Inside the Dementia Epidemic: A Daughter's Memoir (14 page)

Now on the phone, Sharon tells me about her own mother who had dementia, and was “much, much worse” than my mother. “I was always on the phone,” she says. “Your mom is really doing very well.”

I know she wants to reassure me, but I feel as if she’s being condescending, as if I have little to feel stressed about and am being a bit of a baby. I measure the level of my anxiety about being my mother’s caregiver by comparing my new role to our hands-off relationship in the past, not to how I might feel if her condition were to become worse in the future. I don’t yet understand—how far and how fast will my mother decline?

M
y mother enjoys the two-hour drive to the park, but once we’re there, hardly anyone talks to her, not even Nadine. Nadine is the same age as Mom but looks twenty years younger. One of my cousins asks me if Mom has Alzheimer’s disease. I spend the afternoon holding my mother’s hand to weave between the picnic tables, to make sure she doesn’t trip on a table leg or a small child. I find her a warm spot next to the fireplace and bring her hot chocolate and plates of food. When Mom gets up to walk around and I grow tired of following her, I can see her talking with Nadine. Nadine smiles, points out the door toward another building a hundred feet past the parking lot, then turns away from Mom. I figure out that Mom is looking for the bathroom. As she heads outside by herself
I sprint the length of the pavilion to gently grab her arm and steer her around the broken chunks of sidewalk.

I leave disappointed in our relatives for ignoring Mom, but perhaps it’s more of a challenge than I realize for people to connect with my mother. If I met a relative I hadn’t seen in forty years or had perhaps never met, and they looked as pale and lost as my mother did today, I probably wouldn’t go out of my way to talk to them either. I’d be nervous about what to say, perhaps even a little afraid.

The reunion makes me wonder whether something similar happens at Greenway when the independent residents mix with the assisted-living residents. I wonder if the staff encourages the two groups to interact or if they remain apart like boys and girls at a seventh-grade dance? Though Greenway has a new activities director, she serves the whole facility and can’t possibly have the time to give the assisted-living residents the attention they need. For extra help, the facility relies on the student volunteers; in rare instances families hire private aides. Residents such as Mom, who shy away from activities, just sit in their rooms or watch TV most of the time.

O
ne day, Daphne, the case manager, calls me to convey some of her concerns related to their annual report for the state. Her main concern is that when she does sign Mom up for activities and remind her of them, at the last minute Mom refuses to go.

“Your mom’s dementia is no worse than several others’ here,” she says, “so I’m not sure what’s going on.”

She tells me that she’s paired my mom up with a student again, but it has been difficult for the girl to see Mom because Mom sleeps late in the morning and reads in bed for part of the afternoon.

She asks about Mom’s medication for depression and whether she’s seen on a regular basis by a psychiatrist. I tell her that Mom had a mental health evaluation a month earlier and was judged to not be depressed and to have a mild memory impairment of about ten to twenty percent, enough to make taking care of herself difficult. I remind her that Mom also saw a psychiatrist when we were making the decision to move her to Greenway a year ago.

“If she saw another psychiatrist she’d probably just charm the doctor,” I say, “making them think she’s fine.”

“Yes, you’re probably right,” she says and laughs. “I could see your mom doing that.”

“Plus, her life now is really much better than it was when she lived alone, and even when she lived with me. This is a great improvement.”

After a moment Daphne gently asks, “How often would you say you see your mother? Your mom told me, ‘I don’t remember the last time I saw Martha.’”

My breath deflates as if I’ve been pushed in the chest. Though I know my mother can’t remember, her words still hurt. I struggle to answer Daphne without sounding defensive.

“I just saw her this past weekend. I took her to a family reunion. The weekend before that,” I rattle off, growing more agitated despite my effort to conceal it, “I took her over to the cottage where she saw an old friend. We go out to lunch and dinner, to concerts, she comes over to our house for dinner, she sees her dog.

“My mother will say to me on the phone, ‘It seems like so long since we talked,’ when it might be just a few days since I’ve seen her. She just doesn’t remember.”

