"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.

Shopping for Corduroy Pants

My mistake was telling Mom a few days ago that Roz had bought a pair of corduroy pants. I was just updating her with news of her grandchildren away at college, but the image of those pants stayed in her mind.
Scene 1
I arrive on Sunday afternoon, still a bit shaky from the stomach flu, and planning a not-too-strenuous few hours.
Mom, however, has her mind on corduroy pants.
First let me explain that she never used to spend much time or money on shopping. She was a no-nonsense nurse--first psychiatric, then public health and ob/gyn. Then she taught nursing at the University of Maryland for 13 years. After that she was a Red Cross volunteer and a Meals on Wheels driver, along with finally joining the social clubs that had been her own mother's life: PEO and DAR.
Now she can't do any of that. Because of her gradually appearing dementia, she gave up driving, volunteer work, and even the social clubs.
There are three things she can still do, outside of coming to my house to eat a meal and be with the family:
1) go to church,
2) dine at restaurants (if wheel-chair accessible)
3) shop.
Her favorite thing is shopping. Wielding the power of the credit card, she feels important. If she has several shopping bags on her lap, being pushed around in a wheelchair doesn't feel so bad.
"Thank goodness you're here," she says when I arrive at 3 pm. "I need to go find some corduroy pants."
"What? You have lots of pants," I answer. "You don't need to buy any more."
"Roz bought some corduoy pants, and I need some too," she declares.
"Not today," I say, but she begins whimpering.
"You never let me go shopping..."
I'm startled by her launch into high-pitched, barely intelligible entreaties.
"What do you mean I never take you shopping? Two weeks ago you bought that new lavender silk blouse, two pairs of shoes, and a necklace."
"Well, that was two weeks ago." She continues crying, and I marvel at her shameless use of tears for manipulation. "There won't be any corduroy left--someone else will buy them."
After more aruing, I cave. "Okay, we'll go to Macy's," I say.
Then I try humor: "You have such a sad life here, being waited on hand and foot. You only get to go shopping every two weeks."
"It's true!" she insists, laughing.

Scene 2
We arrive at the mall, driving up several floors while looking for a handicapped parking place. I don't want to park on top, where the sunshine will be too bright for her. I spot two empty spaces together and quickly take one of them, grateful for the extra space in which to get Mom out of the car, but after I park a shiny gray sportscar slips into the spot next to me.
"Oh no!" I'm thinking, and I dramatically pull the wheelchair out of the back of my van as the driver and his friend get out of their car. But they don't take the hint. They click to lock the car doors and walk off.
Now I face a moral dilemma. Can I get Mom into the wheelchair without scratching the sportscar? Should I get back in my van and look for another spot? What if there are no more large spaces or handicap spaces?
I should have parked in the middle of the two spaces to reserve the extra space I needed to maneuver her out of the car without doing any harm to other cars.
I experiment with opening my car door and resting it ever so gently against the other car. It seems okay. I think I can do this without reparking the van.

Scene 3
I am debating whether to take her to Sears or Macy's. How are we going to find corduroy pants in a size that will fit her? She's gone from 5'7" to less than 5'; her waist has expanded, and her back is permanently hunched over by a couple of crushed vertebrae. How can she even try pants on? The only way she can stand up is by holding onto a handicap bar.
I decide to take a brief tour through the petite section of Macy's before heading to Sears.
Mom decides to enlist the help of a saleslady and starts shrieking,"Corduroy pants! Corduroy pants."
Soon a kind woman is helping us search, and the miracle happens: she finds some soft dark brown pants that don't look corduroy to me but indeed have a fine thin ribbed pattern.
"Actually the pants need to have an elastic waist," I explain, looking at some velveteen pants that have just such a waist. When I shop for Mom, I buy "Petite Large" with an expandable waistline (translate: short fat). No trying on needed.
Today we will try to try on, I decide. I pile both pants onto Mom's lap, but she has noticed a white sweater with a collar of lush tan rabbit's fur.
"This is what I was looking for," she exults, and I remember her remark a few days ago about wanting a coat with a fur collar. I let her add the sweater to the stack of clothes in her lap. She continues to see silky blouses and other things she wants to buy. I'm checking price tags and trying to figure out how to leave the store with as few items as possible.

Scene 4
We are in a large, handicapped-accessible fitting room, thanks to the kind attendant. There's plenty of room for the wheelchair, and there's even a white bar to hold onto. I'm committed to taking Mom's shoes and skirt off to slip on the pairs of pants, and I think I can get her standing briefly to try the pants on.
There's just one problem: a bad smell that makes me think she may have had a BM in her Depend. I forgot to bring any extras with me, so I can't take her to the restroom.
The thought occurs to me: "Does 'you break it, you buy it' apply to soiling clothes while trying them on?"

Scene 5
We are at the cash register, about to buy the corduroy pants and the rabbit fur sweater for a total of about $150 before tax.
"Where's my purse?" Mom asks. "Just use my credit card."
"Okay," I say.
The elaborate deception begins.
I hand her the soft pink leather purse and she begins trying to get her wallet out. Meanwhile, I hand the cashier her debit card, which I keep in my wallet. It has my name on it, but it is for her bank account.
"Here, Mom, let me get your wallet out," I say. I take the wallet and hold it, pretending to remove a credit card. Later I return the wallet to the purse in her lap.
I punch in the PIN code and return the card to my wallet.
That's how we handle things financially. My sister and I keep Mom's debit and credit cards; I write her checks. There's actually nothing of any importance in her wallet, except a little cash. She continues to believe that she needs her wallet and purse to go shopping, and we don't tell her otherwise.

