic yesterday or in high gear but locked in neutral today.
Now I feel grateful for the interaction we had yesterday, strange as some of it was. At least she was somewhat like her old self, talking and laughing.
Today is scary. It reminds me that each day is a gift, not guaranteed for tomorrow.
Sunday, May 14, 2006
Are You Having a Good Mother's Day?
I wake at 3:15 am and can't go back to sleep. I hear my daughter Marie in the kitchen finding something to eat. She had a mini-crisis yesterday, and I'm a little worried about her.
By 4:15 am she's back in bed and I get up. I was planning to get up early anyway to get to my mother's assisted living at 6 am and dress her for church. Just three hours of sleep, oh well.
By 4:15 am she's back in bed and I get up. I was planning to get up early anyway to get to my mother's assisted living at 6 am and dress her for church. Just three hours of sleep, oh well.
I bake a birthday cake for Marie, who turns 19 today. I turn the timer off a minute before it will buzz so the noise won't wake anyone, but then I forget the oven for ten more minutes and burn the cake.
At 6:15 I am driving to Ocean View. The first stop light I encounter is not working, as usual. It stays red for me while cycling through green lights for the other directions three times. Finally I run the light, as I have on other days, including once when Mom nearly died of asphyxiation before I got there and cleared her throat. Today, calling the police department to report the light, I am told to call back on Monday. By this time I am pretty upset, maybe because I've had so little sleep.
~ ~ ~
As I arrive in the Reminiscence Neighborhood, April greets me.
"I just peeked in at Evelyn. She's still sleeping."
Good! I could use a few minutes of peace and quiet before dealing with her. I enter Mom's room and look around the corner toward her bed. Her eyes are wide open. She lies there looking toward the window and doesn't see me.
I decide to sit down and take five before announcing that I am here, but she hears me.
"Mother?" she asks.
"Yes," I say wearily. "I'm here."
"Oh good," she says.
I help her out of bed, into the wheelchair, and onto the toilet.
She begins telling me about the time when her brother Elbert was dying and she was in Ridgway and he called her and said, "Can you come to me? I don't want to die alone" and she came; then she's talking about his funeral. I have heard this story many times in the past couple of months, but it's mostly out of her imagination. She spoke to him on the phone before he died in June, 1998, and she drove from Boulder to Mancos, Colorado, for his funeral, but she was not at his death bed. I don't try to correct her.
I dress her in a colorful pink and green calf-length skirt with a muted green pullover sweater. She asks to wear her pink floppy hat and her rabbit-fur trimmed sweater. As I put lipstick and rouge on her, she starts singing gaily: "In her Easter bonnet, with all the flowers on it, she'll be the grandest lady in the Easter parade."
I decide to change the sheets on her bed and put one folded sheet in her lap while I pull a fitted sheet onto the mattress, but the sheet worries her. She starts to unfold it.
"Oh God, I don't think I know how to use this. What is it? Oh, it's just a pillow case. No, a purse." Her attention has been distracted by her purse lying in an open drawer nearby. I take the sheet. As she tries to pull the purse out of the drawer, the things inside slip out. "What is all that? Everything in it, everything's coming out. I have to have a proper one. I think it's the one that's meant for today."
Once the chores are done, I help her to stand at her walker and she walks to the dining room, about one hundred feet. "Don't hold onto me!" she says, proving that she can walk alone.
I leave her there to eat breakfast while I rest in her room and take care of a few things, like a phone call to my daughter in Spain.
~ ~ ~
After breakfast, Mom walks back to her room with my help.
"Good," I say. "You've had your exercise for the day." I try to make sure she does at least this much walking daily to slow down the curling in of her feet. My sister is concerned about this inversion that happens when she just sits in her recliner not walking.
"I'm going to walk into church," Mom announces. "I don't like to be in that chair all the time."
"Okay," I say, taking on the challenge. "We're getting an early start today, so you can walk in with your walker if you want to."
And she actually does it. I park right in front and pull her up to stand at the walker; she walks up the wheelchair ramp past the ushers (who delay us trying to give us each a flower for Mother's Day) and collapses in the nearest pew on the center aisle.
I feel like shouting, "Hallelujah! Look, everyone! The lame are walking today. Evelyn walked in without her wheelchair."
After church a couple of people do notice and congratulate her as she walks back to the car.
At the car a complete stranger asks, "Are you her daughter?" and starts a riff on mother care and her own mother who died a few years ago.
"Would you mind opening the car door?" I ask. Mom is about to collapse again; I am holding her up, and I don't have a free hand to open the door.
"I have to sit! Just let me sit down!" Mom is saying as she pants like someone who has run a mile.
"No, don't sit here-grab onto car door," I say. "Here's the bar you hold onto."
The chatty stranger helps me pull the walker out of the way so I can I can get Mom into the car. I load her walker, her purse, and my bag into the back seat, taking out my cell phone to keep in the front seat with me.
Then I put her seat belt on, laying the cell phone down on the roof of the van for a moment.
At 6:15 I am driving to Ocean View. The first stop light I encounter is not working, as usual. It stays red for me while cycling through green lights for the other directions three times. Finally I run the light, as I have on other days, including once when Mom nearly died of asphyxiation before I got there and cleared her throat. Today, calling the police department to report the light, I am told to call back on Monday. By this time I am pretty upset, maybe because I've had so little sleep.
~ ~ ~
As I arrive in the Reminiscence Neighborhood, April greets me.
"I just peeked in at Evelyn. She's still sleeping."
Good! I could use a few minutes of peace and quiet before dealing with her. I enter Mom's room and look around the corner toward her bed. Her eyes are wide open. She lies there looking toward the window and doesn't see me.
I decide to sit down and take five before announcing that I am here, but she hears me.
"Mother?" she asks.
"Yes," I say wearily. "I'm here."
"Oh good," she says.
I help her out of bed, into the wheelchair, and onto the toilet.
She begins telling me about the time when her brother Elbert was dying and she was in Ridgway and he called her and said, "Can you come to me? I don't want to die alone" and she came; then she's talking about his funeral. I have heard this story many times in the past couple of months, but it's mostly out of her imagination. She spoke to him on the phone before he died in June, 1998, and she drove from Boulder to Mancos, Colorado, for his funeral, but she was not at his death bed. I don't try to correct her.
I dress her in a colorful pink and green calf-length skirt with a muted green pullover sweater. She asks to wear her pink floppy hat and her rabbit-fur trimmed sweater. As I put lipstick and rouge on her, she starts singing gaily: "In her Easter bonnet, with all the flowers on it, she'll be the grandest lady in the Easter parade."
I decide to change the sheets on her bed and put one folded sheet in her lap while I pull a fitted sheet onto the mattress, but the sheet worries her. She starts to unfold it.
"Oh God, I don't think I know how to use this. What is it? Oh, it's just a pillow case. No, a purse." Her attention has been distracted by her purse lying in an open drawer nearby. I take the sheet. As she tries to pull the purse out of the drawer, the things inside slip out. "What is all that? Everything in it, everything's coming out. I have to have a proper one. I think it's the one that's meant for today."
Once the chores are done, I help her to stand at her walker and she walks to the dining room, about one hundred feet. "Don't hold onto me!" she says, proving that she can walk alone.
I leave her there to eat breakfast while I rest in her room and take care of a few things, like a phone call to my daughter in Spain.
~ ~ ~
After breakfast, Mom walks back to her room with my help.
"Good," I say. "You've had your exercise for the day." I try to make sure she does at least this much walking daily to slow down the curling in of her feet. My sister is concerned about this inversion that happens when she just sits in her recliner not walking.
"I'm going to walk into church," Mom announces. "I don't like to be in that chair all the time."
"Okay," I say, taking on the challenge. "We're getting an early start today, so you can walk in with your walker if you want to."
And she actually does it. I park right in front and pull her up to stand at the walker; she walks up the wheelchair ramp past the ushers (who delay us trying to give us each a flower for Mother's Day) and collapses in the nearest pew on the center aisle.
I feel like shouting, "Hallelujah! Look, everyone! The lame are walking today. Evelyn walked in without her wheelchair."
After church a couple of people do notice and congratulate her as she walks back to the car.
At the car a complete stranger asks, "Are you her daughter?" and starts a riff on mother care and her own mother who died a few years ago.
"Would you mind opening the car door?" I ask. Mom is about to collapse again; I am holding her up, and I don't have a free hand to open the door.
"I have to sit! Just let me sit down!" Mom is saying as she pants like someone who has run a mile.
"No, don't sit here-grab onto car door," I say. "Here's the bar you hold onto."
The chatty stranger helps me pull the walker out of the way so I can I can get Mom into the car. I load her walker, her purse, and my bag into the back seat, taking out my cell phone to keep in the front seat with me.
Then I put her seat belt on, laying the cell phone down on the roof of the van for a moment.
~ ~ ~
Why didn't I put it in my pocket?
A few moments later I am driving past the house where Nichole Brown Simpson was murdered, making my usual mental nod to her memory, and I suddenly think about my teenager and her birthday. I should call her. Where's my cell?
Nowhere. With a sinking feeling I remember putting it on the roof of the van.
I drive back to the church, search the street, make inquiries for lost & found, and start retracing my driving path.
Mom is worried: "It's all my fault. You were trying so hard to help me."
"No," I tell her. "It's okay."
Then I find it, smashed into five or six pieces where I made a left turn, already two blocks and one right turn away from where I had parked. Oh well, at least the mystery is solved.
~ ~ ~
We head home to greet the birthday girl and put the sheets in the washing machine, but no one is home, so we're off to Denny's for our big Mother's Day lunch out.
I'm going the extra mile, instead of serving Mom lunch at my house, partly because I will be out of town next weekend and recovering from a surgery the following weekend. This excursion will have to last her for a while.
This is the place to be on Mother's Day! says a sign near the Denny's entrance.
Apparently a lot of people agree; the place is packed with an ethnic mix that matches the state of California--51% Latino, 20% African-American and Asian, 30% Euro-American.
After a short wait we are escorted to a booth and I manage to get Mom into it. She has senior chicken-fried steak with French fries and coleslaw. I pass up the senior menu to have an "ultimate" omelette. We watch the lively scene around us, including many extended families that take up two or three booths.
"I like your shirt," she says. "I want a shirt like that, that says Caring."
I am wearing a black t-shirt that says, "Invest in caring not killing--Annual military spending is 10 times the money needed globally to provide basic food, water, health care and housing." It shows a Muslim mother with a baby on her back.
A few moments later I am driving past the house where Nichole Brown Simpson was murdered, making my usual mental nod to her memory, and I suddenly think about my teenager and her birthday. I should call her. Where's my cell?
Nowhere. With a sinking feeling I remember putting it on the roof of the van.
I drive back to the church, search the street, make inquiries for lost & found, and start retracing my driving path.
Mom is worried: "It's all my fault. You were trying so hard to help me."
"No," I tell her. "It's okay."
Then I find it, smashed into five or six pieces where I made a left turn, already two blocks and one right turn away from where I had parked. Oh well, at least the mystery is solved.
~ ~ ~
We head home to greet the birthday girl and put the sheets in the washing machine, but no one is home, so we're off to Denny's for our big Mother's Day lunch out.
I'm going the extra mile, instead of serving Mom lunch at my house, partly because I will be out of town next weekend and recovering from a surgery the following weekend. This excursion will have to last her for a while.
This is the place to be on Mother's Day! says a sign near the Denny's entrance.
Apparently a lot of people agree; the place is packed with an ethnic mix that matches the state of California--51% Latino, 20% African-American and Asian, 30% Euro-American.
After a short wait we are escorted to a booth and I manage to get Mom into it. She has senior chicken-fried steak with French fries and coleslaw. I pass up the senior menu to have an "ultimate" omelette. We watch the lively scene around us, including many extended families that take up two or three booths.
"I like your shirt," she says. "I want a shirt like that, that says Caring."
I am wearing a black t-shirt that says, "Invest in caring not killing--Annual military spending is 10 times the money needed globally to provide basic food, water, health care and housing." It shows a Muslim mother with a baby on her back.
This is my failed attempt to deflect unwanted Mother's Day sentimentality. So far dozens of people, many of them strangers, have wished me a Happy Mother's Day, and ushers at church have pressed flowers into my hands.
In her right mind, Mom would never have asked to have a shirt like this, but now she understands that it is political and concerned.
"If I get a shirt like that, it'll show that I should have been more caring," she says.
"No, you are caring," I say, but she is now saying something about "when China starts fighting Japan... change the world."
Conversation shifts back to her brother.
"Everybody loved Elbert," she says. "I thought he shouldn't be on a roof, nailing a shingle... his first wife, I loaned her my fur coat... Elbert was a pretty good-looking young bachelor in that low-income town. His second wife was really lovely... I guess I've been spoiled all my life, between working for Daddy and working for Elskamps...."
"If I get a shirt like that, it'll show that I should have been more caring," she says.
"No, you are caring," I say, but she is now saying something about "when China starts fighting Japan... change the world."
Conversation shifts back to her brother.
"Everybody loved Elbert," she says. "I thought he shouldn't be on a roof, nailing a shingle... his first wife, I loaned her my fur coat... Elbert was a pretty good-looking young bachelor in that low-income town. His second wife was really lovely... I guess I've been spoiled all my life, between working for Daddy and working for Elskamps...."
I nod and murmur yes. Our two hours in Denny's drags on.
"I yearn to do my own cooking sometimes," Mom says. "I dream I'm making macaroni and cheese. I was just ready to take it out of the oven--but nothing."
"You wake up," I say.
Afterward we get in line for the bathroom, but there are only two stalls, one not working, so we drive home.
~ ~ ~
Still no one home. If my cell phone were working, I would know that Marie and her dad have gone to the Angels game in Anaheim. They all know better than to give me gifts today. I've told them how this day was founded by Julia Ward Howe as Mother's Peace Day but has degenerated into commercial fluff to compensate for exploitation of women the rest of the year.
"You wake up," I say.
Afterward we get in line for the bathroom, but there are only two stalls, one not working, so we drive home.
~ ~ ~
Still no one home. If my cell phone were working, I would know that Marie and her dad have gone to the Angels game in Anaheim. They all know better than to give me gifts today. I've told them how this day was founded by Julia Ward Howe as Mother's Peace Day but has degenerated into commercial fluff to compensate for exploitation of women the rest of the year.
I don't expect Mom to understand this, however. I've bought gifts for her and the two of us sit here alone opening them, as we did two months ago on her birthday.
She likes the bedroom slippers and Estee Lauder powder. The little stained glass church with a light bulb inside delights her.
"It looks like the one in Telluride before it burned down," I tell her.
"Yes," she says. "Everyone thought that Communists had burned it down."
I don't comment, smiling at the ambition of communists who might go all the way to the end of that box canyon to burn down a church.
"It can sit on the doll cabinet next to the dolls," she says. "The dolls are all virgin dolls."
And worthy of going to church, apparently, I think. Oh well.
She is talking about how she would like to move her doll cabinet into our house, right where John's easy chair sits.
"What would he think of that?" she laughs. "Not much, I guess. Mother-in-laws. You should tell him about my idea, for a joke, some time when he's depressed."
I laugh with her, thinking "No way!"
Then she's talking about my grandmother.
"I always feel so bad about my mother. I didn't know she died."
"Yes, she died," I say. I don't tell her again that she herself was the first to arrive at the P.E.O. chapter house when Grandma died in 1974. I don't repeat, "You were the one who called to tell me."
"She was a lovely woman," Mom continues. "She started you out right and everything."
"Yes," I say.
"Daddy said to me, 'Why don't you leave that poor baby alone?' and I told him I had to go be a Navy nurse and I left you with him and Mother to raise. They did a good job, sent you to school and everything."
I don't point out that she was a Navy nurse during World War II, long before she had me and my younger brothers and sister, that she and my father raised all of us kids.
"It can sit on the doll cabinet next to the dolls," she says. "The dolls are all virgin dolls."
And worthy of going to church, apparently, I think. Oh well.
She is talking about how she would like to move her doll cabinet into our house, right where John's easy chair sits.
"What would he think of that?" she laughs. "Not much, I guess. Mother-in-laws. You should tell him about my idea, for a joke, some time when he's depressed."
I laugh with her, thinking "No way!"
Then she's talking about my grandmother.
"I always feel so bad about my mother. I didn't know she died."
"Yes, she died," I say. I don't tell her again that she herself was the first to arrive at the P.E.O. chapter house when Grandma died in 1974. I don't repeat, "You were the one who called to tell me."
"She was a lovely woman," Mom continues. "She started you out right and everything."
"Yes," I say.
"Daddy said to me, 'Why don't you leave that poor baby alone?' and I told him I had to go be a Navy nurse and I left you with him and Mother to raise. They did a good job, sent you to school and everything."
I don't point out that she was a Navy nurse during World War II, long before she had me and my younger brothers and sister, that she and my father raised all of us kids.
Then her thoughts turn to my oldest daughter.
"Roz wrote me that card that said she'd love me no matter what. Does she know that with old age comes senility?" Mom asks, laughing as she contemplates eventually becoming senile.
"Oh, I'm sure she knows," I say.
Then I add, "It's time to go back to Ocean View. Let's pack up these gifts, and I'll get the laundry out of the dryer."
"You just want to get rid of me," Mom says.
I don't answer because it's true. I've been watching the clock for hours.
Soon she is back in the car, and my neighbor Shari walks over to say hi.
"Are you having a good Mother's Day?" she asks.
I equivocate, unable to say anything with Mom present, but Shari gets the point, telling me that she has to go in and clean up the mess in her kitchen after her young sons have planted seeds in pots as a Mother's Day gift.