Daphne listens, then says softly, “Okay.”

I’d like Mom to get out more, I think to myself, but I can’t be the only one taking her out and connecting her to the world. My neighbor, Lydia, has driven across town to see Mom once or
twice at Greenway, but with her children’s busy home schooling schedule she can no longer visit. Daphne and I have talked before about my perhaps finding someone through a list at the Women’s Resource Center of people who are available as caregivers to come and visit Mom, maybe take her out on errands or to cultural events. My only concern with this option, and the reason I haven’t followed through, is safety: A paid companion would have to be extremely watchful whenever Mom is outside the flat landscape of the Greenway hallways—even walking to the parking lot is hazardous because of her slight weaving now from side to side. If Mom were with a paid companion and fell, broke a bone, a hip, a leg, her health might decline rapidly. She remains one of the more mobile residents on her floor, and I’d like to keep it that way.

“I don’t know what else we might try,” Daphne says. “I’ll keep reminding her about activities and then I’ll walk her down if she’ll let me.”

“I guess that’s about all we can do. Thank you.” I consider asking Daphne to mail me their weekly events calendar; I could call Mom and encourage her to go to the activities. It feels like too much, though, for Daphne and for me.

A
t the family reunion I saw for the first time not only how alone my mother looks in a crowd but how frail she seems compared to others her age. At seventy-four, Mom is relatively young to be this frail. Is her frailty caused by the tiny strokes, Alzheimer’s disease, or something else?

I read in the
New York Times
that elderly people who appear to be in good health—who’ve had no heart attacks, major strokes or cancer—can still be disabled by frailty. Cardiovascular disease blocks circulation in the brain, other organs, and the extremities, resulting in fatigue, weakness, cognitive difficulties, and a slow walking pace. That sounds exactly like Mom.

Frailty may be avoided or delayed by exercising, maintaining healthy levels of blood pressure and cholesterol, and not smoking. When my mother lived alone she had a number of factors working against her: her two-pack-a-day habit, her sedentary lifestyle, and years of sugary junk food. And I realize now that she may have been too confused to keep track of her medication, one of which was for her high blood pressure. If her doctor had alerted me to her confusion a few years earlier, perhaps this frailty could have been prevented. Or perhaps not.

A
s I think of my mother’s inactivity the past fifteen years, I try to imagine myself when I’m her age. I owe it to myself and my family to avoid this kind of frailty if I can. My blood pressure is fine, and aside from a puff or two in my teens I have never smoked. But at five feet six I’m nearly eighty pounds overweight. I didn’t know until two years ago that I have insulin resistance and slightly high blood sugar levels, precursors to diabetes. I’ve now started to walk the land around our village an hour every other day; I walk two miles from my office to where I park my car downtown. I’ve returned to my nutritionist to monitor the amount of carbohydrates I eat and help me lose weight.

B
y the end of 2006, my mother has moved into Stage Five of Alzheimer’s disease—moderately severe cognitive decline. (Again, I don’t realize this until several years later.) As with most people in Stage Five, Mom still remembers details from her life, and she doesn’t need help eating or using the toilet, but she can’t remember what day it is, she needs more prompting in the shower to clean herself, and she could use more help than this assisted living facility can provide to dress appropriately. She seems to wear the same ancient pair of pants all the time—light-blue polyester pants with
navy piping around the hip pockets, slightly flared at the bottom, hold-outs from the seventies. When we go outside, she doesn’t remember to wear a jacket or hat, unless prompted.

O
n New Year’s Day, I take my mother out for what I hope will be an easy lunch, nothing special. I figure I can pick Mom up at 11:30 and bring her back by 1:00. I’ll coax her to sign her rent check, help her put away her Christmas gifts if she hasn’t already, and be home by 2:00. I’ll bring the dog so Mom can get some enjoyment out of seeing Trinka. Then, in the afternoon, I’ll read and enjoy the rest of the day before returning to work the next day.