Scene 6
We wheel back to the car. I'm tired and getting ever more queasy but grateful that we don't have to go to Sears.
I open the car door and--tap--it hits the sportscar still sitting next to me, not very hard but hard enough to flake off a tiny bit of paint, one square millimeter, from the rim near the wheel.
I panic and read the name of the car: Boxster XP or something like that.
"Maybe it's just a snazzy Toyota," I say to myself, walking around to the front to see if there's any other name on it.
"Porsche."
Return of the moral dilemma: should I leave a note, offering to pay for the damage? As I begin writing various versions in my head, it quickly becomes apparent that anything I say will be ludicrous.
"Battered van owner to Porsche owner: I'm sorry I didn't keep looking for a wheelchair-accessible parking space today. Feel free to contact me (but only if this is your first ding) and let me know your cost to--"

Scene 7
Mom is back at Ocean View, fingering the rabbit fur around her new sweater. "It's so soft and warm," she says with satisfaction.
I'm sewing the extra button that came with the pants onto the waistband to make it as large as possible.
"You got your shopping trip," I say. "We found the corduroy pants."
I hang them up in her closet next to her nine pairs of elastic-waist pants. No, she didn't need these purchases, but she spends her days locked in the Reminiscence Neighborhood.
These pleasures are all she has left.

Detective Work

The mystery began not with a dead body but with a scary wake-up call.
At 7:10 am Mom woke up yelling for help and vomiting the entire contents of her stomach.
Jona called me. Because I had gone to bed at 2 am, I was still sleeping when the cell phone rang. I lept out of bed and began to dress and rush down to Ocean View.
By 7:30 I arrived in her room and began the detective work. Jona had managed to clean her up and get her dressed. I knelt in front of Mom, looked at her, and held her hands, which were shaking uncontrollably.
Was she having an allergic reaction to food or medicine, as on June 14? That one nearly killed her.
Was she okay--just having a mildly upset stomach?
Was it a 24-hour flu, something going around Ocean View?
Was it the flu shot she had 36 hours earlier?
I remembered the pistachio nuts I had let her eat the night before, likely suspects for the allergic reaction theory. But then again she had also eaten a handful of orange and black M & M's I had put out in a dish for Halloween. Maybe it was just an upset stomach from eating too much sugar.
Jona reported that Maxine, the lead caregiver for the Reminiscence Neighborhood this morning, had come in to check on her, with Ogart, the caregiver to whom Mom was assigned. He rarely has to deal with her because she has "a private," Jona.
Maxine had taken her vitals: a blood pressure of 161/71, pulse of 56, and temperature of 97 degrees. They had concluded that this event did not warrant a trip to the ER.
Jona also reported that Mom had diarrhea. "Does this mean she is more sick or less sick?" I wondered.
When in doubt, I call everyone: my sister Emily; Suzann, the RN for Ocean View, who hadn't come in yet; Beth, the director of the Rem floor. I was about to call Dr. Susan C. to leave a message asking for advice when I ran into Ilona, a caregiver fixing breakfast in the kitchen.
"Oh yes," she said. "Ralph and Bob and Dorothy had this too, the next day after the flu shot."
It all made sense: these frail old people had been affected by the flu shot on Tuesday.
I went back to the room and talked a bit more with Mom and Jona. Emily had recommended 7-Up, toast, bananas, applesauce. Mom was refusing to eat anything. It didn't look good for even taking her meds this morning, so I talked with the medicine dispenser for the floor and we cancelled the big calcium pills and vitamins for the day. At lunch we would try her thyroid, and her Coumadin wasn't needed until 5 pm.
I went home at 9 am, and Mom got through the day pretty well with no more vomiting.
But in the evening a Monte Carlo Casino Night was scheduled: hors d'oevres, drinks, live music, and professionals with green felt tables to deal cards in games of chance. I wouldn't have gone, except that I had told Connie, Mom's evening caregiver, to come at 8 pm instead of 6 pm.
At 6:30 pm I put Mom's lipstick on and wheeled her down to the big party. She was feeling better and enjoyed the music and excitement at first.
She hadn't eaten all day, so I tried to put together a plate of crackers and some of the milder hor d'oeuvres. She tried both and said they made her feel sick, but she downed three chilled shrimp with no problem at all. I ate some of the hor d'oeuvres.
At the party, we consulted with another mother and daughter, who reported that her mother had vomited on Monday, prior to the flu shot. She had asked the staff whether others had been ill--was it a problem with something that came out of the kitchen?--and met with raised eyebrows. Apparently that was not a line of questioning one could safely pursue.
At 7:30 Mom was tired and insisted on returning to her room, so we left.
Connie arrived shortly thereafter, and I helped her with Mom's shower because Mom didn't feel good. I was half expecting her stomach to reject the shrimp at any minute. We discussed why the vomiting had occurred, and with the new evidence from the other daughter, I concluded that it must be a 24-hour flu going around. I left at 8 pm.
This afternoon, a day later, however, the truth emerged.
I was in the dining/kitchen area and asked Mom how she was feeling. She felt okay and had eaten normally today.
"She was vomiting yesterday," I mentioned to Marnie, the lead caregiver of the 2 - 10 pm shift.
"Yes, they all were," she said. "The cook was sick. He was vomiting earlier this week."
"Oh," I said.
Marnie's frankness stunned me. No coverup, nothing. I appreciated that.
Anyway, the whodunnit was solved. It was the cook and a flu that had already hit many of the residents.
By the way, I'm feeling sick to my stomach tonight, not eating dinner. I shouldn't have eaten those hors d'oeuvres--or did I get it from my mother?

