Is It Really Lewy Body?

One of the problems when a family member has a "probable diagnosis of Lewy Body Dementia" is the uncertainty. The diagnosis can only be confirmed by an autopsy of the brain after death.
Meanwhile, decisions about care and medications have to be made, as well as long-term financial planning.
Today my sister and I took our mother to a neuropsychologist for her annual or semi-annual check up.
She did very well. On the Mini-Mental, she scored 19, the same as a year ago. On the memory tests, showing her a list of ten words and askng her to recall them five minutes later, she did better than she had last July. Her scores last time were 2, 5, and 2 out of ten, but today they were 3, 5, and 5. After twenty minutes, she recalled one out of ten words last July but four out of ten today.
"It's a wonder!" the doctor and Emily and I said.
On the test of visual/spatial skills, planning, and organization, she did not do as well. For example, she had difficulty when asked to draw the face of a clock. In fact, she pulled up her sleeve to copy her watch until told that doing so would be cheating.
When mentioning one of her granddaughters, she used the name "Stephanie" instead of the correct name, Meridith.
"So is it really Lewy Body?" I asked the doctor. "If she's doing so well and not really declining, maybe she just has dementia caused by TIAs or by her ambulance accident--being in a coma--in 1945. And if she doesn't have an illness with a 5-7 year life expectancy after diagnosis, we need to plan financially. We've been hiring 'round-the-clock caregivers in addition to Ocean View Assisted Living, but if she is going to live ten more years, we need to cut back."
At this point Dr. Claudia Kawas, a neuropsychologist at the University of California, Irvine, explained the tentative nature of all expectations with Lewy Body patients.
"The life expectancy of someone 87 years old is four years," she began. "Dementias shorten the life expectancy in younger people, but there's a wide range of life expectancy in dementias. If you get a dementia when you are older, it doesn't progress as fast as in a younger person."
"So the 5-7 year life expectancy for Lewy Body is really longer in older people?" I asked.
"Yes," she said. "Those figures are just a mean for LBD patients of all ages. And people in their nineties and one hundreds are the fastest growing segment of the population."
"Interesting," I said. "If you didn't get cancer or some other disease earlier in life, you can do pretty well in your nineties."
"Alzheimer's Disease was discovered one hundred years ago," she continued. "I have a paper coming out soon in a centennial commemorative journal. But when Alois Alzheimer first identified these symptoms as a disease, he was describing a patient who was 49 years old. It was believed to be an illness occurring in people 49 to 53 years old. Then it was observed in people in their sixties, seventies, and eighties.
"I'm conducting a study of 1,151 people in the nineties and older age group. Some of them are normal in their behavior, some have Alzheimer's, and some are diagnosed with other kinds of dementia. So far 35 of this group have died, and we have examined their brains.
"In studying the 13 brains of people who had been diagnosed with Alzheimer's or some other form of dementia, we found that 50% had no physical differences in their brain that would explain the dementia. Yet their median score on the Mini Mental test was zero. In the group with no dementia, the median score was 17.
"You mean these people who had been diagnosed as having Alzheimer's or Lewy Body or something else actually did not have these diseases? Their brains looked okay?"
"Yes," she said. "We looked for other differences between the groups to try to explain the difference in scores. The only big difference we could find was self-reported TIAs. So vascular events that don't show up in brain autopsies could be a main cause of dementia.
"In comparing the living subjects, we found another major difference: oxygen levels in the blood. Those with good levels of oxygen do well on the mental tests; those with low oxygen levels do worse."
I asked Dr. Kawas where I could read about her research, and she directed me to reports coming out in the Journal of Menopause and in the American Journal of Longevity.
Then we went back to the specifics of how to manage Mom's illness, whether it turns out to be Lewy Body or caused by TIAs or by some other unknown factor.
Emily and I explained that Mom's main problem right now is vivid dreams or hallucinations at night that cause agitation. She also has extremely sleepy days once or twice a week and agitated days once a month or so. Most of her days are normal with only brief periods of agitation or sleepiness.
"She's doing great," we reported. "All her medications and vitamins seem to be just right. She's been at an equilibrium for several months."
"Excellent," responded Dr. Kawas. "We won't try to medicate her out of the sleepiness or agitation unless we have to. So she's been happy, not depressed? Is she on any anti-depressants?"
"She was on Celexa, but that was discontinued last June when she had her allergic reaction," Emily and I said. "Now she's on Remeron (mirtazapine)."
"We could also consider the older, tricyclic antidepressants,"Dr. Kawas said. "Because they suppress dreams to some extent, which would help with her hallucinations. I see that she had Ativan briefly in May, 2004, and didn't do well with it."
"It was terrible," we said. "She was so sound asleep she could hardly sit up."
"That outcome would be expected with Lewy Body," said Dr. Kawas. "We also won't use any of the antipsychotics if we can help it."
Mom held up pretty well during this two hours plus series of tests and conversations. She panicked at one point and demanded an immediate trip to the restroom, where I changed her Depend, but she did not otherwise use the toilet.
At another point a young intern being trained by Dr. Kawas encouraged Mom to play Bingo at her residence and participate in exercises such as ball tossing.
"Wearing high heels like that and talking like that to me!" Mom fumed after Dr. Rublesky left the room. Mom was wearing sensible shoes but still misses her high heels.
"You are a vision in pink," Dr. Kawas smiled, enjoying the spectacle of this patient, fiery and opinionated in her pearls, earrings, bracelet, and hairdo, with an elegant rose-and-black-patterned rayon blouse and skirt topped by a pink tailored jacket.
After the appointment we left, pushing Mom in her wheelchair, impressed by Dr. Kawas's kindness to Mom and to us.
"She's so popular," said Emily. "The doctors and caregivers all love her."
"Amazing," I answered.
We drove back to Santa Irena, but only after stopping for her reward: one scoop of butter pecan ice cream in a plain cone at Baskin-Robbins.

Political Commentary: State of the Union

Mom and I had an hour's drive in the car today to see a neurologist at UC Irivine. That meant a lot of time for conversation.
Somehow she was telling me that she saw President Bush on television last night.
"Oh, did you listen to the State of the Union speech?" I asked her.
"Yes, it wasn't very good--I mean the country," she commented.
"Oh," I said, amazed that she had been able to make this accurate assessment.
"He's broken the will of the Constitution, and no other president except Reagan did that," she added.
"Yes, he has," I responded, not sure exactly what she meant, but still more amazed at the general accuracy.
She was a Democrat for the first fifty years of her life, then a staunch Republican for the last 37 years.
Where she got this current perspective on Bush and the State of the Union, I don't know. I don't discuss politics with her.

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.

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.

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."

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.

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.

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."
"Okay."
"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.

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.

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.

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.

Christmas Photos

For Christmas Mom had a mini-vacation from Ocean View Assisted Living, spending two days and one night at our house. She enjoyed the Christmas tree, presents, food, and excitement of three granddaughters coming and going.
On Christmas Eve she wanted to open one present, the biggest and most intriguing one.
It turned out to be a portrait of her, drawn by an artist in the Philippines from a photo and beautifully framed, a gift from the caregiving agency.
However, the black and white drawing featured wrinkles and was not flattering.
"This is terrible!" Mom exclaimed. "I don't want it."
Fortunately, she slept well that night, so I got enough sleep too (on a mattress in the same room with her, lest she try to get out of bed in the night).
The next day turned out better, especially with the fun of Christmas dinner.

