alzheimer's

You Don't Get What You Pay For

October 21, 2014 by Suzanne Churchill 4 Comments

One thing we’ve learned about Alzheimer’s care is that you don’t get what you pay for. Quality of care doesn’t correlate to cost of care.

For instance, my Mom was getting excellent care in the assisted living wing of the retirement village she lived in, a few buildings away from my Dad’s apartment. The facilities were lovely: she had a spacious, private room with an elegant seating area composed of Aunt Opal’s Queen Anne furniture. The staff was friendly and supportive, offering daily activities and keeping the place and residents clean and comfortable.

Despite the good care, in less than six months, Mom started falling. One of these falls happened when she was trying to stand up from a chair to her walker. She fell on her knee, fracturing her femur at the hip joint. From there, she went to the hospital, to surgery, and to the rehabilitation wing for physical therapy, costs mounting every roll of the wheelchair.

In physical therapy, she failed to make enough progress for the doctor to clear her for weight bearing activities, so in one of the great ironies of advanced modern medical care, the staff stopped exercising her, and the insurance company refused to pay for any more physical therapy.

Mom was left to lie in bed or lifted to sit in a chair. I don’t have photos from this hospital stay, but my sister’s report etched a vivid mental image of Mom slumping, bra-less in a loose shirt and stretch pants, her hair unwashed, no makeup or jewelry, listless and incoherent. For my mother, who always cared so much about appearances, her unkempt state must have been viscerally disorienting. She could not have felt like herself. The physical inactivity further assaulted her cognitive functions, since, according to my friend and colleague Dr. Kristi Multhaup, an expert in the psychology of aging, the single most important thing you can to do improve cognitive functioning is to get aerobic exercise.

Fortunately, my watchdog Dad intervened and managed to get her more physical therapy. Eventually, she was approved to move back to the assisted living wing—provided that he hire a private caretaker to assist her 24/7, which would make the total cost of her care $20,000 a month. Obviously, this was untenable.

Never fear, the retirement facility assured us, we can offer a more affordable option: a quad room in the nursing wing could be had for a mere $12,000 a month. Even if we could afford this option, the idea of my Mom sharing a room with three strangers in a dreary facility whose halls smelled faintly of urine was appalling. Dad considered moving her back into his apartment. My sister and I pounced on that idea like two lionesses competing for the kill. No way.

Then someone told Dad about another facility, Arden Courts, a home for people with dementia in Hamden, Connecticut, about 20 minutes away and, coincidentally, across the street from Whitney Center, where my godmother Millie Reilly lived out her last days with Alzheimer’s. In this cheerful, clean, smaller facility, Mom could have a private room for $6000/month. For less than 1/2 the cost charged elsewhere, at Arden Courts, they dress her beautifully, do her hair, encourage physical activity, and make sure she participates in other activities. Even the food is better. You can see from this picture how lovely she looks, brightening with delight at a surprise visit from my brother and her youngest grandchildren.

Mom’s situation is not unusual. According to Jane Brody, the “quality and extent of services may still vary widely” among dementia wings in nursing homes. The price also varies, in no direct relation to the quality of the services.

As good as Arden Courts is, $6000 a month is hardly a bargain rate, and we are very lucky that Mom has long-term healthcare insurance. Others aren’t so lucky: my neighbor’s cousin just visited from New Hampshire. Her mother, who has Alzheimer’s, is being cared for by her 89-year-old father. She works full time and drives 1 1/2 hours round-trip to check on them every other day. New England winter weather only makes the drive more imperative, since she must shovel their driveway so that her father, who still drives, won’t slip and fall. They have no long-term health care insurance and can’t afford the kind of care my Mom enjoys. So the other lesson Alzheimer’s teaches us is: you don’t get what you can’t pay for.

There is a gaping hole in Alzheimer’s care, and at some point, we’re going to need to address this as a society. People are living longer, and people are living longer with Alzheimer’s. We need to find ways to make Arden Courts available to all families suffering from the ravages of this illness.

Are You My Mother?

