Tuesday, January 31, 2006

The High Cost of Aging

Which will give out first, Mom's health or her assets?
Financial matters are hard to talk about when caring for an elderly parent. Living arrangements, care, and medications are more commonly discussed.
Leave it to the Wall Street Journal to tackle the financial issues head on. On January 23, 2006, the WSJ printed a fascinating portrait of Milo Tedstrom, who lived 104 years, and of the various housing and financial arrangements that made his later years happy and comfortable. Order the article by Kelly Greene for $4.95 at http://online.wsj.com/public/page/3_0466.html?KEYWORDS=Learning+from+a+Long+Life&x=3&y=6.
Greene reports, "In the end, Dr. Tedstrom's body gave out before his assets did."
That's the goal my siblings and I hope for--to keep Mom in a cheerful, comfortable residence all the way to the end, even if it drains her resources to nearly zero.
The big question is: what if her assets reach zero a year or two before she dies?
Would we pay her expenses ourselves, or would we move her to a residence whose cost matches her monthly income?
In any case, we would have to eliminate the personal caregivers who chat with her, give her daily baths, and tend to her needs, so she doesn't have to wait her turn as a staff of 4-5 care for the 28 residents on her floor.
Currently we keep caregivers with her 6 am to 2 pm and 2 pm to 10 pm for $14 per hour at a weekly cost of $1,456 or about $6,000 per month, plus the Ocean View Assisted Living fee of about $6800 per month.
Her monthly income is $4862, so we are draining her resources at a rapid rate.
When my siblings and I sold her house in 2002 and moved her into an independent living residence, I thought she had a good nest egg that would enable her to live comfortably and give each of her children a six-figure inheritance.
But my brother Bill, a doctor, predicted that she would run right through the whole amount in medical and living expenses before she died. He had seen it happen before to countless patients, many of them paying huge medical expenses in the final weeks of life.
I didn't believe him then, but now I am convinced he was right.
The ideal would be for her to live off her monthly income and not touch her CDs, but there are only two ways to do that:
1) Place her in a nursing home, without personal caregivers.
2) Move her to live with one of her children, with 10-12 hours of assistance per day from caregivers.
The first option would probably be miserable for her at this point. Skilled nursing facililities are fairly grim and hospital-like compared to the nicer assisted living residences.
The second option would require me or one of my siblings to be her caregiver for the remaining 10-12 hours, and it would change the family life of whichever one of us took on the job.
We'd rather see her use up her financial resources than go to either of these options.
One thing we could do, however, is try to wean her off the caregivers she has in addition to her Ocean View Assisted Living expense.
If we succeed in doing that, we would save $6,000 per month. She wouldn't like it, but we could try. She would have a bath only four times per week, and she would have to wait her turn to get dressed in the morning, be taken to meals, and get her bath in the evening.
The worst part would be that she would either have to sit in the living room/recreation area all day with the other residents, or she would have to sit alone in her room in front of her television.
She doesn't like either option, but as she sleeps more and becomes less likely to try to get out of her chair when alone, it could be done.
Unless she has another health crisis that lands her in a nursing home with no debate.
Stay tuned for the next chapter of the story.

Monday, January 30, 2006

Diplomacy in Demitting

Dear Evelyn,
Thank you for your note wishing to join Chapter R. We read your request at our January meeting and we will vote March 6. For now you are still a dues paying member of Chapter DV.
And no! we will never lose touch with you. You belong.
Love in P.E.O.,
Beth Hayward, Pres.

Sunday, January 29, 2006

The Bulletin Board in Heaven

These days Mom doesn't think much about her husband of 47 years, Kermit.
When his name comes up, however, Mom has confidence that she will see him again in heaven.
She sometimes wonders how he will find her when she is newly arrived to the heavenly scene, but then she resolves the question.
"I'm sure they have a board there," she says. "He's watching the board to see who's new."

Wednesday, January 25, 2006

A Goofy Day

Mom had three appointments today, quite a big day for someone with Lewy Body Dementia.

First was the dental appointment at 10 am to have a new partial lower plate made. (See blog entries for last December when she lost the plate by placing it under her pillow sometime in the night.) Yes, all efforts to locate it had failed.
Both the dentist and I were apprehensive about making a new plate. Would she be able to tolerate holding cement in her mouth for two minutes to make an impression of her gums? And then again to make an impression of the teeth above? After all, last spring she had swallowed a tooth while sitting in the dental chair.
The whole event was by definition embarrassing to me, but I survived. She began by telling him that she didn't really want a new lower partial plate. "I'm doing fine without it." But he knew we had made the decision to do it, so he pressed on. She did pretty well with the sticky compounds in her mouth, cooperating but complaining all the way.
The worst moment was when she asked Dr. Feder if he was Jewish.
"Yes," he answered.
"Oh well, you're a nice man," she said, forgiving him.
After we returned to the waiting room and were paying the bill (a mere $1755), she was talking again, out of his hearing, about Jewish people and hooked noses and how she would never have married a man with a hooked nose etc. Absolutely mortifying, but I think no one but me heard her. Note: I never heard her say anything like this during the first 80 years of her life.

