"Try to imagine what it would be like to wake up in the morning without your memory."
Suzanne gives me a moment to conjure up my bedroom -- the way the morning light peeks through the blinds, the weight of the covers on me as I wake -- where I'm warm, and most likely needing to pee. As I place my cat Bix -- purring -- next to me in my imaginary morning, I stumble on the paradox: in the act of imagining the loss of my memory, I am using my unlost memory like crazy. That's Suzanne's point. We depend on our memories to guide us through every moment of every day. We spend our infanthood learning the basics -- how to suck and swallow, how to chew, how to walk, how to recognize hunger or pain, and how to communicate our needs to others. What we learn -- and what we remember -- gains sophistication, subtlety, as we progress from infant to toddler to child to young adult.
Suzanne is here because I'm worried about my mother. She's just 70 years old -- a retired educator -- and her memory is failing her. "From everything you've told me, your mother still remembers the basic things to do when she wakes up in the morning. But there may be some parts of the sequence missing. She may have forgotten that part of her routine is showering. Or eating breakfast. Or it may be that she just can't remember or manage the sequence of steps we follow to take a shower or make breakfast. You and I don't think about our morning routines -- we just do them -- but every day, we rely on a process of remembering and following a sequence of steps."
I've told Suzanne that I have been worried about my mother's nutrition, and her words are confirming my worst fears: my mother has most likely forgotten not only how to prepare food but also when she needs to eat. As for the showering in the morning, well, that hasn't been a part of my mother's routine for some time. I've wondered whether her smoking has so blunted her sense of smell that she doesn't realize just how ripe she is. And I've been chalking up the reluctance to shower to her fear of falling, or to the trouble she has climbing over the wall of the tub, or even to the way her hip makes it difficult to stay balanced in a standing position.
I've been looking into shower chairs, handrails, and other assistive devices with which we might retrofit her tub. In the meantime, I have been inviting her over to my house for a once-a-week dinner, shower, and sleepover. I crank up the heat, make sure the water is running hot, and help her into the tub. She's wrapped in a towel at this point, which she hands to me only after she instructs me not to look. Obedient, I reach in for the towel, then stand on the other side of the curtain in case she feels unsteady. I hand her a facecloth, remind her to use soap, remind her to scrub her underarms. When she says she's done, I reach in again to turn off the water. Then I hand her back the towel.
"Don't look at me. I'm naked!" she says.
"Not looking, just providing the linens," I assure her, doing my best to give her privacy and dignity in this operation. I have warm clothes ready for her as soon as she steps out of the tub -- I'd put them in the dryer just before I turned on the water. She's always cold, and often she uses this as her excuse for not showering.
"I'll just shower in the morning at home," she'll say to me, and even though I know this will never happen, I'm still not sure whether she is just trying to shut me up or whether she actually believes, in that moment, that she will shower the next morning.
I've tried different techniques to persuade my mother to give up her always-smelly clothes and to put on some pj's, but on some nights I realize I can't win. She will crawl under the covers of the pullout bed and tell me she doesn't know how I can stand to live in such a cold house.
On the mornings when she wakes up in her clothes, I know better than to suggest a morning shower. "Are you kidding me? Wet hair on a day like this?"
"Mom, you need a sponge bath." The terminology dates back to my grandmother, and maybe for this reason, my mother is marginally less resistant to the concept.
"Oh, I'll do that when I get home."
"No, Mom. I need to get those dirty clothes off you and into the laundry. Plus, you are a little stinky." This is the phrase she finds least insulting, and sometimes the idea of being a little stinky even makes her laugh.
"That's just my natural fragrant aroma. I smell like violets," she says, grinning.
"Stinky violets. Let's get you washed up and changed so we can go out to lunch."
"The ladies who lunch," my mother says.
"Exactly, and they don't let stinky ladies to lunch."
She giggles and allows me to lead her to the bathroom. I help her take off her top, unbuckle her sad little threadbare bra. I have a warm, soapy washcloth ready. I work on her back, her arms, her underarms.
"The inability to keep up with personal hygiene is one of the classic signs of Alzheimer's," Suzanne tells me, "and family members are often most bothered by this particular change in behavior."
Several months ago -- it was in the summertime, when she was willing to take off the sneakers that she would wear to bed if I let her -- my mother complained about not being able to see her foot doctor.
I reassured her I was working on the health insurance issue. "But if you need to see him now, maybe we should check to see how much he costs without insurance," I added.
"Oh, he's too much money, even with insurance! A hundred and fifty dollars just to cut my toenails!"
"I'm sure he does more than cut your toenails."
"Oh, he shaves that thing on the bottom of my foot, but what I really need is a pedicure."
"Let's begin with a good washing," I suggested. I had the washcloth -- warm, soapy -- ready. We were in her living room. She was seated on the loveseat with the New England lighthouse upholstery. I was seated at her feet. I pushed her ancient sneakers and socks away from me to eliminate some of the unpleasant odor, and I began.
"Your nails are kind of long," I said, Mistress of Understatement. "This may take a while. I'm going to wrap one foot up so you don't get cold while I work on the other."