Drinking the Kool-Aid

"I told Miss Colorado we were going to go home pretty soon," Mom announced when I came in the room this afternoon. "It wouldn't be much longer until we got the article done."
"Oh," I said. "Did you work on your computer today?"
"Yes, I got a lot done," she said with satisfaction.
"That's good," I said.
I didn't say: "You can't talk to a doll. You're not ever going home to Colorado. You aren't writing any article or book, and you don't even know how to operate that laptop."
I've learned how to hold a conversation with someone who has dementia.
A year and a half ago, when my mother had first entered "the secure floor" of a different assisted living, I didn't know how to talk to her. I arrived to take her out in the car one day and couldn't find her sweater.
When I told Crystal, the caregiver, that I couldn't find it, she said, "Oh, your mother left it in Mary's room. She was in there trying on Mary's nightgown."
That stunned me. I learned that residents were allowed to go into any room because they couldn't remember which room was their own. They were allowed to take any item or put on any clothing they found, without being told "That doesn't belong to you."
I realized why we had been told not to leave anything of value in Mom's room.
"We just enter into their world," said Crystal, so cheerful and crazy that she seemed like a cult member. "Joe in Room 119 thinks he's the captain of a ship, so if he tells me we're at sea in the morning, I take him to the ship's galley for breakfast. If a resident says we're in Disneyland, we're in Disneyland."
Since then I've drunk the Kool-Aid. I'm pretty good at interacting with people who are way out there in Dementialand.
Mom spent about six years writing and self-publishing her memoir, Adventures of a Telluride Native (available from Western Reflections Publishing). A few years ago she started typing up her five-year diary from 1936 to 1941, but that project got bogged down as her dementia increased. Then she thought she was writing a sequel to her memoir, and now she's not sure whether she's writing an article or a book, nor does she know exactly what it's about.
She was thrilled, however, when Emily bought her a laptop, and she likes to think of herself as working on it. With the help of her caregivers, she uses it to keep a diary of sorts.
This work actually is quite important to her peace of mind. It enables her to explain to herself why she can't go back to Colorado just now: "I have to finish the article."
By the way, Miss Colorado's real name is Anne of Green Gables. She's a doll Mom bought me ten or fifteen years ago, having originally named me for this orphan heroine in the novel by Lucy Maud Montgomery.
The doll has lived in Colorado, but I brought her back to California in September.
"She wanted to come visit you," I told Mom.
Since that day, Mom has had daily conversations with the doll, who stands on the table next to the television set and whose identity has morphed into "Miss Colorado."
"Here--she wants to hold your necklace overnight," I say, hanging it conveniently from her hand.
Am I playing along in the game, or am I as far out there as she is?
I talk to dolls and plan to return to Colorado any day now--as soon as I finish one last article.

To Be or Not To Be

Rest in peace--that's what Mom wants to do on an average morning, unless she has the option of going shopping or spending time with one of her children.
She wants to sit in her recliner in front of the television, watching videotapes of her earlier life. She also likes to push the pedals on her small bicycle machine or go out on a doctor visit.
She does not want to do exercises--leg lifts, arm raises, knee lifts like marching in a chair, or arm pushes up from her recliner to stand at her walker.
Can I blame her? I don't get to the gym too often; I should exercise much more than I do.
But in her case, lack of mobility puts her on a steep incline toward death. (Come to think of it, my lack of exercise does the same--it's just that I'm further away from that end, so my choices don't seem to matter so much.)
During each hospitalization--a year ago for her broken hip, last June for her near asphyxia, last September to get a pacemaker--she loses mobility but eventually regains some of the lost ground.
The net loss, however, has put her where she is today: in a wheelchair or chair all day along, unable to walk even with a walker and assistance. The physical therapist today said that walking again is not a realistic goal; the goal is simply standing and bearing her own weight in transfers from chair or toilet to wheelchair. Right now it takes two people, or one very strong person, to manage most of these maneuvers.
The moral issue, therefore, is this: should we cajole her into doing exercises to reach these very limited goals?
Or should we let her rest, and decline, in peace?

The Steep Decline

"There will be a steep decline," said Claudia K., the neuropsychologist who has analyzed Mom's dementia for a year and a half.
"With Alzheimer's Disease there's a slow steady decline like this," she said, drawing a line inclined down at a 45-degree angle. "But with Lewy Body people tend to stay on a plateau for a long time and then go into a sharp decline."
Since that pronouncement a year ago, we've been on the lookout for this sharp decline. There have been serious medical crises--the broken hip, the allergic reaction and swollen tongue, the pulmonary embolism and pacemaker implantation. But Mom has made amazing come-backs from each of these hospitalizations.
Another factor making it difficult to notice a decline is her fluctuation in mental acuity from day to day. One day she is sleepy and can barely talk; the next day she's agitated and very talkative, reporting vivid dreams; the next day she's normal.
Today, however, I was stunned by her condition when I arrived at 3:15 pm. Perhaps because I've been out of town, I was unprepared for what bad shape she was in. I saw the steep decline.
She was nearly asleep in her recliner, snuggled in the flowered velour blanket, with the curtains closed and the lights out, but she quickly talked to me when I arrived. "Oh, is tha' you, Anne? Than' goo'ness you're here."
Her words were slurred together; her eyes opened but closed again.
"Yes, I'm here. Would you like to go out and get some French fries or an ice cream cone?"
I had a few errands to run, and I thought I would take her with me as I drove about town. I had imagined stopping by and immediately leaving with her. No way. I sat down in a chair opposite her and stared: her eyes were closing again, and she was slumped to one side, not sitting straight forward in the recliner.
"I see you're sleepy. Oh, you got your hair done this morning--you must be tired from that."
"Yes... was exhausting. The girl too' forever, washing my hair, rinsing, pu'ing i' on rollers, pu'ing me unner a hairdryer."
I decided to take Mom out anyway, mainly because I needed to make a deposit at my credit union. We started with a trip to the bathroom; then she demanded her "Kuhner's," which I finally succeeded in interpreting as V-8 juice.
She held up amazingly well while going to the dry cleaners, a gas station, and two banks--as well as polishing off a butter pecan ice cream cone. The hardest part was transferring her 120 lbs. from the toilet to her cheelchair or vice versa.
After she was out in the car riding around, while managing the drips from the ice cream cone, she seemed okay. Her speech was not slurred. The steep decline seemed to be a thing of the past--except that I noticed my own shoulder muscles were sore from lifting her. I was exhausted.
Speaking of a steep decline...

