Inside the Dementia Epidemic: A Daughter's Memoir (9 page)

A
ndrew, 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.”

I
n 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.

D
an 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.

T
he 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.

F
inally, 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.

W
hen 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.

I
n 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.

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.

Those good memories do not stand in the foreground. I remember instead a dreary atmosphere, shades of gray like my stepfather’s old farmhouse, filled with unhappiness. Bats once flew through my second-floor bedroom, mice and squirrels lived in all the walls, and moles burrowed up through the floor inside the cabinet under the kitchen sink. I was afraid to go into the kitchen at night lest I see the moles’ tiny beady eyes looking up at me. In my bedroom, the ancient, stained floral wallpaper peeled off in sheets.

I
n the outside world, my mother flourished. She worked at the local elementary school as one of the first special education teachers in the state. She loved the freedom of being a pioneer in a new field, and the intellectual challenge of creating her own curricula from scratch.

When I was in third grade, my mother left my stepfather and rented a ski cabin in Vermont, where the two of us lived by ourselves for my third-grade year. She found a job teaching at the school. By my fourth-grade year, Mom and my stepfather must have reconciled because we were back at the Adirondack house.

The summer before my sixth-grade year, Mom and I packed our belongings and moved over two hundred miles to live with my grandfather, his new wife, Laura (my grandmother had died three years earlier), Laura’s eighteen-year-old son, and her elderly mother. My mother and I shared a queen-sized bed in their tiny house and tried to stay out of the way. I did not know it at the time, but my grandfather was dying from lung cancer and heart disease.