"Whatever you think." My mother, relaxing into her mini foot spa, was agreeable.
I considered the possibility that this situation might require professional intervention. I was afraid her nails might not fit under my clipper or that they might be too hard and resist cutting. I was worried that I might hurt my mother. But I forged ahead, making several passes on each toenail, and in about twenty minutes my mother's feet were in good shape. I suggested another quick footbath, applied more moisturizer, and pulled clean socks onto my mother's feet.
"How much do you charge for that?" she asked me.
I don't share the foot story with Suzanne. It seems too personal. But it's another example of my not knowing what to think.
Were my mother's unkempt toenails a function of her inability to reach her toes, or her inability to ask for help, or her inability to remember that she needs to do something about her toenails? And her attachment to those rotting sneakers -- I've bought her two new pairs, one white, one black, but she will not give up the pair with the floppy sole and the growing hole on the side of her big toe. She claims the new white sneakers aren't as comfortable. "And the black ones just look like death."
I feel locked in this constant process of evaluation. How much of my mother's behavior is long-standing? How much is new? How much is harmless eccentricity? How much stems from physical incapacity? How much from diminished mental capacity? For a while now, I've understood that my mother is experiencing some form of memory loss, but I have been careful not to label it. Not only out of fear, but also out of some misguided notion of respect.
Now Suzanne is using the term Alzheimer's, and despite everything I have read, everything I have observed about my mother, I'm having trouble hearing that word.
"Is it true that a definitive diagnosis of Alzheimer's is impossible until the point of autopsy?" I ask Suzanne.
"It's technically true you can't see Alzheimer's in a living brain, the way you could see a broken bone or a tumor. But we know enough about the disease and the way it progresses to be able to diagnose it on the basis of changes in behavior, and a CT scan tells us something about the physical state of the brain."
I know from the reading I've already done that forgetting, in an Alzheimer's patient, follows the reverse path of learning and remembering. First we forget the most recent things we've learned -- what we had for lunch, perhaps -- and then we forget how to make lunch. Next we forget we need to eat lunch. Ultimately, we will forget how to eat lunch. In the end, we will forget the first things we learned in this life: how to suck and how to swallow.
No one dies of Alzheimer's. The disease does not ravage the body the way a terminal cancer does. Alzheimer's patients simply forget how to stay alive.
Without round-the-clock supervision, a late-stage patient could choke to death. Without a feeding tube, she could starve. It's a horrible, horrible outcome, and one I hope my mother will not experience. Yet I understand this is a possible future for my mother, for me.
When I share what I know -- and what I fear -- about this disease, Suzanne tells me that Alzheimer's is a long-lived, slow-moving illness. "The difference between Alzheimer's and other forms of dementia is that Alzheimer's is progressive and predictable."
She explains that in the medical profession, there is some dispute in the staging of the disease process but general agreement that the disease progresses in identifiable phases. "I prefer to think of four stages. We can determine, through various tests, which stage your mother is in, and then we will have a better sense of what the future might look like. My guess, based on how you have described her, is early stage two. Now each stage can last from three to seven years --"
"Seven years?" A quick calculation: if it took seven years to reach this point, and my mother takes seven years to pass through each stage -- we could be in this for twenty-one more years. My mother will be nearing ninety, and I will be sixty-six and possibly four years into my own process of forgetting. "Don't worry about that right now," Suzanne says, and I wonder whether she is reading my mind. "It's easy to miss the early signs, especially if the patient lives alone. And I suspect some part of your mother's dementia is what we call vascular dementia -- that means the blood supply to the brain is inadequate. It's common with smokers. Vascular dementia is less predicable, because there is no telling exactly what part of the brain will be affected by the diminished blood supply. My guess is your mother has a combination."
Suzanne encourages me to call my mother's doctor and to visit some assisted living facilities.
"Can I hire you?" I ask her as she is gathering her stuff to leave.
She suggests we talk after I visit Sunrise and Pocasset -- two assisted living facilities. "The grant covers a little more time, so let's do a follow-up call after you have more information." My question was impulsive, and I'm grateful for her measured answer. It's clear to me that I need Suzanne on my team.
What's not clear is how I can afford her time.
"You have a beautiful home," she says just before she leaves.
"Thanks. And thanks so much for your time and expertise."
"You'll be fine," she says with surprising conviction. She smiles. "Talk to you soon. Remember," she adds, "you never have to be alone in this."
I nod and smile, but the truth is, as I watch Suzanne get into her car, I feel alone. Alone and a little aggrieved. Scared out of my mind and overwhelmed.
I close the door. Alzheimer's. God, I hate that word.
Kate Whouley lives and writes on Cape Cod, where she also works as an independent consultant in the book industry. Her first book, "Cottage for Sale, Must be Moved," was a Book Sense Book-of-the-Year nominee. An avocational flutist, Kate volunteers as a facilitator for the Cape and Islands Arts & Alzheimer's initiative.
Excerpted from Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia, by Kate Whouley (Beacon Press, 2011). Reprinted with permission from Beacon Press.
Shares