Why Aren't You Here?

"Emily, why aren't you here? I'm waiting for you to take me to church."
The cell phone call interrupted Emily's Sunday morning.
"I came to see you yesterday, Mom," Emily said. "I'm not coming today. Arlene is with you today."
Emily and Duncan are pastors. Their busiest time is Sunday morning, and phone calls at that time are forbidden. But I was out of town, and Mom was with a caregiver, refusing to believe that neither I nor Emily would show up.
After a while she called me, at the steering wheel driving down Interstate 5 toward Los Angeles. At lunch I returned her call. "I'm on my way back, Mom."
She launched into her report on calling Emily. It was just like the Sunday two weeks ago when I was out of town: Mom resorted to phone calls to assert her presence and try to elicit a response from someone.
"I'll be back tonight, late, after you are asleep. I'll see you tomorrow."
"No, come tonight. I'll still be awake."
So I did go to see her at 7 pm before arriving home. She was fine, snuggled up under a velour blanket in her recliner, watching television. I talked with her and the caregiver, Racquel. I showed Mom trinkets from my trip and cut up pieces of fudge for her, bought at a restaurant and gift shop near Hanford.
Later I learned she had continued calling Emily throughout the day, either unable or unwilling to understand that Emily wasn't coming.
Is this dementia?
Or is this her normal, controlling personality coming through loud and clear?
She still manages to manipulate me and Emily into feeling guilty and doing most of what she wants done. That was true twenty years ago and is still true today.
Maybe she's not the crazy one--we are.

Baking Rolls at 4 am

The call came at 4:11 am: "Your mom is upset--can you talk to her?"
I lept out of bed, taking the phone to another room to minimize the disturbance to John, who was trying to sleep through the event.
"Hi, Mom. What are you doing?"
"I need to take the rolls out of the oven, but this lady won't let me. She says it's a nightmare, and I guess it is, but she won't let me check."
"What oven? If you were baking cinnamon rolls, you would be baking them in my oven, here at my house. Were you baking them here, for us?"
"No, I'm a volunteer. I was making them for a bunch of children."
"Mom, there's no oven on your floor. The food is cooked on the first floor and brought up--"
"I just want to go down there and check on them but she won't let me."
"But Mom, you're in bed. It's 4 am. If you got up and went all the way down to the first floor, you'd have more trouble getting back to sleep."
"They're going to burn. When it starts to smell up here, they'd better go down and have the police turn it off, or it could burn up the whole place."
"Mom! It's a nightmare."
"Yeah, this lady thinks I'm crazy."
"You're not crazy. You have an illness that gives you these nightmares. Your brain does things in dreams that seem real, but you're just dreaming. You had too much excitement yesterday, shopping at Macy's and going to that movie. And tomorrow you are going to wear the new lavender silky blouse we bought. Isn't that a cute blouse?"
"Yes, I like that blouse. I like going shopping."
"You need to get your sleep so you can get up tomorrow and wear that lavender outfit and get your hair done. Can you take a drink of orange juice or V-8 or something and try to go back to sleep?"
"Okay, I guess I can."
"I'll come see you tomorrow afternoon."
"What time?"
"I'll come about 3 pm or 4 pm."
"Okay."
"Goodnight."
I went back to bed and lay awake for three quarters of an hour, wondering if Racquel had been able to calm Mom down, if I should stop taking her to stimulating events like movies, if Jona was already up and on her way to start her work with Mom at 6 am.

Remembering the Fifties

I took Mom to see The Prize Winner of Defiance, Ohio, today after church. It's part of my campaign to give both of us something interesting to do on Sundays when I am her caregiver from 8 am to 6 pm.
We had a lunch of canned tamales and raisin toast before driving to the Beverly Center, where it was showing. Parking and getting up the elevator to the eighth floor was exciting because AIDS Walk 2005 had just ended nearby, but we navigated the crowds and bought two matinee tickets for $13.50.
Mom just wanted to go to Macy's and Bloomingdale's, not a movie. It's not often she gets to wheel past so many sparkling store windows.
"You'll like this movie," I said. "It's about a mother with ten kids who has to raise them by herself."
Having just watched Good Night and Good Luck, I wasn't sure I'd like another film about the pre-feminist, smothering '50 years, but I figured it was right up her alley, kind of an updated Please Don't Eat the Daisies.
"I don't know what's so special about her--I had four kids and raised them," she said.
Then she announced, "I want potato chips" as I bought a cranberry drink for her and a lemonade for me. I knew she meant popcorn or French fries, but I managed to steer her past all temptations and into the theater, just at the end of the previews. She is only allowed soft, moist foods, and I didn't feel like breaking the rules and dealing with a possible airway emergency during the film.
As it turned out, she got through the whole two hours uneventfully, other than some mild choking on the cranberry juice, and she stayed awake, even though her afternoon are usually devoted to naps. After I convinced her not to talk during the show, she sat there alert, rapt the whole time. (Two weeks ago, she began asking to leave March of the Penguins half-way through the 95 minutes, but not today.)
As for me, I hardly remembered she was with me.
It turned out that the heroine was named Evelyn, slim and dark-haired as Mom had been, and her husband was alcoholic. After the first scene of him drinking, throwing things out the back door, and bashing the brand-new freezer Evelyn had won in a jingle contest, I regressed to about ten years old and sat there in paralyzed fear, hating him and wanting her to divorce him or at least get the deed to the house changed to her name, not his.
I had lived through this whole scenario, the oldest of four children watching Mom cope with Pop's alcoholism, and I knew that the film was a true story based on a memoir by one of the daughters, Terry Ryan.
Afterward I asked Mom how she liked the movie.
"I saw some similarities," she said. Pretty sharp for someone who can't even remember the names of all her children.
And we were off to Macy's, Bloomingdale's, and back to Ocean View by 5:30 pm. On the way home, Mom got her French fries.