Second was her appointment for physical therapy for the first time since her mild sprain of the left ankle in mid-December. Emily came to relieve me shortly after 2 pm, so we were both present for the beginning of this appointment.
The worst moment was when the therapist was trying to get Mom to push herself to standing from her wheelchair to a walker. She was taking Mom through the various steps involved--scooting her seat to the edge of the chair, pulling her feet under her, putting her hands on the arms of the wheelchair, and next--.
"What do you do with your nose?" Suzanne asked, trying to help Mom remember the next step, putting her "nose over toes."
"You clean it if it's not already clean," Mom answered quickly and contemptuously, moving her hand up to pick her nose. She knew the answer to that one.
Emily and I broke into hysterical, embarrassed laughter. I went home.

Third was her trip to the lab to have her blood tested for its clotting time (because she is on Coumadin). Fortunately, I wasn't around for this one. For full details, check the comment from Emily soon to appear on this blog entry.
Anyway, Mom was chatty and on edge. If she had had a diagnosis of manic-depressive disorder, I would have classed her as manic all day long.
Somehow, as she was finishing up after having her blood drawn, she was talking about an interesting event (if it happened) from her childhood when her grandmother had chickens and was trying to increase egg production, or perhaps from living on her uncle's farm during a couple of summers.
"We would take the males and stimulate them and then place them on the females," Mom was saying. But she didn't say the word chickens anywhere near this sentence.
Emily recognized what was coming, grabbed the wheelchair, and pushed Mom out the door just as she was getting to this point, leaving the phlebotomist standing with shocked look on her face.

Just another goofy day in the life of someone with Lewy Body Dementia.

Monday, January 23, 2006

Burn Out

They say the first rule of caregiving is to take care of yourself, so you don't ruin your own health and sanity. But random events this week made that difficult.
On Thursday and Friday I was doing caregiving because Jona's grandmother died.
Then Saturday night was an emergency--Mom's bad dreams and hallucinations.
Sunday was my usual day to be the caregiver. We drove to Claremont for WomenChurch. Mom was fairly lucid, speaking only when it was her turn as we went around the circle, and being both brief and appropriate in her comments. People were reporting on their Christmas activities and events since November; Mom reported having gone to my house for Christmas.
On Sunday 2 pm to 10 pm the usual caregiver, Racquel, could not work. I had to cover that shift. I left Mom with Ocean View from 4 pm to 6:30, but then I had to return to shower her, sit with her until her meds at 9 pm, and put her to bed.
This all went fairly well, with the usual ups and downs.
Mom was delivering her usual string of ultimatums about her care--put the night socks on this way, those nightgowns are all ragged, I need to go buy some new clothes--and she complained when I told her I had to leave at 9 pm.
All of a sudden it hit me: I could just walk out of this room and never come back.
I knew I could do it. I didn't say anything to Mom, except that I was more impatient in helping her into bed. She complained about having to wear the foot guards to prevent inversion, and I cut her off.
I was angry, completely burned out, but nothing really happened.
I couldn't figure out how to set up the Motorola walkie-talkies so one would be constantly transmitting the room's sounds to the other, which I would give to a caregiver, so I didn't leave until almost 10 pm.
Eventually I got home, thinking with relief that Jona would report for work at 6 am, and that Connie would be doing the shower and bedtime work tomorrow night.
The next day I drove to Ojai for a friend's memorial Mass. I turned my cell phone to silent and took the whole day to drive and reflect and enjoy the view of coastal mountains and sand dunes.
But at 5 pm I checked my cell phone and listened to a new message:
Connie would not be coming to work this evening. She had her period with menstrual cramps.
I was on again. There was no time to try to get anyone else.

Sunday, January 22, 2006

Oh Deer!