~ ~ ~
Back at Ocean View, I greet Racquel, who has just returned from a month in the Philippines.
"I'm so glad you're back and that you came today, instead of going out with your family," I say. "That means I don't have to give my mother a shower tonight."
"Oh, it's my job, Anne," she says with a big smile. "I'm the one."
It's 3:15 pm as I escape from the Reminiscence Neighborhood, dodging Mother's Day greetings like a quarterback running with a football.
Soon I will be back home to frost Marie's cake and maybe even take a nap.
"Roz wrote me that card that said she'd love me no matter what. Does she know that with old age comes senility?" Mom asks, laughing as she contemplates eventually becoming senile.
"Oh, I'm sure she knows," I say.
Then I add, "It's time to go back to Ocean View. Let's pack up these gifts, and I'll get the laundry out of the dryer."
"You just want to get rid of me," Mom says.
I don't answer because it's true. I've been watching the clock for hours.
Soon she is back in the car, and my neighbor Shari walks over to say hi.
"Are you having a good Mother's Day?" she asks.
I equivocate, unable to say anything with Mom present, but Shari gets the point, telling me that she has to go in and clean up the mess in her kitchen after her young sons have planted seeds in pots as a Mother's Day gift.
~ ~ ~
Back at Ocean View, I greet Racquel, who has just returned from a month in the Philippines.
"I'm so glad you're back and that you came today, instead of going out with your family," I say. "That means I don't have to give my mother a shower tonight."
"Oh, it's my job, Anne," she says with a big smile. "I'm the one."
It's 3:15 pm as I escape from the Reminiscence Neighborhood, dodging Mother's Day greetings like a quarterback running with a football.
Soon I will be back home to frost Marie's cake and maybe even take a nap.
Sunday, May 07, 2006
How Grandma Lost Her Tomorrows
When I arrived at Mom's residence this morning at 7:45 am, I didn't know whether she would be dressed and at breakfast or still in bed.
Usually on Sundays I arrive at 6:30 or 7 am, help her get up, and dress her for church. Then I shower while she is at breakfast and take her to church.
Today I stayed home until my husband left for a short business trip, so I was late to arrive at Ocean View Assisted Living.
I found her at breakfast, wearing the flowered pink jacket and matching slacks I had laid out for her to wear today. She looked great, so I concluded all was well. A kind and competent young caregiver, Heidi, had gotten her up and dressed her.
We were still late for church, however, because breakfast didn't arrive until 8:30 and at 9 am she insisted on walking back to her room instead of riding in the wheelchair. After a few steps she whimpered and said it was painful, she couldn't make it, but with encouragement she did do it.
We got through the usual routine with no unusual problems: church (which she partially slept through), an ice cream cone from Baskin Robbins, a shopping trip to Sav-On (me shopping, her in the car with her ice cream), and a visit to my house.
She had hardly been at my house half an hour before she said it was time to go back to her residence--unusual for her. She hadn't even visited the bathroom yet. Usually she demands to use the bathroom about three times before I can get her back in the car to return to Ocean View.
After I got her settled in her chair for a nap back at her residence and was leaving at 2 pm, Bethlhem arrived for her 2-10 pm shift and pulled me aside to explain what had happened at 5 am.
"We checked her at 4:45 am and she was snoring, but when I happened to come by again at 5 am, she was sitting up on the edge of her bed pulling her nightgown off," began Bethlehem.
"So I said, 'Evelyn, what are you doing? It's too early to get up.'"
"'I'm getting dressed for church so I will be ready when Anne comes,' she told me.
"'Oh no, Anne won't like that,' I told her. 'You might fall down and get a broken bone, and Anne would not like that.' She seemed to think about that and to understand."
"So you were able to get her to go back to bed?" I asked.
"Yes, she went back to bed and to sleep," Bethlhem confirmed.
"Oh thank goodness," I said. "She has done that before--tried to get up at 3 am or 5 am. That's why she had a private caregiver at night for so long. But I thought she wasn't doing that any more. I haven't been much in touch with the night shift. And why are you working from 10 pm to 6 am and then starting another shift eight hours later?"
Bethlhem didn't totally explain why for two days in a row she worked graveyard shift and then started again at 2 pm--there must have been staffing problems. She is a lead caregiver in charge of 4-5 others, an immigrant from Ethiopia, kind, competent, caring, and beautiful in her early thirties.
Another unanswered question was why the Posey alarm hadn't gone off. It is supposed to make a loud noise when she sits up in bed or tries to leave the bed.
I concluded with Bethlhem that I shouldn't have told Mom, "Tomorrow we're going to church. Let's pick out an outfit and hang it out here."
Many times before these little announcements I have made to add a little excitement to her life have backfired and caused her to lose sleep or become agitated.
The worst case was Easter 2005, when the bedtime comment "Tomorrow is Easter!" caused her to have hallucinations and to believe the world was coming to an end. She was so agitated that we never made it to church.
Just two days ago we had made an appointment with another resident (not in the "Reminiscence Neighborhood" but on the floors for people with their wits about them), to take her to the P.E.O. meeting on Friday, her first visit to P.E.O. in over a year. But the poor lady called me in the morning and said she couldn't go to the meeting because she had not slept at all that night. Perhaps getting there and the social dynamics of the gathering worried her, or perhaps she has agoraphobia.
Anyway, Bethlhem and I concluded that Mom (a.k.a "Grandma") should no longer be informed about what events will take place in the morning.
From now on, it's just "Good night, sleep well. I love you."
No information about what will happen tomorrow.
Usually on Sundays I arrive at 6:30 or 7 am, help her get up, and dress her for church. Then I shower while she is at breakfast and take her to church.
Today I stayed home until my husband left for a short business trip, so I was late to arrive at Ocean View Assisted Living.
I found her at breakfast, wearing the flowered pink jacket and matching slacks I had laid out for her to wear today. She looked great, so I concluded all was well. A kind and competent young caregiver, Heidi, had gotten her up and dressed her.
We were still late for church, however, because breakfast didn't arrive until 8:30 and at 9 am she insisted on walking back to her room instead of riding in the wheelchair. After a few steps she whimpered and said it was painful, she couldn't make it, but with encouragement she did do it.
We got through the usual routine with no unusual problems: church (which she partially slept through), an ice cream cone from Baskin Robbins, a shopping trip to Sav-On (me shopping, her in the car with her ice cream), and a visit to my house.
She had hardly been at my house half an hour before she said it was time to go back to her residence--unusual for her. She hadn't even visited the bathroom yet. Usually she demands to use the bathroom about three times before I can get her back in the car to return to Ocean View.
After I got her settled in her chair for a nap back at her residence and was leaving at 2 pm, Bethlhem arrived for her 2-10 pm shift and pulled me aside to explain what had happened at 5 am.
"We checked her at 4:45 am and she was snoring, but when I happened to come by again at 5 am, she was sitting up on the edge of her bed pulling her nightgown off," began Bethlehem.
"So I said, 'Evelyn, what are you doing? It's too early to get up.'"
"'I'm getting dressed for church so I will be ready when Anne comes,' she told me.
"'Oh no, Anne won't like that,' I told her. 'You might fall down and get a broken bone, and Anne would not like that.' She seemed to think about that and to understand."
"So you were able to get her to go back to bed?" I asked.
"Yes, she went back to bed and to sleep," Bethlhem confirmed.
"Oh thank goodness," I said. "She has done that before--tried to get up at 3 am or 5 am. That's why she had a private caregiver at night for so long. But I thought she wasn't doing that any more. I haven't been much in touch with the night shift. And why are you working from 10 pm to 6 am and then starting another shift eight hours later?"
Bethlhem didn't totally explain why for two days in a row she worked graveyard shift and then started again at 2 pm--there must have been staffing problems. She is a lead caregiver in charge of 4-5 others, an immigrant from Ethiopia, kind, competent, caring, and beautiful in her early thirties.
Another unanswered question was why the Posey alarm hadn't gone off. It is supposed to make a loud noise when she sits up in bed or tries to leave the bed.
I concluded with Bethlhem that I shouldn't have told Mom, "Tomorrow we're going to church. Let's pick out an outfit and hang it out here."
Many times before these little announcements I have made to add a little excitement to her life have backfired and caused her to lose sleep or become agitated.
The worst case was Easter 2005, when the bedtime comment "Tomorrow is Easter!" caused her to have hallucinations and to believe the world was coming to an end. She was so agitated that we never made it to church.
Just two days ago we had made an appointment with another resident (not in the "Reminiscence Neighborhood" but on the floors for people with their wits about them), to take her to the P.E.O. meeting on Friday, her first visit to P.E.O. in over a year. But the poor lady called me in the morning and said she couldn't go to the meeting because she had not slept at all that night. Perhaps getting there and the social dynamics of the gathering worried her, or perhaps she has agoraphobia.
Anyway, Bethlhem and I concluded that Mom (a.k.a "Grandma") should no longer be informed about what events will take place in the morning.
From now on, it's just "Good night, sleep well. I love you."
No information about what will happen tomorrow.
Saturday, May 06, 2006
The Headless Nurse
A few months ago I glued together a couple of broken pieces on a ceramic doll that turns in a circle on a music box and returned it to Mom.
The little figure looks like a Madame Alexander doll, a childish version of a nurse in a full-skirted blue dress with a white apron.
The music box plays, "Just a spoonful of sugar helps the medicine go down, the medicine go down, the medicine go down; just a spoonful of sugar helps the medicine go down in the most delightful way."
Because Mom was a registered nurse and taught nursing at the college level, she loves listening to this little doll.
Yesterday I was singing along with the music, but I was singing "...makes the medicine go down, the medicine go down."
"I think it's helps the medicine go down,'" Mom corrected me.
"Oh! Okay," I said, and I placed the doll on the foot of her bed where she could pick it up and rewind it while sitting in her recliner during the afternoon.
Today when I came to check on Mom and help her walk back from the dining room to sit in her chair, I forgot about the doll. I eased Mom into the electric recliner and pushed the button to make it recline and lift the footrest.
But the chair jerked and there was a small noise of something breaking.
I remembered the doll, and sure enough, she had fallen to the floor and had been broken by the moving recliner. It was a clean break, though--the figure was intact except for the head having been decapitated.
She still turns in a circle and plays the music as cheerfully as ever, even without her head.
"Just a spoonful of glue helps the head to go back on, the head to go back on," she seems to be singing.
If only Mom could reclaim her lost head so easily.
The little figure looks like a Madame Alexander doll, a childish version of a nurse in a full-skirted blue dress with a white apron.
The music box plays, "Just a spoonful of sugar helps the medicine go down, the medicine go down, the medicine go down; just a spoonful of sugar helps the medicine go down in the most delightful way."
Because Mom was a registered nurse and taught nursing at the college level, she loves listening to this little doll.
Yesterday I was singing along with the music, but I was singing "...makes the medicine go down, the medicine go down."
"I think it's helps the medicine go down,'" Mom corrected me.
"Oh! Okay," I said, and I placed the doll on the foot of her bed where she could pick it up and rewind it while sitting in her recliner during the afternoon.
Today when I came to check on Mom and help her walk back from the dining room to sit in her chair, I forgot about the doll. I eased Mom into the electric recliner and pushed the button to make it recline and lift the footrest.
But the chair jerked and there was a small noise of something breaking.
I remembered the doll, and sure enough, she had fallen to the floor and had been broken by the moving recliner. It was a clean break, though--the figure was intact except for the head having been decapitated.
She still turns in a circle and plays the music as cheerfully as ever, even without her head.
"Just a spoonful of glue helps the head to go back on, the head to go back on," she seems to be singing.
If only Mom could reclaim her lost head so easily.
Monday, April 17, 2006
Gone Fishing
I hope to drive to Colorado today for a 9-10 day vacation, checking on my mother's house near Telluride as well as mine.
They say that caregivers need to take time for themselves--well, this is it.
I hope I have made enough arrangements with Ocean View Assisted Living and with the private caregiver who will come 8 hrs. per day in the early evening M-F. I still have to type various notes and schedules of her preferred routine throughout the day.
I hope Mom will get through this ten days without a physical or mental health crisis.
My sister will visit at least once, but most of the time Mom will be on her own with the various caregivers.
When I told Mom I was driving to Colorado, she immediately asked, "Can I go with you?"
It was hard to tell her no.
They say that caregivers need to take time for themselves--well, this is it.
I hope I have made enough arrangements with Ocean View Assisted Living and with the private caregiver who will come 8 hrs. per day in the early evening M-F. I still have to type various notes and schedules of her preferred routine throughout the day.
I hope Mom will get through this ten days without a physical or mental health crisis.
My sister will visit at least once, but most of the time Mom will be on her own with the various caregivers.
When I told Mom I was driving to Colorado, she immediately asked, "Can I go with you?"
It was hard to tell her no.
Sunday, April 16, 2006
Hazards
One of the hazards of being a caregiver for a dementia patient is that their care is a bottomless pit into which it is easy to fall.
Today I put a fair number of hours into care of Mom, as well as some time and energy into making this a good day for my husband.
Meanwhile, I missed a couple of urgent phone calls from one of my three daughters away at college.
I wish I had put a little thought and energy into her welfare today, but I was running full speed ahead on the track of elder care.
Today I put a fair number of hours into care of Mom, as well as some time and energy into making this a good day for my husband.
Meanwhile, I missed a couple of urgent phone calls from one of my three daughters away at college.
I wish I had put a little thought and energy into her welfare today, but I was running full speed ahead on the track of elder care.
Answer to the Easter Puzzle
I woke up today, Easter, still puzzled about how to balance Mom's needs with my needs and those of my husband. (See "The Unwelcome Guest.")
One good option seemed to be returning her to her residence after church and then bringing her back for dinner with John and me at 7 pm.
I had promised him I would take her back at 2 pm and not bring her back, but he had said he didn't mind her being around all day as long as he didn't have to eat a big dinner at 2 pm.
A generous offer from Jennifer, the young musician who provides entertainment and activities on the Rem floor, helped me unravel the day's options.
"We're going to make deviled eggs this afternoon," she said. "Here are the Easter eggs they colored yesterday. Aren't they great? Don't you want to join us, Evelyn?"
"Well, maybe," Mom said. Usually she hates the group activities, but this one involved food, and a food she liked. "I know how to make deviled eggs."
"Wonderful," I said. "Yes, I will have her back here by 2 pm."
But then during church I debated whether to pick her up again at 7 pm to eat Easter dinner with John and me, or just to give her a quick version of Easter dinner at 1 pm and not tell her John and I would be having Easter dinner at 7 pm.
I finally gambled that I could give her Easter dinner without her remembering that John was not with us... that this was not the usual family gathering.
It worked. She commented about my three daughters not being there, but she didn't get to the next square, that John was not present.
I served her and me part of a warmed up slice of ham with asparagus and canned sweet potatoes, followed by strawberry shortcake.
I had planned to make the shortcake, but to save time and to prevent John from being annoyed by any fuss in the kitchen should he arrive back from his church service, I just used slice pound cake from the grocery store.
"This is about a $5 lunch," she commented happily.
And later, "That's a tender ham."
"Uh-huh, pretty good, isn't it?" I answered. "Well, after all, it's Easter." My goal was that she know it is Easter, have a happy day, and not realize that she is missing out on the usual big Easter dinner.
Still later she said, "Boy, what a scrumptious spread." Usually at my house she just gets raisin toast and milk, grapes, maybe a ham sandwich.
But then she made a smart but poignant comment: "I would be so happy if I could just walk around like you do. Maybe if I pay 25 cents an hour extra to get somebody to walk with me, I could get to walking again. They just get 45 cents an hour, you know."
"Yes, maybe that would work," I said.
We finished "Easter dinner" and I prepared to take her back to Ocean View.
"Now, if I could indulge in using your bathroom again," she said.
"No problem," I said, though I had been hoping one trip to my bathroom would be enough for today. Getting her out of her wheelchair and onto the commode in the narrow space of my bathroom door is so difficult.
If, however, using my bathroom is a small pleasure she wants, and one that it is in my power to grant, by all means, I will give her this "indulgence."
Soon she was back at Ocean View, eagerly joining into the deviled egg making, and I was promising to return at 6 pm to bathe her.
Back at home, John seemed relieved that she was not here today while he was home. He suggested going to a movie this evening, and I was able to say, "Sure why not? After I shower my mother."
He grumbled at having to plan around her shower, but I was happy that she had already had her Easter dinner and was out of his way.
He wants to skip Easter dinner and just have popcorn at the 7:40 pm movie, maybe eat afterwards. Fine. That's fine with me.
One good option seemed to be returning her to her residence after church and then bringing her back for dinner with John and me at 7 pm.
I had promised him I would take her back at 2 pm and not bring her back, but he had said he didn't mind her being around all day as long as he didn't have to eat a big dinner at 2 pm.
A generous offer from Jennifer, the young musician who provides entertainment and activities on the Rem floor, helped me unravel the day's options.
"We're going to make deviled eggs this afternoon," she said. "Here are the Easter eggs they colored yesterday. Aren't they great? Don't you want to join us, Evelyn?"
"Well, maybe," Mom said. Usually she hates the group activities, but this one involved food, and a food she liked. "I know how to make deviled eggs."
"Wonderful," I said. "Yes, I will have her back here by 2 pm."
But then during church I debated whether to pick her up again at 7 pm to eat Easter dinner with John and me, or just to give her a quick version of Easter dinner at 1 pm and not tell her John and I would be having Easter dinner at 7 pm.
I finally gambled that I could give her Easter dinner without her remembering that John was not with us... that this was not the usual family gathering.
It worked. She commented about my three daughters not being there, but she didn't get to the next square, that John was not present.
I served her and me part of a warmed up slice of ham with asparagus and canned sweet potatoes, followed by strawberry shortcake.