Vampires That Come in the Night

What would you do if you woke up in your own bed and someone was there trying to take your blood?
This is the situation Mom now faces. She is back on Coumadin and her blood coagulation levels have to be checked every two weeks. I could take her to a lab to have this done, but in an attempt to avoid one more medical visit, I asked Ocean View to do it. They hired a lab that sends people out to draw the blood, and apparently the most convenient time for these people is shortly after 5 am.
Someone with a normally functioning brain might be able to wake up, listen to the explanation for the visit, and face the finger prick with a minimum amount of trepidation. Might be able.
But not someone with Lewy Body Dementia. Just waking up is a problem--that is, distinguishing between whether the events taking place are a nightmare or reality. Add to that the difficulty of enough mental acuity to absorb the explanation and enough courage to face yet another of the dozens of finger pricks and IV insertions she has endured in the past month, when she had surgery to have a pacemaker implanted.
When I visited her today, I asked if the people had come by yet to check her prothrombin time.
"I think they came," Mom said, "but I don't know if I was dreaming or not."
"Yes, they came at 5:40 am," said Jona. "Connie wrote it down in her night report."
"Oh no," I said. "They came while it was still dark? That's the second time they came that early. Sorry about that, Mom. A little scary, isn't it!"
"I don't like them to come at all. I don't want my finger pricked," she said.
And I remembered the time in December of 2004 when the night visit of a man taking blood had precipitated a mental breakdown. We had just moved Mom from Colorado into assisted living near Emily in Mission Viejo. She had been in her apartment there about two weeks when she reported being raped in the night.
"No, you must have dreamed it," we assured her. "No one would come in and bother you here in the middle of the night."
But her agitation continued, and the next night she got up at 3 am or so and sat in the middle of her floor sorting old papers and letters. When the caregiver came in at 7 am to dress her and take her to breakfast, she refused to be interrupted. Soon she was hitting and kicking the caregiver, who persisted in trying to get her ready because she had a lot of people to get to breakfast by 7:30 am.
Before we were notified, Mom had been 5150'd. The police had come and carried her away on a stretcher.
At this point we looked into what had happened the day before, and yes, a man had come into her room to do a blood test in the pre-dawn hours.
To Mom, being approached by a lone man as she lay in her nightgown asleep in bed in her apartment was terrifying. Most likely it was not a rape, but it might as well have been, given the fragile state of her mind.
Somehow, after her brush with the police, we managed to get her released back to assisted living instead of to a geriatric mental hospital. We cancelled the in-house blood tests and took her to the lab ourselves to have her coagulation times checked.
Later she was taken off Coumadin, but now after a pulmonary embolism, she is back onto an anti-coagulation program--and back in the hands of the vampires.
Once again our choices are either to get them to change the hour of their visits or to take her to the lab ourselves.

Zen and the Art of Wheelchair Maintenance

Most wheelchairs occupied by seniors don't leave the building where the person lives.
Family, physical therapists, doctors, nurses, even shrinks come to the residence. At most the wheelchair gets to the patio or around the block, so it rarely needs repair.
But Mom's wheelchair had an exciting life, thrown into the back of a van almost daily, wheeling all over Santa Irena--until today, when its wheel fell off.
Emily, Jona, and Mom were a few blocks from Ocean View, taking a walk, when Emily noticed the wheelchair wobbling a little. Then a lot.
Then the left wheel came off the axle, and Mom would have been dumped out if Emily had not been there and caught the collapsing wheelchair.

~

Note 1: Emily visits once a week; Jona goes out pushing Mom in the wheelchair every day. By the grace of God, the wheel fell off with Emily right there to help.

~

Note 2: Bill doesn't want Mom on Coumadin because Mom might fall, and any head injury with thin blood can result in fatal bleeding.
"She can't fall," I keep telling him. "She's in a wheelchair with a caregiver 24/7."
"Yesterday I did surgery on someone who was knocked out of a wheelchair and hurt. There was internal bleeding everywhere--it was a complete mess."
"She won't fall out of the wheelchair," I told him. But now, a few days later, it almost happened.

~

Anyway, Emily pushed the wheel back on and for the next two blocks managed to walk alongside Jona and Mom, holding the wheel on and calling me on her cell phone.
"The wheel came off--can you call the rental company and get them to replace it? We have to have a new wheelchair immediately."
I didn't see how this was going to work. New wheelchairs do not arrive immediately, especially when you call at 4:30 pm. I had placed a few calls to OxyTech in the last three days trying to arrange a repair, and there had been no reply to my message.
"Emily, we should just buy a new one," I countered
We debated the issue as the injured wheelchair rolled on, held up by Emily.
Finally she and Jona got Mom back to Ocean View and up to the third-floor dining room.
"I need to go to the bathroom," Mom demanded.
"No," said Emily and Jona. After any outdoor trip, we return to her room and the toilet, but not this time.
Emily ran to the parking garage and showed up at the medical equipment store at 4:55 pm.
"We're closing," announced Frank, the patient, perennially cheerful salesman.
"I need a wheelchair," Emily countered, and within five minutes the deal was made.
She walked out with a shiny new titanium blue "companion chair" with four small wheels, costing $350. "Companion" means Mom can't push it by herself, using her arms; there are no big wheels. This is okay because she is pretty much beyond self-locomotion and because the brakes are on the two rear wheels, easily locked and unlocked by someone pushing her.

