Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  In the last years she lived at the cottage she covered her desk with sticky-notes to remind herself of tasks and appointments—“Phone Martha,” “Feed Trinka,” “Doctor, Tuesday 4:00.” Although this habit may have been obsessive-compulsive, I know now that many people with early-stage dementia leave notes everywhere to help themselves remember things.

  According to her medical records from Dr. Gavin, a psychiatrist had her try Nardil and Depakote for the depression and anxiety, but the drugs never seemed to help, or they gave her noxious side effects such as shaky hands. For the last few years, Effexor seemed to have smoothed her anxiety and lifted her depression.

  During the time period when she tried these medications I lived hours away from her, and on the phone and in letters Mom would sketch only the briefest description of her struggles—to spare me, I think, from worry.

  I wonder now if Mom was living then with the very early stages of Alzheimer’s disease—Stage 1, “normal functioning,” and Stage 2, “very mild cognitive decline,” as described by the Alzheimer’s Association, or Stage 1, “preclinical Alzheimer’s disease,” as described by the international workgroup led by the Alzheimer’s Association and the National Institute on Aging. No one noticed, but the disease might have been starting.

  In 1997, when Mom was sixty-five, both Dr. Gavin and her psychiatrist noticed some confusion and memory lapses. A CT scan of her brain showed mild damage, probably from tiny strokes. A neuropsychological exam at a medical school two hours away reported “minor word finding difficulties, somewhat slowed information processing, and diminished sustained attention.” According to their report, Mom had spoken to her doctor and psychiatrist about her concern that she’d withdrawn from all social activity, stopped cleaning the cottage, spent too much time on her paperwork, and felt overwhelmed by any decisions involving money. The report also mentions that Mom had a few incidents with her car that I didn’t know about, such as minor fender benders, and being stopped by the police for weaving. Her sleep was erratic, and she had trouble concentrating on tasks such as following recipes. She showed “mild depressive symptoms characterized by sadness, irritability, fatigue, ruminative thoughts, and decreased decision making.”

  Because of her “excessive attention to detail and orderliness,” the evaluators found her to have obsessive-compulsive personality disorder. And in her “rapid, excessive speech” they saw evidence of “hypomania.” On the phone Mom would talk on and on about how I should invest in mutual funds, or, when I visited, what groceries we should buy for our meals, and often I could not help but insult her by looking away or huffing in impatience.

  When the evaluators had called to ask me how I thought my mother was functioning, I told them I had noticed that she had difficulty remembering how to buckle her seat belt. And I was “concerned about her judgment,” according to the report, after an incident the year before when my mother took the bus to New York City to visit Ben and me and one-year-old Andrew. She had offered to baby-sit while Ben and I went out for dinner, but then left Andrew alone, toddling around the apartment, to go outside and smoke. That day I was more than concerned, I was livid.

  Their exam concluded that her primary problem was not a “neurodegenerative dementia such as Alzheimer’s disease,” but her obsessive-compulsivity and hypomania. At that time, they thought my mother could still live alone.

  Looking back, I can see that, despite the exam’s conclusions, Mom had passed Stage 2 of the Alzheimer’s Association description of the disease—very mild cognitive decline—and was most likely in the beginning of Stage 3—mild cognitive decline. Though the symptoms were minor, she showed the tell-tale difficulties of finding words, performing tasks, planning, and organizing.

  In the last five years my mother lived at the cottage, Ben and I and the kids stopped visiting the house itself because we knew the cottage was so cluttered there would be no room to sit down or eat a meal together. Mom would meet us half way at a restaurant, or she’d drive to our house. She also never let any friends indoors. Her best friends, Bill and Susan, owned a cottage two doors down from her, yet when they came over she’d chat with them outside on the chipped concrete steps.

  On one rare evening when I visited the cottage, I found her sitting at her desk working on piles of paperwork. The bulb in her lamp had blown, and she hadn’t been able to figure out how to replace it. Perched on a ream of paper and folders on the corner of her desk was a slender, flickering candlestick.

