Inside the Dementia Epidemic: A Daughter's Memoir (31 page)

I
n the E.R., I spoon-feed her for the first time. A nurse has mixed an antibiotic into applesauce, and when I offer Mom one small plastic spoonful after another, we look at each other quizzically, each of us with a half smile. Mom’s eyes twinkle at mine. Suspecting that she might feel embarrassed, I say, “I bet you’re not used to my feeding you.”

As clear as the beep of her blood pressure cuff, Mom says, “I was just thinking that.”

I nearly fall off my chair.

The next day when I visit, Mom is just as talkative, though much of what she says is garbled, or so soft I can’t hear it. I learn
later that when people with dementia take antibiotics, they sometimes experience a temporary period of lucidity. A few researchers believe that Alzheimer’s disease is caused by infection, and that antibiotics can briefly halt or reverse the symptoms. No one recommends taking antibiotics all the time, however, and they are not a cure.

L
ater in April I learn that my mother’s application for Medicaid has been denied. Medicaid considers the $100,000 I placed into my mother’s checking account to be a “gift.” Now they insist that the money be spent down before she’ll qualify. That’s a lot of money for us to lose.

I warn any family caregiver I meet that if they are paying their parent’s bills to never transfer their own money into their parent’s checking account; if you support your parent financially, use your own checks. If you sell property that your parent transferred to you before your state’s Medicaid look-back period, as Mom did, keep the proceeds of the sale far away from your parents’ bank accounts, even if you plan on using all or part of the funds for their care. In all my hours in caregiver support meetings, I never heard about this. I urge my lawyer, who gives presentations to caregiver groups about legal paperwork, to be sure and tell people to beware.

This lawyer will help me file an appeal of this decision, and she will also submit a new application. She tells me we’re more likely to win if Mom’s already living in a nursing home. It’s time to move her. As Mom’s health has declined to the point where she might be better off in a nursing home, I agree to try to find her a place within a month, by early May. I cross my fingers that Woodside will have an available bed.

My attorney uses a legal loophole that will allow us to salvage about $30,000 of the $60,000 remaining in my mother’s checkbook. Out of that $30,000 we must pay the attorney fee of $5,000.

• • •

W
hen I think of the bare, white halls of Woodside where Mom did rehab, I want to fill it with smiles and hugs, touch and laughter. Maybe one or two of her favorite RAs from Elm Haven would agree to visit her each week for pay. I want Mom to have that continuity; I don’t want her to lose all her friends from Elm Haven as she did when we moved her there from Greenway. Zeisel’s book
I’m Still Here
has convinced me that Mom remains capable of building new relationships, and that she might feel hurt if she never saw the Elm Haven staff again. As I can’t visit her all the time, I want Mom to have as many “angels who fall from heaven” in her life as possible. I ask Diane, the director at Elm Haven, to pass on my request to the RAs.

Only one RA—Gina—expresses interest, but she tells me on the phone that she loves my mother and that she would be happy to continue to see her. Her own mother, she says, lived at Wood-side and passed away there five years ago. I will end up hiring her to see Mom for an hour two days a week, and she sends me lovely updates by email. “Have you ever had one of those days,” she writes, “and something someone says or does makes it better? I had one of those days with your mom today. She was all smiles and laughs, and someone said they hadn’t seen her smile and laugh that way in a while. It just made me feel good!”

Another angel, Carol, a neighbor who’s a massage therapist, specializes in bodywork for elders. I hire her to offer my mother a weekly hand massage. Soon Mom lets Carol massage her shoulders, arms, and lower legs while they listen to music. Carol reads out loud, or talks, and holds Mom’s hand.

I’m grateful to each of these women. One of the saddest parts of my mother’s dementia has been the loss of frequent contact with her old friends. These women are new friends, and good ones.

O
n May 1, 2010, Ben and I move my mother from memory care at Elm Haven to the secure dementia floor at Wood-side Nursing Home. It maddens me that the reason I must move her, for the sixth time in five years, is a quirk of public policy: Medicaid in our state will pay for nursing home care, but not for someone to spoon-feed her at a memory care place like Elm Haven.

In Barbara Ehrenreich’s book
Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America,
she argues that when individuals in crisis feel pressure to make the best of a horrible situation, they are, in effect, letting the rest of society off the hook. If we take pride in struggling as rugged individuals, we expect—and get—less support from society as a whole.

“To be disappointed, resentful, or downcast,” Ehrenreich says, “is to be a ‘victim’ and a ‘whiner.’” Arlene, the woman with the red lipstick from my support group, says that, as caregivers, “we are not victims.” I believe she means that we can choose to be proactive for
our loved ones, to demand what our loved ones would want if they could speak for themselves. She also means that we can choose to take care of our own well-being, to not act as martyrs. But I believe that people living with dementia, and their family caregivers,
are
often victims, plain and simple—not because of timidity or passivity, but because of shortsighted public policy. So much could be done, so easily, using just common sense.

I have filed the appeal with Medicaid, and am waiting for a hearing to be scheduled. Until I win the appeal, or Medicaid accepts the new application submitted by my attorney, we must pay for Mom’s care, at $230 a day. I know that in New York State Medicaid will pay for nursing home care retroactively for three months, if income and assets are within the required limits. I assume that we will be reimbursed eventually for Woodside’s charges.

Before we leave Elm Haven I ask the staff to pose for a photo with Mom. She’s seemed happier during these two and a half years with them than I’ve seen her in fifteen years. Taking her away from them makes today one of the saddest days of my life.