~

Note 3: Maintenance of the old wheelchair was a full-time job. It had arrived on October 1 a year ago, when Mom moved to Ocean View Assisted Living from the skilled nursing facility where she had done rehab after breaking her left hip, undergoing surgery, and spending ten days in the hospital.
We had planned to buy a wheelchair, but the SNF staff told us that they would measure her and order the right one through Medicare at no cost to us.
Within a day or two we rolled out the door with a free wheelchair, as promised, but after a few weeks the brake mechanism was loose. When the brakes were on, the wheels would still slide backwards a few inches while Mom transferred into it from a chair or toilet.
I became good friends with Jeff from OxyTech, who usually showed up within a day after I called for a repair. It turned out that we had a rent-to-own plan, so he was obligated to maintain the chair. Usually a few adjustments with his tools did the job, but then the leg rests got bent and were hard to take on and off; finally one had to be replaced.
Sometimes when a repairs were needed on a holiday weekend, I took out a wrench and screwdriver, trying to do it myself. That was hopeless.
A few months ago I called for a repair involving both the leg rests and some plastic part under the seat that had broken.
"How could you break this?" asked Jeff when he saw it. "I've never seen this break before. I'll just have to replace the whole chair."
I refused to feel guilty. "We go out in the van almost every day, and I'm not strong enough to lift it gently into my van. I just kind of heave it in."
What I didn't say was, "At least she goes out--the other people who rent your chairs probably never leave a 300 square foot area."
Almost no one from the Reminiscence Neighborhood ever leaves, even for the afternoon. Out of 28 people, maybe 4-5 go out with family members or on bus excursions, and those are not the ones in wheelchairs.

~

After the purchase I called Jeff to tell him we had bought a new wheelchair and needed to end our rental contract. When he arrived to pick up the broken chair, I raised the issue of money--we had rented for a year. Didn't we own a chair by now? Maybe he owed us a working wheelchair.
"We didn't make any profit on this one," he said. "There were so many repairs, and it's the second one I gave you. This chair can't be repaired--I'll have to junk it."

"Okay," I conceded. "But I want a statement of how much we have paid, through Medicare and Blue Cross, and what the total cost of the chair was, and when we would have finished renting it and just owned it."

Jeff agreed to send a statement, and meanwhile I began calculating: 13 months with Medicare paying $59.52 per month and Blue Cross Blue Shield paying $14.88. Apparently Oxytech had received $74.40 per month, a total of $967.20, after billing $105 per month or $1365.

Was the chair's original price that much? I doubt it.

At any rate, Mom now rides in a simpler chair, with smaller wheels, arm rests that don't allow her chair to slip under a dining room table, and leg rests that do not adjust the angle at which they're inclined. It was neither the cheapest chair ($250) nor the most expensive--but it's probably what we should have done in the first place.

Fluctuation in Levels of Responsiveness

Last January I didn't much notice the line in the neurologist's report about "fluctuation in levels of responsiveness, most likely related to underlying dementia process, such as Lewy Body dementia."
I knew it was a reference to a time when Mom had leaned forward in her chair and been unresponsive for a couple of minutes while my sister was with her, frantically trying to revive her. Another time I had witnessed a milder, briefer moment when Mom's eyes were fixed, her face unchanging until she suddenly returned to full consciousness.
But it didn't occur to me that these spells would become longer and more frequent.
In the last month they have occurred twice--once on September 10 during the Bingo game, when her blood pressure, drooling, paleness, and clamminess seemed to point toward a pause in her heartbeat--and once on September 23, when she self-diagnosed, "Oh, I'm dead."
That time the leading theories were 1) a Lewy Body event, 2) a petit mal seizure, and 3) a TIA (transient ischemic attack).
Today the question was whether to increase her anti-seizure medication, on the theory that the event might have been an absence seizure. If it was a TIA, the newly started anti-coagulation program should take care of it.
Emily and I are betting that the checking-out was one of these Lewy Body "fluctuations in levels of responsiveness." Dr. Susan C. called to discuss it, and we decided not to increase the Keppra. Psychtropic meds and neuroleptic tranquilizer drugs make Mom really sleepy. "Extreme sensitivity to antipsychotic agents" is a symptom of Lewy Body dementia, and treatment with them doubles the rate of cognitive decline, according to an article in Postgraduate Medicine by Jonathan T. Stewart (vol. 113, May 2003).
The neurologist, Dr. Claudia K., had noted last January that "given Mrs. E's history of intolerance of neuroleptics, it might also be expected that she would have difficulty tolerating seizure medications as well."
But what can you do? She had seizures last June when her throat was blocked, and sleepy or not, she's been on anti-seizure meds ever since.
At least we are now expecting more of these unconscious episodes, and all of us are less likely to panic than we were a month ago.
The NINDS description of Lewy Body mentions "loss of, or fluctuating, cognition." Another article lists "fluctuating arousal and/or cognition" as a symptom. Stewart notes "unexplained loss of consciousness and falls."
We're keeping this in mind. The next time she loses consciousness and can't be roused, we will not panic or call for paramedics. If her blood pressure and pulse are okay, we'll just wait for the Lewy Body event to end.

A Good Hair Day

I rush over to visit Mom as soon as possible Monday morning, expecting her to be sitting in her recliner, bored and self-pitying.
Instead she is in the residence Beauty Salon, happily chatting with Elisa, who is putting rollers into her hair as Jona sits nearby reading the newspaper.
"Hi, Mom--I'm back," I announce.
"Oh, let me see your face," she says. She doesn't turn her neck easily any more, either to the side or to look up, and she has to see me to be sure I am really here.
I kneel beside her to get my face within her line of vision. Like a baby, she is reassured by seeing my face.
"You were gone so long," she says.
"Yeah, four whole days," I say with sarcastic emphasis.
"Well, it was long to me."
When her hair is all in rollers, we transfer her to her wheelchair and put her head under a hairdryer.
She's happy and busy, so I leave, promising to return later. She doesn't need me now.