  Frayed

  It’s late April in 2005, and my mother may sound and act like an adult but is now, in essence, my third child. I would like her to function as an autonomous adult, but she can’t. She doesn’t want to be dependent on me, but she is.

  We argue again one morning before I leave for work. When I returned to work after a being a stay-at-home mom, I hired a housecleaning crew to come in every two weeks. Today I ask Mom to get out of bed before the cleaners arrive at 9:00. I want them to be able to get into her room and her bathroom. She refuses to get up.

  “I’m paying for the whole house to be cleaned,” I say. “If they can’t get into two of the rooms there isn’t much point in having them come.”

  Mom glares at me. “You’re so bossy. So manipulative.”

  “And you’re stubborn, Mom.” My voice rises and I say a few more things I regret before leaving to seethe in the car. I feel angry and depressed all day.

  At the kitchen table, later in the evening, we talk. Mom felt bad all day, too.

  “I feel guilty for being such a pain...when you’ve done so much for me,” she says. “I know I can be difficult.” She starts to cry. “I don’t want to go back to the cottage.”

  I get up to hug her. “It’s okay. I want you to be happy here.”

  “I’ve felt so scared. I’ve felt worse...the past couple of months.”

  “I know, Mom.”

  “I think I should stop smoking. I know I shouldn’t smoke in my room.” She adds, “I think the cigarettes are affecting my memory.”

  Yes, I think to myself, they might be, but it’s too late now. I’m impressed, though, with her willingness to quit.

  “How about we don’t buy any more after this?” I say.

  “Okay, honey, let’s not.”

  I’m feeling more positive, but my little girl, Morgan, no longer likes Grammy living in her house. She tells me that Grammy tells her what to do, to clean up after herself, and not always in a nice way. The tension between my mother and my daughter seems to echo the stress between my mother and me when I was a child. As Mom’s anxious perfectionism and her drinking used to push us apart, Mom’s dementia will prevent her from learning from her mistakes with her granddaughter and from growing closer to her. She will forget what upsets Morgan and be unable to avoid the same patterns in the future.

  Andrew, on the other hand, does not seem to mind Grammy, maybe because he had more of a relationship with her when he was a toddler, before her memory got worse; the two have a connection that Morgan and Grammy do not. Andrew remembers sleeping over at the cottage with Grammy by himself when he was three years old. Mom set up her pup tent on the front lawn next to the steps and squeezed the two of them inside. Andrew remembers that night fondly, even though, around four in the morning, Mom told me later, she climbed out of the tent and went inside to her own bed, leaving Andrew alone in the dark. Andrew woke up with the rising sun and managed to find Mom inside, apparently without feeling scared, but I was incredulous.

  I call Family and Children’s Services to see if one of their counselors can come talk with Mom and me about how things are going. FCS has a small division to support family caregivers with counseling and respite. They can send a volunteer to stay with Mom for a few hours while I get away, but as I already get out of the house every weekday to work, I don’t need respite. I need more people to talk to who understand the stresses of caregiving.

  Mom and I meet with an FCS counselor in my living room. She suggests the Adult Day Program and the city’s
Meals on Wheels, and I tell her Mom rejected both. The counselor says I am already doing many good things for myself (the support group, the psychiatrist, hiring Lydia), and congratulates me. Mom has little to say. I take the counselor aside and tell her that I’d like to meet with her a few more times, alone. “That’s fine,” she says. “Our main concern is you, the caregiver.”

  In early May I attend a presentation at work called “Elder Care.” I’m fortunate to work for a large university that hosts a wide range of life-balance workshops for its employees. Dan, the facilitator of my Alzheimer’s caregivers support group, leads the presentation. He explains what basic ADL’s, “activities of daily living,” are: eating, bathing, dressing and undressing, toileting, continence, walking, and transferring (getting in and out of bed or a chair, for example). I note that at this point my mother needs no assistance with ADL’s. Except for her short-term memory loss, and the beginning of long-term memory loss, she is in pretty good shape.