A Christmas Story

I made the mistake of giving Mom the Madame Alexander Doll catalogue and asking her which doll she would like for Christmas. Most dolls cost $60-$70, so I thought it would be a reasonable gift she would enjoy.
What she wanted, however, was the nativity set of Mary and Joseph with Jesus in the manger, sheep, a cow, and the surrounding stable--$300, not counting the angel doll she wanted to go with the others.
I spent a couple weeks trying to talk her into other dolls, but finally on the day after Thanksgiving I decided to order the nativity set.
"We're sold out on that, ma'am," said the salesperson when I finally courageously called in my order.
But then I felt terrible for postponing the order for so long.
What to do?
I ended up taking Beth and Laurie from her Little Women collection of Madame Alexander dolls and fashioning costumes to make them look like Mary and Joseph, and dressing a tiny baby doll as Jesus. I borrowed the stable roof from a wooden nativity set and found some sheep.
She loved her nativity set. It occupied the table in her room at Ocean View Assisted Living for the whole month of December.

To Demit or Not To Demit

Dear Harriet,

I believe you are membership chair for Chapter DV of P.E.O. in Boulder, Colorado. If not, please pass on this note.

My mother, Evelyn, has attended two meetings of a local P.E.O. chapter here in Santa Monica--Chapter R. She wants to join their group and attend regularly, but she does not want to demit from the Boulder chapter. She says her mother never demitted from the Telluride chapter when she moved to the Chapter House in Colorado Springs.

I told her she has to demit from DV in order to join Chapter R in California.

However, she believes (unrealistically) that she might someday return to live in Boulder.

Could you suggest a way for her to affiliate with Chapter R without losing touch with Chapter DV?

Perhaps she should be demitted without being told she has formally demitted. I'll leave it up to you.

The P.E.O. sisters here in Santa Monica are very kind. We met them through the Presbyterian church.

Sincerely,

Anne Eggebroten

Sick and Tired

All the experts advise caregivers: "Take care of yourself. Don't overdo it. Meet your own needs."
I do that by keeping my mother in an assisted living residence and by hiring a personal assistant for her six days a week, 22 hours a day. On Sunday I care for my mother, and on other days I try to visit her from 4 to 6 pm.
But this week I came down with a virus, about the same time as I finally located a flu shot for myself.
By Sunday morning, I was dragging. Instead of being at Ocean View by 9 am, I was still home eating breakfast, deciding to take Mom to the 11 am church service instead of the 9:30 service.
The phone rang loud and demanding in the quiet house, where John was still sleeping.
"Anne! Where are you? You're not here yet."
I reassured her and promised to be right over, reminding her that I have a cold.
But I felt angry. I know it's foolish to get upset with the behavior of someone who has dementia, but her phone call had pushed some old buttons from twenty or thirty years ago: the time I went on a hike and returned to the trail head to find her sitting in a car, furious, waiting for me. The time Emily drove across the country and did not call daily, only to have Mom report her to the highway patrol as a missing person.
When I got to Ocean View, everything was fine. Mom used a walker to walk from the dining area to her room. Then we went to a supermarket to buy a cake for the church luncheon and arrived at the 11 am service in time for the first Christmas carol.
We attended the TOPS luncheon (Terrific Older Presbyterian Something--Singles? Seniors?), where the entertainment was 45 minutes of Christmas songs.
Luckily Mom declined a bathroom visits, so we were on time to our next event, "Fa La La L.A.," a performance in Los Feliz of the West Coast Singers, the third oldest gay/lesbian mixed voice choir in the nation. All handicapped parking was taken by the time we arrived, but another spot miraculously appeared and I was able to get Mom into her wheelchair, through the will-call line, down the elevator, and into the wheelchair access area of the theatre by 3 pm.
Mom was stunned to be sitting under the noses of a choir of 60 as they sang their opening carol down close to the audience.
We got through the first half just fine, enjoying the rock 'n roll spoofs "Proud Mary Had a Baby" and "Giving Birth Is Hard to Do."
Mom was did well during the intermission and second half, until the closing number when the choir sang and signed "Silent Night," with some in the audience singing along.
On the last verse, however, they signed without singing as a cultural experience.
One voice in the theatre continued to sing until I clamped my hand over her mouth. I didn't try to explain this one to her.
Afterward I managed to get to the crowded bathroom, which was almost wheelchair inaccessible, without Mom knowing and demanding a visit. Her Depends would have to do their job.
I returned and mumbled something about having talked to a friend.
"Oh, you were talking to Grace Eggebroten?" she asked. Grace was her sister-in-law, who died earlier this year at age 96.
I didn't try to correct her. By this time it was 5:30 pm and my only goal was to get her back to Ocean View by 6 pm.
We would have made it, but I stopped at Sav-On to buy Depends and a few other things. I also called John and offered to buy something to make dinner, but he suggested going to Coco's. I accepted with relief.
At 6:15 pm as I loaded her out of the car into her wheelchair, hung the various plastic bags of Depends and Kleenex boxes from the wheelchair handles, and proceeded to the elevator of the parking garage, I was beat.
After the second elevator, we got to the third floor, where her evening caregiver was waiting.
"I looked for her lower plate but couldn't find it," Racquel explained.
"Thank you," I said. "I just don't know where it could be."
"It's a secret," commented Mom.
Racquel and I both did a double take.
"What do you mean?" I asked.
"I put it in the bathroom, in that little bag where you keep things," Mom answered.
I fell for this one and searched the various drawers and cupboards and bags of her bathroom before realizing she must have made this idea up on the spot.
Meanwhile, I realized I had left the foot supports of her walker in the car. Jona would need them to take her to physical therapy tomorrow at 9 am.
I walked back down the halls and took the two elevators back to the parking garage.
By the time I finally drove home, I was a wreck; my cold had become a sinus infection.
Nevertheless, I was careful to be cheerful to John when I walked in the door. He resents all the time I put into my mother, and if I return obviously tired and irritable, it makes things worse.
I sneezed a few times, however, and John quickly decided that I would not be good dinner company.
I ate a bowl of soup and went to bed, finally taking care of myself.
My brother Bill called an hour later and said he had talked to Mom.
"She sounded great, fairly coherent, better than six months ago. Had a lot to talk about. Said she was walking."
I tried to explain to him that when she gets out and about, taking part in things, her mind stays sharper, she's happier, and she's healthier.
I came across a quote to that effect tonight in a book I'm reading, What God Has Joined Together? A Christian Case for Gay Marriage. It came out this summer, written by my friend Letha Dawson Scanzoni and her friend David Myers.
"... social support--feeling liked, affirmed, and encouraged by intimate friends and family--predicts a lessened risk of ill health and premature death" (p. 19). If this is true for people of all ages, it must be true for older people with dementia.
I know exactly why Mom is doing so well. She has a personal caregiver to talk to around the clock, and she has a fair amount of contact with her family.
But I also know it's taking a toll on me.

The Whole 39 Yards

When Mom was first evaluated by Suzanne, the physical therapist, on Nov. 23, her diagnosis was "gait instability." With great effort Suzanne had pulled the safety belt to hoist Mom to her feet. At the parallel bars, Mom took baby steps.
Michael, the PTA, saw her on Wednesday, Nov. 30. By the following Monday, he commented, "She's doing a lot better today."
Jona reported this to me--I don't go to the PT sessions if I can help it.
By Thursday, Dec. 8, when Suzanne saw her for the third time, she was impressed.
"You're doing much better than a few weeks ago," she said. "You're doing most of the work, Evelyn."
She meant: "I don't have to pull you up out of the wheelchair."
Mom stood up, took a couple of steps, and sat down, five times in a row. Then she walked twenty feet using the walker while Suzanne held the safety belt. Then she stood up another five times.
No need to work at the parallel bars--Mom was beyond that.

[Footnote: Mom was talking a blue streak while doing all this.
First "Anne lost my lower plate."
Then "I left it under my pillow for the tooth fairy."
Then "Connie is so mean to me! She said I was going to go to hell if I didn't mind her. I asked for orange juice but she said, 'Shut up! I put you to bed and you're going to stay there. I'm not going to give you a damn thing.' I started crying, and she said, 'Shut up!'"]