I had planned to make the shortcake, but to save time and to prevent John from being annoyed by any fuss in the kitchen should he arrive back from his church service, I just used slice pound cake from the grocery store.
"This is about a $5 lunch," she commented happily.
And later, "That's a tender ham."
"Uh-huh, pretty good, isn't it?" I answered. "Well, after all, it's Easter." My goal was that she know it is Easter, have a happy day, and not realize that she is missing out on the usual big Easter dinner.
Still later she said, "Boy, what a scrumptious spread." Usually at my house she just gets raisin toast and milk, grapes, maybe a ham sandwich.
But then she made a smart but poignant comment: "I would be so happy if I could just walk around like you do. Maybe if I pay 25 cents an hour extra to get somebody to walk with me, I could get to walking again. They just get 45 cents an hour, you know."
"Yes, maybe that would work," I said.
We finished "Easter dinner" and I prepared to take her back to Ocean View.
"Now, if I could indulge in using your bathroom again," she said.
"No problem," I said, though I had been hoping one trip to my bathroom would be enough for today. Getting her out of her wheelchair and onto the commode in the narrow space of my bathroom door is so difficult.
If, however, using my bathroom is a small pleasure she wants, and one that it is in my power to grant, by all means, I will give her this "indulgence."
Soon she was back at Ocean View, eagerly joining into the deviled egg making, and I was promising to return at 6 pm to bathe her.
Back at home, John seemed relieved that she was not here today while he was home. He suggested going to a movie this evening, and I was able to say, "Sure why not? After I shower my mother."
He grumbled at having to plan around her shower, but I was happy that she had already had her Easter dinner and was out of his way.
He wants to skip Easter dinner and just have popcorn at the 7:40 pm movie, maybe eat afterwards. Fine. That's fine with me.
She Is Risen
I arrived early at Mom's residence, 7:30 am, but not early enough.
Instead of being there at 6 or 6:30 am, I half-wakened at 6:30 am and, having gone to bed at 2 am after celebrating a Seder at a friend's house, was unable to persuade myself to rise until 7 am.
When I finally showed up at Ocean View Assisted Living, I saw a vision: Mom in her Easter finest walking down the hall (with her walker) to breakfast, being trailed by April, who had dressed her, and Retanya, who was pushing the wheelchair in case Mom needed to sit.
"Oh, thank you," I said. "I'm late! I meant to get here in time to dress her."
They know that I do it every Sunday, but apparently Mom had been thinking about Easter all night and had wakened early and tried to get started--a vestige of her old self, the "Hurry up--I'll do it myself" mother I grew up with.
"She was dressing herself," April said. "She had taken off her nightgown and her diaper when we arrived. She said she wanted to surprise you."
"Yes, sometimes I have found her lying there with her nightgown off when I get there at 6:30 or 7 am, but not her Depend--oh dear!"
"I just need my V-8," Mom interjected, calm and collected. "Anne, can you get it?
"Yes, Mom," I agreed. "Happy Easter, everybody."
After taking her to her seat in the dining room, I went back to her room and encountered Bethlhem, who further described the resurrection scene.
"She was lying there not dressed, with a new diaper between her legs--I don't know how she got it."
"They're on her bedside table," I said.
"And we said to her, 'Why don't you wait for Anne?' But she said, 'What if I want to surprise her? It was so sweet--like a child. She wanted to surprise you on Easter."
"Wow," I said, grateful that this year's Easter agitation had taken a positive turn.
When I took the V-8 back, Ilona thanked me for the potted Easter lily I had brought.
"Evelyn, would you like some tea?" she then asked.
"Yes, if it's not too much trouble," Mom said. "I know you have a lot of people to serve."
Ilona and I were stunned by her courtesy and insight. There were only two others in the dining room so far, and usually Mom and the other residents demand to be helped immediately with whatever goal they have, such as being served the meal or being taken back to their rooms.
But today Mom had risen a new woman.
Leaving Mom at breakfast, I returned to her room to take my own shower and dress for church.
Because of this early start for Mom's breakfast, we will probably arrive early for the crowded 9:30 am Easter service and more easily find a spot to park her wheelchair.
Hallelujah!
Instead of being there at 6 or 6:30 am, I half-wakened at 6:30 am and, having gone to bed at 2 am after celebrating a Seder at a friend's house, was unable to persuade myself to rise until 7 am.
When I finally showed up at Ocean View Assisted Living, I saw a vision: Mom in her Easter finest walking down the hall (with her walker) to breakfast, being trailed by April, who had dressed her, and Retanya, who was pushing the wheelchair in case Mom needed to sit.
"Oh, thank you," I said. "I'm late! I meant to get here in time to dress her."
They know that I do it every Sunday, but apparently Mom had been thinking about Easter all night and had wakened early and tried to get started--a vestige of her old self, the "Hurry up--I'll do it myself" mother I grew up with.
"She was dressing herself," April said. "She had taken off her nightgown and her diaper when we arrived. She said she wanted to surprise you."
"Yes, sometimes I have found her lying there with her nightgown off when I get there at 6:30 or 7 am, but not her Depend--oh dear!"
"I just need my V-8," Mom interjected, calm and collected. "Anne, can you get it?
"Yes, Mom," I agreed. "Happy Easter, everybody."
After taking her to her seat in the dining room, I went back to her room and encountered Bethlhem, who further described the resurrection scene.
"She was lying there not dressed, with a new diaper between her legs--I don't know how she got it."
"They're on her bedside table," I said.
"And we said to her, 'Why don't you wait for Anne?' But she said, 'What if I want to surprise her? It was so sweet--like a child. She wanted to surprise you on Easter."
"Wow," I said, grateful that this year's Easter agitation had taken a positive turn.
When I took the V-8 back, Ilona thanked me for the potted Easter lily I had brought.
"Evelyn, would you like some tea?" she then asked.
"Yes, if it's not too much trouble," Mom said. "I know you have a lot of people to serve."
Ilona and I were stunned by her courtesy and insight. There were only two others in the dining room so far, and usually Mom and the other residents demand to be helped immediately with whatever goal they have, such as being served the meal or being taken back to their rooms.
But today Mom had risen a new woman.
Leaving Mom at breakfast, I returned to her room to take my own shower and dress for church.
Because of this early start for Mom's breakfast, we will probably arrive early for the crowded 9:30 am Easter service and more easily find a spot to park her wheelchair.
Hallelujah!
The Unwelcome Guest
Holidays are really hard for a family with a person who has dementia.
Do you include the LBD or Alzheimer's person in your family plans--even if his/her needs are quite different from those of the rest of the family? Or do you celebrate the holiday with the rest of the family and leave Grandma out of the central dinner or other events?
When I proposed having Easter dinner at 1 or 2 pm, so Mom could join us and then go back to her residence, my husband objected. He wanted to mow the lawn or be outdoors in the afternoon rather than face an elaborate, interminable meal with just the three of us--him, me, and my mother.
"Your family always has dinner in the middle of the afternoon," he complained. "Having to sit through a meal then ruins my day."
I didn't point out that his own mother is having a catered Easter dinner for 23 family members, scheduled for early afternoon to accommodate travel times for various relatives traveling from several hours away. If we weren't a continent away, he would be spending his Easter at that event.
He would rather eat at 7 or 8 pm, even on holidays. And the meal should always be simple, as few dishes as possible.
If our daughters were home, on the other hand, he would accept having an elegant Easter dinner. The scene would be more lively than just him, me, and my mother sitting there.
For Mom, however, a meal at 7 pm is a little difficult. She usually eats at 5 pm, is given her shower at 6 pm, and is napping peacefully in her large recliner by 7 pm, prior to her 9 pm medications and bedtime.
Actually, she could probably eat at 7 pm and return to her residence at 8 pm for her shower, but that would be a little more difficult for me.
She has no private caregiver tomorrow, so I will arrive at her room at 7 am or so, dress her and take her to the dining room for breakfast by 8 am, take her to church at 9:30 am, and bring her to our house after church.
If I keep her at our house until 7 or 8 pm, that means I face a 12-hour day of caregiving.
Perhaps I should return her to her residence after church and then bring her to our house at 7 pm. But at Ocean View Assisted Living, they will serve dinner at 5 pm, so she will be eating two dinners in a row.
I'm not sure what to do.
Will she know she has missed Easter dinner if I take her back to her residence at 2 pm and she stays there for the rest of the day? Perhaps she won't remember that on Easter she should be eating a nice dinner with family members.
Will I be able to shower her at 6 pm at her residence, leave her there for the night, and still serve dinner at 8 pm?
There are no easy answers.
But at least I expect an easier Easter than last year, when I arrived at 8 am to take her to church and found her extremely agitated, unwilling to leave the building because the world was ending.
We never made it to church. I finally got her into the car and took her home, where she sat in the car for hours refusing to come into the house.
My daughter finally coaxed her out of the car and we had a fairly nice dinner at about 6 pm--but from John's point of view, I'm sure it was interminable, too elaborate, and too early.
Do you include the LBD or Alzheimer's person in your family plans--even if his/her needs are quite different from those of the rest of the family? Or do you celebrate the holiday with the rest of the family and leave Grandma out of the central dinner or other events?
When I proposed having Easter dinner at 1 or 2 pm, so Mom could join us and then go back to her residence, my husband objected. He wanted to mow the lawn or be outdoors in the afternoon rather than face an elaborate, interminable meal with just the three of us--him, me, and my mother.
"Your family always has dinner in the middle of the afternoon," he complained. "Having to sit through a meal then ruins my day."
I didn't point out that his own mother is having a catered Easter dinner for 23 family members, scheduled for early afternoon to accommodate travel times for various relatives traveling from several hours away. If we weren't a continent away, he would be spending his Easter at that event.
He would rather eat at 7 or 8 pm, even on holidays. And the meal should always be simple, as few dishes as possible.
If our daughters were home, on the other hand, he would accept having an elegant Easter dinner. The scene would be more lively than just him, me, and my mother sitting there.
For Mom, however, a meal at 7 pm is a little difficult. She usually eats at 5 pm, is given her shower at 6 pm, and is napping peacefully in her large recliner by 7 pm, prior to her 9 pm medications and bedtime.
Actually, she could probably eat at 7 pm and return to her residence at 8 pm for her shower, but that would be a little more difficult for me.
She has no private caregiver tomorrow, so I will arrive at her room at 7 am or so, dress her and take her to the dining room for breakfast by 8 am, take her to church at 9:30 am, and bring her to our house after church.
If I keep her at our house until 7 or 8 pm, that means I face a 12-hour day of caregiving.
Perhaps I should return her to her residence after church and then bring her to our house at 7 pm. But at Ocean View Assisted Living, they will serve dinner at 5 pm, so she will be eating two dinners in a row.
I'm not sure what to do.
Will she know she has missed Easter dinner if I take her back to her residence at 2 pm and she stays there for the rest of the day? Perhaps she won't remember that on Easter she should be eating a nice dinner with family members.
Will I be able to shower her at 6 pm at her residence, leave her there for the night, and still serve dinner at 8 pm?
There are no easy answers.
But at least I expect an easier Easter than last year, when I arrived at 8 am to take her to church and found her extremely agitated, unwilling to leave the building because the world was ending.
We never made it to church. I finally got her into the car and took her home, where she sat in the car for hours refusing to come into the house.
My daughter finally coaxed her out of the car and we had a fairly nice dinner at about 6 pm--but from John's point of view, I'm sure it was interminable, too elaborate, and too early.
Saturday, April 15, 2006
Have You Married Lately?
Mom receives about 900 pieces of mail per month.
Every time she sneezes, it generates a Blue Cross Explanation of Benefits and a Medicare Summary Notice, not to mention bills and notices from the doctor/nurse/physical therapist/wheelchair rental service/blood lab/ambulance or whatever other agent or agency might have had some remote contact with her.
I don't read each one the minute it arrives. They stack up, though I do glance at each envelope to judge whether it is important or just another piece of paper to file.
Today, after filing her tax return for 2005 and balancing her checkbook for Jan. 31 and Feb. 28, I balanced her checkbook for March 31. And I noticed that one of her four monthly direct deposits (her Social Security, her Social Security as a widow, her pension from the U. of Md., and her Dept. of Defense income) did not arrive.
No wonder she has been short of money this month, drawing on her Visa overdraft protection.
I sent an email to her credit union asking if they knew why this deposit did not take place.
Later, after several more hours of balancing her March statement (mainly untangling charges to my ATM card from her checkbook, where I had erroneously entered them*), I looked through her "possibly somewhat important" pile of mail and found a letter from the Defense Finance and Accounting Service.
Please complete the enclosed Certificate of Eligibility and return it to DFAS, US Military Annuitant Pay.... required by law in order for us to determine your continued eligibility for your annuity payments.
We have suspended your annuity until we receive a completed COE.... Your marital status is required to update your account, please place an 'X' in the applicable box:
___ I did not marry in the past year.
___ I married in the past year (please attach a copy of your marriage certificate).
Right, another one of these forms. They seem to come monthly from one agency or another.
So that's why she is missing $920.55. They suspect that she may have married.
I emailed the bank and said sorry, I figured out why she is missing her deposit.
I wrote a letter to the DFAS.
To DFAS:
Evelyn F. Eggebroten is 87 years old and has dementia. She is living on a secure floor in a residence with 24-hour nursing case for her illness, Lewy Body Dementia.
No way could she marry!
We do not appreciate your cutting off her DFAS check on April 1 because we did not promptly fill out a form that you mailed.
Sincerely, Anne M. Eggebroten, P.O.A. (daughter)
And then I reflected on the Department of Defense's view of her life and the lives of others in her age range.
Apparently they see these 80-somethings as quite active sexually and alert mentally. Hey, 87 is the new 77.
Or maybe they are harking back to a healthier millennium, thinking the elderly are all like Abraham and Sarah, begetting and conceiving and remarrying if a partner has died.
Isn't there a way one could inform the DFAS that one's elderly parent cannot walk or talk in a coherent fashion, or do any of the ADLs (dress, bathe, prepare meals, keep house, etc.)? that therefore he or she is 100% unable to take a vow of taking anyone to love and to cherish "until death us do part"?
In fact, those who are in their seventies or older and sexually active are also smart enough not to remarry and lose their Social Security.
I know of several couples (retired pastors and church organists among them, P.E.O. members, etc.) who would never have lived in sin earlier in their lives but find it necessary to do so now, for financial reasons.
The government hasn't found them, but it has cut off Mom's annuity. Go figure.
* Note: I carry two checkbooks and two ATM cards (deciding on each trip to the grocery store or Sav-On whether this set of purchases for both of us should go on her card or mine). And I do five income tax returns (hers, mine, and my three kids').
Every time she sneezes, it generates a Blue Cross Explanation of Benefits and a Medicare Summary Notice, not to mention bills and notices from the doctor/nurse/physical therapist/wheelchair rental service/blood lab/ambulance or whatever other agent or agency might have had some remote contact with her.
I don't read each one the minute it arrives. They stack up, though I do glance at each envelope to judge whether it is important or just another piece of paper to file.
Today, after filing her tax return for 2005 and balancing her checkbook for Jan. 31 and Feb. 28, I balanced her checkbook for March 31. And I noticed that one of her four monthly direct deposits (her Social Security, her Social Security as a widow, her pension from the U. of Md., and her Dept. of Defense income) did not arrive.
No wonder she has been short of money this month, drawing on her Visa overdraft protection.
I sent an email to her credit union asking if they knew why this deposit did not take place.
Later, after several more hours of balancing her March statement (mainly untangling charges to my ATM card from her checkbook, where I had erroneously entered them*), I looked through her "possibly somewhat important" pile of mail and found a letter from the Defense Finance and Accounting Service.
Please complete the enclosed Certificate of Eligibility and return it to DFAS, US Military Annuitant Pay.... required by law in order for us to determine your continued eligibility for your annuity payments.
We have suspended your annuity until we receive a completed COE.... Your marital status is required to update your account, please place an 'X' in the applicable box:
___ I did not marry in the past year.
___ I married in the past year (please attach a copy of your marriage certificate).
Right, another one of these forms. They seem to come monthly from one agency or another.
So that's why she is missing $920.55. They suspect that she may have married.
I emailed the bank and said sorry, I figured out why she is missing her deposit.
I wrote a letter to the DFAS.
To DFAS:
Evelyn F. Eggebroten is 87 years old and has dementia. She is living on a secure floor in a residence with 24-hour nursing case for her illness, Lewy Body Dementia.
No way could she marry!
We do not appreciate your cutting off her DFAS check on April 1 because we did not promptly fill out a form that you mailed.
Sincerely, Anne M. Eggebroten, P.O.A. (daughter)
And then I reflected on the Department of Defense's view of her life and the lives of others in her age range.
Apparently they see these 80-somethings as quite active sexually and alert mentally. Hey, 87 is the new 77.
Or maybe they are harking back to a healthier millennium, thinking the elderly are all like Abraham and Sarah, begetting and conceiving and remarrying if a partner has died.
Isn't there a way one could inform the DFAS that one's elderly parent cannot walk or talk in a coherent fashion, or do any of the ADLs (dress, bathe, prepare meals, keep house, etc.)? that therefore he or she is 100% unable to take a vow of taking anyone to love and to cherish "until death us do part"?
In fact, those who are in their seventies or older and sexually active are also smart enough not to remarry and lose their Social Security.
I know of several couples (retired pastors and church organists among them, P.E.O. members, etc.) who would never have lived in sin earlier in their lives but find it necessary to do so now, for financial reasons.
The government hasn't found them, but it has cut off Mom's annuity. Go figure.