December 12, 2013 by Suzanne Churchill

This photo was taken in October 2013, the last time I saw my mother. She looks just like herself, doesn’t she? That’s because I had just washed and styled her hair for her. (Although Dad had been reminding her to take showers, I’m not sure if or with what she’d been washing her hair.) I also picked out her outfit and helped her put it on in the right order. (She’d put on the wool cardigan without a blouse under it.)

I look like myself, too, if a bit red-nosed and puffy eyed. You see, I’d been crying. We’d just taken Mom on a tour of the assisted living wing, “The Hearth,” where she would be moving next week. I had willed myself to be strong and cheerful, but as soon as I walked through the door the tears brimmed up and over and would not stop. I wasn’t upset by my immediate surroundings. Rather, I was crying backwards, for my godmother Millie who died of Alzheimer’s in 2007, and forward, for my mother, whose Alzheimer’s guaranteed her the same fate.

The last time I visited Millie, she was in the assisted living wing of Whitney Center, sitting vacantly in a wheelchair. I had expected that she wouldn’t recognize me, but I thought she would still greet me with a jaunty, “Oh, hello!” Instead, she was utterly absent. Here, physically, was Millie. Yet she was gone.

At the time of this photo, Mom wasn’t gone yet. She still had her sweet, cheerful, anxiously do-gooding personality. She still recognized me. Speaking coherent sentences was difficult, as was comprehending anything but simple, concrete sentences. But she could still apprehend and communicate feelings: though her facts were often wrong, the emotions were true. Given how disoriented she was in time and space, however, I wasn’t sure she understood that she’d be moving to the Hearth—permanently and without Dad. But she knew that something was up, and she had mixed feelings about it. “I just want to make sure I can leave if I don’t like it,” she said in a jarring moment of clarity. “You’ll like it, Mom,” I replied evasively, more hopeful than confident, “You won’t be lonely here, and you and Dad can enjoy each other’s company again, without so much stress.”

Entering the Hearth with Mom felt like the first step in letting her go. Now, two months later, I feel like I’ve lost her because her new home has terrible cell phone reception and no WiFi. Cell phone service no longer matters: we’re past the point where we can communicate meaningfully by phone. But sitting face to face via Skype, I feel like I can still connect with Mom. No matter how garbled the words, we can still see each other’s expressions, gestures, and emotions. This will change, of course. The last time I Skyped with her, Mom told me I looked different. Meaning: I don’t look familiar to her. Meaning: soon she won’t recognize me.

“Gone” is the language we use to describe the effects of Alzheimer’s. After a bad patch, when Mom didn’t recognize Dad—thought he was the gardener, though we never had a gardener—he cried and said, “she’s really gone.” Then, on an another day, “she was almost like herself again.” But the following day, she chose to stay and finish watching a movie with her new companions, rather than joining him for their ritual glass of sherry. Was she turning down an invitation from her husband of 50 years, or from a strange man who, in that moment, she did not recognize? And if she didn’t recognize him, was it Mom who turned down the invitation, or someone else? Was Mom “gone” again? Will she reappear? When will she resurface for the last time?

These unanswerable questions suggest the inadequacy of our language, both for dealing with Alzheimer’s and for embracing the complexity of selfhood. Alzheimer’s is a disease that, in attacking the brain rather than the body, destroys what we think of as the essence of the self. How much of ourselves resides in memories of our life experiences and in our ability to recognize the people we love? If I can’t remember my life, my lover, or even my own name, am I still myself? If I’m “gone,” but my body still breathes, eats, and sleeps, who has that body become?

This fear of losing the self rests on a false understanding of selfhood as something bounded and constant, rather than permeable and changing. David Hilfiker, who writes a blog reflecting on his own Alzheimer’s, draws attention to this common misunderstanding of selfhood in Western culture:

Buddhist teachings remind us that there is no constant “self.” (See my “Letting Go of Self.”) The Western idea that our self stays the same throughout our life just isn’t very accurate. In fact, our self changes continuously and dramatically throughout our life. The Buddhist teachings point out that clinging to any particular self-image is sure to bring suffering because the self will not fit the desired image forever. Let it go!