On Friday Mom didn't go to physical therapy because of the P.E.O. meeting, and I didn't take time to help her walk at all that day. (I had a cold and was barely able to take her out for three hours to P.E.O.)
When I came to see her Saturday afternoon at 4 pm, she was sleepy, talking to me with closed eyes. I figured she would probably not be alert enough to walk, but we tried a test run from her chair to the bathroom.
She did fine, so I put her wheelchair around the corner and halfway down the hall, hoping to get her to walk further than she had ever walked since June 1.
She did great again and in fact walked past the wheelchair and into the dining room--maybe about 100 feet. I'll have to measure it.
I sang "Walking in a Winter Wonderland," again and again, to distract her from how difficult it was. She kind of sang along with me.
After dinner, I thought "Why not?" and pulled her up to stand at her walker.
She walked all the way back to her room and collapsed into her pink recliner.
I was singing all the way--"Winter Wonderland," "Frosty the Snowman."
The hall sure looked long as we left the living room and inched toward the laundry room.
"There must have been some magic in that old top hat we found...."
Either magic or a miracle.
She hasn't walked that far since arriving at Ocean View, October 1, 2004.

Reward! $200

Calling all unemployed, homeless, or other persons interested in earning a few bucks before Christmas!

You are invited to search Room 369 of Ocean View Assisted Living, Santa Irena, California, for a missing set of false teeth. This partial lower plate includes two molar teeth on each side of a pink plastic plate with a gold bracket on each side for securing it against the front ten teeth, which remain in the owner's mouth.

This lower plate has been missing since about 8:30 am, Thursday. Having ransacked the room, the family is becoming desperate to locate the teeth and avoid trips to the dentist to replace the plate.

Anyone with information or ideas is asked to call 1-800-MY-TEETH.

Note: Racquel, the weekend night caregiver, reports that Evelyn routinely takes her lower plate out at night and puts it under a pillow. Therefore, Racquel does not let her sleep with her false teeth in. The family will adopt this policy if and when the lower plate is located.

If you are not available to join in the search, your prayers would be much appreciated!

Carrying on with Courage

"Old age--it ain't for sissies!" quipped Mae West many years ago.
When I showed up with Mom at 519 Ninth Street for the P.E.O. meeting today, I was expecting a nice social club for old ladies, not a demonstration of courage against all odds.
I parked and pushed Mom's wheel chair up the driveway, then turned her around and entered the front door backwards, hoisting the chair up a four-inch step to a porch area, then up another small step into the house, then up six inches more into the dining room near a lovely table spread with Christmas goodies.
In the living room was a big tree beautifully decorated for the holidays, but I didn't meet Eileen, whose home it was, until later. She was resting in another room, then talking with a few of us. She had either a cold or some other ailment--perhaps just tired from the effort of decorating her house for the P.E.O. party. On a side table was a photo of her husband, recently deceased.
I placed Mom near Darlene, the only other person in a wheelchair. Darlene chatted cheerfully as she and Mom enjoyed refreshments and compared notes on the events that had cost them their mobility. For Darlene (about Mom's age) it was a broken thigh bone that had taken a long time to heal.
Dorothy, meanwhile, answered questions about how her husband was doing.
"He gets up for breakfast and for dinner, but otherwise he's in bed all day long," she said. "We can watch tv in the evenings, but if he sees a fire on the television, he gets anxious. He thinks we are in danger. I have to explain to him that we're okay."
"Oh, a touch of Alzheimer's," commented Darlene.
I now understood Dorothy's generosity toward Mom in inviting her to the meeting; she deals with dementia on a daily basis.
When it was time to move to another room for the entertainment and business meeting, Darlene carefully stood up and stepped down the six-inch step; then we moved her wheelchair down the step. Mom had to be bumped down the step in her wheelchair.
After the meeting, as people were talking and starting to leave, we heard a loud thunk that shook the floor a little.
Darlene had been negotiating the threshold and the edge of the front porch, but she had fallen. She now lay on her back on the porch, 180 pounds and immobile.
Everyone rushed to her aid.
"They'll take care of her," Mom said. "P.E.O.s take care of each other."
Darlene seemed to be okay, just shaken. After a few moments' rest, we lifted her up into her wheelchair with the help of a young man in the house.
Someone went to get ice for the back of her head, where there was a two-inch straight cut, vertical, bleeding a fair amount.
"You'll have to have stitches," I commented.
Then Mom went down the same steps, backwards in her wheelchair, ignominious but safe.
As we drove home, I reflected on my new respect for the P.E.O.s. They are battling death, dementia, and disability with great courage.
In their seventies and eighties, they gather as they have for forty or fifty years, affirming their sisterhood against all odds--not sissies but sisters.

The Case(s) of the Missing Teeth

Case 1

What: Mom's lower partial plate--two molar teeth each on the left and right on a pink plate with a gold bracket to attach them to her central teeth (still rooted in her jaw).

When discovered missing: Tuesday night, 7:30 pm, by Connie, the night caregiver

Mom's reaction: Laughter as we search. "This is so ridiculous! No, I don't know where they are." But isn't all the excitement fun!

Anne's reaction: $$$ How could they vanish during the three hours I took her out? Did she take them out and leave them on the plate at the buffet reception at UCLA? I wasn't watching her closely--I was talking with other people. What if we can't find them? How much will it cost to replace them? Can I face another encounter with the dentist after the embarrassing visit last week?

When found: Wednesday morning, 8 am, by Jona, the day caregiver, while emptying the small waste basket by Mom's recliner. They were on the floor between the waste basket and the chair.

Case 2

What: same item

When discovered missing: Thursday morning, 7:30 am, by Jona.

Mom's reaction: More excitement! "I don't where they are. I put them under my pillow for the tooth fairy."

Anne's reaction: "At least you have not left the room. They have to be here somewhere. Why did you take them out? If we can't find them, you will be back on a pureed diet, like Sue. You will be eating pureed food for the rest of your life."

Mom's secondary reaction: Dismay. Then "You probably put them somewhere."

Jona's reaction: Comforting Mom.

When found: ???

Old Moon in the New Moon's Arms

Tonight at 5 pm as I drove to visit Mom, I saw the new crescent moon in the sunset sky near Venus--a lovely sight, similar to a few days ago at 5 am when I saw the crescent waning moon halfway between Jupiter and Spica.
I found Mom in the dining room shortly after 5 pm and saw that she was feeling sorry for herself because I had come so late--not at 2 pm or 4 pm.
As the dinner hour dragged on, I commented to Bob, sitting next to Mom, "There's such a pretty sky tonight. We should go out on the patio and see the crescent moon, just a skinny slice, next to Venus." He enjoys going out on the patio sometimes, but I knew Mom never wanted to go out there.
"It's too cold out there," Mom commented, rejecting the idea as if I had proposed it to her.
She ate her soup, mixed fruit, and cottage cheese but refused the cheese blintz. When I tried to get her to eat it, she emphatically refused.
Pushing her wheelchair back to her room, I was careless and bumped the back of an armchair, smacking her arm against the chair.
She screeched in pain, and an Ocean View caregiver came running.
"Oh, I'm sorry, Mom" I began apologizing. "I wasn't looking where I was going."
Back in the room, Racquel, her private caregiver arrived, and I insisted that Mom do her daily exercise of walking fifteen feet to the bathroom and back.
She did fine with it but complained noisily as we pulled her up to walking position again after a rest: "In my own house, I get tortured."
I realized that her emotional energy had dropped because of the bumped arm, added to the fact that 8 am is a better time to do this daily walk. (Evening is more convenient for me.)
Within minutes Mom was at meltdown, the way my teenagers get when they are too tired.
"I don't want a shower--I already had one," she claimed, whimpering. But Racquel and I insisted that she had to have a shower and started undressing her.
"In my own house--I get tortured again," she said, now crying.
"It's just a shower--the warm water will feel good," I urged, but her desolation touched me.
"I just want to go to your house," she said.
"You're coming to my house tomorrow," I countered. "We'll have raisin toast. Tomorrow is Sunday, and we're going to church."
She continued crying. I told her goodnight and left her in the shower chair being soaped by her caregiver.
Driving out of the parking garage, I felt so guilty.
There she is, alone with caregivers for 23 hours, and the one hour I am there, I bump her arm, make her try to walk at the end of the day, and overrule her wish to skip the evening shower. Then I leave her with a caregiver.
Venus caught my eye, and I wondered if the moon had set beneath the ocean yet. I drove to the palisades above the beach and parked.
The crescent moon, now a brilliant orange, was still visible in the dark sky just above the black ocean. I watched it sink slowly into the ocean, its orange tip dipping into the black, then shrinking to a comet pointed into the ocean, then vanishing.
"The old moon in the new moon's arms," they call this sight.
My old mother in my arms, both of us sinking into the darkness.

