Inside the Dementia Epidemic: A Daughter's Memoir (24 page)

When I pay the bill and ask Mom to stand up, she clutches her cloth napkin.

“Should I bring this?” she asks. Every time we leave a place—a restaurant, my house, my van—Mom looks around to see what she brought with her, what belongs to her, picking up things at random as if she owns them, reluctant to put them down.

I decide to answer her using language I learned in a parenting class when Andrew was three and Morgan still a baby. Instead of saying, “You need to pick up your toys” or “Please shut the door,” you use less bossy, less confrontational language: “The toys need to be picked up” or “The door needs to be closed.”

“The napkin needs to stay here,” I say. “The waitress will take care of it.”

It works. Mom nods, and drops the napkin.

B
ack at Elm Haven, we take a walk.

“Isn’t it nice to have such a lovely old barn right next to you?” I ask Mom.

“Oh, yes,” she says, but she’s looking the other way. We continue around another corner of the building where a vast section of a dairy farm lies planted in clover, an expanse of emerald unblemished by houses or pavement.

“Isn’t this a beautiful field to have right next to you?” I ask, sounding to myself like a bit of a simpleton, but Mom agrees again. I can tell, though, that she’s not really looking, not really
appreciating it. Maybe she’s getting tired. Why do this, then? Because I’m still trying to include in my mother’s life things she used to love. As with the ride in the rowboat I want Mom to feel the breeze, and see all the colors around her. I’m disappointed in her reaction, but comforted that her new home lies surrounded by beauty.

As we continue I point out a tall lattice fence that encloses one of the two inner courtyards. To prevent residents from wandering outside, the gate on the fence is padlocked.

Mom looks up at a wisteria vine running along the top of the fence, its dried blossoms like clusters of grapes.

“I like that,” she says.

I knew you would, I think to myself, and smile.

I
n her room Mom takes a look around as if she’s never been here before. “This is nice!” I steer her to the toilet and gently pull down her layers. Usually when I visit now I leave it to the RAs to help her in the bathroom. I feel guilty about this, lazy, as if my discomfort—and boredom—with such tasks are a moral failure. I know that family members who take care of their loved ones at home face this task routinely with skill and patience, but I remind myself that my mother would never have wanted me to spend our visits wiping her bottom.

I notice today some evidence that she might be developing bowel incontinence, but I immediately push the thought out of my mind. It’s too sad. I help her change so she won’t get a urinary tract infection.

I leave Mom sitting in the main living room with a copy of the Sunday
Times
magazine. I push the door open and look back to catch her eye and wave good-bye. She waves back and sends a big smile across the room. As I wave to her, I sense a dozen pairs of
eyes watching us; this room full of strangers seems to intrude on what should be our private moment of affection.

Home after only four hours away, I’m drained. For my sake our time together could have been shorter, but I knew I had not seen her for two weeks, and a shorter visit would have felt to me as if I were cheating her, taking advantage of her poor memory, pulling a fast one.

T
oday I noticed that Mom never used my name. She introduced me to another resident at Elm Haven as “my daughter,” and when I told the woman my name was Martha, Mom perked up and said “Yes, this is Martha,” as if she had forgotten. Usually she introduces me as “my daughter, Martha”—but not today. I wonder if she’s reached the point where she will remember our relationship but not my name.

I don’t realize yet that each day will be different, and if she doesn’t use my name it might be temporary.

T
oday is Mom’s first care plan meeting at Elm Haven, her thirty-day review, and I’m not sure what to expect. While I wait in the early afternoon for my appointment to begin, I find Mom in the main dining room, standing alone and looking disheveled and blurry-eyed.

“Oh, honey, what are you doing here?” she exclaims, and reaches for a hug. I say that I’m here to see the nurse. I don’t explain that I’m also seeing the director and that it’s a meeting about her.

An RA named Carrie, a blonde woman in her thirties who is always friendly and helpful, emerges from the locked kitchen carrying a plate of food, which she sticks in the microwave. She explains to me that Mom just woke up.

“She’s been getting up later and later the last few days,” she says, “fighting with us when we try to wake her up. We had a meeting about it this morning. They told us”—meaning the director and the nurse, I assume—“that if your mom’s irritable, to let her sleep until she’s ready to get up.”

Immediately I feel stressed. If Mom is sleeping in until two o’clock in the afternoon, I think to myself, she’s missing two meals and most of the day’s activities.

The RA adds, “I’m not happy that they’re letting her sleep all day, and I told them so.”

Thanks for letting me know, I say. I admire her willingness to talk to me frankly and to tell her superiors what she thinks. On the legal pad I’m carrying, I add “sleeping in” to the list of issues I want to talk about at the meeting.

I sit with Mom at her table while she picks at her lunch. She starts to gag on a piece of beef. Adrenaline shoots through me, and I’m ready to do the Heimlich maneuver, but she’s okay. We’re alone in the dining room. If she eats by herself at odd hours, I think, what happens if she chokes for real and no one is around? Difficulty swallowing can be a symptom of advancing Alzheimer’s disease.

Diane, the director, comes to get me for our meeting, and with a kiss I tell Mom that I will be back to see her in a few minutes. In the library I sit in one of the wingback chairs by the closed French doors, across the room from Diane and Michelle, the head nurse. I like Michelle a great deal—she’s conscientious and thorough. I haven’t had much experience with Diane, but she’s friendly enough.

Diane asks me, “So how do you think it’s been going?”

“Very well in general,” I say. I bring up the over-sleeping. Yes, they say, your mom has been sleeping late the last few days, but it hasn’t been going on long. She refuses to get up by ten o’clock or eleven, when she was generally getting up, and she’s staying up until about two or three in the morning. Michelle says that Mom is also not sleeping well when she is in bed; she gets up, turns on the lights, and goes back to bed on top of the covers, sideways.