* Note: I carry two checkbooks and two ATM cards (deciding on each trip to the grocery store or Sav-On whether this set of purchases for both of us should go on her card or mine). And I do five income tax returns (hers, mine, and my three kids').
Thursday, April 06, 2006
Denny's and the Jacuzzi
Because Connie called in yesterday to say she would not be able to work this evening, I took over her shift. Instead of visiting in the afternoon, I showed up at 5 pm and took Mom to Denny's.
This is a big treat. I tried to get her to let me take her to the pier to look at the ocean and push her out to a restaurant there.
"No, I don't want to do that. I'm afraid of the ocean," she said.
Finally she agreed to take a peek at the ocean from the car but not to eat there.
So Denny's it was.
Sometime I want to be able to go to Denny's and not be the star of the show.
With her in the wheel chair and me attending her, we attract a lot of attention.
We wheeled up to a table as usual, but she had a different plan.
"I want to sit by a window."
"Okay," I said and laboriously lifted her out of the wheelchair and into a booth seat by a window.
We ordered, and then she said with alarm, "I have to go to the bathroom right now!"
I didn't remind her that when one is wearing Depends, these situations are not as urgent as they might seem.
Instead I pulled her out of the booth and into her wheelchair, chatting with some people at a nearby table who had picked up a sweater we had dropped earlier.
Thank God Denny's has wheelchair-accessible bathrooms. After using the toilet, we went to the sink.
"This is fun," she said as she sat there washing her hands. In her apartment the sink is not built to allow a wheelchair to slip under it, so she rarely gets to actually hold her hands under the water and wash them. Pretty exciting.
"Yes, Denny's is always fun," I answered.
Back into the booth, she attacked her Swiss steak with mushrooms and cheese and finished the whole thing. I dawdled through my Creole scrambled eggs.
We returned to Ocean View, where I insisted on giving her a tub bath in a jacuzzi designed so the side of the tub pulls up after you get the person in to sit on the seat.
That was exciting for me, but terrifying for her. She didn't like it.
At 8:45 pm she refused to go to bed.
"I stay up until ten o'clock," she said.
"No, you always go to bed at nine," I insisted.
I called my brother and talked for an hour about family health issues.
"Now to bed," I said at 10 pm.
"No!" she protested. "I don't go to bed until ten o'clock."
"IT IS TEN O'CLOCK!" I yelled.
"I guess I have to obey you," she said, assuming her poor-me tone of voice.
Just like a child, she will keep me there all night if she can.
This is a big treat. I tried to get her to let me take her to the pier to look at the ocean and push her out to a restaurant there.
"No, I don't want to do that. I'm afraid of the ocean," she said.
Finally she agreed to take a peek at the ocean from the car but not to eat there.
So Denny's it was.
Sometime I want to be able to go to Denny's and not be the star of the show.
With her in the wheel chair and me attending her, we attract a lot of attention.
We wheeled up to a table as usual, but she had a different plan.
"I want to sit by a window."
"Okay," I said and laboriously lifted her out of the wheelchair and into a booth seat by a window.
We ordered, and then she said with alarm, "I have to go to the bathroom right now!"
I didn't remind her that when one is wearing Depends, these situations are not as urgent as they might seem.
Instead I pulled her out of the booth and into her wheelchair, chatting with some people at a nearby table who had picked up a sweater we had dropped earlier.
Thank God Denny's has wheelchair-accessible bathrooms. After using the toilet, we went to the sink.
"This is fun," she said as she sat there washing her hands. In her apartment the sink is not built to allow a wheelchair to slip under it, so she rarely gets to actually hold her hands under the water and wash them. Pretty exciting.
"Yes, Denny's is always fun," I answered.
Back into the booth, she attacked her Swiss steak with mushrooms and cheese and finished the whole thing. I dawdled through my Creole scrambled eggs.
We returned to Ocean View, where I insisted on giving her a tub bath in a jacuzzi designed so the side of the tub pulls up after you get the person in to sit on the seat.
That was exciting for me, but terrifying for her. She didn't like it.
At 8:45 pm she refused to go to bed.
"I stay up until ten o'clock," she said.
"No, you always go to bed at nine," I insisted.
I called my brother and talked for an hour about family health issues.
"Now to bed," I said at 10 pm.
"No!" she protested. "I don't go to bed until ten o'clock."
"IT IS TEN O'CLOCK!" I yelled.
"I guess I have to obey you," she said, assuming her poor-me tone of voice.
Just like a child, she will keep me there all night if she can.
Monday, April 03, 2006
Come and Play with Me
Today is the first day of the new schedule in which Ocean View cares for Mom 6 am to 2 pm, I show up at 2 or 3 pm, and Mom has a private caregiver for only 6 hours, 5 pm to 10 pm.
I was hoping things would go smoothly and I would have a quiet morning to work on the income tax returns.
But at 9 am I got a phone call.
"This is your mother. What are we doing today?"
I felt like saying, "I am not your playmate. We are not doing anything today!"
But I talked to her about her fresh permanent and other plans.
"Today is Monday, and usually you get your hair done on Monday, but you can't today because of your new perm. So you will just have to sit in your chair and watch tv or go out and do whatever the group is doing in the main room. I will come at 2 pm and we will go buy some V-8. Who helped you to call me? Bethlhem? Can I talk with her?"
"How is she doing?" I asked. "She can just sit in her chair in her room and watch tv if she wants to. Or you can keep her out there and make her do whatever activities are happening this morning. I don't care."
Somehow she made it through the morning, but she was angry about having to sit with the group for a conversation.
"It was boring," she said. "Those people just sleep, or they don't talk."
I could picture the scene all too well.
We went out for our exciting trip to the supermarket, where I pushed her up and down the aisles. And then back to Ocean View.
Will she adjust to having no one to manage her mornings?
It's not starting well, but at least we are saving money.
I was hoping things would go smoothly and I would have a quiet morning to work on the income tax returns.
But at 9 am I got a phone call.
"This is your mother. What are we doing today?"
I felt like saying, "I am not your playmate. We are not doing anything today!"
But I talked to her about her fresh permanent and other plans.
"Today is Monday, and usually you get your hair done on Monday, but you can't today because of your new perm. So you will just have to sit in your chair and watch tv or go out and do whatever the group is doing in the main room. I will come at 2 pm and we will go buy some V-8. Who helped you to call me? Bethlhem? Can I talk with her?"
"How is she doing?" I asked. "She can just sit in her chair in her room and watch tv if she wants to. Or you can keep her out there and make her do whatever activities are happening this morning. I don't care."
Somehow she made it through the morning, but she was angry about having to sit with the group for a conversation.
"It was boring," she said. "Those people just sleep, or they don't talk."
I could picture the scene all too well.
We went out for our exciting trip to the supermarket, where I pushed her up and down the aisles. And then back to Ocean View.
Will she adjust to having no one to manage her mornings?
It's not starting well, but at least we are saving money.
Friday, March 31, 2006
Plan C--Or Is it Plan D?
I had to go to Ocean View to dress my mother again, arriving this time at 7 am.
When I got there she was wide awake in bed and had removed her flannel nightgown, lying naked in her bed and wanting to get up.
By the time I got her dressed and straightened up her room and left at 9:30 am, I had decided we couldn't have any plan where some mornings she had a private caregiver and other mornings she depended on the Ocean View staff. It would be too confusing.
I will have to count on Ocean View to get her up, dress her, and take care of her all mornings until 2 pm, except on Sundays, when I dress her and take her to church.
I called the agency to ask Ana to ask Connie, whom I had just fired from her evening shift as of April 1, to keep the evening shift after all, working 2-10 pm Tuesdays and Thursdays and 5 pm-11 pm Mondays and Fridays, and 5 pm to 5 am on Wednesdays (to total 40 hrs. per week).
That way at least Mom's evening routine will stay the same, and I can relax knowing Connie had arrived.
The only worry is what to do with Mom's energy after breakfast, from 9 am to noon, and after lunch if she was not sleepy. The Ocean View staff will try to make her sit in the group activities in the common area, throwing a ball or listening to a story or maybe singing.
But Mom hates that. It reminds her that she is institutionalized with other people, many of whom are even less mentally competent than she is.
I can try to get them to let her go back to her room and sit in her recliner in front of her tv, where she likes to spend most of her day, napping and chatting with a caregiver. But with no caregiver, they will be nervous about leaving her there, thinking she might try to slide out of her chair or do something else unsafe. They also believe she should join in with the others in the group activities, even if she doesn't like them.
Ana called Connie, and Connie agreed to continue to work her normal shift.
I went to see her in the evening to confirm this plan.
The week ends with the third new plan for caregiving work hours.
And with me again scheduled to work tomorrow morning at 6 am, as well as Sunday.
When I got there she was wide awake in bed and had removed her flannel nightgown, lying naked in her bed and wanting to get up.
By the time I got her dressed and straightened up her room and left at 9:30 am, I had decided we couldn't have any plan where some mornings she had a private caregiver and other mornings she depended on the Ocean View staff. It would be too confusing.
I will have to count on Ocean View to get her up, dress her, and take care of her all mornings until 2 pm, except on Sundays, when I dress her and take her to church.
I called the agency to ask Ana to ask Connie, whom I had just fired from her evening shift as of April 1, to keep the evening shift after all, working 2-10 pm Tuesdays and Thursdays and 5 pm-11 pm Mondays and Fridays, and 5 pm to 5 am on Wednesdays (to total 40 hrs. per week).
That way at least Mom's evening routine will stay the same, and I can relax knowing Connie had arrived.
The only worry is what to do with Mom's energy after breakfast, from 9 am to noon, and after lunch if she was not sleepy. The Ocean View staff will try to make her sit in the group activities in the common area, throwing a ball or listening to a story or maybe singing.
But Mom hates that. It reminds her that she is institutionalized with other people, many of whom are even less mentally competent than she is.
I can try to get them to let her go back to her room and sit in her recliner in front of her tv, where she likes to spend most of her day, napping and chatting with a caregiver. But with no caregiver, they will be nervous about leaving her there, thinking she might try to slide out of her chair or do something else unsafe. They also believe she should join in with the others in the group activities, even if she doesn't like them.
Ana called Connie, and Connie agreed to continue to work her normal shift.
I went to see her in the evening to confirm this plan.
The week ends with the third new plan for caregiving work hours.
And with me again scheduled to work tomorrow morning at 6 am, as well as Sunday.
Thursday, March 30, 2006
Crisis: Losing Jona
Ana called from the agency Wednesday evening to say that Jona would not be coming to work today because of a doctor's appointment.
I agreed to work her shift, arriving at 6 am to dress my mother and get her to breakfast.
When I walked into the room, she was sleeping sweetly while Stephen Foster's "Beautiful Dreamer" filled the air. Kim, the night caregiver, had put the Reader's Digest Quiet Music for Quiet Listening into her CD player.
"Beautiful dreamer, wake unto me! Dew drops and roses are waiting for thee...."
I chatted with Kim, then took care of Mom and handed her over to the Ocean View staff at 8 am with suggestions for how to manage her morning, greatful that Connie would be arriving at 2 pm.
But in the evening, Ana called again. I hate seeing her name on the face of my cell phone; it's always bad news, that a caregiver will not be showing up. She said that Jona will not be returning to work until after her baby was born in June. The doctor whom she saw today ordered her not to do any lifting or heavy work--to quit her job.
What a shock! On Monday I had painfully reduced Jona's hours to four per day, on Tuesday she had declined to work such limited hours, and on Wednesday we had arrived at the happy conclusion that she would keep her eight-hour shift until the end of June.
But that afternoon she had gone home and helped her mother, as usual, with the lifting and handling of her 16-year-old brother, who is confined to a wheelchair with cerebral palsy. In doing so, she had strained herself accidentally and caused bleeding, perhaps loosening the baby's placenta. The doctor had ordered no more lifting at all, either with her brother or by working with Mom.
"What do you want me to do for next week?" asked Ana. "Connie can't work the morning shift. Do you want me to hire someone for it? Racquel might be able to do it on Thursday and Friday mornings, and Connie could work on Tuesday and Saturday mornings for eight hours and maybe work two or three evening shifts a week."
"I don't know, " I said for the second time in two days. "Let me think about it."
Thursday evening ends with the prospect of suddenly never seeing Jona again, who has cared for Mom six days a week since October, 2004. Perhaps she will come by after the birth of her baby.
Should I hire someone to replace her? Or should I patch together a plan using Racquel and Connie, Mom's weekend and evening caregivers, for the morning shift? Or should I just hand Mom over the the Ocean View staff for the morning shift?
Jona told me yesterday that the Ocean View staff has its heaviest workload in the morning hours 6-9 am, getting the 31 residents up and dressed and to breakfast. She was saying that it wouldn't be a good idea to ask them to give her a shower then--it would be rushed.
I wish I could get Mom's care settled once and for all.
Meanwhile, I have to be there early tomorrow morning to substitute for Jona.
I agreed to work her shift, arriving at 6 am to dress my mother and get her to breakfast.
When I walked into the room, she was sleeping sweetly while Stephen Foster's "Beautiful Dreamer" filled the air. Kim, the night caregiver, had put the Reader's Digest Quiet Music for Quiet Listening into her CD player.
"Beautiful dreamer, wake unto me! Dew drops and roses are waiting for thee...."
I chatted with Kim, then took care of Mom and handed her over to the Ocean View staff at 8 am with suggestions for how to manage her morning, greatful that Connie would be arriving at 2 pm.
But in the evening, Ana called again. I hate seeing her name on the face of my cell phone; it's always bad news, that a caregiver will not be showing up. She said that Jona will not be returning to work until after her baby was born in June. The doctor whom she saw today ordered her not to do any lifting or heavy work--to quit her job.
What a shock! On Monday I had painfully reduced Jona's hours to four per day, on Tuesday she had declined to work such limited hours, and on Wednesday we had arrived at the happy conclusion that she would keep her eight-hour shift until the end of June.
But that afternoon she had gone home and helped her mother, as usual, with the lifting and handling of her 16-year-old brother, who is confined to a wheelchair with cerebral palsy. In doing so, she had strained herself accidentally and caused bleeding, perhaps loosening the baby's placenta. The doctor had ordered no more lifting at all, either with her brother or by working with Mom.
"What do you want me to do for next week?" asked Ana. "Connie can't work the morning shift. Do you want me to hire someone for it? Racquel might be able to do it on Thursday and Friday mornings, and Connie could work on Tuesday and Saturday mornings for eight hours and maybe work two or three evening shifts a week."
"I don't know, " I said for the second time in two days. "Let me think about it."
Thursday evening ends with the prospect of suddenly never seeing Jona again, who has cared for Mom six days a week since October, 2004. Perhaps she will come by after the birth of her baby.
Should I hire someone to replace her? Or should I patch together a plan using Racquel and Connie, Mom's weekend and evening caregivers, for the morning shift? Or should I just hand Mom over the the Ocean View staff for the morning shift?
Jona told me yesterday that the Ocean View staff has its heaviest workload in the morning hours 6-9 am, getting the 31 residents up and dressed and to breakfast. She was saying that it wouldn't be a good idea to ask them to give her a shower then--it would be rushed.
I wish I could get Mom's care settled once and for all.
Meanwhile, I have to be there early tomorrow morning to substitute for Jona.
Wednesday, March 29, 2006
Compromise Solution
In the morning I was clear on one thing: we could not cut Mom's private caregiver hours from 16 hours a day to zero in one big jump.
I called the agency and said we would like to keep one of the caregivers for eight hours per day and lay off the other caregiver. I thought I could fill in the cracks around giving up one caregiver.
My preference was to keep the evening caregiver so that her daily bath and bed routine would continue to be given by a person she knew well. But I felt that Connie, the evening person, could get another job easily, whereas the morning caregiver, Jona, is six months pregnant and could not easily find another job with as little lifting and hard work as this one.
In addition, Mom has more energy and needs more direction and companionship in the morning. She is more likely to sleep in the afternoon and early evening, so she may be able to get along without a private caregiver in those hours, except that her bath and bed routine will be disturbed. Ocean View offers a maximum of four showers per week, and these might end up being done by different people every day, including by men. Mom would not like that.
I asked the agency to retain Jona (the morning caregiver) and reassign Connie.
Ana at the agency called to tell me that Jona had accepted this plan.
I was happy when I saw Jona at 1 pm because things are resolved favorably. I like Jona a lot. She is so kind and caring with my mother, and I had promised her she would be able to work up until her baby's birth.
Now I can keep that promise and perhaps transition to having no private caregiver when she takes time off for the birth of her baby at the end of June.
I called the agency and said we would like to keep one of the caregivers for eight hours per day and lay off the other caregiver. I thought I could fill in the cracks around giving up one caregiver.
My preference was to keep the evening caregiver so that her daily bath and bed routine would continue to be given by a person she knew well. But I felt that Connie, the evening person, could get another job easily, whereas the morning caregiver, Jona, is six months pregnant and could not easily find another job with as little lifting and hard work as this one.
In addition, Mom has more energy and needs more direction and companionship in the morning. She is more likely to sleep in the afternoon and early evening, so she may be able to get along without a private caregiver in those hours, except that her bath and bed routine will be disturbed. Ocean View offers a maximum of four showers per week, and these might end up being done by different people every day, including by men. Mom would not like that.
I asked the agency to retain Jona (the morning caregiver) and reassign Connie.
Ana at the agency called to tell me that Jona had accepted this plan.
I was happy when I saw Jona at 1 pm because things are resolved favorably. I like Jona a lot. She is so kind and caring with my mother, and I had promised her she would be able to work up until her baby's birth.
Now I can keep that promise and perhaps transition to having no private caregiver when she takes time off for the birth of her baby at the end of June.