"You're Ugly"

When I take my mother anywhere, I know a few embarrassing events will happen.
Today it was my sister's turn. Emily took Mom to the physical therapist, where she is learning how to walk again after time in the hospital and convalescence.
Mom was precariously balanced at her walker, holding onto the side grips in a crouched over position, looking at the ground.
"Stand up straight, Evelyn," said Michael, the therapist, facing her. "Nose over toes."
"I know, I'm trying," she answered.
"Look at me," he said, still trying to get her to turn her head up.
"Why should I?" she shot back. "You're ugly."
He laughed and continued patiently working with Mom.
Emily laughed--one more dementia moment, an instance when Mom said or did something she never would have done a few years ago.
Yesterday I took Mom to the dentist for her regular tooth cleaning.
She and I usually sing a chorus of "We're off to see the wizard, the wonderful wizard of Oz" as we set out on these little adventures. I'm thinking, "Anything could happen. Who knows what it will be today?"
We arrived and managed to get her transferred from the wheelchair to the dentist's chair.
"Has anything changed in her health status since her last visit?" the dental technician asked.
I started reciting the changes in the last three months: "She has a pacemaker now. She started Coumadin in September because they found a pulmonary embolism."
"Oh!" The technician seemed amazed at these events. "We'll have to call to find out whether we can clean her teeth. Do you have the phone number of the doctor who put in the pacemaker? "
"But she only has six teeth," I said. "Why would it matter?"
"When I clean her teeth, her gums will bleed not only into her mouth but internally, and it could cause a small blood clot that could cause problems."
"Okay, I see," I said, and for the next twenty minutes I located phone numbers for her surgeon, the pacemaker clinic, and her internist while the technician tried to reach any one of them. Finally a partner of her internist gave the green light for the tooth cleaning.
I retreated to the lobby for a few moments of peace and quiet while the cleaning went on, but then I felt guilty and went back to monitor the situation.
Mom was doing fine and the cleaning was almost over.
Then Mom announced, "I'm peeing in my pants."
"That's okay," I said. "You're wearing Depends. We can change them later."
I didn't say, "Please don't announce these events to the dental hygienist! She doesn't need to know."
Another moment like this occurred two days earlier when we went to the Pacemaker Clinic for a check-up.
The doctor made the mistake of asking her, "How are you doing?"
Wrong. With a dementia patient, you don't want to offer that broad an opening. You want to say, "I'm here to check on your pacemaker. How is your heart doing? Do you have enough energy?"
Mom saw his question as an opportunity to complain about the problem on her mind that day:
"I'm okay, but I don't like to be spread-eagled at night when they clean me--"
She had been telling me about this problem on the drive from her residence to the clinic. I cut her off: "Mom, he's here to check on your pacemaker. He can't do anything about your care at night."
I don't know what I can do about the changing of her Depends at night by the caregivers. Apparently it feels to her like a rape, having her perineum and vulva wiped at night when her Depends are changed.
(The caregiver writes each event down in her night log, noting "Perennial care." I read the log and think, "Yes, perineal and perennial.")
All in all, there's plenty of room for embarrassment. We just need to be prepared for it and take it in stride. But somehow each time there's that moment of surprise and wanting to vanish.

Why Do It? (If She Can't Remember)

"You never come to see me," Mom said today when I showed up at 4:15 pm. "I sit here all day and wait for you and you never come. I'm not happy unless I can see your face."
"What do you mean I never come to see you?" I asked, laughing in exasperation. "We went to a P.E.O. meeting yesterday. It took all morning. Don't you remember?"
"Oh, yes," she said. "We did."
"Did you enjoy it?"
"Yes, but these people here aren't nice to me. They order me around, and they don't do what I want them to."
"Oh, they don't? Well, I guess that's hard to put up with. But didn't we have a nice day yesterday? Did you enjoy meeting those ladies?"
"Yes, they were very nice."
"Do you want to join their chapter and demit from Chapter DV in Boulder?"
"No, I don't want to demit."
"You don't?" I asked, bewildered. "Why not?"
"Because I'm going back to Boulder."
"Oh," I said and changed the subject.
I don't tell her, "You're never returning to Boulder. I don't know how I would get you on and off an airplane. Our last plane trip was disaster."
I reflect on whether taking her to a P.E.O. meeting is worth the effort when she barely thinks of it the next day, unless reminded.
Daniel Berrigan quotes Gandhi in saying, during his efforts peacefully to overthrow British rule in India, "The means and end must be the same, and if they are the same, the end is already achieved."
I don't know if this can be applied to the care of a person with dementia, but I'll give it a try.
The end is that Mom be relatively happy and continue her usual way of life as much as possible.
The means is frequently offering her normal activities such as going out to dinner, visiting my house, going shopping, going to church, attending P.E.O. meetings.
I'm not sure if the end is achieved, however, when she can't recall what she did yesterday or review her life accurately: "I live with caretakers, but I do get out and do a lot of normal things."
One part of a normal life is knowing that you have a normal life.
Does it count if I know that she has a pretty normal life--for someone in her circumstances?
Her view of her life can be pretty skewed.
As we drove to the P.E.O. meeting yesterday, her eyes were closed. I asked her, "How are you feeling? Are you awake?"
"I'm okay, except I have cancer," she responded.
"You don't have cancer!" I exploded. "You had one little black spot on your chest removed in 2002, but you don't have cancer now. They got it all."
"Are you sure? I'm pretty sure I have cancer."
"No, you have a pacemaker and Lewy Body Disease--that's a problem with your mind--but you don't have cancer."
"A problem with my mind? Why are you telling me that? I don't want to have a problem with my mind."
"Well, you don't get to pick and choose. You do have an illness where your brain is deteriorating, but it's not cancer."
"Oh dear--is it like that lady who can't feed herself?"
"No, she has Alzheimer's. You don't have that. What you have is kind of like Parkinson's."
Somehow we got off this subject, which was distressing to her, at least for the brief time that she recalled it. Today she has no memory of this conversation, as far as I can tell.
There's a downside and an upside to not being able to remember what happened yesterday.
She can't retain an overall assessment of her life, but I think that having as many normal activities as possible is good for her, even if she can't recall them.
During the hours when she's sitting bored in her room, she decides her life is miserable and her caretakers are mean. She falls into a black hole of the immediate present and sees no past or future.
If my sister and I didn't get her out to these activities, her mind would get less exercise and the black hole might get deeper.

