Inside the Dementia Epidemic: A Daughter's Memoir (19 page)

Just let it all go, I tell myself—Mom swimming or not swimming, or eating only a cupcake for dinner. I should take my cue from my mother. If she doesn’t care about swimming any more, I shouldn’t feel sorry for her when I think of her no longer doing it. If she chooses to eat just sweets for one meal, I shouldn’t worry that she’ll go hungry.

That night I can’t get to sleep for several hours. Then, in the middle of the night, I wake up, my heart racing, from a nightmare. I dreamt I’m standing next to an open window on the third or fourth floor of a brick apartment building. Outside the window I can see an airshaft in the center of the building, nothing but brick walls on all sides, a few windows, and a tiny square of cement courtyard below. Cupped in my hands I hold a tiny puppy, a soft, floppy Lab with brown eyes. I drop the puppy out the window. I can see that the dog is still alive, writhing on the cement. It looks up at me with its big eyes, silent. I want to rush down and help it but there’s no way to get there, no door to the courtyard. I turn my head and avert my eyes.

• • •

T
he next day, after work, I stop by and roll Mom to the courtyard. At a round table under a low-slung tree, we sip cups of water and enjoy the shade, the red geraniums, and the occasional breeze parting the late-August heat.

“That feels good,” Mom says.

Abby hustles by, and smiles and waves at Mom as she passes our table.

“Why...the wave?” Mom calls out.

“Because I saw you smiling at me!” Abby says, turning back to stand beside Mom. Abby looks at me. “You have the same smile!”

I give her a reluctant half-smile, still thinking of how hard she’d pushed my mother the day before.

Turning back to Mom she says, “You did great today, Judy.”

As Abby starts to walk away, Mom calls out to her again. “Give me a good... report...for the day!”

“A-plus, Judy,” Abby calls back. “You definitely get an A-plus!”

T
he next day, a Saturday, I’m more than ready for a break. I have visited Mom every day since she went to the hospital with the pelvic fracture. Since Ben and Morgan are going downtown to the library, and the rehab center lies on the way, I ask them to stop in and see Mom for a short visit. I’ll feel less guilty about skipping a day if someone else sees her. And if Ben stops to see her, he might have a clearer understanding of what I’ve been dealing with every day.

It turns out that Ben and Morgan spend more time with Mom than I expect they will. Ben buys Mom a small chocolate bar from the vending machine in the staff lounge, then wheels her outside to the courtyard. Morgan tells me later that her dad smiled the whole time. I’m surprised, and I love him dearly for doing this willingly, considering how he feels about her.

• • •

S
unday, I stop to see Mom in the late afternoon after cleaning the cottage. I am still grimy, in a frayed shirt, my greasy hair in a ponytail and with a sheen of sweat on my face.

“Oh, was that good for you?” she asks, meaning the cleaning, I think.

“Sure,” I say. “I like to see the cottage nice and clean.”

I tell her the lake was a gorgeous deep blue today, with huge waves and whitecaps.

“Was it...did...the lake...suffice?” she asks.

“Sure,” I say again, though I’m not positive I know what she’s asking. Was the lake beautiful in its own right? Did I feel happy there? Yes.

I tell her that the neighbors right next to us were there for the weekend. Mom gives me a blank look. They were in the brown and white cottage, I explain. “Charlie Smith’s place.”

She lights up at his name. “Oh, sure!” she says.

“His youngest sister owns the cottage now. Charlie’s ninety-one and in a nursing home.”

Mom looks sad. As she tries to find the right words to express how she feels she tilts her head and smiles at me as if she’s amused at herself. She raises her hands in front of her chest, her palms facing each other a foot apart, and packs the air between them as if creating a large snowball.

“I’d forgotten...,” she says, “that he has had...those chunks... of life.”

A
s we sit in the courtyard I mention to Mom how two weeks ago today, before she fractured her pelvis, we celebrated her seventy-fifth birthday. I tell her that we had three celebrations. Ben and I and the kids took her out for dinner and gave her presents, then,
on another day, Morgan and I brought a large ice cream cake to share with the residents and staff at Greenway.

“A lot of people really like you there, really care about you.” When I tell her this, Mom smiles.

The third party was at the cottage with some of her old friends: Bill and Susan, more neighbors from along the lake, and two women who worked at the library and knew her for years. I wanted her friends to be able to celebrate her life, even if she recognized only a few of them, and to share her joy in their company. I had hoped to invite some of her oldest friends, but if she still had an address book with their phone numbers, I didn’t find it when we moved her out of the cottage.

T
oday is the first time in over a year that I’ve gone to my support group. Until Mom’s multiple hospital admissions this summer, things were going smoothly and I didn’t feel a need to go. I recognize three women, all of whom have husbands with Alzheimer’s disease. Arlene, a tall, elegant woman of seventy with bright-red lipstick and short, white hair, has a husband in the dementia ward of the nursing home where Mom is in rehab. He’s farther along in his dementia than my mother, and he no longer speaks. Arlene visits him every day, but she tells us, “I know the man I visit is no longer the man I married.” I assume that since Arlene is more experienced than I am she is absolutely right; I don’t question her wisdom. I assume that my mother will also change into a different person. In fact, with her sudden struggle with words, I assume that the process has already begun. I equate language with self.

A
fter dinner on a Tuesday, I walk the three minutes it takes to get from our house to the large building in the center of our community that serves as a meeting space.

Thirty of us are here to listen to a presentation about how to support Rita, our one resident living with dementia. Rita has grown harder to understand, and over the past couple of years most of her neighbors have shied away from her, including me. Karen, a neighbor who leads the presentation, trains family care-givers and paid caregivers nation-wide in compassionate, person-directed care. Her father also had Alzheimer’s disease. Beth, another neighbor who has helped Rita’s children coordinate her care long-distance, joins her. A third neighbor and presenter, Adele, has spent a great deal of time with Rita as one of what they call her “care partners.” I’m excited to learn all I can from these women and to perhaps share some of my own experiences.