  Dan points out that many people mistakenly believe that either Medicare or Medicaid will pay for their long-term care needs when they age. Medicare, however, pays only for short-term medical care—hospital stays under 100 days, rehab, and limited at-home care and therapy to recover from a short-term illness or injury. When you stop getting better or stop making improvement in rehab, Medicare ceases to pay. Medicaid, on the other hand, a joint federal and state program with much variation from state to state in requirements and benefits, will pay for long-term care, but only when you’ve drained your savings and become impoverished. Until you’ve “spent down” your assets, the only way to pay for assistance with long-term care such as bathing, dressing, and toileting is out of your own pocket or through a private long-term care insurance program.

  My mother doesn’t have long-term care insurance, and never talked to me about it. I doubt she would have felt that she could afford the premiums. In any case, it’s not clear to me if she would qualify for benefits. Most long-term care insurance will start to pay benefits when the person needs help with two to three ADL’s, and Mom needs help only with “instrumental activities of daily living” (IADL’s) such as shopping, cleaning, and transportation. However, most policies will also begin paying for care if the person’s doctor determines that they are “cognitively impaired” and in need of frequent supervision to ensure their health and safety (for example, assistance with cooking so they don’t go hungry or leave the stove on). In that case, Mom would likely have qualified for a part-time aide even when she lived at the cottage.

  But I won’t understand any of this clearly for several years. I will look back and remember those plastic-wrapped plates of food that sat untouched in my refrigerator, and I’ll realize that Mom ignored them not because she was distracted but because she could not remember how to work the microwave, or even how to find the food or follow the instructions on the sticky notes. I will realize that my mother was already cognitively impaired when she lived with us, and I will come to forgive myself for my denial. Even as dementia shares my table, my home, I fail to see.

  The tension between us increases and our exchanges soon take on the form of bickering. Mom and I argue over small things—how much dog food Trinka should eat so she doesn’t get fat, why I read a book instead of listening to her complaints—and the bickering escalates into the increasingly common ending of my mother locking herself in her room.

  One night, I knock on her door and call “Dinner time!”

  Through the door I can hear her say, simply, “No.”

  “Is there anything on your mind?” I ask.

  “I don’t want to get into it right now.”

  Living with my mother means that I must watch what I say, my tone of voice, my expression, to avoid condescension. I feel as if I’m a child again, reading her face as she drank. Is she in a good mood, or is she angry with me? Have I done something wrong? Now, I resist falling back into that habit. I stay away from her as much as possible. I remind myself that I am human, that I cannot always react with grace.

  Finally, I snap. We are driving home engaged in another endless petty argument. “You need to mind your own business,” Mom snaps. “You can never keep your mouth shut.”

  My breath grows tight. “You know, Mom, you don’t appreciate the work I do for you.” I exhale sharply. “Maybe, if you think I should mind my own business...maybe you’d be happier living somewhere else.” This is the first time I ever suggest that she move. In this moment I know in my gut that I cannot do this any longer.

  I grip the steering wheel tighter. “I can’t be a martyr, Mom, and live like this. It’s not fun, you know, not knowing when you’ll think I’m being helpful and when I’m going to piss you off.”

  As my voice climbs higher Mom falls silent, shrinks down into the passenger seat, and stares straight ahead.

  What I don’t realize yet is that Mom and I clash partly because I’m still using reason to explain things to her. I speak to her as if her short-term memory is intact and she can follow a logical argument. It will take me awhile to master more artful ways of communicating.