P.E.O.: Pretty Exciting Oldsters

Everything worked out beautifully for Mom's first P.E.O. meeting in two years.
When we left for the meeting, I handed her the information and address booklet from her old chapter in Boulder, Colorado, in case this chapter in Santa Irena needed proof that she was really a P.E.O. However, the booklet confused her. She looked through the addresses, remembering the names of friends and asking, "Will Harriet Smith be there?"
"No, she's in Boulder," I explained. "We're in Santa Irena, so the Boulder P.E.O.s won't be here. It's like the song, 'Make new friends, but keep the old.'"
"Oh, I see," she said, and she did get it.
The home was perfectly wheel-chair accessible--it had been built for a family with a young woman in a wheelchair.
Mom got through the three hours from 10 am to 1 pm without doing or saying anything too bad, I think. I had to sit outside in the garden for the business meeting, which was not open to non-P.E.O.s, so I'm not sure what transpired then, other than my anxiety as I sat there copying addresses from one address book to another and wondering whether she was behaving normally.
"How did she do?" I asked the hostess when I was allowed back in.
"Oh, we enjoyed her," she answered. "She told us all about when she and her friends went swimming in the nude and her uncle was watching."
"Oh dear!" I gasped, thinking through various versions of this story she enjoys telling.
Footnote regarding LBD: there are often no sexual inhibitions because the frontal temporal lobe is not functioning properly. In a normal mind, this part of the brain looks at various behavioral options and discards many as inappropriate. In a mind affected by LBD, anything can happen. There can even be a greater interest in sexuality.
(Note to myself: join P.E.O. so you can stay with her at all times and redirect her when needed.)
Mom was thrilled to be at a P.E.O. meeting again. She chatted and ate the refreshments and met all the ladies.
The entertainment portion of the meeting was a member from a nearby chapter reporting on the International P.E.O. Convention this fall in Vancouver, BC. The speaker was intelligent and revealed a new policy: "It's okay to talk about P.E.O."
I nearly fell off my chair as she apparently revealed what those initials stand for: "We are a philanthropic, educational group." Philanthropic Educational Order?! Bingo!
The report was detailed, however, and I found myself hardly able to stay awake.
"And then we went back to the hotel again," she continued as I struggled to keep my head up.
Mom, however, stayed alert and attentive the whole time. Go figure.
As I expected, these twelve ladies were the creme de la creme of Santa Irena. The home was in a wealthy neighborhood. It was spacious and mission-style with beautiful tiled floors, gardens, white walls and exposed dark beams in the ceilings.
One of the ladies introduced herself as Margaret and told about earning a BS in biology and chemistry at Pomona College in the early 1940s but being denied admission to medical school because of a bad recommendation from a chemistry professor. He had written that she was not good at spatial design. She ended up earning an MS from the University of Colorado and working in laboratories and bioengineering.
Just one thing surprised me: these women were gracious and tolerant of Mom, in spite of her obvious dementia and her wheelchair-bound state. I had told them she lives on the "secure floor" of Ocean View Assisted Living, and they witnessed her wild talk. But they still invited her to join the chapter. One of them talked about living in the neighborhood of another chapter for years and never being invited to join.
Driving back to Ocean View afterward, I was moved to tears by their generosity.
But I was also faced with a moral decision: they had invited me to join too. In fact, the hostess's first words to me had been, "How have you escaped becoming a P.E.O.?"
I stammered some kind of answer, not listing the organizations I am a member of: NOW, NARAL, RCRC, EEWC, WomenChurch Convergence.
My goal is to take Mom to P.E.O. meetings without myself making any commitment to these ladies. But their devotion to others in the "P.E.O. Sisterhood" is impressive and must be the reason they welcomed Mom and me to their meeting on short notice.
"Sisterhood"--the cry of feminists in the late 1960s and '70s, the second wave of the women's liberation movement.
I didn't realize Grandma and her friends were into sisterhood, or Mom and her friends. But P.E.O. was founded in 1869, so it must have been a part of the first wave.

Finding P.E.O. Again

I never thought I would join P.E.O., but I am currently in danger of becoming a de facto member.
I used to sit in my grandmother's kitchen and beg her to tell me what the letters P.E.O. stood for (a secret known only to members). My best guess then, in the 1950s, was "People Eat Onions." Now I'm thinking "Protect Each Other"? "Progressive Educational Order"?
My mother never joined during the years when she was working full-time and raising a family, but after her retirement at age sixty, she became an active member in Chapter DV in Boulder, Colorado.
In November of 2003 Mom fell down for about the fourth time in a month, not injuring herself but unable to stand up. As a result, her residence (mostly independent living) insisted that she move to somewhere primarily focused on assisted living.
My sister and I moved her to California--first to Mission Viejo, then to Santa Irena.
We located doctors, a dentist and a church, but we never did connect with P.E.O. in California. It just wasn't high on our list of things to do.
Mom, however, never stopped insisting that she had to get to a local chapter of P.E.O. This summer I promised her we would find a chapter in September, but then she was in the hospital for nine days and P.E.O. was once again postponed.
In the last couple of weeks, Mom has become ambitious again. She wants to get back to a normal lifestyle, and the two things she wants most are to walk again (no longer using a wheelchair) and to go to a P.E.O. meeting.
When the church invited Mom to a meeting of Young at Heart, the seniors club, I decided to take her so that she would have a P.E.O.-like luncheon experience, though it would not be the real thing.
"Oh, we're so glad you're here," said the deacon in charge of ministry to singles. "Why did you decide to come?"
"Well, actually we came because it would be like P.E.O., which we have not been able to locate in this area," I lamely explained.
"P.E.O.! Most of the women at that table to your right are P.E.O.s," the deacon said.
And the connection was made. Mom was invited to choose from three local chapters, including one that meets tomorrow. We plan to be there.
If the home where it meets has reasonably good wheelchair access.
If Mom is able to be mostly rational and does not interrupt the meeting with a detailed account of her entire life or a recitation of "Work the Titan, Work the friend...."
I will have to attend the whole meeting too, or (as the hostess suggested) wait out in the garden during the secret parts of the meeting. I need to be available in case Mom's behavior takes an odd turn or she insists on going to the restroom.
On the bright side, I may finally find out what the letters P.E.O. stand for.
Stay tuned for the report on tomorrow's big meeting.