“Instead of trying to change the behavior of someone living with dementia,” Karen suggests, “focus on shifting your own
expectations or shifting the environment. Look at what works now, their strengths rather than their limitations, and build on those.”

Adele tells us, “If Rita says something that doesn’t seem to make sense, try to find something that works with it. It’s like a puzzle. You don’t need to have a deep conversation to have a deep connection. Relax with it and don’t worry about it.” I think I can try this. I already try to work around my mother’s odd choice of words.

“Affirm their reality,” Karen says, “and creatively re-direct them if you need to steer the person away from insisting on something that isn’t a good idea.” Beth shares an example: If Rita wants a third serving of ice cream at a community meal because she doesn’t remember how much she’s already had, Beth doesn’t try to reason with her. She tells her “We’ll have ice cream at home.” Rita says, “Okay,” and within a few minutes forgets all about it.

Have I bent the truth with Mom? Not too often. Instead I try to explain reality as I see it, repeating myself over and over as she forgets what I’ve said. I resist lying to her to make things easier, not only because Mom is not yet that difficult to deal with, but also because I’m used to our honest relationship. Part of me worries that if I start bending the truth with Mom she will catch on and no longer trust me.

Karen explains that non-verbal communication is very important to people living with dementia. Talk to them at eye level, she says. I wonder if that’s why Mom’s physical therapist and nurse at Woodside crouched in front of her wheelchair to talk to her. I always lean over in front of her, never crouch or kneel, because of my arthritic knees.

Convey respect, she says. Use a low-pitched voice. Stay calm.

Karen talks about affirming the reality of people living with dementia. “If they tell you the sky is green, the sky is green. Don’t try to change their perspective.” Do I correct my mother when she
says something that’s clearly incorrect? I’m not sure. I could try harder to validate Mom’s ideas and feelings.

“Paraphrase what she’s said,” Karen suggests. “Reflect back what you’ve heard to clarify your understanding of it.”

Adele admits that paraphrasing can be challenging. “When I’m talking with Rita it’s complicated. I have to think all the time.”

Yes, I find it hard sometimes to follow Mom’s train of thought. I have to concentrate, listen hard. I believe this is one of the main reasons why people avoid talking to those with dementia—the puzzle of their mixed-up language. It helps if you know the person well enough to guess what they are reaching for.

“One of the things I love about spending time with Rita,” Adele says, “is that I can just be myself with her. Sometimes we worry that we have to act a certain way with people or they won’t like us. With Rita you don’t have to worry about what she thinks of you, because she’s not thinking about you!” She laughs.

Karen agrees: “It’s freeing.”

“And when I’m with Rita,” Adele adds, “she helps me slow down and notice so many wonderful things around us. She’ll stop on our walks and study a leaf, or point to a bird in a tree. I call my hours with her ‘the church of Rita.’ ”

T
he next day, a Friday, I visit Mom and carry with me what I learned the night before. I decide to see her after work not out of my usual worry and sense of duty, but simply to sit with her, to slow down and enjoy together whatever pleasure we can find.

Outside, as we sit in the courtyard together, I think of what Karen said last night about helping people with dementia feel useful; often people living with dementia are asked to do very little, to always receive care instead of giving care. I look into my mother’s eyes and say, “Mom, I could really use a hug.”

“Sure, sweetie!”

We hold onto each other a long time. I take her hands in mine.

“You have such strong hands,” I say. “They’re slender but strong.” We lean toward each other, our faces a foot apart.

“So do you,” she says as she smiles and caresses the freckles on my forearm. For a moment we look into each other’s eyes.

“I love you,” she says.

“I love you, too.” Though I’ve forced myself to say it before, this time I mean it. I feel calm and relaxed, not wary and ready to flee.

Mom says, “The two of us...have come...a long way.”

I smile and squeeze her hand. “Yes, we really
have
come a long way.” Is she remembering what we used to be like together, how hard we’ve worked over the years to grow closer to each other? I want to cry when she says this. Does she really remember all those years, or is she just saying something polite that she might say to anyone she’s known a long time?

“Let’s keep going...in that...direction,” she says. She’s still smiling and looking deep into my eyes.

With this, I think she really does know what she’s saying. And that’s all I’ve ever wanted—“to keep going in that direction.” I want us to grow closer, if only by annoying each other less and enjoying each other more.

“Yes, Mom, let’s do that. I’d like that.”

It’s too late to work out any lingering resentments between us, as Mom can’t remember the specifics of our conflicts. So I see no point in hanging on to them. The long-distance affection my mother and I used to share years ago through our letters and phone calls—the affection that, in person, cooled within minutes—now holds steady, for the most part, through our short visits together, warm and full.

A
few moments later, though, Mom starts to squirm. “I’d like to... go in. I think I need to go...” and she points to her crotch.

I’m surprised that she can feel the need to go to the bathroom, as lately she hasn’t seemed aware of her bodily needs, but I quickly stand up, circle her around and wheel her back inside to the bathroom in her room. Her new roommate, Edie, is not there, but I see a baby doll on the foot of Edie’s bed. I point it out to Mom. I’m surprised, amused, a bit creeped out. The tiny doll, swaddled in a receiving blanket, looks like a newborn with its red, wrinkled face.

Standing ready to catch her if she falls, I watch Mom as she lifts herself out of the wheelchair, grabs the walker, and walks stiffly to the toilet. This is the first time I’ve helped with her Depends, the first time I’ve helped her do more in the bathroom than enter and leave. I worry that she’ll feel embarrassed, but she seems quite comfortable.