  When Mom moved in with us I never imagined that I would become not only the main provider of her food, shelter, clothing, prescriptions, medical appointment schedule, and transportation, but also her primary source of entertainment and social engagement. I finally begin to realize that coordinating my mother’s life is a part-time job in itself, and one for which I am not qualified. I could hire a geriatric care manager to oversee some responsibilities for Mom, but they cost anywhere from fifty to two hundred dollars an hour, and I’d have to supervise what they did anyway.

  Mom may be better off, feel less like a “piece of shit in the corner,” if she lived somewhere else, with me visiting often but not being in the middle of her life every day.

  At my caregivers’ support group, Dan says that when people with dementia move to assisted living it may allow them to conserve their independence longer. “Moving into assisted living might free them up,” he says. “It may lift them out of burdens they no longer want.” In my home Mom seems to carry the burden of feeling unnecessary and in the way. But if we tried assisted living, would I be trading one kind of guilt for another—guilt about being so tired of listening, about feeling profoundly bored hearing the same things over and over, for the guilt of leaving her alone?

  If Mom continues to live with us, will Morgan suffer because Grammy gets annoyed with her? Will my relationship with Ben suffer because of the daily stress of Mom and me butting heads? He’s been keeping out of our way as much as possible, but in his own home, how long can that last?

  I meet with a social worker who helped me several years ago when I struggled briefly with the post-partum depression. I tell her I suspect that having Mom live with us was a bad idea. The counselor says that she’s concerned not only about my stress level but also about my daughter; living with my mother could affect Morgan’s self-esteem over the long run if Mom is grumpy with her, telling her what to do.

  “It’s all right to have your mom live with you for now,” she says. “You had to do something. But not for the long-term.”

  I know she’s right, but I feel a twist of panic over the uncertainly of what will happen next.

  In a staff meeting at work I’m close to tears because I feel so overloaded at home I have to turn down our department’s director when she asks me if I’d be willing to take on additional work. Normally I get bored easily and ask for more responsibility than my job requires, but now I tell her, “I’m too worried about my mother. I can’t take on anything extra. When things settle down, you know I will step back up and do whatever you need.” In the back of my mind I’m thinking of my boss’s “family first” policy, how she told me when she interviewed me that, in her department, family always took priority over work. And beneath my boss, the assistant director is a woman who lost her mother to Alzheimer’s disease. I feel both embarrassed that I’m falling apart, and determined to assert my need for less pressure. I’m lucky at
work to have these two women who understand.

  I attend another class on caregiving sponsored by the Office for the Aging. Dan, the facilitator from my support group, leads the discussion again, and I nod in recognition when he talks about the effect of caregiving on “life balance.” He says, “adult children of aging parents recognize the shift in their role more quickly than do spouses or partners caring for each other. Adult children are more likely to question the effect of their caregiving on their life balance and to recognize stress.” Yes, it has taken me only three months to “question the effect” of caregiving on my life. An arrangement that seemed logical to me at first now feels destructive for everyone.

  Family Week

  I’ve read that we tend to remember the bad things that happen in our lives while the good things dissolve into mist. As primitive humans remembered the colors and patterns of poisonous snakes, our modern brains tend to recall moments of pain and sadness more easily than pleasant memories because we are hardwired to try to avoid those situations in the future. I’m sure my mother and I spent time together in my childhood that was pleasant and loving, more than I remember. I know that when I was a baby she was an early member of La Leche League and nursed me until I was two. I know, because of my father’s mental illness, that my mother was forced to support our family, that he was abusive to her, and that each afternoon after her teaching job she would find refuge in cuddling with me. I know that when I was four, and she married my stepfather, Mom took me swimming each summer at a “secret” swimming hole in the Adirondack woods, and held me on her lap in the sun. I know that when I was five and six she gently knotted my wet, freshly-washed hair at night in white socks to make it curly, brushed it in the mornings into pigtails, and tied ribbons in bows around the rubber bands. I know she read me nursery rhymes and fairy tales from the Golden Treasury of Children’s Literature, and sang to me, and taught me to bake.