We change throughout our lives, in mind and body. Twenty years ago, I was not a mother or a professor, now I am both, and someday I will stop being a professor, but keep being a mother. My fear of heights has gotten worse, and my fear of embarrassing myself has lessened, though I’ve had plenty of practice with both. And I used to love chocolate, but hate wine and coffee; now, fortunately, I love them all. Have I mentioned my grey hair?

We are always changing, and Alzheimer’s accelerates the rate of change, rendering it more palpable and volatile. Other degenerative diseases have similar effects, diminishing the capacity of the body rather than of the mind. When a person with ALS wakes up one day and can’t move his arms or legs, we don’t say, “he’s gone.” So when my Mom wakes up one day and can’t recognize me, I won’t say, “she’s gone.” I will know she’s changed, and so have I.

But the immeasurable ways in which we have changed each other—molded each other’s selves through the impressions (including the bumps and bruises) we’ve left upon each other along the way—cannot be undone. I like to think that, even when she can no longer recognize me, Mom is still carrying me with her, if only in her muscle memory. And I’ll carry her with me for as for as long as I can remember her and as long as my heart beats.

Basement Elegy

November 17, 2013 by Suzanne Churchill 1 Comment

A Christmas play staged in the basement, c. 1978 (the only basement photo I have). — A Christmas play staged in the basement, c. 1978
(the only basement photo I have).

My dad and siblings are cleaning out my parents’ basement this weekend. I get occasional texts from my sister with a photo of an Irish wool sweater, or the nurse’s costume Nana made me one Halloween, so tiny it looks like it was made for a doll: “Do you want this?” No, to the wool sweater (I’m allergic). Yes, to the nurse costume (I’m nostalgic). But I really don’t want anything that’s in the basement; I want the basement.

The basement has been such a basic fact of my existence that I didn’t recognize its significance until its dismantling. In my earliest memories, it was a dark, cool, mysterious place, reserved for my father’s tools and model train set. It was a dangerous place, too. We were forbidden from going barefoot, lest we step on a stray nail or fallen screwdriver. My father’s fraternity paddles hung ominously on the wall, marking his terrain. If we misbehaved, his deep voice threatened, “Do I have to go downstairs and get the paddles?” I later understood that Dad would have never hit us with the paddles, but at the time the threat convinced me that the paternal rule undergirding our household could extend its reach to the domestic realm upstairs, where my mother’s gentler authority reigned.

Although the basement was a shadowy place, its power was reassuring. It held everything my father needed to fix things; everything my mother needed to make holiday meals and wrap presents; everything we needed to go skating on Baummer’s Pond in winter, or for a picnic at Lake Quassapaug in summer, including the big, red plastic cooler with the initials HFW neatly printed in indelible blank ink. Once, when I was very small, I was in bed with stomach bug and Dad was in charge of my care. He was working on a project in the basement, and I called down to him to ask a question. He heard my voice, assumed I was throwing up again, and bounded up the stairs with the force of a giant. I was embarrassed by the misunderstanding, yet deeply reassured by the protection that rose up from below.

When I was in middle school, we moved to a bigger house with a bigger basement. This one had space for all my dad’s tools and my mom’s household supplies, as well as a play area for kids. We got the old day bed with the beige vinyl seat cushions and a barrel for the “dress ups”–a stash of 1950’s fancy dresses and shoes we’d acquired from church rummage sales. My sister and I would dress up, play Donna Summers on the speakers my father had rigged up in the ceiling, and twirl around the cement poles. Hot stuff, baby. I’m talking about the bad girls, yeah. My brother had his own area for Legos, the Fisher Price garage, town, and school, and all the accessories that went with them.

Just before I started high school, we moved to a new town and a smaller house with a basement and a crawl space. My parents took over the basement, and our dress ups and toys were relegated to the crawl space, where we would pull them out if they were needed for a skit, costume, or school project. But we’d outgrown our need for a play area and found the nooks of the crowded basement more useful for storing a small stash of illicit alcohol.

After my sister, brother, and I all moved out and established our own households, my parents paradoxically moved to a bigger house with the largest basement of all. My father’s workshop expanded, and my mom’s household supplies spread on expansive open shelves. The play area returned, now reserved for grandchildren, who received the same prohibition about not going barefoot or venturing into “Granu’s” territory.