Tuesday, March 28, 2006
Just Saying No
It was difficult to break the news to Jona and Connie that I needed to cut back their hours to four hours each. During many months of 2005 they had each worked twelve hours per day, but I had cut it to eight hours and now to four hours.
Jona, the morning caregiver, had said she would not be able to work only four hours; she would ask the agency for a different assignment.
Connie, who works evenings, said she would be able to work only four hours because she has another job nearby for 8 hours on Mondays, Wednesdays, and Fridays. With the two jobs, she could make ends meet.
So I went to bed hopeful that I would be able to retain at least Connie, perhaps both of them.
But today I got a call from the agency: neither Connie nor Jona will continue to work with my mother for only four hours per day, and Racquel, the weekend caregiver, will not be able to work daily during the week because she has another job.
"Do you want us to look for someone else for the job?" asked Ana at the agency.
What a scary prospect: hire two new people working four hrs. per day each (if anyone can be found to show up reliably for those hours), train them, and bond with them--at a time when I need to cut back on private caregiver hours.
Or cut back from sixteen private caregiver hours per week to zero hours, cold turkey. That would mean training Ocean View caregivers to get Mom up in the morning and dress her, care for her during the day, and bathe her at night.
It would help her financial picture greatly, but it would also entail me doing a lot more hours of caregiving as she adjusted from having a full-time personal caregiver to having only the overworked staff of Ocean View. More hours for me was really scary.
I didn't know what to do. I told the agency I would call them back in the morning.
Jona, the morning caregiver, had said she would not be able to work only four hours; she would ask the agency for a different assignment.
Connie, who works evenings, said she would be able to work only four hours because she has another job nearby for 8 hours on Mondays, Wednesdays, and Fridays. With the two jobs, she could make ends meet.
So I went to bed hopeful that I would be able to retain at least Connie, perhaps both of them.
But today I got a call from the agency: neither Connie nor Jona will continue to work with my mother for only four hours per day, and Racquel, the weekend caregiver, will not be able to work daily during the week because she has another job.
"Do you want us to look for someone else for the job?" asked Ana at the agency.
What a scary prospect: hire two new people working four hrs. per day each (if anyone can be found to show up reliably for those hours), train them, and bond with them--at a time when I need to cut back on private caregiver hours.
Or cut back from sixteen private caregiver hours per week to zero hours, cold turkey. That would mean training Ocean View caregivers to get Mom up in the morning and dress her, care for her during the day, and bathe her at night.
It would help her financial picture greatly, but it would also entail me doing a lot more hours of caregiving as she adjusted from having a full-time personal caregiver to having only the overworked staff of Ocean View. More hours for me was really scary.
I didn't know what to do. I told the agency I would call them back in the morning.
Monday, March 27, 2006
Financial Reality
Background
When Mom sold her house for $450,000 early in 2002 at age 83, I figured she was set for life financially, with that amount in CDs and her monthly retirement income of $4,700. And I figured each of her four children would inherit a nice amount.
But my brother Bill said, "She will go through it in medical bills before she dies. Most people do." He's a surgeon, and in following elderly patients, he has seen it happen.
Nevertheless, my siblings and I set her up in a nice residence, first for independent living, later for assisted living, and now for assisted living for the mentally impaired because of her dementia.
She didn't use much of her capital until she fell and broke her hip in August, 2004, and even then the cost of her care in a skilled nursing facility approximately equaled her income.
The cost went up when we decided to move her out of the grim SNF with its hospital-like atmosphere into a much nicer assisted living residence. That was about $7,000 per month for the maximum level of care, which she needed--incontinence care, bathing, dressing and undressing, being taken to meals and put to bed.
But when I realized that she was getting out of her chair or bed and falling, I learned that assisted living facilties are not licensed to use any form of restraint. The only way to keep her in that residence safely was to hire a private caregiver to attend her and verbally restrain her. That's when the costs skyrocketed.
We paid $14 per hour, at first during the daytime hours (8 hrs. supplemented by a 2-4 hr. visit from me or my sister), then also 6 pm to 6 am, finally 24 hrs. per day.
The alternative was to put her back into a SNF, where she would be strapped into a chair during the day and strapped into a hospital bed at night (or kept in a bed with full-length bars raised instead of a restraint over her waist. (Assisted living facilities are not licensed to use any form of restraint.)
All this care kept her safe--and it even saved her life when she had an allergic reaction at 1 am in June, 2005, and the caregiver was able to respond and call 911 when her swollen tongue and throat had blocked her breathing.
Cutting back on care
In January I reduced her care to 16 hours per day in order to slow the drain on her financial resources. I counted on her being less able to climb out of bed at night than she had been over a year ago and also on her understanding the rules of her life by now--that she can't get out of bed in the night alone.
But still she was angry with me--she was used to having someone at her side to respond to her fears and dreams during the night, as well as to give her a sip of orange juice, put soothing music on the CD player, and change her Depends.
She told anyone who would listen, "Anne's trying to kill me." That was her explanation for why I had removed the night caregivers.
Financial Review of 2005
During this past week in order to gather Mom's financial records to send to the kind CPA who does her taxes, I entered her income and expenses into Quicken.
The results were shocking. Her income was excellent--$83,000. But we had paid $85,000 for her room, board and care in assisted living. And we had paid $105,000 on top of that for the private caregivers.
All this because of her dementia--to keep her from getting out of her chair or bed and falling, and to give her someone to dress her, tend to her, and talk with her. This one-on-one relationship is excellent for her mental health--it keeps her depression, anxiety, and hallucinations in check.
But at this rate her money will last only one more year, and it looks as if her health may last several more years.
Life Expectancy--A Guessing Game
When she had her broken hip, Bill said that 50% of those her age who break a hip die within a year. Based on that statistic, we spent money freely to give her the best possible arrangements for her last year or two.
But now her health has stabilized, with all this excellent care. Her doctor says that at age 87 one's life expectancy is four years. How Lewy Body Dementia will affect that time period is anyone's guess.
At any rate, we now need to make sure her remaining $200,000 will last for several more years.
Further reductions in caregiver hours
My conclusion is that we have to give up the private caregivers, gradually. She now has 16 hours of care per day: one caregiver 6 am to 2 pm, and one 2 pm to 10 pm. I decided to tell each of them that we have to cut back to four hours in the morning and four hours in the evening.
That would mean that she would still be dressed and started in the morning by a private caregiver, 6 am to 10 am, and she would still have her evening routine including daily bath unchanged, 6 pm to 10 pm.
I broke this news to each of her caregivers, and I also told them that I would understand if they decided they could not work only four hours. After all, they only get paid $12 per hour after the agency takes $2 per hour, so that means they commute and work 8 hours for only $96. Commuting and working 4 hours for only $48 might not be worth their time, but I hope they each will continue with her. She knows them and is used to their care.
When Mom sold her house for $450,000 early in 2002 at age 83, I figured she was set for life financially, with that amount in CDs and her monthly retirement income of $4,700. And I figured each of her four children would inherit a nice amount.
But my brother Bill said, "She will go through it in medical bills before she dies. Most people do." He's a surgeon, and in following elderly patients, he has seen it happen.
Nevertheless, my siblings and I set her up in a nice residence, first for independent living, later for assisted living, and now for assisted living for the mentally impaired because of her dementia.
She didn't use much of her capital until she fell and broke her hip in August, 2004, and even then the cost of her care in a skilled nursing facility approximately equaled her income.
The cost went up when we decided to move her out of the grim SNF with its hospital-like atmosphere into a much nicer assisted living residence. That was about $7,000 per month for the maximum level of care, which she needed--incontinence care, bathing, dressing and undressing, being taken to meals and put to bed.
But when I realized that she was getting out of her chair or bed and falling, I learned that assisted living facilties are not licensed to use any form of restraint. The only way to keep her in that residence safely was to hire a private caregiver to attend her and verbally restrain her. That's when the costs skyrocketed.
We paid $14 per hour, at first during the daytime hours (8 hrs. supplemented by a 2-4 hr. visit from me or my sister), then also 6 pm to 6 am, finally 24 hrs. per day.
The alternative was to put her back into a SNF, where she would be strapped into a chair during the day and strapped into a hospital bed at night (or kept in a bed with full-length bars raised instead of a restraint over her waist. (Assisted living facilities are not licensed to use any form of restraint.)
All this care kept her safe--and it even saved her life when she had an allergic reaction at 1 am in June, 2005, and the caregiver was able to respond and call 911 when her swollen tongue and throat had blocked her breathing.
Cutting back on care
In January I reduced her care to 16 hours per day in order to slow the drain on her financial resources. I counted on her being less able to climb out of bed at night than she had been over a year ago and also on her understanding the rules of her life by now--that she can't get out of bed in the night alone.
But still she was angry with me--she was used to having someone at her side to respond to her fears and dreams during the night, as well as to give her a sip of orange juice, put soothing music on the CD player, and change her Depends.
She told anyone who would listen, "Anne's trying to kill me." That was her explanation for why I had removed the night caregivers.
Financial Review of 2005
During this past week in order to gather Mom's financial records to send to the kind CPA who does her taxes, I entered her income and expenses into Quicken.
The results were shocking. Her income was excellent--$83,000. But we had paid $85,000 for her room, board and care in assisted living. And we had paid $105,000 on top of that for the private caregivers.
All this because of her dementia--to keep her from getting out of her chair or bed and falling, and to give her someone to dress her, tend to her, and talk with her. This one-on-one relationship is excellent for her mental health--it keeps her depression, anxiety, and hallucinations in check.
But at this rate her money will last only one more year, and it looks as if her health may last several more years.
Life Expectancy--A Guessing Game
When she had her broken hip, Bill said that 50% of those her age who break a hip die within a year. Based on that statistic, we spent money freely to give her the best possible arrangements for her last year or two.
But now her health has stabilized, with all this excellent care. Her doctor says that at age 87 one's life expectancy is four years. How Lewy Body Dementia will affect that time period is anyone's guess.
At any rate, we now need to make sure her remaining $200,000 will last for several more years.
Further reductions in caregiver hours
My conclusion is that we have to give up the private caregivers, gradually. She now has 16 hours of care per day: one caregiver 6 am to 2 pm, and one 2 pm to 10 pm. I decided to tell each of them that we have to cut back to four hours in the morning and four hours in the evening.
That would mean that she would still be dressed and started in the morning by a private caregiver, 6 am to 10 am, and she would still have her evening routine including daily bath unchanged, 6 pm to 10 pm.
I broke this news to each of her caregivers, and I also told them that I would understand if they decided they could not work only four hours. After all, they only get paid $12 per hour after the agency takes $2 per hour, so that means they commute and work 8 hours for only $96. Commuting and working 4 hours for only $48 might not be worth their time, but I hope they each will continue with her. She knows them and is used to their care.
Thursday, March 16, 2006
A Day of Neglect
Mom had a tough day today. Her afternoon caregiver, Connie, was scheduled to work 2 pm to 10 pm but had an emergency with her 13-year-old daughter and couldn't come.
When I got the call at 1:30 pm, I didn't ask for a replacement. Instead I decided that Ocean View staff members could look after Mom until I arrived at about 7 pm to give her a shower.
I knew there was a St. Patrick's Day party 2-4 pm, then dinner. I called Ocean View to let the staff know that Mom was in their care 2-7 pm.
At 2:30 pm I almost went over to check on Mom, but then I stopped myself. Instead I prepared for the 4:30 pm community meeting I attended today.
At 6:30 pm I got a call from Bethlhem, the lead caregiver, asking whether I was coming and whether she could take Mom back to her room and leave her. She didn't say that Mom was so frustrated with not being allowed to return to her room after dinner that she was crying, but Mom reported that later.
When I arrived at 7:15 pm, Mom was in a hysterical state of anxiety. Her cheeks were flushed, her look bewildered. Her breathing was heavy wheezing. She said she had been expecting me all day, but I didn't come.
Then she launched into a tale about how mean "she" is. Mom can no longer tell her caregivers apart; they blend together in her mind.
"She wouldn't let me go back to my room. 'I don't give a damn' she said."
"She shouldn't say that!" I answered. "If she does that, I may have to fire her."
Mom liked that idea.
After listening to her tale of woe (caused by my decision not to call in a substitute), I gave her a shower and dressed her for bedtime. Then I found the musical "Annie" on television and set her up to watch it on tv until the Ocean View staff came to put her to bed.
When I left, she was cozy and content. However, this episode demonstrated how valuable the caregivers are. She thrives on having them with her to converse and to attend her needs.
As soon as I try to save money by not having the caregivers with her, she panics. Their absence causes a change in her schedule, and that creates more panic.
Note: It would be better to have no private caregivers than intermittent caregivers. One day full care, the next just partial is too confusing for her.
When I got the call at 1:30 pm, I didn't ask for a replacement. Instead I decided that Ocean View staff members could look after Mom until I arrived at about 7 pm to give her a shower.
I knew there was a St. Patrick's Day party 2-4 pm, then dinner. I called Ocean View to let the staff know that Mom was in their care 2-7 pm.
At 2:30 pm I almost went over to check on Mom, but then I stopped myself. Instead I prepared for the 4:30 pm community meeting I attended today.
At 6:30 pm I got a call from Bethlhem, the lead caregiver, asking whether I was coming and whether she could take Mom back to her room and leave her. She didn't say that Mom was so frustrated with not being allowed to return to her room after dinner that she was crying, but Mom reported that later.
When I arrived at 7:15 pm, Mom was in a hysterical state of anxiety. Her cheeks were flushed, her look bewildered. Her breathing was heavy wheezing. She said she had been expecting me all day, but I didn't come.
Then she launched into a tale about how mean "she" is. Mom can no longer tell her caregivers apart; they blend together in her mind.
"She wouldn't let me go back to my room. 'I don't give a damn' she said."
"She shouldn't say that!" I answered. "If she does that, I may have to fire her."
Mom liked that idea.
After listening to her tale of woe (caused by my decision not to call in a substitute), I gave her a shower and dressed her for bedtime. Then I found the musical "Annie" on television and set her up to watch it on tv until the Ocean View staff came to put her to bed.
When I left, she was cozy and content. However, this episode demonstrated how valuable the caregivers are. She thrives on having them with her to converse and to attend her needs.
As soon as I try to save money by not having the caregivers with her, she panics. Their absence causes a change in her schedule, and that creates more panic.
Note: It would be better to have no private caregivers than intermittent caregivers. One day full care, the next just partial is too confusing for her.
Wednesday, March 15, 2006
Not Funny
I'm not usually tempted to crawl into bed and pull the covers over my head at 5 pm, but it happened today.
It wasn't a bad day really--just a doctor's appointment for Mom and a birthday luncheon for her and my daughter Roz, with a few other errands tucked in the edges.
As we were finishing lunch, Roz ran outside to put more quarters in the parking meter for her car. That left Mom and me and Roz's friend Malina, who is visiting southern California while on spring break from college in New York City with Roz.
Mom was dressed elegantly and her hair had been done on Monday--all in all, a suitable family matriarch, to all appearances.
As we were talking, she mumbled something about a sweet little kitty, I thought. I didn't quite hear it.
"What did you say?" I asked.
"They're afraid I'll show them my sweet little titty," she repeated.
Silence. There we were at the nice seafood restaurant, Mom and I and Roz's nice new friend from Barnard College.
"Disinhibition," I said, finally. "That's an example of what I was telling you about." Fortunately the subject of Lewy Body Dementia and disinhibited speech had come up before in my conversations with Roz's friends over the last six days.
"Oh, I understand. It's not a problem," Malina said.
"I guess I shouldn't have said that," Mom then commented, noticing that something was wrong.
"No, you shouldn't have," I said.
The moment passed. Roz returned, but I didn't mention it to her. She had been so brave, trying to engage her grandmother in conversation.
"How are things at Ocean View?" she had asked. "How are your friends doing?"
"Oh, same old thing--boring," Mom had said. A pretty good answer. But she didn't have much to say to the second question.
I could have explained: she doesn't have any friends. She is surrounded by the same people every day, but none of them has a real capacity for friendship. That would require several abilities: to listen, to retain what someone has said, and to focus their attention on another person's words and feelings.
When lunch was over, I drove Mom back to Ocean View, but I was rethinking her future.
I can tolerate things like wiping her mouth and chin in public or fielding random comments when she tries to participate in a conversation, but I reached my limit today. She is no longer fit for polite company.
From now on, she will be confined either to the floor she lives on or to the immediate family. I'm not sure that grandchildren (except for my own) will be included in that category.
One of the tragedies of Lewy Body is that the patient's mental condition varies from day to day and sometimes moment to moment. Lucid to looney. Unlike persons with Alzheimer's, who talk less and less, LBD people talk as much as ever. They just don't have a functioning frontal temporal lobe, which screens speech and behavior for social acceptibility.
Up until today, my general plan has been to keep her life as normal as possible. I take her out to attend church, to dine at restaurants, to share family parties, and even to attend social events such as P.E.O. I introduce her to my friends and my children's friends.
But I need to cut back. I need to protect myself. I need to recognize that she belongs in an environment where dementia is expected and understood.
The biggest hazard I see on the horizon is taking her to P.E.O. meetings. Because I've already committed to taking her to them, I will give her one more chance, but I will watch her like a hawk. If she makes any mistake like the one today, that will be her last P.E.O. meeting.
It wasn't a bad day really--just a doctor's appointment for Mom and a birthday luncheon for her and my daughter Roz, with a few other errands tucked in the edges.
As we were finishing lunch, Roz ran outside to put more quarters in the parking meter for her car. That left Mom and me and Roz's friend Malina, who is visiting southern California while on spring break from college in New York City with Roz.
Mom was dressed elegantly and her hair had been done on Monday--all in all, a suitable family matriarch, to all appearances.