I ask them, “Aren’t sleep disturbances normal for later phases of dementia?” I ask them what they do for other residents. Apparently if the family prefers it, the resident may need to be given a sleeping pill.

I don’t mind the idea of a sleeping pill at all, but when they say it would be a narcotic I say, “If Mom were in her right mind she would never want to take a narcotic because she’s a recovering alcoholic.” At least I think she would not want to take it; I’m not sure. She once told me that her local 12-step group twenty years ago was “too strict” about avoiding medication. The taboo against medication made her put off seeking chemical help for her depression and anxiety.

Diane tells me, “We will respect your mother’s wishes. If she would not have wanted a narcotic before the dementia, we will not give it to her.”

“Could you give us a bit of history of your mom’s sleeping patterns?” Michelle asks me. “Has she always been a restless sleeper? Has she always tended to stay up late and sleep in?” She leans forward and looks in my eyes. I tell them that as far as I know Mom slept well at Greenway but rarely got up before ten a.m. I warn them that if left to her own devices she will probably stay on the schedule she kept when she lived alone at the cottage three years ago, staying up half the night and sleeping until noon or later. I tell them I would prefer—I would just feel better—if Mom stayed on a more normal schedule. “I’d like to know she’s part of the regular daytime world,” I say.

We agree to monitor Mom’s sleeping patterns for a few more weeks before deciding whether or not to use a sleeping aid. They could also start, Michelle says, with just a Tylenol to help her sleep. I ask her to try that.

I tell them I’m concerned that if Mom misses breakfast and lunch she won’t get enough to eat. And if she’s sleeping through
many of the daytime activities, I say, “There is no point in her being here. It’s a waste of money.” I know I sound blunt, but I don’t care. Mom can’t afford to pay so much money to sleep the day away. What kind of life is that?

Diane smiles calmly and reassures me that Mom is still getting all of her meals and snacks, just at unusual times. “The kitchen is always open,” she says. “Your mom can eat her meals in the middle of the night if she wants to.”

Michelle says, “Your mom is eating well.” She flips through a folder. “And her weight is stable.”

Diane says that even though Mom misses some of the daytime social activities, she gets plenty of stimulation from the late afternoon and evening activities. She enjoys the crossword puzzle groups, and although Mom usually listens more than she offers the answers, she is “definitely paying attention and engaged.” Diane says Mom is really good at the game in which they try to guess names from the past, and she’s impressed that Mom knows some answers when no one else does. Mom also likes old movies.

Diane says that my mother particularly enjoys the company of one of the nighttime RAs, who sits with her in her room, looks at magazines with her, and talks to her. “The nighttime RA is extremely soft-spoken and gentle,” she says, “and your mom seems to like that.” She speculates that Mom may be staying up late because she sees that her favorite RA is there and wants to be with her.

“We believe in letting residents keep the schedule they prefer,” Diane says. “We will not physically force your mom to get out of bed if she doesn’t want to.”

Diane’s tone is calm, never defensive, and I begin to think that I could grow to respect this director. I begin to relax.

I mention how Mom’s mouth is dry because of what I have assumed to be a reaction to her new incontinence medication. “It’s hard for me as her daughter,” I tell them slowly, struggling to find
the right words, “to see one of the last things she still has—her speech—impaired because of a medication.”

Michelle says that yes, this kind of incontinence medication can cause dry mouth. She frowns. “It’s really too bad.” She offers to call Dr. Claiborne and ask that my mom be taken off the medication.

Diane then suggests that Mom no longer needs an outside aide to help her with the transition. “We can provide her with everything she needs,” she says.

I’m instantly skeptical. It sounds like a sales pitch. I doubt my mother will get all the stimulation she needs within these walls, and I intend to continue the private aides.

“Okay then,” Diane says after a while. She sits up straighter and shifts to cross her legs the other way. “Now we should take a look at the care plan.”

The care plan? I think, squinting and cocking my head to the side. What have we been doing for the past half hour if not the care plan? Clearly I don’t know how these things work.

Diane and Michelle pick up pieces of paper (they don’t offer me a copy) and Diane summarizes the services they will provide. She explains that, because of Mom’s staying up until the early morning hours and her agitated state when she finally wakes up, there is a new charge of $288 a month for “reluctance to accept care.” Those services include “verbal or physical assistance” and “a second person to provide assistance.”

“So,” I ask, “it costs Mom more to be up half the night?”

“Not that much more,” Diane says, and offers an apologetic half smile.

I frown but say nothing. She continues: “There is an additional $180 assessed for this first thirty-day period for ‘assistance managing behaviors when demonstrating anxious, disruptive or obsessive behavior requiring additional attention.’” She doesn’t really explain what this means, or give examples, just says it’s minor and probably part of the whole sleep/rest disruption; it may work itself out. But there is no time to ask for examples as I can sense they are winding things up.

The fees for Mom’s first month of personal care (on top of the basic charges), Diane tells me, come to $1,440. Due to a complicated arrangement with their parent company and New York State, Elm Haven will deduct $430 each month from that fee. Unlike many other assisted living facilities, Elm Haven already includes in their basic charges a fee for some medical and personal care; they subtract this amount to avoid duplicate fees. Thus Mom’s personal care plan will cost $1,010 a month, bringing her total monthly bill to about $4,800.

I’m sure I look shocked. This charge for personal care is twice what they estimated during the initial interview. Diane reassures me that I can request a care plan meeting at any time to go over what services and charges are necessary. She points out that Mom’s “grade” on the assessment for each category of care is an A or a B, with D being the highest level of care, which means, she says, that Mom is doing quite well. She asks me to sign the Resident Assessment Summary Report and goes out to make me a copy.