Robert McAfee Brown and LBD

Robert McAfee Brown, the prominent theologian, developed Lewy Body Dementia in his last few years and died in 2001.
I just read parts of his memoir, Reflections over the Long Haul (Westminster John Knox, 2005).
Attending a college reunion, I ran into my friend Pia Moriarty and learned that she had helped him to edit the manuscript during the last three years of his life.
We had both taken classes from him when he was a professor of religious studies at Stanford University in the 1960s. Earlier he had taught at Union Seminary in New York City, having studied there under Paul Tillich and Reinhold Niebuhr.
His memoir ends with an epilogue, "Papa's Final Days," written by his daughter Alison. Her words are diffused with a beautiful spirituality and "sense of his love still present here with us" (p. 302).
As in the case of many older persons, particularly LBD patients, Brown fell in the summer of 2001, breaking his hip and undergoing surgery before being moved to a nursing home and not living much longer.
The only mention of Lewy Body is in the prologue, written by his wife, Sydney Thomson Brown.
"About four years before he died, Bob noticed that he was having memory problems," she writes. "His doctor referred him to a therapist about his concerns. After a battery of tests, he was diagnosed with Lewy Body Disease, a disease in which, in a very random way, different parts of the brain become disabled. Bob knew that he had an illness of progressive brain debility, that it might be held in check but not cured. We wanted most for him to continue in hope, and he did. Certain areas of his brain were not functioning well; others were excellent. If in the course of daily life he became confused, we simplified our activities. For the most part, we continued on as usual" (p. xv).
Pia comments that throughout his life, "He went into the joyful and suffering situations of people's lives, stood by them, offered as practical a compassion as he could, and found words to honor the God that he found there." For example, he took part in the Freedom Rides in the South in the early 1960s, in the United Farm Worker movement in California, and in actively opposing the Vietnam War.
"According to Christian thinking, the primal accompaniment is God's great act of incarnation," she explains. "Bob worked and lived this out in his own life, and as he struggled in the end, let us walk in accompaniment with him."
I enjoy thinking about Brown's family and friends accompanying him in his journey through Lewy Body and through his dying. It makes it easier for me, knowing that a great man like this had to take this humbling path.
Sometimes I feel as if my mother is the only crazy one, and I am the only one putting up with things like her hallucinations and fears. Or I imagine that her dementia is who she is, perhaps somehow even who she has always been.
Knowing that this deeply insightful man developed LBD reminds me that her illness is just that--an accident/incident in the last few years of her very productive and busy life.
Many passages of this memoir give me courage to walk on in the journey with my mother. I will quote just one, from Sydney's prologue:
"Today he would say: Pay attention. View the world with imagination, compassion, energy. See that the world is not as it was meant to be. Learn to connect your theology and your Bible to God's people and creation all around you. Be followers of Jesus--work for radical revolutions for a just and caring world. And in all this, may you be equipped with courage" (p. xiv).

Burning Toast

Mom walked to the bathroom and back easily today, the best ever.
She was tired afterward, so I settled her in the recliner and told Jona that I was leaving. I had come at 8:30 am and taken her to have photos taken at church by a professional photographer; now at 10:30 am I was returning home.
But then the fire alarm went off--first a siren noise, then an automated speaker in the wall saying, "Go to a fire exit immediately."
"Is it real or just a fire drill?" I asked Jona. She ran off to find out.
"Go to a fire exit immediately," the voice repeated.
"I'm not going anywhere," Mom answered. She was tired and did not like this voice ordering her around.
"Well, Mom, if it really is an emergency, we should leave," I began.
Jona returned saying no one knew if it was a fire drill or not. None had been scheduled.
I decided we were leaving.
"But she can't get down the fire exit," Jona pointed out.
"I know--it's crazy to have these Rem people on the third floor. They should be on the first floor," I said. "We'll go to the elevator."
Another "private," employed by the same agency that sends Mom's caregivers, came into our room to help Jona with Mom.
"No, I'm here. Go help Ruth," I said.
"I can't take Ruth anywhere," she said. "She's in a Hoyer lift. My orders are to just take any resident and escort them out."
"Oh dear!" I said. "Ruth has to be left behind?" I was thinking about the elderly people who died in nursing homes in New Orleans.
Meanwhile Jona and I had helped Mom get into her wheelchair, and we were pushing her out, past the aluminum walls that had automatically descended from the ceiling when the alarm sounded, stopping any possible fire in the kitchen and lounge areas from entering the hall.
We got to the elevator and found that all the Rem residents were being herded into Ralph's room near the elevator. What good that would do, I didn't know. The director of the floor didn't know whether it was a real alarm; she had not been notified of any drill.
"You shouldn't go in the elevator in a fire," someone scolded me, but we went anyway and soon assembled with others near the front desk on the main floor. A strong smell of burnt toast permeated the area.
"It's someone on the second floor--she was making toast in her microwave," explained Lorraine, the receptionist, enjoying the emergency. It appeared that no fire had started though the smoke alarms had been activated.
We waited a few minutes, and I outlined to Jona my recommendations should a real fire occur: take Mom to the stairwell marked Fire Exit, get her out of her wheelchair so she is sitting on the top step, and make her go down the steps on her seat, one step at a time. "That should be fun," I said sarcastically, and we laughed, imagining the scene.
We agreed that the residence had been designed wrong--the least able residents should have been on the first floor so they could leave easily in an emergency. But that plan would not have permitted such a pretty first-floor lobby leading into the dining area for the assisted-living residents who did not have dementia.
The ideal residence is on a slight hill so the entryway can be elegant, while the Rem residents are safe on the floor below, set into the hillside with a wide patio for easy escape access. Mom was in a residence like this two years ago in Mission Viejo.
After deciding there was no real danger, I went home, leaving Jona with the job of returning Mom to the Reminiscence Neighborhood.
My sister and I have Mom's name on a waiting list for a private room in a skilled nursing facility that has just one floor with ground access for exit in case of emergency. Rooms with two and three beds are available, but we're not moving her just yet because the place looks a lot like a hospital. It would be a big step down from where she currently lives.
For now, we will wait for a private room and hope that no serious fire occurs at Ocean View.
As for the lady who burned the toast, she will probably arrive on the third floor soon. Or maybe she gets three strikes before she joins the Reminiscence Neighborhood.

"Fluctuation of Cognitive and Motoric Functions"

One description of Lewy Body Disease includes the phrase "fluctuation of cognitive and motoric and psychiatric symptoms."
In other words, she can be good at thinking and moving one day, with her emotions normal, but the next day she can be terrible. And the day after that she can be fine again.
It happened today.
I arrived to visit her at 4:15 pm and found her in deep sleep. Her caregiver, Jona, had left at 2 pm or so for a doctor's appointment. She had carefully unplugged Mom's electric recliner and left her asleep in it.
"Hi, Mom, I'm here," I said loudly, figuring I should wake her up and get some greeting cards signed and exercise done before taking her to dinner.
"Oh, you're here. I was at Fitzsimmons talking to a doctor," she said.
"You were really asleep," I said. "You were dreaming that you were in Colorado."
"Yes," she said, continuing to tell me about her dream.
But then she said, "That thing on the ceiling has worms crawling in it. Every once in a while one falls out and falls on me. That's a public health disaster. And they are probably the thing that makes my chin so itchy that I have to get it cleaned."
"Mom, that's just the sprinkler for fires," I said, looking up at the spigot in the middle of the ceiling.
"That's what they tell me--fire protection--but it doesn't look like that."
"No, it doesn't. Now Mom, you can't keep scratching your chin. It's looking so good; the scabs have fallen off."
After we talked a bit more, I said it was time to walk to the bathroom.
"Did you do your exercises today?"
"Oh yes, I did. They say to me, 'You will or I'll kill you,' so I have to do it."
"They don't say that, Mom. They're not allowed to talk like that."
"Yes, they do," she said with a whimper. "And they say 'We'll let you fall by yourself and they really do it.'"
All this time she was talking to me with her eyes closed and clearly feeling sorry for herself, but I persisted in moving toward our daily walk and making her more alert.
With her chair raised to put her almost in a standing position, I put the walker in front of her and tried to pull her to stand up, but she was not taking any of her own weight. After four practice pushes to standing, I started moving her with the walker toward the bathroom. Her feet and legs were still not bearing much of her weight, but I figured we could make it.
When we moved off the carpet and onto the linoleum floor of the bathroom, however, her feet slipped right out in front of her as if she were on ice. I was holding her whole 120 pounds as she leaned backwards. I kept trying to get her back to standing, but each time she moved a foot, it slipped. I wondered if there was water or talcum powder on the floor, but there was nothing. Somehow I dragged her to the toilet and sat her on it. When I asked her to hold onto the white bar to stand while I removed her wet Depends, she couldn't hold her weight there. I had to hold her up while pulling them down, let her sit again as I put on new Depends, and then hold her up while pulling the Depends up. Twice her body sagged nearly to the floor, but I pulled her up to sit on the toilet.
"Don't let me fall," she was yelling.
"You're not going to fall," I kept saying calmly.
"Don't make me do this!"
"It wasn't my idea. You're the one who said you wanted to walk," I insisted.
It didn't help that she was wearing an ankle-length swishy skirt--I regretted letting her dress so elegantly instead of keeping her in simple long pants with an elastic waist.
I changed her shoes from slip-on style to white jogging shoes with shoe laces and tried to start back toward the wheelchair in the main room, with her at the walker, but her feet still had no grip on the floor.
Somehow we made it to the carpet and the wheelchair. We both sat resting and panting for a few minutes.
"We have to do this every day, if you don't want to be stuck in the wheelchair," I said.
But I had my doubts.
The deep sleep in midafternoon, the worms falling from the ceiling.
"Maybe she had a stroke or some downward LBD turn overnight," I thought. "Maybe she'll never be able to walk again as well as she did for the last five days. Or maybe it's because she was alone for two hours, dreaming and waking. No one was here to talk to her and pull her back to reality."
I'd been hoping to cut back on the one-to-one caregivers and rely more on the Ocean View staff to keep an eye on her, either as she slept in her recliner or sat out in the common area.
But now I realize she can't be left alone. Her mind will wander, even if she physically does not try to get out of the chair or bed.