Last September, we moved my parents to a retirement village, delighted that they’d secured a unit with two bedrooms and a full basement, brighter and more finished than any basement they’d had before. The place was beautiful, with lots of windows and a sun porch overlooking a meadow surrounded by woods. My mom, now diagnosed with Alzheimer’s, would have a smaller home to navigate and access to more activities and services. And my father would have his basement to work on his trains, knowing she was safe and comfortable upstairs. The haven lasted only a year. My mom’s illness advanced, and my father’s stamina eroded. This October, we moved her to assisted living, and now my father is moving to a smaller, less expensive apartment—without a basement.

I’ve been living in North Carolina for 18 years, where basements are rare. Our house has a small dugout for the furnace and hot water heater, accessible only through a trap door in the kitchen floor. We’ve no space to store the trappings of my parents’ household, and I wouldn’t want all that stuff, anyway. What I want is for the basement to be there—that non-magical, underground room of requirement, where I can find whatever I need, if ever I need it. And the next time I go to Connecticut to see my parents, the basement will be gone.

The Strange, New World of Alzheimer’s

October 2, 2013 by Suzanne Churchill 3 Comments

My mother was diagnosed with Alzheimer’s disease almost two years ago, and her cognitive functions have declined steadily ever since. The disease is relentless, incurable, and inscrutable, but—as my friend Kelly Chaston said of the nonsmoker’s lung cancer that took her life when she was only 48—her illness is not a tragedy. More than 5 million Americans over the age of 65 have Alzheimer’s, and my mother is one of the lucky few who, like Kelly, has excellent health care, financial resources, and a supportive network of family and friends to help her cope. Her situation is not tragic, but it still has pathos.

My mom was a reader and a talker. I don’t mean that she was a chatterbox, but rather than she lived in language. She read voraciously, preferring classic women novelists like Jane Austen and Barbara Pym, who were wise, witty, and wide-ranging, yet respected the limits of etiquette. She encouraged us to talk about our problems and express our feelings, and she loved to talk about and analyze interpersonal relationships. I suspect that in some ways life was for her an Austen novel, where relationships tip out of balance or fall off course, but the right dose of prose can set all things aright, especially if applied with a sense of humor.

My dad, on the other hand, is a fixer. He can fix just about anything, from a leaky faucet or a faulty wire, to the broken window panes of the dollhouse he built for me, after my two-year-old brother poked his stubby fingers through each window. My dad constructs elaborate model railroads, with tiny buildings, tunnels, and mountains; he built a dulcimer and learned to play it; and he and a friend built a steamboat, which he toots around a lake in Maine. After he retired, he learned to fix meals so well that we hardly noticed when, somewhere along the way, my mom forgot how.

As mom was able to do less, my dad did more and more: not just the cooking, but the laundry and the housecleaning and the calendar-keeping and the birthday-present giving and the Christmas letter writing and the emailing and phone calling. He can do all these things, but he can’t fix mom’s Alzheimer’s. When she wants to go home, he can’t make her understand that she is home. When she wants to call her parents, he can’t make her understand that they’ve been dead for more than 20 years. When she’s looking for Fred, he often can’t make her recognize that he is Fred. He’s wracked with frustration and grief, and yet he can hardly finds words to express his emotions: my mom always did that for him. And now my mother can hardly find the words for anything. She doesn’t read much, and speaking gets harder every day. Thoughts flutter across her consciousness, darting away before the words can form. When the words come, they often form a familiar syntax, but don’t make semantic sense.

So that’s the pathos: a fixer who can’t fix, and a literary mind deprived of language. Their 50-year marriage, a partnership that withstood job losses, illnesses, depression, deaths, parenting crises, and alcoholism, seems at last to have met its match: a disease that upsets the balance between their complementary strengths.

It’s taking a toll on me, too. I’ve inherited my mom’s love of language and my dad’s drive to fix things. Most of my life, I’ve operated under the assumption that, if I can find the right words and arrange them exactly, I can fix anything. This disease has driven me off course into a strange, new world, where words, despite their magic and power, can’t fix the problem. I can’t think or talk my way out of this one. Instead I’ve got to feel my way through it.