The morning of Mom’s move, I go to Woodside by myself to decorate her corner of her double room; that way, she’ll see her familiar things when she arrives. When I step off the elevator, the common room looks quite different from when Mom did rehab there three years earlier. The old nursing station, an imposing desk built into the floor at the back of the common room, has been removed and replaced with a small medication cart on wheels. The white cinder block walls have been painted light green, a wallpaper border of green leaves and flowers runs along the walls, and the old white tile floor has been replaced with light-brown vinyl flooring that looks like wood. There are new comfortable chairs and couches, ivory curtains on the large windows overlooking the courtyard, and lots of plants. Where once there was a large flat-screen TV on a wall, one that was almost always on, there is now a small TV that
I will discover is only on if they’re playing an old movie. Usually they play music on the CD player.

I will learn that Woodside has a new director, a young woman who started her career as a recreation therapist, and also many new staff. The physical therapist, nurses, and social workers I remember from Mom’s rehab are gone. I find the new nurses to be much friendlier, and several young recreation aides sprinkle their bubbly enthusiasm and affection around the common room like cinnamon sugar on toast.

Mom’s roommate is a lovely woman named Elaine, about Mom’s age, with moist, friendly eyes. Elaine shows some signs of confusion but can still speak clearly, feed herself, and walk on her own without a walker. I would think she’d do well in a memory care place such as Elm Haven, and I wonder how she ended up at Woodside. Perhaps, like Mom, she’s run out of savings, or perhaps her family knew of no other alternative. Nearly every time I visit, I see her sitting in the common room, placid, her eyes down and her hands folded in her lap. When I greet her she immediately sparks to life. I feel grateful each time I see Elaine that Mom has such a sweet, “with it” roommate.

Mom will sleep in the bed away from the window, and a nurse helps me move the bed against the wall and crank it lower to the floor, so Mom will be less likely to hurt herself if she rolls out of bed. At night, the aides will tuck a body pillow along the length of the bed, attach Mom’s nightgown to an alarm, and, now that Mom’s less likely to try to get up on her own, they place a thick rubber mat on the floor next to the bed.

A young man from the maintenance department secures the large framed painting from the cottage of the two white sailboats on a deep blue lake onto the wall over Mom’s bed. I hang the framed photo of her in her canoe, the blown-up portrait of me at eighteen, and others: Mom when she was younger, her parents, my
brother, and Andrew and Morgan. I label the photos (“I canoed 30 miles around Silver Lake with my miniature Schnauzer Khara Mia,” “Mom and Dad,” and “This is me”) in case Mom can still read them and the staff are willing to talk to her about these images from her past. Right behind her bed, I hang the soft, fabric Christmas wreath with a partridge and pears that a friend made for her thirty years ago. I plug in a small lamp on the end table; that way she can have some soft light instead of only the harsh light of the fluorescent tube on the wall behind her bed. As Mom’s storage space is much less generous here than at Elm Haven, with a closet one and a half feet wide and five small drawers, I winnow her clothes down to the most essential. I label the drawers to help the staff find each item in a hurry. Outside their shared bathroom, up high near the ceiling, hangs a solid metal rack meant to hold a television. I don’t want Mom to lie in bed staring at a TV, or the ugly, empty rack; I place a large pot of artificial red geraniums up there and the maintenance guy secures it with a thin, cabled chain.

Over the next few weeks the staff will often comment on how much they love the decorations and pictures. Though I’ve created a familiar nest for Mom in this angular, transitory space, I suspect she’s not fooled. Does she know this is a nursing home—her final stop? I worry that beneath her silence she will feel sad or angry.

Indeed, when we move her in later that day, Mom doesn’t seem to notice her familiar belongings. Her affect is blank. When we slip out, a nurse sits with Mom on the edge of her bed and puts her arm around her.

I
n the first six weeks at Woodside Mom eats almost nothing. She continues to forget how to use a fork or spoon, and turns her head away when the aides try to feed her. I make sure they offer her one food at a time, protein first, with only one utensil, and that they
offer her at each meal a finger food such as a peanut butter and jelly sandwich.

Nothing helps Mom at this point. She chews on pieces of her paper napkins until I ask the staff to stop giving them to her. Week after week, she loses weight. The head nurse on Mom’s floor, a calm and professional woman, tries to reassure me. Many new residents go through a difficult period of adjustment, she says. When she advises me to “give it some time,” I try not to worry, but I can’t.

One day while I wait by the elevator, a staff member who’s waiting with me asks me a question, as if in passing, that I did not anticipate.

“If your mom continues to lose weight, how would you feel about a feeding tube?”

A feeding tube? Is that where they’re headed already?
I say, “I wouldn’t want her to have one. And I know for sure that she wouldn’t want one.”

A tiny smile flicks across his face but he says nothing more. I wonder why he thinks it’s okay to so casually ask me this question, while the head nurse has not.

His question tears me apart. If Mom stops eating and doesn’t have a feeding tube inserted into her stomach, she’ll starve to death. I research feeding tubes online and see that the tubes can be painful, and if someone like Mom, who forgets why it’s there, tugs at it, the hole can get infected. I don’t know who to talk to who has experience with these kinds of decisions. I don’t yet trust the nursing home staff to do what’s best for my mother rather than what their state regulators might want them to do.

I call Dan at the Office for the Aging, who suggests that I call our regional Alzheimer’s Association. One of their counselors tells me that the subject of feeding tubes comes up very frequently with caregivers who have a family member with late-stage dementia. I feel tremendous relief just knowing I’m not alone. But when they
recommend that I ask our local hospice to visit and evaluate my mother, I waver. This most recent decline has come on so suddenly I’m not ready to think about my mother needing hospice. I talk to some of my neighbors who’ve had experience with hospice, but I end up not calling.