Inside the Dementia Epidemic: A Daughter's Memoir Read online

  “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.

  At 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.

  As 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.

  By 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.

  On 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 pref
erences 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.

  Not Their Job

  An eye doctor tells me that my mother must have had cataract surgery in her right eye; the implant now rests slightly askew. I vaguely remember, perhaps ten years ago, Mom telling me about the cataracts. Surgery isn’t necessary, the doctor says, but glasses will make a big difference.

  Mom puts on her new bifocals and I hold her arm as we walk to the car. As I drive her to lunch she keeps taking the glasses off, pushing them on top of her hair, the way she used to wear her sunglasses, like a tiara.

  At Greenway, I help her pay more bills and she places the glasses on her desk. “You’ll see so much better if you wear them,” I say, but she leaves the glasses on the desk. Frustrated, I kiss her goodbye on the cheek. Down the hall, I ask the RAs if they could please encourage her to wear the glasses, though I doubt that they will have time to check.

  I realize later that my mother is not being stubborn; she’s not ignoring me because she thinks she knows best. Mom has never worn prescription glasses, only contacts. Her physical memory of glasses is that movement of pushing sunglasses up into her hair. To her, glasses belong on top of her head on a cloudy day when she’s driving, on her desk when she’s home. She may not be able to learn, to remember, a new habit of wearing glasses all the time.

  A week later, the physician’s assistant in Dr. Claiborne’s office, a bearded man of about sixty, dons latex gloves and slowly strips off Mom’s socks. The source of the pain in Mom’s left foot is apparent: Her nicotine-yellow toenails are half an inch too long, thick and hard; some curl under. I flush, embarrassed, as if I’m a neglectful daughter who doesn’t make sure that her elderly mother’s toenails are properly groomed.

  The PA tells me that thickened nails are a common development in the aged—caused by a fungus—and that Mom must see a podiatrist to get the nails clipped and treated.

  From then on, it seems, Mom’s life becomes a series of medical crises. In March, Daphne calls me to tell me that my mother’s left knee and right ankle are swollen and she’s having trouble walking. No one knows for sure if she fell, but I assume she rolled out of bed. Soon after she moved to Greenway, Mom began to pile magazines and books from their library on the inner edge of her bed against the wall. She seems to need more and more reading material around her because she’s unable to read anything to the end. The stack extended the length of her bed and rose a foot high, with a second stack along the length of the first. She had a space only two feet wide along the outer edge of the bed on which to sleep. I pictured her scrunched up on her side, elbows and knees tucked in tight to her body. She’s taken off the bed rail, the one Ben and I gave her, and stuck it in her closet.

  “I don’t need it,” she says. I suspect that the RAs are not allowed to move residents’ belongings, and that each time they change her sheets, they replace the books. A few months ago I finally ignored Mom’s protests—“Just let it go; I can take care of it”—and pushed two full carts’ worth back to the library. Now the pile is back.

  While we wait for the results of an X-ray Mom needs to go to the bathroom but is unable to walk so I ask for a bedpan. The nurse’s assistant slips it under Mom but nothing comes out. As the nurse and the nurse’s assistant stand there waiting, Mom jokes that maybe she should just “twiddle” her fingers “down there” to get something to come out. I feel my cheeks redden. Mom might be making a reference to masturbation. I don’t yet realize that people with dementia often make inappropriate sexual remarks. I think it’s just my mother being flaky.

  Because Mom can’t go in the bedpan, the nurse and assistant have to help her get up, transfer her to a wheelchair, and roll her across the hallway to the bathroom. I feel like I should help, but as I’ve never helped Mom in the bathroom before, I’m sure I’d fumble and embarrass myself or her.

  The doctor tells us that she has a sprained ligament in her knee and her ankle will be fine. She’ll need a brace for her knee and a walker for a few weeks. He recommends that Mom have someone stay with her around-the-clock while her knee heals to make sure she doesn’t fall down again. When I tell him that Greenway can’t provide that kind of supervision he recommends hiring a private aide.

  I must look distraught because he looks at me and says, “I’m so sorry. This must be very hard for you.” I nod, unable to talk. I’ve heard so much about falls, especially broken hips, leading to nursing home placement that I fear this might be the beginning of the end for my mother. I’m completely wrung out.

  I appreciate the doctor’s kind words to me. It’s the first time that any doctor or nurse has talked to me about my own stress. Back at Greenway the RAs let us borrow one of their walkers. A visiting nurse will help her exercise her knee. Ignoring Mom’s objections, I fasten the bed rail back on her bed. At home, I look up a private home care agency in the phone book and arrange twenty-four-hour shifts. Then I retreat. I want to pace myself and delegate as much as possible. I resist making extra trips to Greenway to help Mom exercise. I expect the Greenway nurse to call me if there’s a problem. I still think it’s up to these other people to track her progress, not me. But am I wrong?

  Mom doesn’t remember that she fell; the home care agency tells me that she resists using the walker, and because she’s forgotten that she hurt her knee, she can’t understand why the private aides follow her around all the time. When I come to visit, an aide tells me that once, when she reminded Mom to use her walker, Mom snapped back, “Why don’t you use it?” Understandably, by seven or eight o’clock at night, Mom gets tired of her constant companions. During the day, she enjoys chatting with them and the extra attention, but after dinner I bet her circuits overload and she just wants to be alone. When she gets testy with them, the aides tell her that, per their instructions, they must stay with her at all times. I don’t think about how intrusive this must feel to my mother, how sh
e might even feel scared.

  One night the agency calls me to tell me that Mom has shoved an aide out of her room; another night they tell me she’s slapped an aide. I’m disgusted, remembering that one time she slapped me on the face when I was a teenager, but the agency tells me they are used to “resistance.” We decide that if Mom gets upset again, the aides will just leave the room for a few minutes and let her calm down. I’d rather cancel the aides than let her be abusive.

  I find it hard not to judge my mother harshly for her behavior. I’ll learn soon enough that private aides often do not receive enough training in dementia care to avoid triggering these moments of “resistance.” I’ll learn that, if the person with dementia grows agitated, sometimes you really do need to walk away for a few minutes, even if it means they might fall.

  After three weeks Mom no longer needs the knee brace, the walker, or the private aides. Though she weaves a bit once in a while, it’s the same slight weaving she’s been doing for a few years.

  Three blessedly uneventful months pass.

  When both of my writing groups disband for the summer, my writing slips to a halt. Then, at work in mid-July, I receive a call from Greenway that precipitates a return to the pen. Sharon, the head resident assistant in Mom’s section, says, “We’re very concerned. Your mother has refused to eat or drink anything for twenty-four hours. She just threw up at the dining room table.” She tells me that my mother also peed in her pants in the hallway. As far as I know she’s never been incontinent. “She’s also weaving a lot more when she walks.”

  I immediately drive Mom to the emergency room. She seems not to be in pain but she’s pale and weak; her speech is more confused than normal, and her belly looks swollen, as if she’s five months pregnant. The nurses suggest it’s just constipation or dehydration; Mom should feel better after she gets some fluids, they say. They expect that, if there were a serious problem with her abdomen, she would be in pain when they palpate her stomach, but she doesn’t feel anything.