Abandonment

I was going out of town for four days, spending time on Santa Catalina Island with some women friends.
The plans for Mom's care and amusement during these four days were elaborate. In addition to the staff at Ocean View, Mom's personal caregivers would show up regularly, changing shifts every twelve hours.
To top it off, my brother Jim was flying in from Denver. He spent time in Mom's room, took her to Denny's on Thursday, and toured the Getty Museum with her and Jona on Friday. She had a great time.
On Saturday our sister Emily visited Mom, doing some physical therapy with her.
But still Mom asked about me, noted that I was absent. I called her on Thursday and Friday, asking how she was doing and reminding her where I was.
On Sunday morning John discovered an angry message on our phone machine:
"This is your Mother! I thought we were going to church today. When are you going to see me? I'm very worried about it. I'm not on your list any more, I guess. Good-bye. Leave a message."
He called Mom and explained: "Anne's not home... She's in Santa Catalina this weekend with her friends. She'll be back tomorrow."
"Okay," she said. But she felt abandoned, and tomorrow was as far away as the moon.

Almost a Day Off

Emily was going to visit Mom today, so I expected a day off--a whole day to get things done without having to go to Ocean View. After four hours of making a doctor visit last Friday, three hours of taking her on errands Saturday, ten hours of care on Sunday, and five hours of doctor visiting on Monday, I was ready for a day off.
But Jona, her caregiver 12 hours a day, six days a week, wasn't feeling well. (How does she manage to keep up these hours, showing up every day at 6 am, always cheerful and kind? I don't know.)
Anyway, Jona told the agency she would not be coming to work Tuesday, and the substitute caregiver wasn't available.
That meant Emily's visit in the afternoon was critical; the morning and early afternoon would be shared between me and the Ocean View staff.
I decided not to call and see how things were going--just to stop by about noon. But at 11:15 am I got an anxious call from Mom.
"Hi, Mom. How are you?"
"Awful. I'm having a terrible day. They wouldn't let me come back to my room, but now I'm back here and this lady called you for me, but I can't find your phone number. What's your phone number?"
"It's because you don't have Jona today, Mom. That's why you had to stay out in the common area after breakfast."
I quoted my phone number and promised to come soon. Clearly Mom was having a difficult time just sitting out with the other residents, not having her own caregiver to talk with and to attend to her every need.
By noon I arrived with a pumpkin, a newspaper, and photos of the twins with the doll buggy.
She fell asleep about the time I arrived, but I woke her and took her to lunch. At 1 pm I left, promising her that Emily would arrive soon.
"Maybe now you'll appreciate Jona," I teased. "You keep firing the caregivers, but maybe now you'll appreciate having someone at your beck and call all day long."
Emily showed up.
The evening caregiver, Connie, showed up. I called at 6:15 pm to make sure.
Will Jona be able to make it to work tomorrow?
I feel guilty for asking her to work these long hours... but I completely depend on her to keep Mom happy for most of the day, six days per week.
The alternative would be three caregivers per 24 hours, each with an eight-hour shift, instead of two with a twelve-hour shift, but Jona seems satisfied with the long shift because of the higher income.
Jona's an immigrant from the Philippines, having completed a couple of years of college in computers before coming here. After watching her care for Mom during the past year, I feel as if she's another daughter; I should be sending her off to college, like Roz, Ellen, and Marie, rather than employing her to sit with my mother all day six days per week.
But instead I'm just hoping she'll show up tomorrow.

"You Left Me"

We had just completed a doctor visit--driving to the office building, waiting in the lobby, having weight and blood pressure checked, seeing the doctors, and having blood drawn.
And then I remembered: we had to sign up for the Coumadin Clinic.
I asked a receptionist about it, and she directed me back to another room.
"You can just leave your mother here," she said. "The room you're going to is so small."
"Okay," I said. "Mom, can you just wait here in the lobby? There aren't any magazines, but can you just wait a few minutes?"
"Of course," she said. "No problem."
So I disappeared through the swinging door and talked to the clinic manager for about two minutes.
But then Mom appeared next to me, flustered, anxious, being pushed in her wheelchair by the receptionist.
"You left me there! Why did you leave me?"
"It's okay, Mom," I explained. "I just had to talk to this lady. I'm done now. We can go home."
We went to get a V-8, stop at the dry cleaners, and drive back to Ocean View.

A Happy Day

"I should just die and go be with Kermit," Mom says every now and then, when she starts to reflect on her quality of life.
She hates not having control over her life or her own body--having to wait for someone to take her to the bathroom, having to wear Depends taken off and put on by a caregiver, not being able to drive a car or travel to visit her home in Boulder or her family cabin near Telluride, Colorado.
She was hospitalized for a week last June and again in September, each time losing more of her strength and mobility. During July and August her diet was restricted to pureed foods because her swallowing was judged not good enough for even soft, chewy foods. Potato chips and popcorn have been forbidden for almost a year.
But she finds pleasure and laughter in various things every day, and occasionally she has a great day. One of those days was today.
I had planned a special treat: letting her watch me make cinnamon rolls, the way she had done for her four children fifty years ago. I set the dough to rise before I went to pick her up.
For the first time since August, we went to church. She was not in the hospital and I was in town, available to manage her and the wheelchair.
Then for the first time in a few years, I took her to see a movie. We watched March of the Penguins, and her main comment was right on target: what about the people who filmed it? How did they cope with the cold weather and conditions? She was ready to leave about halfway through, but probably no sooner than most other viewers.
Afterward we bought Panda Express meals for lunch and took them to my house. I wheeled her up the new ramp to the front door and installed her at the kitchen table, where she ate two pieces of cinnamon raisin toast for dessert, while watching me punch down the dough for the cinnamon rolls, roll it out, sprinkle it with cinnamon and sugar, and place the cut rolls in a pan to rise.
She was falling asleep by that point, so after a difficult bathroom trip, I helped her into a recliner for a nap.
Before she could fall asleep, however, John's sister Lee dropped by with Leo and their three-year-old twins, Juliette and Jacqueline. The girls remembered the antique doll buggy they had played with last time--which had belonged to Grandma when she was their age, early in the 1920s. Soon we were all sitting in the back yard watching them push the buggy and rearrange the covers on the doll.
Mom--aka Grandma Gussie--was delighted. She was able to keep up with the limited kinds of conversation that occur around that kind of event. Elegantly dressed in her best Jones New York pink tailored coat and flowered rayon skirt and blouse, she made perfect sense. One would never have suspected she had any dementia.
"You should curl their hair," she told Lee. "I had curls when I was their age. I can show you how to do it--you take the hair like this and wrap it around a rag and then wrap the rag back around it and tie it."
When Leo gave each of the twins a turn at being held upside down, Lee and Grandma expressed equal dismay: "Don't do that! You might drop her."
We all ate cinnamon rolls hot out of the oven with milk.
And then the twins were put in their carseats and taken home; Grandma was wheeled back to the car and driven back to the secure floor of Ocean View Assisted Living.
She was tired, but she had had a happy day.