As we were talking, she mumbled something about a sweet little kitty, I thought. I didn't quite hear it.
"What did you say?" I asked.
"They're afraid I'll show them my sweet little titty," she repeated.
Silence. There we were at the nice seafood restaurant, Mom and I and Roz's nice new friend from Barnard College.
"Disinhibition," I said, finally. "That's an example of what I was telling you about." Fortunately the subject of Lewy Body Dementia and disinhibited speech had come up before in my conversations with Roz's friends over the last six days.
"Oh, I understand. It's not a problem," Malina said.
"I guess I shouldn't have said that," Mom then commented, noticing that something was wrong.
"No, you shouldn't have," I said.
The moment passed. Roz returned, but I didn't mention it to her. She had been so brave, trying to engage her grandmother in conversation.
"How are things at Ocean View?" she had asked. "How are your friends doing?"
"Oh, same old thing--boring," Mom had said. A pretty good answer. But she didn't have much to say to the second question.
I could have explained: she doesn't have any friends. She is surrounded by the same people every day, but none of them has a real capacity for friendship. That would require several abilities: to listen, to retain what someone has said, and to focus their attention on another person's words and feelings.
When lunch was over, I drove Mom back to Ocean View, but I was rethinking her future.
I can tolerate things like wiping her mouth and chin in public or fielding random comments when she tries to participate in a conversation, but I reached my limit today. She is no longer fit for polite company.
From now on, she will be confined either to the floor she lives on or to the immediate family. I'm not sure that grandchildren (except for my own) will be included in that category.
One of the tragedies of Lewy Body is that the patient's mental condition varies from day to day and sometimes moment to moment. Lucid to looney. Unlike persons with Alzheimer's, who talk less and less, LBD people talk as much as ever. They just don't have a functioning frontal temporal lobe, which screens speech and behavior for social acceptibility.
Up until today, my general plan has been to keep her life as normal as possible. I take her out to attend church, to dine at restaurants, to share family parties, and even to attend social events such as P.E.O. I introduce her to my friends and my children's friends.
But I need to cut back. I need to protect myself. I need to recognize that she belongs in an environment where dementia is expected and understood.
The biggest hazard I see on the horizon is taking her to P.E.O. meetings. Because I've already committed to taking her to them, I will give her one more chance, but I will watch her like a hawk. If she makes any mistake like the one today, that will be her last P.E.O. meeting.
Tuesday, March 14, 2006
Sleepy Day
Today when I arrived at 2 pm, Mom was sound asleep in her recliner and unrousable.
I talked with her caregiver for a few minutes, but Mom never said a thing.
Then I asked Mom to wake up to sign her name on three birthday cards. She talked to me but did not open her eyes.
"Open your eyes, Mom, if you are talking to me," I said.
She answered but did not open her eyes. Somehow we got the cards signed in a wide, loopy version of her signature.
I told her I was leaving and said goodby.
Thank goodness for a few sleepy days interspersed with the challenging days.
I talked with her caregiver for a few minutes, but Mom never said a thing.
Then I asked Mom to wake up to sign her name on three birthday cards. She talked to me but did not open her eyes.
"Open your eyes, Mom, if you are talking to me," I said.
She answered but did not open her eyes. Somehow we got the cards signed in a wide, loopy version of her signature.
I told her I was leaving and said goodby.
Thank goodness for a few sleepy days interspersed with the challenging days.
Monday, March 13, 2006
Overdose of Caregiving
I couldn't drag myself over to Ocean View Assisted Living today.
On Mondays, Wednesdays, and Fridays I try to cover the 2-5 pm period when Mom has no private caregiver. I usually arrive about 2:30 pm, figuring she will sleep in her chair for a while after Jona has left.
But today I didn't get there until 3:30 pm. Nothing in particular delayed me, except the thousand and one things I need to get done, things that didn't get done while I was out of town for a week and while my college kids have been home for spring break.
I arrived to find that Mom had wriggled down in her recliner with her back on the seat of the chair and her legs hanging off the footrest, but she was okay.
I took her to the toilet, mainly to change her Depend, which was sodden. She didn't want to walk there using her walker--the wheelchair is easier--but I insisted, and she laughed.
"Things are always funny when we are together," she said, remembering the hysterical laughter last night.
Nothing seemed funny to me, though. I was focused on getting to Sav-On to buy more Depends and other products, then getting her back so I could leave as soon as possible, maybe by 4:30.
Every simple activity seemed to take so long: I couldn't slow down to the snail's pace of life at Ocean View.
"You didn't put powder in," she said, as I pulled up her Depend. Today this complaint was not funny.
After I parked the car at Sav-On, I said what I always say: "I'll be right back."
Mom said what she always says: "I'll time you." Today she added, "It will probably be an hour."
Somehow this didn't turn into good-humored banter. It just felt like another complaint. I can get in and out of Sav-On in ten minutes on a good day, and I usually don't mind the shopping.
But today my mood was low. Instead of offering any kind of gratitude, Mom times me on how fast I can do the shopping.
Actually there was another factor weighing me down. Earlier today I had agreed to take time on Thursday morning to drive a wheelchair-bound older friend to Fantastic Sam's to get a haircut. I should have said no when she called with this request, but she had never asked any favor before and, taken by surprise, I didn't know how to refuse her.
After hanging up the phone, I told myself, "Great, Anne. Why don't you make a career of this? Driving older people on their errands. While all your other work doesn't get done, you agree to do things like this. You do elder care for free while your husband goes to work and earns money. Congratulations, stupid."
"You took 25 minutes," Mom reported when I got back to the car. I threw some of the items into the car angrily and drove back to Ocean View, where I unloaded Mom from the car to the wheelchair, hung all the plastic bags off the handles and piled two of them on her lap. We went up the first elevator, around the U-shaped building, up the second elevator, and to her room.
I didn't offer Mom a bathroom trip. Instead, after unloading the items, I started her on walking to the dining hall with her walker. She did well, and I left.
Diagnosis: overdose of caregiving.
All the books--like The 36-Hour Day--say to take care of yourself. Don't get too worn out.
Instead I put in 15 hours yesterday and agreed to drive to Fantastic Sam's on Thursday.
The result is not good.
Resource: The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss Later in Life by Nancy L. Mace and Peter V. Rabins (New York: Warner, 1981).
On Mondays, Wednesdays, and Fridays I try to cover the 2-5 pm period when Mom has no private caregiver. I usually arrive about 2:30 pm, figuring she will sleep in her chair for a while after Jona has left.
But today I didn't get there until 3:30 pm. Nothing in particular delayed me, except the thousand and one things I need to get done, things that didn't get done while I was out of town for a week and while my college kids have been home for spring break.
I arrived to find that Mom had wriggled down in her recliner with her back on the seat of the chair and her legs hanging off the footrest, but she was okay.
I took her to the toilet, mainly to change her Depend, which was sodden. She didn't want to walk there using her walker--the wheelchair is easier--but I insisted, and she laughed.
"Things are always funny when we are together," she said, remembering the hysterical laughter last night.
Nothing seemed funny to me, though. I was focused on getting to Sav-On to buy more Depends and other products, then getting her back so I could leave as soon as possible, maybe by 4:30.
Every simple activity seemed to take so long: I couldn't slow down to the snail's pace of life at Ocean View.
"You didn't put powder in," she said, as I pulled up her Depend. Today this complaint was not funny.
After I parked the car at Sav-On, I said what I always say: "I'll be right back."
Mom said what she always says: "I'll time you." Today she added, "It will probably be an hour."
Somehow this didn't turn into good-humored banter. It just felt like another complaint. I can get in and out of Sav-On in ten minutes on a good day, and I usually don't mind the shopping.
But today my mood was low. Instead of offering any kind of gratitude, Mom times me on how fast I can do the shopping.
Actually there was another factor weighing me down. Earlier today I had agreed to take time on Thursday morning to drive a wheelchair-bound older friend to Fantastic Sam's to get a haircut. I should have said no when she called with this request, but she had never asked any favor before and, taken by surprise, I didn't know how to refuse her.
After hanging up the phone, I told myself, "Great, Anne. Why don't you make a career of this? Driving older people on their errands. While all your other work doesn't get done, you agree to do things like this. You do elder care for free while your husband goes to work and earns money. Congratulations, stupid."
"You took 25 minutes," Mom reported when I got back to the car. I threw some of the items into the car angrily and drove back to Ocean View, where I unloaded Mom from the car to the wheelchair, hung all the plastic bags off the handles and piled two of them on her lap. We went up the first elevator, around the U-shaped building, up the second elevator, and to her room.
I didn't offer Mom a bathroom trip. Instead, after unloading the items, I started her on walking to the dining hall with her walker. She did well, and I left.
Diagnosis: overdose of caregiving.
All the books--like The 36-Hour Day--say to take care of yourself. Don't get too worn out.
Instead I put in 15 hours yesterday and agreed to drive to Fantastic Sam's on Thursday.
The result is not good.
Resource: The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss Later in Life by Nancy L. Mace and Peter V. Rabins (New York: Warner, 1981).
Sunday, March 12, 2006
Birthday Giddy
Because today is Mom's 87th birthday, we had lots of plans. In addition, her weekend 2-10 pm caregiver, Racquel, had a sister visiting from the Philippines and took the weekend off.
As it turned out, I was with Mom constantly from 6:30 am to 9:30 pm. By the end we were both giddy.
Power struggles, role reversal--everything was funny.
For example, brushing teeth.
"Do you brush them or do I?" I asked, not remembering caregiver details.
"You do," she giggled.
"Oh yeah? I think you can just brush them yourself," I said, trying not to laugh.
"You're making me pee in my diaper," she warned helplessly. "Now we have to change it again."
"Oh, all right," I said, the complaint in my voice setting her off again.
"You didn't put any powder in," she complained, knowing she was being demanding.
"You don't need any more," I countered.
"I always make them put it in. What if they say 'Why should I, if your own daughter doesn't?'"
"Well, that's just tough," I answered. "I'm not putting in any powder." And my refusal sent us both into hysterics again.
"Okay, time to go to bed," I said, trying to recover the voice of authority.
"I'm not ready for bed," she said. "I usually sit in the chair and watch tv."
"It's 9 0'clock," I said. "The time when you always go to bed."
"But I was planning to stay up until 10," she countered, giggling at herself for sounding like a six-year-old.
"Well, I'm going to go home and go to bed, so you should be in bed before I leave," I argued. "You'll just fall asleep in your chair, and then someone will have to get you into your bed."
"Oh, all right. At least it's not a raggedy nightgown tonight."
"Oh yeah, poor you. But we got rid of those ragged gowns. We bought two new ones today."
"Yes," she admitted.
"You've had a nice day. You went to church, out to lunch, home for your birthday cake, opened presents. And everyone at church sang Happy Birthday to you."
"It was embarrassing."
"Not grateful, are you?" I commented sarcastically, as we both started laughing again.
"No--you told them I was 87."
"It's a big deal to be 87. Most people don't make it that far."
"I suppose...."
Somehow she ended up in bed, tucked in, and I ended up running for the exit door to the secure floor, punching in the code to leave.
We made it through the big birthday with enough fun and attention to last until next year, I hope.
As it turned out, I was with Mom constantly from 6:30 am to 9:30 pm. By the end we were both giddy.
Power struggles, role reversal--everything was funny.
For example, brushing teeth.
"Do you brush them or do I?" I asked, not remembering caregiver details.
"You do," she giggled.
"Oh yeah? I think you can just brush them yourself," I said, trying not to laugh.
"You're making me pee in my diaper," she warned helplessly. "Now we have to change it again."
"Oh, all right," I said, the complaint in my voice setting her off again.
"You didn't put any powder in," she complained, knowing she was being demanding.
"You don't need any more," I countered.
"I always make them put it in. What if they say 'Why should I, if your own daughter doesn't?'"
"Well, that's just tough," I answered. "I'm not putting in any powder." And my refusal sent us both into hysterics again.
"Okay, time to go to bed," I said, trying to recover the voice of authority.
"I'm not ready for bed," she said. "I usually sit in the chair and watch tv."
"It's 9 0'clock," I said. "The time when you always go to bed."
"But I was planning to stay up until 10," she countered, giggling at herself for sounding like a six-year-old.
"Well, I'm going to go home and go to bed, so you should be in bed before I leave," I argued. "You'll just fall asleep in your chair, and then someone will have to get you into your bed."
"Oh, all right. At least it's not a raggedy nightgown tonight."
"Oh yeah, poor you. But we got rid of those ragged gowns. We bought two new ones today."
"Yes," she admitted.
"You've had a nice day. You went to church, out to lunch, home for your birthday cake, opened presents. And everyone at church sang Happy Birthday to you."
"It was embarrassing."
"Not grateful, are you?" I commented sarcastically, as we both started laughing again.
"No--you told them I was 87."
"It's a big deal to be 87. Most people don't make it that far."
"I suppose...."
Somehow she ended up in bed, tucked in, and I ended up running for the exit door to the secure floor, punching in the code to leave.
We made it through the big birthday with enough fun and attention to last until next year, I hope.
Tuesday, February 28, 2006
LBD and Otis Chandler
Otis Chandler, long-term publisher of the Los Angeles Times, died on Monday, February 27, as a result of Lewy Body Disease. He was 78 years old.
For more information, go to www.latimes.com/news and then use the search tool by entering his name.
Chandler was publisher from 1960-1980. He guided major changes in the newspaper's scope and outlook, making it one of the leading daily papers in the US.
A vigorous athlete, he was diagnosed about a year ago and declined swiftly in the last week.
In fact, his dementia began several years ago. For his 75th birthday, his family had been planning a big party, but they decided to cancel their plans when it became apparent that he might say or do inappropriate things. LBD patients lose normal inhibitions controlling speech and behavior, but they retain the ability to talk and to initiate behavior.
Speakers at Chandler's memorial service included his wife, Bettina, who described a moving Lewy Body moment, as reported in the LA Times, March 7, p. B1:
Bettina Chandler brought tears to many in the church when she told a story about Chandler that included a reference to his firstborn son, Norman, who died of a brain tumor in 2002. Otis, she said, woke up recently, when disease was claiming his reasoning powers, and announced to her: "I have to pack."
"Where are you going?" she asked.
"I don't know," Chandler replied, "but Norman's coming for me."
For more information, go to www.latimes.com/news and then use the search tool by entering his name.
Chandler was publisher from 1960-1980. He guided major changes in the newspaper's scope and outlook, making it one of the leading daily papers in the US.
A vigorous athlete, he was diagnosed about a year ago and declined swiftly in the last week.
In fact, his dementia began several years ago. For his 75th birthday, his family had been planning a big party, but they decided to cancel their plans when it became apparent that he might say or do inappropriate things. LBD patients lose normal inhibitions controlling speech and behavior, but they retain the ability to talk and to initiate behavior.
Speakers at Chandler's memorial service included his wife, Bettina, who described a moving Lewy Body moment, as reported in the LA Times, March 7, p. B1:
Bettina Chandler brought tears to many in the church when she told a story about Chandler that included a reference to his firstborn son, Norman, who died of a brain tumor in 2002. Otis, she said, woke up recently, when disease was claiming his reasoning powers, and announced to her: "I have to pack."
"Where are you going?" she asked.
"I don't know," Chandler replied, "but Norman's coming for me."
Friday, February 17, 2006
Playing DAISY
We played DAISY at the P.E.O. meeting today. It's like BINGO, but about twenty times harder.
Each person has a printed sheet with five columns and five rows, as in a Bingo game.
But in each square there is a sentence of 8-27 words or a phrase such as "One of the seven founders: Alice Coffin."
The president pulls a slip of paper out of a container and reads aloud each sentence, announcing that it is in column D or perhaps column S. Each person looks to see if she has that sentence.
Since there are seven founders, finding a square that begins "One of the seven founders" is not good enough. You have to distinguish it from the other six squares that begin that way.
Likewise, if the president reads, "Suela Pearson used a large wooden crochet hook as a gavel," you have to make sure you don't cross off a square just because it begins with "Suele Pearson...." Suela did five or six other things that each earns a different square.
This is fine if you are just managing one sheet of paper, but I was trying to monitor Mom's paper as well as mine.
She was listening and eagerly crossing off a square each time anything was said. I didn't want her to cry "Daisy!" long before anyone else and then argue over whether her sheet actually warranted her claim, so I was checking her sheet and putting my mark in any square that could legitimately be crossed off.
If she actually got a Daisy, I thought I would know, but in fact I couldn't keep track of her sheet and mine and my Xs vs. her Xs on her sheet.
To add to the confusion, several times the president pulled out a piece of paper and started reading it: "Suela Pearson was--" or "Alice Bird wrote--" but then discarded it, announcing "We already had that one."
There were a few cries of "Are you sure? Are there duplicates in that box?"
I was pretty sure these only seemed to be duplicates. I wanted to hear the rest of the sentence in order to get a Daisy, but not at the cost of challenging the president's competence.
At one point Mom claimed, "We've got a Daisy--that's a Daisy," but I was able to convince her we hadn't actually won.
Finally one P.E.O. got a Daisy, and then another, until there were four winners (each earning a pencil).
With relief, I stopped searching and began to enjoy some of the interesting facts on the sheet:
* P.E.O. started on Jan. 21, 1869.
* One girl didn't get to be invited to a Sorority, so she founded P.E.O.
* The founders got in trouble with the president of Iowa Wesleyan College for wearing pins.
* Self-improvement is a form of education and thus must be called P.E.O.'s first project.
* Mary Allen shared 57 years of ministry with her husband.
Each person has a printed sheet with five columns and five rows, as in a Bingo game.