Hooray: Walking and Talking

After Mom's plea on Sunday--"I want to walk so badly"--I was determined to do my best to make that happen.
That evening when I took her back to Ocean View, I tried having her walk from her recliner to the toilet, a distance of about 12 feet around a corner. She hadn't done this since August because of her hospitalization in September.
I put her walker in front of her, pulled her up to stand at it, and bore part of her weight as she laboriously shuffled into the bathroom. It was difficult because her back is so bent. In order to avoid falling forward, she leans backward and never gets her full weight balanced on her feet.
Also her feet seemed to have forgotten how to move. They are turned in, instead of pointing forward, and with each step she tended to move to the right rather than forward.
We made it, however, and on Monday, Tuesday, Wednesday, and Thursday, she did better each day, bearing more of her own weight and moving her feet more appropriately.
On Tuesday night Bill called her and had a great conversation. She reported all kinds of news to him--rain, voting, and my husband moving from the night shift to days. Most of it was accurate.
On Wednesday we responded to a postcard she received from the University of Colorado asking her to call the Alumni Office and "ensure your Alumni Directory listing is completely accurate and up to date."
Instead of just checking her address and phone number, the pleasant man on the phone wanted to hear all about her life. Best of all, he didn't ask for the names and dates. He just said, "Is it true that you graduated from CU in 1947? With a BS? And earned a Master's in 1960? That you were a professor of nursing at the University of Maryland? That your husband's name was Kermit? That you have four children? What are their names?"
Most of the questions required only a yes or no answer gave her the opportunity to be proud of her education, her career, and her family. What an ideal scenario! They should call every day to verify their records.
Mom managed to come up with the names of her children and only once got off track, explaining that she now lived in California and adding, "You know, the Russians sold California to us...."
But all in all, she did a great job with the information check and was so pleased that an important man at the Unversity of Colorado wanted to know about her life.
That evening, trying to fill the last ten minutes before her caregiver arrived at 6 pm, I handed Mom a note pad and said, "Why don't you write a note to Roz?"
Writing would exercise her sore right hand as well as her mind. I expected her to write barely a word or two, asking me what she should say.
But to my amazement, she quickly wrote out the following note:
Dear Roz,

We went shop[ping] at your old place. now rain. I got to get a new striped blouse--against Anne's advice. Connie is here now so I'll have my shower--Anne & I cancelled each other's votes.

Love always,

Grandma Gussie

She had remembered a lot of things, accurately: shopping, rain, voting. A week earlier we had been to Beyond Sense, the gift shop where Roz used to work.

She had a life, I concluded. And she remembered it.

Voting, Part 2

Tuesday afternoon was overcast but not raining, so I decided to push Mom over to the polling place in her wheelchair, first making sure she was bundled up.
It was a dramatic experience for her: travelling two blocks at 5 pm as it was getting dark and then entering the brightly lit, colorful room with voting booths.
She held her ballot, slipped it in the ballot box, and was given a sticker "I voted" to wear.
At dinner, she was the only one in the Reminiscence Neighborhood wearing that sticker.
In fact, most of the caregivers had not voted because they are legal residents but not yet citizens. Many are from the Sudan, Ethiopia, Egypt, the Philippines.
The next day I learned that my hypothesis was wrong--that voters might have a tendency to vote "yes" because it feels good. California voters had no problem voting "no" on all the propositions.
Mom was proud of voting "yes."

Voting

I'm chickening out this year.
Last year I took Mom to a wheelchair-accessible polling place a week before the election. That gave us plenty of time to find it, park in a wheelchair-accessible spot, walk upstairs, stand in line, and go through the ballot while in the booth.
I did all this so she could vote for George Bush and cancel out my vote--definitely above and beyond the call of duty.
However, I felt that voting in a presidential election was important to keep her as mentally tuned in as possible. She did so well with the voting for various candidates that I decided to let her go through the propositions on the ballot, something we hadn't prepared for. I gave her a word-or-two summary of each one and let her mark yes or no.
"This one's a school bond--you want to support schools, don't you? Okay. The next one is money for public health. You were a public health nurse; I know you want that one."
This must have annoyed the heck out of the other voters, but I didn't care.
It took so long to get to and from this voting event that I missed a dentist appointment.
All in all, I decided to order an absentee ballot for her this year.
When I sat down with her to help her fill it out and sign it, however, a problem arose.
She had received a flyer in the mail saying, "Annoy Gray Davis--Vote 'Yes' on 77."
Somehow that flyer was at hand after she laboriously signed her name on the envelope for the ballot and was about to start marking the ballot.
"I'm going to vote yes on 77," she announced, completely unaware of what 77 might be about.
It's about redistricting, and I wasn't going to try explaining that one to her; besides, she probably would want to vote for it if she were in her right (Republican) mind.
Actually, I don't care if she votes yes on 77, but I care a lot about Prop. 75, another Schwarzeneggian proposition, which would reduce the financial power of public unions and thus the power of Democrats.
So I quickly handed her the ballot instruction booklet and told her to go down the list and mark yes or no on each of the propositions.
She marked "yes" on all of them, which caused me to reflect: do all voters who don't understand a list of items on a ballot tend to vote "yes"?
Or is it just Mom? Does voting "yes" feel positive and give warm vibes to the soul? "I am a good person. I avoid conflict."
I don't know, but I took the real ballot home, marked "no" on all the propositions designed by Gov. Schwarzenegger, and will drop it off at her polling place today.

