Inside the Dementia Epidemic: A Daughter's Memoir (29 page)

T
wo and a half years after Mom’s move to Elm Haven, they can no longer keep her well fed. She lost three pounds one week, and three the week before, down to one hundred and eleven pounds. Dr. Claiborne can find no medical explanation other than dementia. Mom’s forgetting how to feed herself.

On a Saturday at the end of lunchtime I stop by to check on her. Everyone else is done with their meal but I find Mom sitting alone at the small “cueing” table where the RAs coach her through the steps of eating. (As they explained to me on the tour, Elm Haven cannot, lacking an “enriched” assisted living license, spoon the
food into her mouth.) She’s working her way through a bowl of ice cream, the one food she always remembers how to eat. A new RA I don’t recognize tells me, “Lots of times your mom doesn’t want us to talk to her. She looks away and ignores us. When she gets like that we just leave her alone.”

That’s wise, I think.

A
year ago at my caregiver support group I learned that, to someone with dementia, a full plate with several foods crowded against each other can look unappealing and confusing. I started then to request that Mom be served her meals one dish and one utensil at a time, protein first. In addition to ice cream, she also gets high-fat meals and extra gravy. The chocolate liquid supplement she started drinking a few months ago gave her loose stools, so they switched to fortified juice three times a day. Each month Mom pays an extra $150 for the supplements and $120 on her personal care plan for the RAs to serve them to her.

Today it looks like the RAs followed my request to offer one food at a time, as I see the individual bowls off to the side, but they lie untouched.

I’d like nothing more than to deny it, but my mother is nearing the end of her stay in this lovely place. She’s declining again, now one of Elm Haven’s frailest residents.

Much later, I figure out that she is crossing the boundary of Stage Six to Stage Seven of Alzheimer’s disease. In Stage Seven, “late-stage” Alzheimer’s disease, the person cannot remember how to use a spoon or fork and needs to be spoon-fed. Swallowing becomes difficult, and they must be fed soft, then pureed food. Though they may retain the ability to say a few words, they lose the ability to have a conversation; their muscles grow rigid and they lose the ability to walk; they need help with every movement, every task; they may lose the ability to smile, sit without support, or hold up their head. Eventually they lie rigid in bed, nearly unresponsive. Stage Seven can last, I will learn, from several weeks to several years.

Part of me denies that my mother will end up like this, alive but stiff and unseeing. I cannot imagine it.

I
n February, I bundle Mom up for a short walk outside. It’s cool but the sidewalks are bare of snow and the breeze is gentle. As usual, we leave her walker inside and I hold her arm. This past year she’s walked very slowly, gingerly, as if she might crumble at any moment. I can hear her breathe beside me in short little puffs, just as she did when we climbed together up the hill at the cottage. She catches my eye and smiles.

So faint I almost don’t hear her, she says, “You’re nice.”

“Thanks, Mom.” I’m not sure what to say so I point past the bare branches of the trees. “Can you see the lake down there without your glasses?” (The glasses have long since disappeared. When Mom first moved into Elm Haven, Diane, the director, and I agreed that it made no sense to get Mom new glasses. She would just keep taking them off, or lose them.)

“Sure.”

“See how it’s frozen down on the end there?”

“Mm-hmm.”

“Are you cold? You look cold.”

Mom laughs and reaches her mittened hand for the scarf around her neck. I take that as a “yes” so turn us toward the door. I feel tears coming. I stop and face her. I take a deep breath and tell her I love her.

She crinkles a smile and looks deeper into my eyes.

“I know we’ve had our moments...you know, when we didn’t get along.” I pause, searching for recognition in her eyes. She squints slightly as if she’s confused or worried. My tears flow faster now but she’s quiet, watching me.

“I just want you to know...I just want to tell you...that I love you. I really love you.” I squeeze her hand tighter. She smiles again but her eyes look serious.

“I know all the things you’ve done for me my whole life. And I want you to know how much you mean to me.”

I want to say “Mom, do you understand?” but I don’t.

She still studies me. What’s going on under that concerned expression? I imagine that Mom can’t remember the complexity of our history. I imagine that she’s just trying to understand what in the world I’m talking about in this present moment. But I could be wrong.

When I say “I love you” again, her expression lightens. She reaches for both my hands and squeezes them. With that movement, that simple gesture, I know in my heart that my mother is telling me how special I am to her.

I ask for a hug. We hold each other for a long, sweet moment in the crisp, winter air.

L
ately I’ve begun to wonder if I treat my mother too much like a child in the way I speak to her and the subjects I choose. In her book
Forget Memory: Creating Better Lives for People with Dementia
, Anne Davis Basting writes that “age stereotypes can yield
patronizing behaviors like speaking in a high perky voice [and] talking only of simple subjects (‘How about that weather!’)...” I don’t speak in a high voice, but I do try to be perky at all times. I purposely keep my banter light, as if Mom is losing, along with her language, her adult insight, wisdom and full range of emotion. In
Learning to Speak Alzheimer’s
, Joanne Koenig Coste writes that we should “assume that the patient can still register feelings that matter.” I have assumed that, beyond her steady love for me, Mom’s other feelings have grown fewer, less frequent, and shallow.

John Zeisel writes in his book,
I’m Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer’s,
that when we communicate with a person living with dementia, “honesty means being yourself ”—not shying away, as I so often have, from sharing my true feelings in fear that I’ll upset my mother. He believes that a person living with dementia continues to grow in new ways, to develop new relationships and deepen old ones, and deserves to be treated as a whole, complicated, mature person.

If we are honest about our feelings around a person with dementia, he says, they “can do this honestly as well.” Whether we’re sad or happy, the person with dementia will feel “particularly good when he can express a feeling, whether of concern, empathy, fear, or love”—in words, if they still have their language, or with touch, gesture, or facial expressions.