But in each square there is a sentence of 8-27 words or a phrase such as "One of the seven founders: Alice Coffin."
The president pulls a slip of paper out of a container and reads aloud each sentence, announcing that it is in column D or perhaps column S. Each person looks to see if she has that sentence.
Since there are seven founders, finding a square that begins "One of the seven founders" is not good enough. You have to distinguish it from the other six squares that begin that way.
Likewise, if the president reads, "Suela Pearson used a large wooden crochet hook as a gavel," you have to make sure you don't cross off a square just because it begins with "Suele Pearson...." Suela did five or six other things that each earns a different square.
This is fine if you are just managing one sheet of paper, but I was trying to monitor Mom's paper as well as mine.
She was listening and eagerly crossing off a square each time anything was said. I didn't want her to cry "Daisy!" long before anyone else and then argue over whether her sheet actually warranted her claim, so I was checking her sheet and putting my mark in any square that could legitimately be crossed off.
If she actually got a Daisy, I thought I would know, but in fact I couldn't keep track of her sheet and mine and my Xs vs. her Xs on her sheet.
To add to the confusion, several times the president pulled out a piece of paper and started reading it: "Suela Pearson was--" or "Alice Bird wrote--" but then discarded it, announcing "We already had that one."
There were a few cries of "Are you sure? Are there duplicates in that box?"
I was pretty sure these only seemed to be duplicates. I wanted to hear the rest of the sentence in order to get a Daisy, but not at the cost of challenging the president's competence.
At one point Mom claimed, "We've got a Daisy--that's a Daisy," but I was able to convince her we hadn't actually won.
Finally one P.E.O. got a Daisy, and then another, until there were four winners (each earning a pencil).
With relief, I stopped searching and began to enjoy some of the interesting facts on the sheet:
* P.E.O. started on Jan. 21, 1869.
* One girl didn't get to be invited to a Sorority, so she founded P.E.O.
* The founders got in trouble with the president of Iowa Wesleyan College for wearing pins.
* Self-improvement is a form of education and thus must be called P.E.O.'s first project.
* Mary Allen shared 57 years of ministry with her husband.
80% Chance of Craziness
I sat in the living room during the business portion of today's meeting, reading a book, and I could overhear some of the conversation.
My ears perked up when I heard Mom say, "When my mother was at the Chapter House, I made a move that was the worst thing I could do. I brought her to Telluride, at the high altitude, and she died in my arms."
Oh no! Someone must have said something about a local Chapter House, the senior residences owned by P.E.O. for older members.
Mom had taken those words as an opportunity to try to join the conversation by reciting a set speech she has given many times before.
Besides being inappropriate and an interruption to the business, the story was not even true. It was her grandmother who died in her mother's arms in Telluride. Mom's own mother had a stroke one morning while living in the Chapter House in Colorado Springs.
"Yes, Telluride is at 10,000 feet," said someone. "A high altitude."
Someone else murmured appropriate regret at this sad story.
"Does anyone want to make a motion?" Louise continued, as if no one had spoken. "She already paid dues to the other chapter."
And business continued, including the business of making her a member. Thank goodness for their kindness and good sense.
I decided I had made the right decision. If I were sitting next to her in the business meeting, I could hush up any outbursts.
"Should she pay dues to Chapter R too?" asked Louise. "What do the rules say?"
"She can well pay it," said Mom.
"But you may not have to," said Louise, "since you already paid dues to your chapter in Colorado."
"Anne would enjoy it, I'm sure. She's got the money," said Mom.
I wished I were in there to redirect Mom.
They sang "Happy Birthday, dear Evelyn" and to one other member. I told them we would not attend the first meeting in March because I will be out of town.
This morning Mom had insisted on bringing a copy of her autobiography, Adventures of a Telluride Native, to the meeting. I had her sign it "To Chapter R, P.E.O." and they were very gracious about accepting it.
Now I overheard someone saying, "Sign the book out to Dorothy B. Everyone can sign it out when they take it."
"And bring the book back to the next meeting," said Dorothy.
~~~
The meeting ended at 1:30 pm, and Mom was hungry. She didn't have a caregiver arriving until 5 pm, so I took her to my house for lunch.
My goal was to get her back to Ocean View by 3 pm and leave, letting her take a nap in her recliner before dinner. Five and a half hours of care would be enough for one day.
But I didn't get her backto her residence until 4 pm because I helped her sign a couple of notes while she was at my house.
Then at 4 pm the LVN reminded me that Mom needed to have her blood drawn today to check her anti-coagulation.
It had started raining, but off we went by wheelchair to the lab a block away.
Thre, to keep her courage up as the phlebotomist kept trying to find a vein, Mom started singing, to the tune of Jesus Loves Me:
Yes, I love you.
Yes, I love you.
Yes, I love you
When the lights are low.
"It's all because of that crime," she explained. [See earlier blog entry.]
We got back to Ocean View at 4:45 pm, and I took her to the bathroom.
"Turn on the water," she said as usual. She likes it running "to inspire me."
But today she suddenly said, "Turn that off! Water is flooding the bathroom!"
"Okay," I said, surprised. I've never heard her say that before.
"Bring me a pan to put it in," she said next.
I didn't answer her. I finished the toileting and helped her walk to dinner with her walker. Her physical coordination was great.
Eight hours, I thought to myself as I drove home.
How did a P.E.O. meeting turn into eight hours?
But one thing was for sure: I knew I had made the right decision in joining P.E.O. Her thinking and talking was worse today. I can't trust her to sit quietly and behave appropriately during the business meetings.
My ears perked up when I heard Mom say, "When my mother was at the Chapter House, I made a move that was the worst thing I could do. I brought her to Telluride, at the high altitude, and she died in my arms."
Oh no! Someone must have said something about a local Chapter House, the senior residences owned by P.E.O. for older members.
Mom had taken those words as an opportunity to try to join the conversation by reciting a set speech she has given many times before.
Besides being inappropriate and an interruption to the business, the story was not even true. It was her grandmother who died in her mother's arms in Telluride. Mom's own mother had a stroke one morning while living in the Chapter House in Colorado Springs.
"Yes, Telluride is at 10,000 feet," said someone. "A high altitude."
Someone else murmured appropriate regret at this sad story.
"Does anyone want to make a motion?" Louise continued, as if no one had spoken. "She already paid dues to the other chapter."
And business continued, including the business of making her a member. Thank goodness for their kindness and good sense.
I decided I had made the right decision. If I were sitting next to her in the business meeting, I could hush up any outbursts.
"Should she pay dues to Chapter R too?" asked Louise. "What do the rules say?"
"She can well pay it," said Mom.
"But you may not have to," said Louise, "since you already paid dues to your chapter in Colorado."
"Anne would enjoy it, I'm sure. She's got the money," said Mom.
I wished I were in there to redirect Mom.
They sang "Happy Birthday, dear Evelyn" and to one other member. I told them we would not attend the first meeting in March because I will be out of town.
This morning Mom had insisted on bringing a copy of her autobiography, Adventures of a Telluride Native, to the meeting. I had her sign it "To Chapter R, P.E.O." and they were very gracious about accepting it.
Now I overheard someone saying, "Sign the book out to Dorothy B. Everyone can sign it out when they take it."
"And bring the book back to the next meeting," said Dorothy.
~~~
The meeting ended at 1:30 pm, and Mom was hungry. She didn't have a caregiver arriving until 5 pm, so I took her to my house for lunch.
My goal was to get her back to Ocean View by 3 pm and leave, letting her take a nap in her recliner before dinner. Five and a half hours of care would be enough for one day.
But I didn't get her backto her residence until 4 pm because I helped her sign a couple of notes while she was at my house.
Then at 4 pm the LVN reminded me that Mom needed to have her blood drawn today to check her anti-coagulation.
It had started raining, but off we went by wheelchair to the lab a block away.
Thre, to keep her courage up as the phlebotomist kept trying to find a vein, Mom started singing, to the tune of Jesus Loves Me:
Yes, I love you.
Yes, I love you.
Yes, I love you
When the lights are low.
"It's all because of that crime," she explained. [See earlier blog entry.]
We got back to Ocean View at 4:45 pm, and I took her to the bathroom.
"Turn on the water," she said as usual. She likes it running "to inspire me."
But today she suddenly said, "Turn that off! Water is flooding the bathroom!"
"Okay," I said, surprised. I've never heard her say that before.
"Bring me a pan to put it in," she said next.
I didn't answer her. I finished the toileting and helped her walk to dinner with her walker. Her physical coordination was great.
Eight hours, I thought to myself as I drove home.
How did a P.E.O. meeting turn into eight hours?
But one thing was for sure: I knew I had made the right decision in joining P.E.O. Her thinking and talking was worse today. I can't trust her to sit quietly and behave appropriately during the business meetings.
Joining P.E.O.
A week ago I received a formal note from Chapter R with a gold embossed P.E.O. star centered at the top of the small page:
My dear Anne
It is a pleasure to extend to you the invitation of Chapter R State of California to become a member of the P.E.O. Sisterhood.
The Sisterhood is an international organization devoted to charitable projects and to the support and promotion of educational opportunities for women. Close association of members leads to warm and lasting friendships. A member of Chapter R will be in touch with you soon to give you an opportunity to ask questions you may have.
In your written acceptance of this invitation, you are required to affirm your belief in God and to state that you come voluntarily, with a desire to be of service to the Sisterhood.
We look forward to welcoming you to our chapter.
Lovingly,
Louise Taylor
Corresponding Secretary
I debated the pros and cons.
If I joined, I could sit with Mom during the hour or longer business meeting and prevent her from speaking out of turn or otherwise disrupting the meeting.
I know that it used to be a hugely prestigious thing to be invited to join P.E.O. It meant you had made it to the top social group in your community.
But the last thing I need is another organization requiring volunteer work. I am trying to write a book... This would be another distraction from that task.
My lifelong commitments are to Evangelical & Ecumenical Women's Caucus, to NOW, to WomenChurch and the Women's Ordination Conference, to the Religious Coalition for Abortion Rights, the Modern Language Association, the Conference on Christianity & Literature, and other groups.
I am, however, committed to taking Mom to P.E.O. meetings on two mornings per month. Perhaps it would be rude to continue to use this group for Mom's entertainment while sitting outside during the business portion of the meeting and refusing to join.
These women are so kind to admit Mom to their chapter when she is in an advanced stage of dementia. She can't carry on a conversation appropriately or really get to know them in the way she would have ten years ago.
They are all in their mid 70s to 80s... there are no members my age. If I make a commitment to them, I'll have twenty more mothers to take care of--but I would want to stop attending when Mom dies.
A thought crossed my mind: Grandma would want me to join. I banished the thought. There's no point in making a commitment like that for someone who is deceased.
From day to day I decided not to join, then reconsidered it.
What harm could it do?
Answer: it would put your name on a lot more mailing lists and further increase your inability to keep up with your real mail, not to mention your email.
Today I drove Mom to the meeting determined not to join.
But Ellie was so kind to Mom, sitting by her and helping her with the refreshments. Alva Mae was so friendly. Dorothy B. is such a generous, loving, and courageous person, dealing with her husband's LBD and inviting us to attend this chapter of P.E.O.
When the president, Louise Taylor, asked me if I would be joining, I explained "I would not want to join and then just leave when my mother is no longer able to attend."
"Oh, that's no problem," she said. "You could just become inactive--take a leave of absence."
"Oh!" I said. "Well, then--I guess I should join for now."
"Oh yes, you should join," she said.
And that was that. I will send a written acceptance of the invitation, affirming my belief in God and my desire to be of service to the Sisterhood.
You know, a sisterhood founded in 1869 predates modern use of the word sisterhood by a hundred years.
That's kind of cool--like becoming friends with Elizabeth Cady Stanton and Susan B. Anthony.
I'm a sucker for sisterhood of any kind.
My dear Anne
It is a pleasure to extend to you the invitation of Chapter R State of California to become a member of the P.E.O. Sisterhood.
The Sisterhood is an international organization devoted to charitable projects and to the support and promotion of educational opportunities for women. Close association of members leads to warm and lasting friendships. A member of Chapter R will be in touch with you soon to give you an opportunity to ask questions you may have.
In your written acceptance of this invitation, you are required to affirm your belief in God and to state that you come voluntarily, with a desire to be of service to the Sisterhood.
We look forward to welcoming you to our chapter.
Lovingly,
Louise Taylor
Corresponding Secretary
I debated the pros and cons.
If I joined, I could sit with Mom during the hour or longer business meeting and prevent her from speaking out of turn or otherwise disrupting the meeting.
I know that it used to be a hugely prestigious thing to be invited to join P.E.O. It meant you had made it to the top social group in your community.
But the last thing I need is another organization requiring volunteer work. I am trying to write a book... This would be another distraction from that task.
My lifelong commitments are to Evangelical & Ecumenical Women's Caucus, to NOW, to WomenChurch and the Women's Ordination Conference, to the Religious Coalition for Abortion Rights, the Modern Language Association, the Conference on Christianity & Literature, and other groups.
I am, however, committed to taking Mom to P.E.O. meetings on two mornings per month. Perhaps it would be rude to continue to use this group for Mom's entertainment while sitting outside during the business portion of the meeting and refusing to join.
These women are so kind to admit Mom to their chapter when she is in an advanced stage of dementia. She can't carry on a conversation appropriately or really get to know them in the way she would have ten years ago.
They are all in their mid 70s to 80s... there are no members my age. If I make a commitment to them, I'll have twenty more mothers to take care of--but I would want to stop attending when Mom dies.
A thought crossed my mind: Grandma would want me to join. I banished the thought. There's no point in making a commitment like that for someone who is deceased.
From day to day I decided not to join, then reconsidered it.
What harm could it do?
Answer: it would put your name on a lot more mailing lists and further increase your inability to keep up with your real mail, not to mention your email.
Today I drove Mom to the meeting determined not to join.
But Ellie was so kind to Mom, sitting by her and helping her with the refreshments. Alva Mae was so friendly. Dorothy B. is such a generous, loving, and courageous person, dealing with her husband's LBD and inviting us to attend this chapter of P.E.O.
When the president, Louise Taylor, asked me if I would be joining, I explained "I would not want to join and then just leave when my mother is no longer able to attend."
"Oh, that's no problem," she said. "You could just become inactive--take a leave of absence."
"Oh!" I said. "Well, then--I guess I should join for now."
"Oh yes, you should join," she said.
And that was that. I will send a written acceptance of the invitation, affirming my belief in God and my desire to be of service to the Sisterhood.
You know, a sisterhood founded in 1869 predates modern use of the word sisterhood by a hundred years.
That's kind of cool--like becoming friends with Elizabeth Cady Stanton and Susan B. Anthony.
I'm a sucker for sisterhood of any kind.
Thursday, February 16, 2006
Nose over Toes
"Nose over Toes is coming today," Mom told her caregiver this morning.
She is losing touch with the names of people, including her children.
Sometimes she calls me "Mother," especially if some event involves pain.
A few days ago when she had removed her new lower plate because it was hurting her gum, I said, "Let's just put it in and see what the problem is."
"No, Mother, don't make me do it!" she cried, out of some deep reflexive part of her brain.
Today my sister, Emily, came to visit her in the afternoon. Emily is a registered physical therapist and has worked with Mom on her walking over the last few years, often saying "Nose over toes!"
She brought a box of chocolates and two Valentine balloons tied to a weight to hold them down. Mom was sure that the weight, which looked like two bright red hearts, could be opened to reveal more candy.
There was a "Sweetheart Dance" at Ocean View Assisted Living tonight. At first I had to laugh at the thought of a dance with most of the residents using walkers or in wheelchairs.
"We'll skip this one," I thought.
But then I realized that the event was probably just a Valentine's Day party with live music. Mom might enjoy going, watching, and having some refreshments. I made a reservation for Mom and her evening caregiver, who both enjoyed it, but I didn't go.
~~~
Our brothers Bill in Washington state and Jim in Colorado are blending together in Mom's mind, along with my husband John and her three brothers. She doesn't often use the names of Bill or Jim, and when she does, she might be talking about her brothers.
Names are fading, but gender is still firmly entrenched. She never uses a male relative's name to talk about a female relative (or vice versa).
~~~
[Today was my day off, so today's events are compiled from a call to the caregiver to see how things were going.]
She is losing touch with the names of people, including her children.
Sometimes she calls me "Mother," especially if some event involves pain.
A few days ago when she had removed her new lower plate because it was hurting her gum, I said, "Let's just put it in and see what the problem is."
"No, Mother, don't make me do it!" she cried, out of some deep reflexive part of her brain.
Today my sister, Emily, came to visit her in the afternoon. Emily is a registered physical therapist and has worked with Mom on her walking over the last few years, often saying "Nose over toes!"
She brought a box of chocolates and two Valentine balloons tied to a weight to hold them down. Mom was sure that the weight, which looked like two bright red hearts, could be opened to reveal more candy.
There was a "Sweetheart Dance" at Ocean View Assisted Living tonight. At first I had to laugh at the thought of a dance with most of the residents using walkers or in wheelchairs.
"We'll skip this one," I thought.
But then I realized that the event was probably just a Valentine's Day party with live music. Mom might enjoy going, watching, and having some refreshments. I made a reservation for Mom and her evening caregiver, who both enjoyed it, but I didn't go.
~~~
Our brothers Bill in Washington state and Jim in Colorado are blending together in Mom's mind, along with my husband John and her three brothers. She doesn't often use the names of Bill or Jim, and when she does, she might be talking about her brothers.
Names are fading, but gender is still firmly entrenched. She never uses a male relative's name to talk about a female relative (or vice versa).
~~~
[Today was my day off, so today's events are compiled from a call to the caregiver to see how things were going.]