Trapped in Dementialand

They call it the "Reminiscence Neighborhood," but actually it's a minimum security jail.
The residents can't leave unless an approved person escorts them for a few hours or few days visit to the outside world. Most never leave at all.
The security measures are fairly simple. Only one elevator is available for residents and their guests. To leave the third floor, one has to punch in a code to open a door and reach the elevator. Then on the first floor, one has to walk past a central desk in order to walk out the front door or reach the parking elevators.
Most residents don't know a code exists and couldn't remember it if they knew it.
Mom has no idea that she's confined because she leaves the third floor and the building frequently with someone accompanying her.
But some residents know they are trapped and haunt the hall near the elevator, waiting for people to go through the door so they can follow them out.
Regina is one of the smart ones trying to escape. When she's near the door to the elevator, I punch in the code and slip through the door quickly, before she can follow me. But the code disarms the door alarm for 30 seconds, so Regina can open the door and slip out after some leaves in the elevator.
One time I arrived in the elevator to find her standing there, about to enter the elevator after I walked out to the third floor.
"Oh--Regina!" I said, not sure what to do next.
I opened the door to the third floor to call someone, forgetting to punch in the code, and the door alarm went off, bringing a staff member running. Regina was apprehended and gently drawn back to the Rem Neighborhood.
Another time when I was leaving the floor to take my mother to a doctor's appointment, an agitated resident was in the area of the elevator, determined to leave. Staff members were dealing with him, but meanwhile no one could use the elevator.
I waited, then wheeled my mother around the floor to the service elevator, escorted by Beth, the Rem director, so we could leave on that elevator.
It turned out, however, that Beth had the key but didn't know how to activate that elevator, so we wheeled back to the first elevator. I was starting to feel claustrophobia: would we ever escape? This was making us late to the appointment.
That feeling of being trapped in dementialand occurred again last night. I had spent nine hours with Mom, first taking her to church, then to lunch at my house, then back to Ocean View.
Then I sat with her for an hour as she ate her dinner, waiting for her evening caregiver to arrive at 6 pm.
Dinner hour on the Rem floor is a real spectacle.
Sue sits there alert and curious, wondering what to do with her spoon, until a caregiver finally comes and puts spoonfuls of pureed food into her mouth.
Ralph leaves the table and returns, demanding his food, unaware that he has just eaten.
Julie shouts incessantly, "Could somebody please help me? Someone, anyone. I'm just asking for a little help, but you're all ignoring me. I guess I'll just sit in this chair 'til I die. I'll be happy to die. I'd rather die than be here. Help me, somebody, please!"
"Oh, Julie, Julie Adams," says Bethlehem, the lead caregiver, who is one of 4 staff members cleaning up dishes and managing the 26 residents. No one has time right now to push Julie's wheelchair to her room, and it's better to keep her with the group rather than leave her alone in the room.
"She always yells like that," comments Mom.
Leota sits blank and cheerful at the other end of Mom's table as a caregiver tells her, "You must eat something, Leota. Here, take a spoonful of this."
The new lady on the floor announces, "I'm boycotting." She hasn't eaten since she arrived.
I chat with Ryan, the young man who cares for John. "Don't you ever take him out for a walk around the block?" I ask.
"No, I can't do it," he answers. "If he gets out on the street, he wants to go home. I have to tell him 'No, your wife is dead,' and he gets upset."
Finally Racquel, Mom's evening caregiver, arrives and I bolt for the elevator after a few seconds of greeting.
"Oh, you aren't coming back to the room?" she asks. Usually I talk with the caregivers a bit, taking an interest in their families and their lives.
Tonight, however, I have a feeling of desperation as I punch in the code to reach the elevator. The door opens, then closes behind me, and I sigh with relief. I'm on the other side of the door.
On the first floor, I walk to the other elevator, go down to the parking garage, and punch the code again to leave the elevator lobby and get to my car.
As I start to drive out of the garage, I come around a corner and face a huge grilled gate blocking my path.
Panic comes before I can talk myself out of it: another wall preventing my escape. I know the electronic monitor will see my car at the gate and open it. I know this.
Finally it happens: the gate slides up slowly, and I drive out. A wave of relief hits me, and I find myself fighting back tears.
I'm not as tough as I think. A full day of caregiving, topped by dinner with people thirty years ahead of me in the life cycle, is enough to do me in.

A Lucid Moment

Mom was looking at the smocked dresses she had made for her granddaughters fifteen and twenty years ago. The tiny folds of smocking were held together by embroidered patterns, different on each dress--panda bears, flowers, a red school house flanked by two orange school buses.
One of the dresses had a small flowered label sewed inside the back collar: "Made by Grandma."
"They're so beautiful!" I marvelled. "How did you ever do it?"
"I don't know," she said. "My hands don't even work now." The contrast between her skilful fingers then and now is shocking. Now she can barely sign her name.
"Anne, do you think I'll ever walk again?" she asked suddenly.
I was surprised at her question: usually she doesn't remember that she can't walk, and she doesn't try to make careful assessments about the future.
"Uh--well..." I delayed, trying to be honest, thinking back to her broken hip fifteen months ago and the various health crises since then. "I don't think so, but..."
"I want to walk so badly."
A sharp pain--the realization of her sadness--shot through me, and suddenly I had an answer.
"It depends on whether you exercise. If you stand up at your walker and try to walk, like we did yesterday, and do it every day, I think you could do it."
"I do exercise! I do them every day," she declared, but I knew she meant pushing the pedals on her small foot machine and other very light exercises.
The last time her physical therapist visited, he said she needed to walk with parallel bars and do other stretching and balance exercises daily in order to improve. The home health services provided after her September hospital visit have expired, however.
Unless I can get another PT order from Dr. Susan C., Mom won't have more physical therapy. Medicare only pays for therapy when patients improve; if the patient stays the same or is in declining mobility, there is no coverage.
It's up to me to get another order and to make sure she gets out to those appointments several times per week--I've let this fall between the cracks.
"The girls should know that there's a lot of love in these," Mom said, her mind back on the smocked dresses. "They're done so perfectly."
"Yes, they know that," I said. "You put so much time and love into these dresses."
I was thinking, "This beautiful, colorful smocking will be here when you are gone. They will become heirlooms."
Will my daughters put these dresses on their daughters, or will the smocked look be too old-fashioned for kids to wear?
Will Mom ever walk more than ten feet with her walker again?
"Que sera, sera," as the song says. "The future's not ours to see."
One thing I do know: I won't be spending my seventies doing intricate handwork like this.
These smocked beauties will forever tell a story that begins: "Made by Grandma. Grandma Evelyn, who was born in Telluride in 1919...."

Obsession

When Mom is all dressed up with her hair freshly coiffed, her nails done, wearing earrings and jewelry, she is elegant.
But lately she's been looking a bit battered: there are two red scabby patches on her chin and several other small red spots elsewhere on her chin and forehead.
These began when she kept insisting that the three or four hairs on her chin needed to be shaved. Never mind that these hairs weren't there--they were being shaved several times a day by whichever caregiver she could get to do it, once again.
To Mom, however, the hairs were there and they were bothering her. She started rubbing her chin to get them off. Then she had to rub to get the rough skin off, the patches irritated by her scratching and rubbing. She scratched spots on her forehead too.
For the last week the caregivers and I have been pulling her hand away from her face and nagging her.
If I say "No! Don't rub your chin" and remove her hand, she starts again twenty seconds later.
"I'm just trying to clean it," she says.
"It's already clean!" I say. "Your face is washed every day."
"But this part needs to be cleaned off."
"No, that's a scab. If you rub it off, it will bleed."
We get into a game where she rubs again, and I catch her in the act, and she laughs.
But she can't help it. Her mind is in a groove that it can't get out of.
Part of Lewy Body Dementia is obsessiveness.
The first obsessions I noticed had to do with toileting. She was worried about losing her continence and wanted to use the toilet many times per day, even though she was wearing Depends. I would limit her to one bathroom trip per hour, but she wanted to use the toilet every ten minutes or so.
While at the toilet, she had to have the water running "for inspiration." If it was just a trickle, that wasn't enough. She had to hear it loudly. Then it had to be hot water.
Then she got into counting and folding the squares of toilet paper as she sat on the toilet.
Later her obsessive-compulsive behavior turned to coughing and spitting into a tissue. She went through two boxes of tissue per day while her doctor changed her medications to try to get rid of the nasal drip and phlegm that was causing the cough.
The next issue was rubbing her crotch with her hand inside her Depend.
In each of these phases, redirecting her to some other activity was the only solution. Scolding and arguing did not work. Her mind would return to the activity like a phonograph record with its needle stuck in one place.
The only good news is that so far each obsession has faded, to be replaced by something else.
It's sad to watch her mind deteriorate, to see her brain losing its connections to the frontal temporal lobe that produces intelligent, logical thought.