Reading these three books this spring has made me consider for the first time that there’s probably much more going on in my mother’s mind than I’ve thought. With this realization I feel a deep regret and sadness. Two years ago, when Mom’s words first became jumbled, when she became incontinent, when she stayed in the rehab center, I treated her as if she was no longer here, as if her brain were so diminished she would be unable to feel lonely, lost, or scared. When she said things in the rehab center such as “Martha, how did you know I was here?” and looked close to tears, I assumed she was just confused.

Maybe I avoided her true feelings because it would have been too painful for both of us, and I couldn’t do anything about them beyond visiting her nearly every day as I did. In fact, ever since she moved in with us five years ago I’ve found it easier to think of my mother as less than whole.

I wish now that I hadn’t equated her jumbled language and physical deterioration with loss of self and awareness. I vow to talk to her as I would anyone else.

O
n Valentine’s Day, Mom enjoys looking at new family photos; she laughs at a picture of Andrew, now age fourteen, and how he’s let his straight brown hair grow below his shoulders. I point to a family portrait we took in Ben’s parents’ living room on Chinese New Year. “There’s Ben’s younger brother, the one who walked you down the aisle when we got married.”

She says something as soft and light as her breath. I hold my own breath as if to hear better, and in the silence the words form in my brain. I did hear her, and I understood. She said, “I have a brother”—tentatively, as if she wasn’t quite sure of the fact, or the thought made her feel sad because she missed him. This spark in her, this connection between us, makes me feel happy.

“Yes, you do! Uncle Jack!”

She nods.

I say, “Your brother Jack,” and she smiles. Jack is seven years younger than my mother, and in robust good health. He tells me he bikes fifty miles a week and walks four miles a day. He still works part-time remodeling homes, and his mind seems perfectly sharp.

I savor this moment with Mom, then try to continue the conversation.

“We should invite him for another visit, don’t you think?”

“Yes.” This is firm and clear.

“He hasn’t been here in about six months.” With this her smile fades into a look of confusion or hurt, so I quickly add, “He lives in Louisiana and it takes him two days to drive here, so he doesn’t get up here very often.”

Gauging the look on her face—still sad or confused—I try to reassure her some more. “I’ll talk to him tonight. I’ll invite him back up for a visit. Would you like that?”

She still looks puzzled and doesn’t answer. In a split second her pleasure in remembering her brother got pushed out by something else, and I can only guess by what. Maybe I spoke too many sentences in a row for her to follow. Maybe she doesn’t understand why I would be the one to call Jack and not her. Maybe she’s disappointed that he’s not nearby and can’t visit immediately. I can’t pretend to know. What I can do is accept that it’s all okay.

“I was talking to your mom the other day about her dog.” It’s a new RA, one of three new RA’s I don’t recognize today. She’s stopped at the table in the dining room where I’m showing my mother the photos, which include pictures of Trinka before we had to put her to sleep. For the last few years we took care of Trinka, when she lost her sight and hearing, she stopped barking and nipping and grew gentle. Ben, the kids, and I found ourselves more attached to her.

I had not yet told Mom of Trinka’s death. I didn’t want her to feel sad. Now I speak to my mother as someone who does not need, and would not want, to be protected from the facts of life and death.

I hold her hand and say, “Unfortunately, Mom, we had to put Trinka down. She was fourteen and really sick.”

“Oh!” she says, her eyes wide.

“We had to put her to sleep. She died last fall.”

I pause, then say, “She had a tumor in her brain. We had part of the tumor removed from behind her eye, but it didn’t help.” I try to keep it simple but truthful.

After the initial alarm Mom’s face looks blank.

“I brought her here to say good-bye to you, Mom, right before we took her to the vet to have her put to sleep. You petted her on your lap.” I was so sad about Trinka’s death that I had to ask Ben to take her to be put down (and at the vet’s he cried, too).

Mom’s eyes look dark. I stop talking, and make room at the table for whatever reaction Mom might experience.

A
nother day, as I drive Mom to the dentist for a teeth cleaning, I say, “Look at that beautiful old church, Mom. It’s such a lovely building, isn’t it?” I point to the right, out the passenger-side window, but even though Mom’s looking at me, not out the window, I continue. “It’s the Presbyterian Church, like the one you used to go to when you were growing up, the one in LeRoy. You got married there.”

“Sure!” she says. I take my own eyes off the road long enough to give her a quick smile. I can see through the corner of my eye that she continues to watch my face intently. A block down I point to another church.

“That’s the United Methodist Church. I’m thinking of going there.”

Softy, but as clear as if we were sitting in the car ten years ago, Mom says, “Why is that?” She sounds surprised.

I feel tingly. We’re having a real conversation. Does my mother want to know why I’m considering going to church because she remembers that I’ve never been a churchgoer? Or does she say those particular three words because it’s a simple and polite phrase in response to anyone saying that they want to try something new? Who knows? I’m thrilled to make that connection with her
intellect, to talk, once again, with my mother who was always curious about everything in the world, always interested in me.

“I’m thinking of going there because they have a female pastor. They’re open-minded. And they’re really nice people. Andrew and Morgan went to preschool there.” I think about how I want to be more spiritual, and how I might explain that in one or two sentences, but it’s time to pull into the driveway of the dentist’s house. Mom points up at the large sign on the front porch that’s white in the shape of a molar. She laughs.

After the appointment I swing into a fast-food drive-through to get her a chocolate milkshake, an easy treat that doesn’t involve getting out of the car. Coaching Mom in and out of the passenger side of my van has become nearly impossible. She no longer seems able to translate my verbal directions—“Scoot your bottom over, Mom,” or, “Lift your other leg”—into movement. She stands for long moments clutching the door handle, unwilling or unable to bend, rigid as a plank.