Scary Numbers

I'm waking up slowly on this Saturday morning, and then it hits me: October 1 and I haven't mailed Mom's payment to Ocean View Assisted Living.
For two years, since she moved to California and I took over her checkbook, I haven't missed a payment. It's always due on the first of the month, mailed to a billing office on the east coast, and I'm very careful about being on time.
But now I have blown it. I find the bill and write out the check: $7,267.
I must be crazy to pay this amount per month for my mother to live in a nice residence where there are caregivers, a nurse, housekeepers, cooks, and a team of medicine managers who wheel their carts around each floor four times per day dispensing medications.
But what are my alternatives? Caring for her in my own home? I couldn't even provide the wholesome meals three times per day, much less the medications and the constant supervision. And then there's John: whenever I mention the possibility of having her live with us, he puts his foot down: no.
My sister and two brothers are equally reluctant to take on full-time care. Therefore, Mom will be in a care facility near one of us, and I find it convenient to have her near me.
We have taken turns at caring for her: Jim did it while she was still living in her own home in Boulder, Colorado, and needed various kinds of assistance on a weekly basis. Bill and Sandy took her into their home for two months after she fell and got a crushed vertebra. When we moved her to California, Emily supervised her in an assisted living near her home, an hour and a half from me.
The situation changed when Mom broke her left hip in August 2004. After she spent ten days in the hospital and four weeks in Garden Grove Convalescent Home, the staff thought she should continue to live right there. After all, she needed help with showering, toileting, and transferring from a chair to the wheelchair; she had become fairly wheel-chair dependent, though the physical therapist had been able to get her walking 200 feet with stand-by assistance several times per week. The price was right--$4-5,000 per month, about the same as her income.
But Mom hated being there. Could we leave her in a nursing home for the rest of her life? We toured other possibilities in the area, but even the nicest SNFs look like a hospital. The nurses station is central; floors are linoleum; most people are in wheelchairs and pretty grim-looking; IV poles abound.
The price tag of Ocean View Assisted Living didn't look so bad when we figured she might not last there too long. We heard statistics that most people her age who break a hip don't live more than a year afterward, so wedecided to try for assisted living as long as possible. After all, she has a monthly retirement income of $4721 and a healthy nest egg from selling her home in Boulder four years ago.
It became a calculation of how long she might live vs. how fast we were using up her financial resources. She's 86 years old and in pretty good health except for her diminishing mobility and her diagnosis of Lewy Body. Which will run out first, her money or her health?
Early in October, 2004, we moved her into Ocean View on the memory-impaired, secure floor at the maximum level of care. She's surrounded by beautiful interior decoration and nice carpets. No nurses station is to be seen.
She spends most of the day in her private room, surrounded by her own furniture: her bureau covered with earrings and necklaces, a table full of mail and framed photos, a glass doll cabinet, an elegant black desk and chair, a television, walls with family portraits. Three times per day she wheels out to the cheerful dining room, passing the living room with television and fireplace. From the patio, in addition to various apartment buildings, there's a glimpse of the Pacific Ocean.
My greatest fear was that she wouldn't last even a month--that after moving all her furniture and clothes into the studio apartment, she would fall or have a health crisis that would take her right back to the hospital or a SNF.
Sure enough, she fell within a week after arriving. She couldn't remember that she needed a wheelchair or walker. If the staff left her sitting in an easy chair or on the toilet, she would get up and try to walk--and fall. If she were put to bed for the night, she would try to get out of bed to go to the bathroom. Full-length bedrails and restraints, either in bed or in a wheelchair, are not allowed because Ocean View is not a nursing home--it's not licensed for such things.
With a ratio of 4-5 caregivers for 25 residents, however, the staff could not watch Mom while she was on the toilet or in her recliner napping or watching television, which was where she wanted to be most of the day. She hated going to group activities in the common area.
When she fell for the third or fourth time, without any serious injury that would send her back to the hospital, I decided to hire a personal caregiver at night in addition to the staff at Ocean View.
I figured we could afford to pay the high monthly fee, plus $14 per hour for someone to keep an eye on Mom at night, for a few months. If she made it to Thanksgiving, or even Christmas, we could always move her to a nursing home early in 2005 or whenever her money ran out.
Somehow she made it, month after month, but only because we added a personal caregiver for 6 am to 2 pm, in addition to 6 pm to 6 am. At 2 pm I showed up to visit her, and at 4:30 I left her sitting in the dining room for dinner. That meant four hours of care that we didn't have to pay for, as well as all day on Sundays, when I took her to church and to my home. Emily did the 1-2 hr. drive to spell me one or two afternoons per week.
When summer came, I took a few weeks off and began paying for personal care around the clock. Bill and Jim visited, but none of us felt like saying, "Okay, it's time to save money by moving her into a nursing home."
So that's how we arrived at October 1, 2005, and a bill of $7,267--not counting the personal caregivers.