Inside the Dementia Epidemic: A Daughter's Memoir (13 page)

My favorite place to sleep was in the twin bed closest to the windows in the upstairs bedroom overlooking the lake. I’d crank open the windows and tuck myself under the musty wool Army blankets. The wild night air smelled of fish scales, seaweed, and miles of deep, roiling water. With yellow light from the kitchen glowing through the slit of the stairs, I drifted off to the lapping of the waves on the shale, the adults laughing below me, the clink of liquor glasses on Formica.

I
arrive at Greenway with the cottage album to find Mom skimming a novel in the tiny, two-room library. She still reads, but has trouble remembering anything longer than a newspaper article. She often waits in the library for lunch and dinner to start across the hall. As usual, Mom greets me with a big smile, and her hair is brushed and neat, her bright pink sweater youthful-looking over her slim hips. She coaxes a friend to sit next to her and look at the
photos with her. Catherine is a quiet eighty-year-old with flyaway brown hair and a lop-sided black headband, one of the women who share Mom’s dining room table. The three of us sit at the only table in the library, me leaning across one side, Mom and Catherine together with the album between them on the other side. Mom points to each photo, and the long-term memories must come easily on this day because she explains the history to Catherine in the focused, teacherly manner she must have used with her students years ago.

Every few minutes, my mother cranes her neck to check the clock over the bookcase: She cannot be late for dinner at 4:30, she says, or “they will come looking for me.” Dinner is so early for the assisted-living residents, I suppose, to make room later for the independent residents. Five more residents slip into the library, not to read but to sit, hands folded in their laps, in a row of chairs against the wall, to wait until the meal is ready. I glance over at them to see if perhaps they are enjoying my mother’s little history of our family, but only one man is paying attention, and he looks annoyed. The others, all women, stare down the hall toward the dining room.

Will my mother end up like them? I wonder, waiting for dinner with nothing to do, no interest in reading, no reason to talk to anyone? At this moment my mother seems more alive than anyone else in the library—maybe, I imagine, in the whole building. She blazes like a cardinal in a flock of barn swallows.

A
s the months pass and soften my memories of the stress and tedium of Mom’s time in our home, the guilt I managed to bury when I moved her to Greenway begins to resurface. I start second-guessing myself. Is assisted living the best place for my mother to live? Have I abused my power to influence her decisions, consigned her to a hollow semblance of life? I never thought I would resort to segregating my mother from the rest of the community in an old age home. It feels like defeat, like giving up, and it nags at me.

I
n November, as an employee at the university I take an undergraduate writing class on “The Art of the Personal Essay.” I quickly find refuge in writing, but also discover it can be a direct conflict with any extracurricular activities with my mother.

I call my mother to tell her that I cannot take her to visit the cottage today as I’d promised, saying, “I’m not feeling well and I have an essay due.” I picture her sticky-note on her desktop
calendar (“Martha, cottage”), and to make the call I have to fight an overwhelming surge of guilt.

Mom surprises me. She says, “That’s fine, honey. Feel better.”

Relieved, I return to my laptop. I tell my kids that if they interrupt me I will have to bite them. “Oh—in your thoughts,” Andrew says. “That’s okay.”

When I am completely still except for my fingers tapping up and down on the keys, when I am completely absorbed by the process of writing, and hiss at Andrew and Morgan to be quiet, my only fear is that my children may remember me when they grow up as a frowning, snarling mother in an armchair, drunk on words.

Once, while I spend four hours writing an essay, Ben does all the work of getting Morgan ready for a sleep-over: setting up the tent in the backyard, inflating the air mattress, cooking dinner, making them a snack, walking Trinka before bed. At 9:00 he growls, “Why do
I
have to do all this crap?” My steadfast, mild-mannered husband does have his limits.

A
nother day, the dirty dishes are overflowing, the laundry is backed up, Trinka is leaking pee on the carpet, and Morgan is begging for a school friend to come over to play. I’m supposed to email another essay to my classmates by 4:00, but I don’t feel like writing. The day before, I spent the meat of the day running errands with my mother. At my kitchen table, we went over her bills.

“I think it’s time...for me...to hand the cottage over to you,” she says.

“You already did, Mom. Last year. We went to the lawyer’s office and you transferred the cottage to me.”

“I don’t remember.” She looks as if she’s about to cry.

Later she says, “I want to go home, but not back to
that place
.”

With another prick of guilt I pretend I don’t hear her. There’s no point talking about “that place” again; Greenway seems like the only option. Another move might hurt her more than help her.

Ben can see that I’m exhausted so he offers to drive Mom back to Greenway. I hope that Mom won’t mind my absence, but she says, “You’re not coming? I need you. I want
you
to take me.” She looks at me with a sheepish smile.

“You’re like my mommy. I need my mommy.”

My stomach twists. In that moment I don’t want her to need me. I don’t want to be the only one she wants. I don’t want to do this anymore.

Her smile collapses and her brow wrinkles. “How awful...that you have to be my mother and I’m the child.”

I take a breath, and feel my annoyance slip away as quickly as it appeared. I didn’t think Mom was aware of this shift in our roles. I feel both gratified that she has finally recognized this shift, and awkward, embarrassed, as if I’ve been caught pretending to be something I’m not.