"Anne! There's a deer outside! I've got to let him in and give him some water."
I roll out of the futon where I have been sleeping and answer her. "Hi Mom. Good morning. It's 7:30."
"Right now! I have to go out there."
"Okay, let's get you out of bed."
I don't have the energy to argue with her, not after trying to talk her out of the murder scenario last night. I push the button on the electric bed until it lifts her torso up nearly to a sitting position. I transfer her 130 pounds from the bed to the wheelchair and push her into the hall outside her room, where I pause, waiting for her to realize there is no deer.
"What are you waiting for? Take me to the elevator!" she commands.
"Mom, you're not dressed."
"Anne! Take me right now."
"Okay, but we'll have to get dressed first."
"Grab any clothes you can find. Maybe somebody else will get to him first. I've got to get him some water and get him in a chair."
"A deer in a chair?"
"Well, maybe I'll have to pick him up."
Fifteen minutes later we are outside on the street in front of Ocean View Assisted Living. It is a quiet, cool morning, sunny.
"He's not here," she says with surprise. "Somebody else got here first. He was by the flowers, eating flowers. Maybe they put him in assisted living."
"Who? The deer?"
"Yes." She sits in her wheelchair looking around at the empty sidewalk bordered by flowers on one side, by grass on the other. Then she announces, "Somebody else got to him first. You took too much time getting me dressed."
My mood goes down a notch. No gratitude here, just blame. I start wheeling her back into the building, past the dining room for the first and second floor residents, who do not have dementia.
"Maybe he's in here," she comments.
Then we are back in her bedroom, putting on her earrings and necklace, combing her hair.
"You want some water?" she says suddenly.
"What?" I ask. Then I realize she is not speaking to me.
We're both silent for a few moments, sorting through reality as we know it.
"What was that little animal--did I say it was a fox?" she asks. "Somebody else got to him before I did. You took too much time getting me dressed."
I take her to the dining room for breakfast and leave her there, gratefully escaping back to her room to shower and dress.
After breakfast we are getting ready to leave for church.
"I think if we fool around long enough he'll show up," she comments.
I don't answer, but as we leave the building, I explain to the morning caregivers why I spent the night and why we toured the front sidewalk this morning. "She had these dreams," I begin. I don't try to keep her from hearing me.
A few hours later, in the afternoon, she comments, "You don't really believe there was a deer, do you."
"No," I say.
"You think I was dreaming."
"Yes," I say.
We are both silent as she reflects on the real and the unreal.
I recall the pamphlets and websites: "Dementia with Lewy Bodies... Visual hallucinations may be one of the first symptoms noted, and patients may suffer from other psychiatric disturbances such as delusions and depression." (www.ninds.nih.gov/disorders)

Murder, She Dreamed

At 11:45 pm my cell phone rings, but I've been asleep for fifteen minutes and fumble for the house phone beside my bed before I realize the noise is my cell, also by my bed.
"Hello?" I ask.
"Hi, this is Kim. Your mother is frightened. She says someone is going to murder her. Could you speak with her?"
I thank Kim, one of the two night caregivers at Ocean View, and agree to talk with my mother.
"Hi, Mom. How are you?" This is how I open all conversations with her.
"I'm scared to death! There's a note under my bed that says they're going to come back and murder me. I have to escape."
"Mom, there is no note under your bed."
"Yes, there is! You just ask Emily. I told her about it, and she knows."
"No one is going to murder you."
"Yes, they are--because of what I told Emily. I was spread-eagled on the bed and I screamed and my mother came and she divorced him, but they're going to come back and murder me."
"Okay, let me talk to Kim."
"Who's Kim?"
"The nice lady who is with you."
"Kim, where is my mother? Did you have to bring her out to the dining room?"
"Yes, she's out here with us but she's very frightened. She's shaking."
"Okay--I'll be right over."
Mom has gone over two weeks now without a personal caregiver at night, and the two Ocean View people in charge of the whole floor of 28 residents have never yet called me at night. They have just dealt with whatever problems my mother has had in the wee hours of the morning, so I know they wouldn't call for a minor event. I want them to know I will come when needed. It's just ten minutes away.
Because I was already planning to be there at 6 am (to provide care whenever she wakes up, dress and take her to breakfast, and take her to church), I decide to spend the night. Sunday is always my day to be the 6 am to 2 pm caregiver.
As I'm pulling sweatpants over my pajamas, I explain to John. He doesn't complain (at least we went to see a film, New World, this evening between my trip to her room at 6 pm and this call now).
At Ocean View, I find Mom sitting in her wheelchair in the dining room quietly sipping tea. One of her dolls is propped before her on the table. Kim and Toni are talking with her.
"Aren't you spoiled, sitting here sipping tea at midnight!" I comment.
She laughs. She knows it's true.
"She was upset," explains Kim. "She sat up in bed, and when I arrived, she was getting out of there."
"Did the Posey alarm go off?" I ask.
"Yes, " says Kim. At their recommendation, I had bought an alarm to place under Mom's mattress pad. When she sits up, a loud beep begins, transmitted to the caregivers by the Motorola walkie-talkie.
"She was shaking, just sitting here. She was so scared."
"Mom, you were just dreaming," I tell her. "You have an illness, Lewy Body Disease, that makes your dreams seem very real to you."
She thinks about that. She has heard me say it before.
"Okay, let's go back to the room," I conclude. "Thank you so much."
In a quieter voice I tell Kim and Toni, "I'm going to spend the night because I have to be here at 6 am anyway."
Back in her room, I start to take her to the toilet and discover that she's wearing a loose bathrobe but no nightgown.
"Why are you just in a bathrobe?" I ask.
"I took off my nightgown," she says. "I was going to catch a cab to get to your house."
"You want to keep your clothes on if you're doing that," I argue, but I know it's pointless to do so.
After toileting, Mom gives orders on the nightgown. "No, not that one. It's too short. They're all getting ragged, but you don't take me shopping."
It's almost 1 am. I find and remove one that is ragged, but my patience is wearing thin. I get the gown on her.
"Okay, let's go to bed," I say, pushing her wheelchair to the bed.
"No--there's a note under the bed!" she cries out.
"There's nothing under the bed!" I yell.
"Yes, there is--you just look! Do you see that?"
"There's a light blinking--it's your surge protector," I sigh wearily.
Somehow in another ten minutes she is in bed, surrounded by pillows and the safety bar, with a soothing CD on her CD player.
I don't tell her I am spending the night. I don't want her to think I will run over and spend the night every time she imagines something.
I get the futon out and settle down to sleep.
She sleeps soundly until 7:30 am. I am grateful.