Wednesday, February 15, 2006
Sadness and Decisions
There's a hush over the Reminiscence Neighborhood when I arrive today at 2:30 pm. A caregiver walks past with a tear-stained face.
"Lulu died an hour ago," another caregiver tells me. "They took her body away on a stretcher."
"Oh, poor darling," I answer. "She was such a sweet person."
My mother and the other residents have been protected from knowing about her death.
Lois G. and her husband Arthur arrived less than a year ago. His room was on another floor of Ocean View Assisted Living; hers was on the floor for Alzheimer's and other forms of dementia, where Mom lives. He was wheel-chair bound but took the elevator up to visit her daily, zipping around the building in his motorized wheelchair. Earlier he had been a state senator in Minnesota. Now he was working on a book and keeping up with the newspapers daily.
She was cheerful and good-natured but completely lost. Her speech did not come out in recognizable words but in babbled syllables--only the intonation sounded right.
She sat at meals eating with her hands and talking cheerfully with others at her table--until her husband died.
This happened a few months ago, the result of a heart attack, I believe.
Lois, known as Lulu, understood that he was gone. She grieved for him.
A day and a half ago a hospice caregiver asked me to help him transfer Lois from the wheelchair to her bed. Her room was near Mom's, and no real staff member was handy. New to the building, he thought I was a PT. (Remind me not to wear jeans, a t-shirt, and a lanyard with keys on it around my neck.)
I helped him and realized that Lois was failing fast. She wasn't talking or alert.
"She can't swallow," he said. "She's on hospice."
So that was why I'd seen two of her daughters hovering around the floor in the last few days. They knew she was dying.
They had made the tough decision about what to do when a loved one whose brain is deteriorating gets to the point that he or she is unable to swallow.
~~~
The choices are intubation--feeding by a tube inserted into the stomach--or the natural consequences of not eating and drinking.
This decision lies ahead for us. My sister, Emily, wants the four of us to talk and decide what to do before the moment of crisis comes.
Should the death be "natural" and come fairly soon after Mom loses the ability to swallow?
Or should her life be lengthened by the use of a feeding tube? A few years ago Mom signed a statement saying she doesn't want extraordinary measures like this, but if we asked her now, she might want to do anything necessary to keep living.
Emily points out that once you insert a feeding tube, you may later be faced with the decision of whether to remove it, after the patient's health has declined. It may be easier not to insert it.
Another possibility is that the person who was dementia and a feeding tube might fiddle with it and try to pull it out.
~~~
"What a hard job you have," I always tell Marnie, one of my favorite caregivers. "It's not like caring for babies or children. You grow to love the residents, and then they die."
"Yes," she says, today with tears in her eyes.
It's a calling for the saints, the Mother Teresas of this world--to care for elderly people afflicted with dementia, trying to keep them happy, safe, and comfortable in their last months and years.
"Lulu died an hour ago," another caregiver tells me. "They took her body away on a stretcher."
"Oh, poor darling," I answer. "She was such a sweet person."
My mother and the other residents have been protected from knowing about her death.
Lois G. and her husband Arthur arrived less than a year ago. His room was on another floor of Ocean View Assisted Living; hers was on the floor for Alzheimer's and other forms of dementia, where Mom lives. He was wheel-chair bound but took the elevator up to visit her daily, zipping around the building in his motorized wheelchair. Earlier he had been a state senator in Minnesota. Now he was working on a book and keeping up with the newspapers daily.
She was cheerful and good-natured but completely lost. Her speech did not come out in recognizable words but in babbled syllables--only the intonation sounded right.
She sat at meals eating with her hands and talking cheerfully with others at her table--until her husband died.
This happened a few months ago, the result of a heart attack, I believe.
Lois, known as Lulu, understood that he was gone. She grieved for him.
A day and a half ago a hospice caregiver asked me to help him transfer Lois from the wheelchair to her bed. Her room was near Mom's, and no real staff member was handy. New to the building, he thought I was a PT. (Remind me not to wear jeans, a t-shirt, and a lanyard with keys on it around my neck.)
I helped him and realized that Lois was failing fast. She wasn't talking or alert.
"She can't swallow," he said. "She's on hospice."
So that was why I'd seen two of her daughters hovering around the floor in the last few days. They knew she was dying.
They had made the tough decision about what to do when a loved one whose brain is deteriorating gets to the point that he or she is unable to swallow.
~~~
The choices are intubation--feeding by a tube inserted into the stomach--or the natural consequences of not eating and drinking.
This decision lies ahead for us. My sister, Emily, wants the four of us to talk and decide what to do before the moment of crisis comes.
Should the death be "natural" and come fairly soon after Mom loses the ability to swallow?
Or should her life be lengthened by the use of a feeding tube? A few years ago Mom signed a statement saying she doesn't want extraordinary measures like this, but if we asked her now, she might want to do anything necessary to keep living.
Emily points out that once you insert a feeding tube, you may later be faced with the decision of whether to remove it, after the patient's health has declined. It may be easier not to insert it.
Another possibility is that the person who was dementia and a feeding tube might fiddle with it and try to pull it out.
~~~
"What a hard job you have," I always tell Marnie, one of my favorite caregivers. "It's not like caring for babies or children. You grow to love the residents, and then they die."
"Yes," she says, today with tears in her eyes.
It's a calling for the saints, the Mother Teresas of this world--to care for elderly people afflicted with dementia, trying to keep them happy, safe, and comfortable in their last months and years.
Genetic Risk or Not?
Most reports say that children of LBD patients do not have a clear genetic risk for the disease.
But the children of Alzheimer's patients do have a risk factor.
"Q & A: Late-onset Alzheimer's" in USA Today, 2/14/06, reports that a study of twins shows a definite genetic risk for this illness.
"...genetic factors accounted for 58% to 79% of the risk of developing late-onset Alzheimer's."
Factors such as lifestyle and other diseases made up the rest of the risk.
"According to the Alzheimer's Association, the risk is two or three times higher than for someone who does not have a family history of the disease." http://www.alz.org
Dr. Margaret Gatz of the University of Southern California is interviewed by the USA Today reporter, following a study published in February in Archives of General Psychiatry.
~~~
In Time Magazine's special issue "The Year in Medicine from A to Z" (Dec. 5, 2005), a short notice on Alzheimer's lists one of the factors that can cause the disease:
"...inflammation caused by lost or loose teeth, and the resulting infection, can quadruple the risk of developing Alzheimer's. Treating those inflammatory episodes could help stave off the disease" p. 63.
Mom replaced the teeth in her upper jaw and four teeth in her lower jaw when she was in her early forties. I wonder if there was infection present and whether it affected her brain.
But the children of Alzheimer's patients do have a risk factor.
"Q & A: Late-onset Alzheimer's" in USA Today, 2/14/06, reports that a study of twins shows a definite genetic risk for this illness.
"...genetic factors accounted for 58% to 79% of the risk of developing late-onset Alzheimer's."
Factors such as lifestyle and other diseases made up the rest of the risk.
"According to the Alzheimer's Association, the risk is two or three times higher than for someone who does not have a family history of the disease." http://www.alz.org
Dr. Margaret Gatz of the University of Southern California is interviewed by the USA Today reporter, following a study published in February in Archives of General Psychiatry.
~~~
In Time Magazine's special issue "The Year in Medicine from A to Z" (Dec. 5, 2005), a short notice on Alzheimer's lists one of the factors that can cause the disease:
"...inflammation caused by lost or loose teeth, and the resulting infection, can quadruple the risk of developing Alzheimer's. Treating those inflammatory episodes could help stave off the disease" p. 63.
Mom replaced the teeth in her upper jaw and four teeth in her lower jaw when she was in her early forties. I wonder if there was infection present and whether it affected her brain.
Tuesday, February 14, 2006
Mystery Solved
The noises on Sunday night that Mom reported with agitation on Monday afternoon were real, but they were not her Posey alarm.
I went to Ocean View last night at 11 pm to find out what was happening, and it turned out to be her Motorola walkie-talkie.
First I checked on her and all was well, so I talked with the two caregivers on duty and reviewed various events in her care at night in the last ten days.
"Did anything happen last night? Is there anything written in the log book about her?" I asked.
"Sometimes there are things that I don't want to write down, that I need to discuss with you personally," Rose began.
I didn't get it until she said, "Masturbation."
After several months free of that problem, the behavior has turned up again in the last week, as Jona mentioned to me a few days ago. So Rose and I discussed it and the Posey alarm, and I went to check on Mom one last time before going back home.
When I walked into the room, the walkie-talkie on her bedside table was beeping and emitting short bursts of static, followed by a man's voice speaking.
So that's what the noise was. No wonder she was exasperated and hadn't been able to sleep last night, though she was sleeping deeply at this point.
Someone else was using the same radio frequency, Channel 1. It wasn't anyone on her floor of Ocean View, so I figured it could be anyone in the adjoining buildings.
It took me a while to find the instructions and figure out how to change the channel. I tried channel 3, and it seemed to be free of any other conversations, for the moment.
I gave a Valentine's bag of Hershey's kisses to the caregivers and went home, relieved that I had been able to find the problem and maybe even solve it.
I went to Ocean View last night at 11 pm to find out what was happening, and it turned out to be her Motorola walkie-talkie.
First I checked on her and all was well, so I talked with the two caregivers on duty and reviewed various events in her care at night in the last ten days.
"Did anything happen last night? Is there anything written in the log book about her?" I asked.
"Sometimes there are things that I don't want to write down, that I need to discuss with you personally," Rose began.
I didn't get it until she said, "Masturbation."
After several months free of that problem, the behavior has turned up again in the last week, as Jona mentioned to me a few days ago. So Rose and I discussed it and the Posey alarm, and I went to check on Mom one last time before going back home.
When I walked into the room, the walkie-talkie on her bedside table was beeping and emitting short bursts of static, followed by a man's voice speaking.
So that's what the noise was. No wonder she was exasperated and hadn't been able to sleep last night, though she was sleeping deeply at this point.
Someone else was using the same radio frequency, Channel 1. It wasn't anyone on her floor of Ocean View, so I figured it could be anyone in the adjoining buildings.
It took me a while to find the instructions and figure out how to change the channel. I tried channel 3, and it seemed to be free of any other conversations, for the moment.
I gave a Valentine's bag of Hershey's kisses to the caregivers and went home, relieved that I had been able to find the problem and maybe even solve it.
Monday, February 13, 2006
Drugs and Dementia
The Health section in today's Los Angeles Times (2/13/06) features a helpful article, "Turmoil in life's final chapter," about the use of drugs in treating dementia-related disorders.
You can access it at http://www.latimes.com/features/health/la-he-geriatric13feb13,1,4337121.story?coll=la-headlines-health.
"It's not the grown child's name forgotten or the pill not taken or the suddenly lost sense of place that drives the elderly from homes to institutions, but the unmanageable aggression, the uncontrolled paranoia, the inappropriate sexual behavior that ultimately afflict 90% of those who suffer from dementia," the article by Marianne Szegedy-Mazak begins.
A sampling of statistics, which she takes from the Alzheimer's Association, www.alz.org:
Dementia "affects one person in 20 over age 65 and one person in five over age 65."
Alzheimer's disease "accounts for 55% of all cases of dementia."
(Lewy Body Disease is not mentioned, but it has been estimated as the second leading cause of dementia.)
Seniors make up 13% of the population and account for 34% of all presciptions dispensed, according to Families USA, a consumer health organization.
The article discusses older antipsychotic medicines and their sometimes-serious side effects, contrasting them with the newer "atypical" antipsychotics.
In a side bar, the writer lists non-drug means of preventing or calming agitation, such as exercise, a distraction such as snacks or a video, or a soothing repetitive activity such as massage, hair brushing, or manicure.
Drugs that have not worked well with my mother include:
Ambien (zolpidem)--It was addictive and increased her confusion. In 2002 she was taking one at bedtime, one in the middle of the night, and one in the afternoon before we discovered and stopped it.
Restoril (temazepam, a benzodiazepine)--It's a sedative, given to her in May 2004, when she was hospitalized for ten days "for observation" after agitated behavior. It knocked her out. She was unrousable, could hardly sit up. There was no behavior left to observe. My sister and I had it discontinued as soon as we realized what was happening.
Ativan (lorazepam, a benzodiazepine)--This sedative was given to her in June 2005 when she was hospitalized after being without oxygen briefly because of angioedema (swelling) of the throat and tongue. It had her so sedated that she was unrousable and unresponsive--could not open her eyes or move her hand on command. Because of this medication, used partly to rest her brain and prevent seizures, she appeared to have more brain damage from the lack of oxygen than she actually did.
Drugs that seem okay so far:
Mom was also given Dilantin (phenytoin) , an anti-seizure medication, during this hospitalization because she had seizures when her brain was deprived of oxygen. Afterward she was given Keppra (levetiracetam), another anti-seizure medication, for six months. The Keppra made her sleepy, so her dose was reduced; otherwise she tolerated it pretty well.
She took Seroquel (an antipsychotic and antihallucinogen) briefly in June 2004 without any bad effects, as well as Desyrel (trazodone), an antidepressant and SSRI.
She took Celexa (citalopram), an SSRI, for almost two years before it was discontinued when she had the unexplained allergic reaction in June 2005.
Warning:
Mom's neurologist, Dr. Claudia Kawas, said Lewy Body patients should avoid antipsychotics like Haldol and Rispirdal. Dr. K also discontinued the Darvocet (propoxyphene) Mom was taking as a painkiller when Dr. K first saw her in April 2004.
"The patient's apparent intolerance of antipsychotics could also point to Lewy body etiology... Given Mrs. Eggebroten's intolerance of neuroleptics, it might also be expected that she would have difficulty tolerating seizure medications as well" wrote Dr. K (1/5/05).
She suggested using tricyclic antidepressants (TCAs) because they suppress dreams as well as lifting depression.
Current medications:
Mom now takes Remeron (mirtazapine), a tetracyclic antidepressant; she also takes Exelon to slow the deterioration of her brain. She has also taken Namenda, similar to Exelon, in the past.
Currently her health is well stabilized by her various medications, which include Coumadin and others for ills unrelated to her brain.
You can access it at http://www.latimes.com/features/health/la-he-geriatric13feb13,1,4337121.story?coll=la-headlines-health.
"It's not the grown child's name forgotten or the pill not taken or the suddenly lost sense of place that drives the elderly from homes to institutions, but the unmanageable aggression, the uncontrolled paranoia, the inappropriate sexual behavior that ultimately afflict 90% of those who suffer from dementia," the article by Marianne Szegedy-Mazak begins.
A sampling of statistics, which she takes from the Alzheimer's Association, www.alz.org:
Dementia "affects one person in 20 over age 65 and one person in five over age 65."
Alzheimer's disease "accounts for 55% of all cases of dementia."
(Lewy Body Disease is not mentioned, but it has been estimated as the second leading cause of dementia.)
Seniors make up 13% of the population and account for 34% of all presciptions dispensed, according to Families USA, a consumer health organization.
The article discusses older antipsychotic medicines and their sometimes-serious side effects, contrasting them with the newer "atypical" antipsychotics.
In a side bar, the writer lists non-drug means of preventing or calming agitation, such as exercise, a distraction such as snacks or a video, or a soothing repetitive activity such as massage, hair brushing, or manicure.
Drugs that have not worked well with my mother include:
Ambien (zolpidem)--It was addictive and increased her confusion. In 2002 she was taking one at bedtime, one in the middle of the night, and one in the afternoon before we discovered and stopped it.
Restoril (temazepam, a benzodiazepine)--It's a sedative, given to her in May 2004, when she was hospitalized for ten days "for observation" after agitated behavior. It knocked her out. She was unrousable, could hardly sit up. There was no behavior left to observe. My sister and I had it discontinued as soon as we realized what was happening.
Ativan (lorazepam, a benzodiazepine)--This sedative was given to her in June 2005 when she was hospitalized after being without oxygen briefly because of angioedema (swelling) of the throat and tongue. It had her so sedated that she was unrousable and unresponsive--could not open her eyes or move her hand on command. Because of this medication, used partly to rest her brain and prevent seizures, she appeared to have more brain damage from the lack of oxygen than she actually did.
Drugs that seem okay so far:
Mom was also given Dilantin (phenytoin) , an anti-seizure medication, during this hospitalization because she had seizures when her brain was deprived of oxygen. Afterward she was given Keppra (levetiracetam), another anti-seizure medication, for six months. The Keppra made her sleepy, so her dose was reduced; otherwise she tolerated it pretty well.
She took Seroquel (an antipsychotic and antihallucinogen) briefly in June 2004 without any bad effects, as well as Desyrel (trazodone), an antidepressant and SSRI.
She took Celexa (citalopram), an SSRI, for almost two years before it was discontinued when she had the unexplained allergic reaction in June 2005.
Warning:
Mom's neurologist, Dr. Claudia Kawas, said Lewy Body patients should avoid antipsychotics like Haldol and Rispirdal. Dr. K also discontinued the Darvocet (propoxyphene) Mom was taking as a painkiller when Dr. K first saw her in April 2004.
"The patient's apparent intolerance of antipsychotics could also point to Lewy body etiology... Given Mrs. Eggebroten's intolerance of neuroleptics, it might also be expected that she would have difficulty tolerating seizure medications as well" wrote Dr. K (1/5/05).
She suggested using tricyclic antidepressants (TCAs) because they suppress dreams as well as lifting depression.
Current medications:
Mom now takes Remeron (mirtazapine), a tetracyclic antidepressant; she also takes Exelon to slow the deterioration of her brain. She has also taken Namenda, similar to Exelon, in the past.
Currently her health is well stabilized by her various medications, which include Coumadin and others for ills unrelated to her brain.
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