I’m fifteen minutes late arriving. I find Mom strolling out of the dining room. She leans down to love up the dog then gives me a brief hug. She’s wearing the same pants, and her ancient, stained light-blue Keds, even though I gave her new, identical Keds for Christmas. Her hair still badly needs a cut; maybe she’s forgotten how to walk down the hall past the auditorium to the hairdresser to schedule an appointment, as she would a year ago. It’s another warning sign I’ve missed.

At the restaurant, Mom reaches for a packet of sugar, opens it, slowly pours it into her spoon, and eats it.

I say, “Why do you need to eat that when you are going to get dessert?”

“Because it tastes good.” She opens another packet, pours it, and eats it.

After the waitress takes our order, Mom says for the third time how wonderful Trinka is. “She’s such a great dog!”

“Yeah, she is.” I frown, then say, “Do you feel the same way about me?” I can’t help myself.

“Well, I’m not sure what to do with you today. You’re a bit grumpy.”

“I’m just tired,” I say, but I think to myself, yes, I can be a grumpy, grumpy daughter. And that’s okay sometimes. I’m allowed.

When we order dessert Mom spies the biggest sundae on the menu, with five scoops and three sauces, and says, “That’s the one! I should have just had that and skipped everything else!” I worry that the other diners will look at me as if I’m taking poor care of my mother, letting her clog her narrow arteries with even more saturated fat.

I won’t discover for quite some time that, for my mother’s dementia, we might have more to blame on the sugar than the fat. But then, my mother’s deterioration has outstripped the startling new research that implicates pre-diabetic blood sugar levels in dementia (more on this to follow).

Back inside the front entrance at Greenway, the air is thick with heat. To the right in the main sitting room two women doze in upholstered chairs, their walkers standing sentry beside them.

Upstairs, her room is also too warm. Feeling as if I could suffocate, I help her replace her old wall calendar with the new one she got for Christmas, and I encourage her to wear the new Keds. I also got her a second pair of Keds in bright pink that remind me of the red clogs she used to wear at the cottage. About the pink ones, she says now, “They’re nothing I would wear. Maybe Morgan would like them.” I ignore her opinion and tell her, “I bet if you wear them to dinner, you’ll get lots of compliments.” I realize later than Mom still has strong preferences for what she wears, that I can’t shop for her as if she’s a toddler.

I ask her if I can use her bathroom. On the counter by the sink I find her contact lens case with the shriveled lens inside. A year ago we picked out glasses frames but didn’t buy them. She insisted at the time that she would wear her contact lens, and I didn’t
remind her all the time. I decide now it’s time to insist on glasses and another eye exam.

I sit at her desk to write a check for her rent. Her desk is covered in old photographs—not in frames, just piles. I should put these in boxes, I think, before she dumps them in the wastebasket. A year ago when I sent her bank, which is out-of-town, a copy of my Power of Attorney and a letter requesting that I be able to sign her checks, I never heard back from them, so I continue to get Mom to sign her checks. I really should just give the bank a call, but I’m so cautious with my time I don’t want to take even ten minutes to call them. It’s silly, as I waste more time convincing Mom to sign each check.

When I get ready to leave, I hug Mom and kiss her on her forehead, and she hugs me back; she reaches up and gently presses my cheeks between her palms, as if to hold me still, and kisses me on the lips.

“Thank you for all your help, my dear.” She keeps holding my face, and tries to look into my eyes though I want to look away.

“You’re welcome, Mom. No problem.”

I end my visit, as I so often do, feeling both tender toward her and eager to escape. As I close the door I glance back. She has turned toward her bed, and her thin frame, cream-colored blouse, and white hair recede into the white of her walls, the light from her window, the whiteness of her many hanging socks; with her back towards me she seems to have already forgotten that I was there.

I want to step back in, touch her shoulder, have her turn and smile at me, but I don’t move. This little room with her bed with its piles of books, I think to myself, this narrow slice of space, this is her home now, her sanctuary. I know that she needs peace and quiet. I should leave her to her own life, such as it is, as much as I can. I wait a moment more. With her back still facing me she lifts a magazine from the bed and studies its cover. I pull the door shut.