Saturday, January 21, 2006

Another Death

"Jona won't be coming in tomorrow or Saturday," reported Ana from Caregivers Services, the agency that provides personal caregivers for my mother in addition to the staff at Ocean View Assisted Living. "Her grandmother died."
Jona is the daytime caregiver for my mother. She's about 28 years old and has showed up at 6 am in my mother's room at Ocean View Assisted Living every day except Sundays for a year and four months. Maybe she has had a week or two off during all that time--the week when my mother was in the hospital, and a few other 3- or 4-day weekends.
First she worked 6 am to 2 pm. Then last June when Mom nearly died, I asked Jona to work 6 am to 6 pm, which she did for six months. In December I cut her hours so she could leave at 4 pm, and since January 1 she has been leaving at 2 pm--because I need to reduce Mom's expenses and because Mom now seems to be familiar enough with the routine that she can be left with the Ocean View staff for longer periods, without a private attention.
Nevertheless, I feel guilty about how many hours Jona works. After attending college in computer science in the Philippines, Jona now sits cooped up with my mother in a small room or takes her out on errands. Until she gets full legal residency status, she can't afford college in the US.
This death creates a new irony for Jona: after giving months and months of loving care to my mother, she will never be giving that kind of care to her own grandmother. Instead of years of dementia, her grandmother suffered a stroke, was hospitalized, and died three days later.
Thinking of these things, I was determined that Jona would get enough time off to be with her family and cope with this loss.
Usually Ana can find a replacement when Jona or Connie, the night caregiver, needs a night off. But Raquel wasn't available this time, and I was not willing to train a new person. (My goal is to continue to reduce the private caregiving hours, not begin relationships with new people.)
In a nutshell, I was facing Thursday and Saturday with myself and Sunrise as the only caregivers for the 6 am to 2 pm shift. Still I assured Jona that she didn't need to show up Friday; she should be with her family, flying in from around the country and from the Philippines.
On Thursday evening I learned that Jona would indeed be taking Friday off.
I ended up going in at 6 am on Thursday and Friday. On Thursday I took desk work with me to work on and stayed until 2 pm, but on Friday I left by 10 am. Connie, the 2 pm to 10 pm caregiver, volunteered to come back at 6 am Saturday and stay until 10 pm, a double shift. I came in late Saturday afternoon and gave her a couple hours of break.
By Saturday night I was grateful for a few hours to go out to see a film.
Conclusion: I'm glad to be saving money, but I don't want to be doing so much care giving.
I need to transition Mom to more and more time with the Ocean View staff, even though the ratio of 4-5 people for 28 residents doesn't allow for the TLC and personal conversation Mom is used to.
I started the personal caregivers to keep her from falling as she recuperated from a broken hip. Because I had heard that 50% of people in their eighties who break a hip die within a year, my goal was to keep her comfortable for about a year.
Now I realize that the other 50% may live five or ten years--and need to conserve their financial resources to last that long.