“No, Mom, you’re still my mother, and I’m still the child.” A quick dissembling, but, at the deepest level, true. I give her a weak smile and loop my arm through hers. I feel tender toward her again, and decide to bring her home myself.

As we walk up the path to the car she turns to me. “I don’t know...how all of this...is going to work out,” she says.

“I know, Mom.” I’m at a loss for words. I stop to hug her and walk the rest of the way to the car with my arm around her shoulders. It’s first time I’ve ever held my mother that way. Sometimes the only thing I will be able to do for her, I think to myself, is to be close to her, to touch her.

I drive her back to Greenway feeling fiercely protective and close to tears. In the dining room, where dinner is about to start, I find no staff members to give my mother a hug as they often do.
An RA appears at a distance and glances at us but doesn’t say hello. Mom’s tablemates fiddle with their napkins, oblivious.

A
year after Mom moves into Greenway, I extend the gaps between my visits from one week to two. Looking back, I’m surprised that I visited so infrequently. In these early years of my caregiving journey I am still in denial about the extent of my mother’s decline, and still estranged from her. Each of us has been used to living separate lives, and once my mother settles into her own routine at Greenway, I return to mine. I make sure her bills are paid, drive her to appointments, and take her out for an occasional lunch, but the rest of the time I stay away. I convince myself that she has a full life with new friends, her books, the craft classes, concerts, movies, and visiting students. Though the “assistance” in this particular assisted living facility seems sparse, I assume that Mom is getting whatever daily help she needs. But is she? I don’t know, and years later I’ll regret this lapse in my vigilance.

E
ven though I resist visiting, when I’m away from my mother I fear that when I return she will no longer be there, that I will lose
those parts of her—her sense of humor, her ability to find grace in any situation, her gentle laugh, her encouragement to “keep ’er cool”—that have mothered me even when I haven’t felt particularly mothered.

On the other hand, it has been a peaceful year with Mom, a time to catch my breath.

T
he value of Mom’s mutual funds has risen over the past year by $9,000. In April, I have to tap into the funds to continue to pay for her room at Greenway. I cash out $10,000, leaving her with $92,00 in mutual funds and $29,000 in her IRA. The meter is quickening and I dread the day we come to the end of her funds. What then?

I
n the fall I take my mother to a reunion of my father’s side of the family. Mom’s ex-sister-in-law, Nadine, will be there. Mom hasn’t seen her in forty years but they used to be close friends. Nadine told me last year at the reunion that she can’t wait to see my mother.

My father will not be there—his behavior with his mental illness is so disruptive that his second wife, now his ex-wife, has stopped inviting him. My half brother and two half sisters will be there with their spouses and children. Over the past twenty years, I’ve visited my half siblings only a few times, and my mother has never met them. We’ll gather in a pavilion at a state park two hours away, the same place they held their reunions when my mother was married to my father. Part of me hopes that she will remember this place, the gorge and the waterfalls, and feel happy.

W
hen I call the Greenway RAs to ask them to get Mom up early for the reunion, I expect it to be a short, simple call. Instead, Sharon, the head daytime RA, tells me she will “try” to get Mom up but “sometimes it’s very difficult.” And she adds that, oh, by the
way, “We’re having an awful time getting your mom to take showers. We don’t think she’s doing it on her own, and she won’t let us help her with it.” I agree that Mom doesn’t want someone with her when she’s naked. Last year, Mom called me in fear that one of the new RAs would “make” her strip and take a shower.

Sharon says that they are keeping track of whether Mom seems clean. “Maybe she’s doing a French bath,” she says, “like some older folks are used to doing.” Your mom looks clean, she says. Have I noticed anything? A few times over the past year, I say, I’ve noticed that Mom smelled a little, but not lately. Sharon tells me as well that Mom refuses to let the RAs into her room to get her dirty laundry; they have to sneak in when she’s out of the room, “because we have to get it done,” and then Mom is grateful when they return the laundry. Yes, I know, I tell her, she doesn’t like anyone coming into her room, and she forgets that she doesn’t have to do her laundry herself.

When Sharon mentions the shower issue, I immediately feel a twinge of anxiety. I do not yet know that this is a typical part of the dementia progression. My mind starts working on how I can help the situation, what might happen next. I want to know about problems, but I don’t expect to be told about my mother’s declining ability to take care of her personal hygiene when I’m calling about a routine issue such as a wake-up call. I’d prefer that someone call me and arrange a time when I can talk.

“I wish I’d known about this before,” I say.

“I’m sorry. I thought Daphne had already called you. Daphne really has a way with your mom, you know. Maybe she thought she could talk to your mom and get her to shower more often.”

“Sure. That makes sense.”

Daphne probably remembers how overwhelmed I felt when I first moved Mom into Greenway. I had asked Daphne to please handle as much as she could without asking me for help.
An example was explaining the rental agreement to my mother. Daphne spent hours going over the contract with my mother, again and again, because Mom always wants to understand paperwork even if it makes no sense in her brain. Daphne told me afterward that she had never before spent so much time explaining the rental agreement to anyone. I had told her that my patience for such matters was also exhausted.