Saturday, January 14, 2006

Death Envy

Today my friend Lee reported to me that her mother had died. She will be flying back to Virginia with her children for the memorial service.
"What happened?" I asked with sympathy. Her mother been in assisted living and was about the same age as my mother but did not have dementia.
"It was sudden--congestive heart failure," she reported.
"When did you last see her?" I asked.
"Three and a half years ago," she admitted. Lee is a single mother, intermittently employed, raising two children in 7th and 9th grades. There is just no money for flights from California to Virginia.
But still it hit me: a pang of envy.
Lee, an only child, did not have to do years of elder care. Her mother did not want to move to California when she got to the age where she needed help with the activities of daily living, ADLs as they are called. So Lee had located assisted living for her in Virginia and kept in touch by phone. Lee's cousin did things that needed to be done locally.
I expressed sympathy for her loss, but what I was really feeling was more complicated than sympathy.
"Am I crazy?" I was thinking. "Why am I putting two or more hours a day into care of my mother? She's in assisted living--why don't I just leave her to the staff at Ocean View? There must be something wrong with me--codependency or whatever. I've got to change something. And why can some people escape elder care completely? Lee's mother just up and dies, after several years of fairly comfortable living in a senior residence, no dementia. How many more years will my mother live? How long will I continue to lose a fair chunk of my time, at an age when the number of productive years I have left is shrinking rapidly?"
After these thoughts, of course, I felt guilt.

Friday, January 13, 2006

Nude Man Walking

"It's a full moon," says Kim. "That's why."
It's 11:30 pm, but the Reminiscence Neighborhood is restless.
Julie has been yelling: "Help me! Will anybody come to help me? Anyone at all?"
Kim has gone to her room to calm her down and get her back in bed. She leaves the door wide open to hear when Julie calls again.
I have come to talk with the night shift caregivers, Rose and Kim, because I heard today that my mother was agitated on Tuesday night. I want to hear the full story and assure Rose and Kim that I appreciate their work with her and the other 27 residents on the third floor.
It's Thursday night, nearly Friday. The calendar shows Saturday as the full moon.
Marnie, the lead caregiver of the previous shift, is still here waiting for her husband to pick her up. She is finishing her entries of notable events and health issues on the 2-10 pm shift.
Rose is entertaining me with her story of my mother on Tuesday night at 2 am, when Mom was demanding that she be allowed to get up and be wheeled into the kitchen-dining area.
"People are waiting for me out there," she had insisted. "They are hungry. I need to go feed them." For persons with Lewy Body Dementia, dreams are real. Waking up means carrying on with the activity of the dream.
"They are already fed," Rose had argued. "Would you like a sip of orange juice?"
But Mom was persistent. At last Rose and Ade had helped her out of bed into her wheelchair and taken her to the kitchen.
"Nobody here," Rose had announced on arriving.
"It's dark," Mom had commented with surprise.
"Everybody's asleep," Rose confirmed. But instead of wheeling Mom back to her bedroom, Rose had parked her in front of the television until finally she grew tired of sitting there.
"I want to go back to bed," she had announced.
"Are you sure? You don't want to stay with us?" Rose had asked, cleverly.
But Mom had given up and was ready to go back to bed, if not to sleep. Eventually she went to sleep.
Meanwhile, in the present, Julie yells again. Kim and Rose don't respond at first; after all, they have a guest who is appreciative of their stories.
But all of a sudden Kim takes off down the hall toward Julie's room like a firefighter after an alarm. Apparently she has glanced down the hall and seen a problem.
I turn and look in that direction.
Dr. Lewis, buck naked, is pushing his wheelchair back out of Julie's room, escorted by Kim. [Note: He is a retired physician and member of the Reminiscence Neighborhood, usually addressed as "Dr. Lewis" by the caregivers. I have never seen a practicing doctor visit Ocean View, except for a psychiatrist.]
"Get out of my room!" Julie is yelling. "Get the hell out of here!"
"I just double-diapered him and got his pajamas on him again, fifteen minutes ago," Kim reports. "But here he is."
She disappears to reapply the diapers and pajamas.
"Full moon," comments Rose. She continues to tell me what my mother had told her two nights ago.
"This is Civil War--between whites and blacks," Mom had said. She is white; Rose and Kim are African-American.
"Do you have any issue with blacks?" Rose had asked.
"No, you've been kind," Mom had said. "I love everybody."
Kim returns. All is quiet.
Then within ten minutes Dr. Lewis returns, pushing his wheelchair toward us in the dining area, clad only in his pajama top.
Kim gets up again, wearily, once again to take him back to his room, double-diaper him, and dress him.
I decide to go home and go to bed myself, thanking Rose and Kim.
They have their hands full, and I am a distraction.
I have learned, however, that Mom is not their greatest problem.