Inside the Dementia Epidemic: A Daughter's Memoir (32 page)

B
y mid-June, Mom rebounds. She eats well, even better than she did her last months at Elm Haven. And when the staff members say hello to her, she stretches her arm out towards them, wiggles her fingers, and gives them her signature smile.

It saddens me to think that Mom had such a difficult time at first, but her decline ceases, she seems content, and once again, I can breathe.

T
he same month, I have my first hearing with a judge from the state Medicaid office to contest their rejection of Mom’s application, and it’s a debacle. The judge, a large man with a booming voice whose face grows redder each minute, demands that before I can represent my mother, I must produce a letter from her doctor stating that because of her dementia she is unable to attend or understand the hearing. He says my Durable Power of Attorney and Health Care Proxy are insufficient. I get the distinct impression that he’d like nothing better than for her case to go away. I had read the Medicaid application material thoroughly and nowhere did it say that such a letter was necessary for a family member to represent an applicant. The judge rises, grabs his thick folder and storms out.

The county Medicaid officer, a woman who processed the paperwork and sat beside the judge, walks me to the waiting room. “I’m so sorry,” she says, flustered. “That’s never happened before. I don’t know why he did that.”

In early July, we are offered a new hearing. I filed a formal request for a different judge, but my request is ignored and we’re assigned the same judge. Ben accompanies me as a witness to corroborate my story that the money we put into Mom’s account was ours and not meant as a gift to her. We bring a letter from Mom’s doctor stating that my mother “has progressive dementia, and to a medical degree of certainty cannot comprehend a Medicaid or any similar hearing.” The judge has cooled down; he shows no sign of agitation until he tries to get me to say that the money was a gift: “So you deposited that sum of money into your mother’s account to be able to continue to pay her bills. Was that not a gift? How can that not be considered a gift?” He stretches his thick arms out to his side as if to emphasize his point, puffing out his barrel chest like an angry goose. Despite his bluster, I feel hopeful, and half expect that we will win.

By mid-July, though, Medicaid informs me that our appeal has been denied. Fortunately, the second application by the attorney has been approved. My mother now has only the allowed amount of $13,800 in her checking account, and the remaining balance of the $100,000, about $50,000, sits in a different bank account under my name. I must continue to use those funds to pay for her care during a “penalty” period of a number of months equivalent to the amount she was “gifted” divided by the average cost of nursing home care in our area. Since we’ve been paying for her nursing home care since May, we will need to continue to pay for her care for four more months, through October. We will not receive the retroactive reimbursement we were hoping to get.

I
n August for my mother’s seventy-eighth birthday, I plan a small gathering at Woodside to celebrate her life. On the invitations, I write, “Though she’s living with advanced dementia, Mom will delight in your presence. Years ago she wanted a celebration of her
life after she passed, but we’re sharing our love and affection for her now while she can enjoy it.” I suspect that by the following year she might be much less responsive. Now is the time.

Her brother visited a few weeks before, and he doesn’t drive up again, but my step-grandmother, the one who took us in when my mother divorced my stepfather, comes, though I’m not sure Mom recognizes her. Bill and Susan, Mom’s neighbors from the lake, join us, and Andy, my neighbor who helped Mom visit assisted living places five years ago. I wanted to invite Mom’s oldest friends, those from her teaching jobs she kept in touch with, but I can’t find her little address book and they’re not online. Some of her newest friends attend—Gina the RA from Elm Haven, and Carol, the massage therapist. I sent an invitation to the directors of both Greenway and Elm Haven to invite any staff who might like to see Mom, but only one person aside from Gina arrives—a dining room worker from Greenway who particularly enjoyed my mother. He brings his wife, and it feels lovely to think that someone at Greenway remembers her fondly.

Ben and I cook the meal. I bake Mom’s angel food cake—the kind she used to make for my birthday—and we invite all of the staff at Woodside to join us. I display photos of my mother and her family, and throughout the party, a harpist plays “Clair de Lune” and other of my mother’s favorite pieces. It’s a small, serene party, and though she says little, Mom holds people’s hands, smiles, and locks onto their eyes with hers. She listens closely and laughs right on cue. I’m not sure which guests she recognizes and remembers, but that’s okay.

I
n September, I attend an all-day gerontology conference at a local college, eager to learn the latest insights into dementia care. Dr. G. Allen Power, author of the book
Dementia Beyond Drugs: Changing the Culture of Care,
describes to the audience the traditional view of dementia as tragic, irreversible, costly, and burdensome for caregivers and society. Certainly that’s how I used to think of dementia. But dementia merely represents a shift, he says, in someone’s perception of the world. People with dementia can still learn new things, and there continues to be the potential for growth and enjoyment of life.

I’ve seen this potential in Mom’s transition to Woodside. She seems to recognize the staff as they walk toward her even before they see her or talk to her. She’s ready to smile at them even before they give her a big “Hello, Judy!” In the same way, she seems to recognize the man who volunteers to lead their sing-along time, and she’s developed a relationship not only with Gina, the RA
from Elm Haven she’s known for three years, but also with Carol, the massage therapist who’s known her for only a few months.

During the five months my mother has lived at Woodside I have avoided visiting her more often than every week or two because I’ve felt like our visits are a bit superficial and forced, plastic, as if we do not really understand each other. But in our last few visits I’ve felt her joy in simple things—the deep blue, cloudless sky above the courtyard, and watching my new miniature Schnauzer puppy, Shadow, bounce around like a rabbit. She seems to cherish eating a brownie, and touching my face. She listens to me carefully.

“Do you feel cold?” I ask her on a brisk fall day as we sit in the sun in the courtyard by the crispy, brown stalks of summer flowers.

“No.”

“Would you like some more brownie?”

“Yes!”

“Mom, Andrew turned fifteen last week. Can you believe he’s fifteen already?” Her eyes grow wide.

If I pay attention, I see that her responses are all spot-on. Judy is still “here.” But for how long?

W
hen my mother moved into Woodside, she still walked with a walker, but so slowly that the staff used a wheelchair to get her to activities and meals in a timely manner. For a few months they tried to walk with her as much as possible, but now she sits all day in a facility-issued black wheelchair. I am still uncertain whether she was doomed to lose her ability to walk at this particular time, or whether it happened because a wheelchair is more expedient for the staff.

I understand the desire for expedience. Her mobility issues have made me reluctant to try to take her out into the world. I did try to find a van service I could pay to pick her up in her wheelchair and take her to my house or a concert. The local ambulance
company offers a wheelchair service for non-emergencies, but it’s $80 each way. I know of no other alternative.

Her incontinence complicates matters. She needs to have her Depends changed every few hours. I don’t want her to feel uncomfortable, away too long from the aides who whisk her so efficiently in and out of the bathroom.

In any case, she now takes only a few steps from wheelchair to bed or toilet, and walks with a walker only a few times a week for physical therapy. When I want to take her for a walk in the wheelchair, and I try to lift her feet onto her foot rests, her legs are so rigid I can barely move them.

I
find, in a pile of Mom’s old letters, the tiny address book for which I’d been searching. I telephone Mom’s first 12-step sponsor from thirty years ago to see if she’d like to visit. When Mom sees this woman, she shakes with excitement, trembling as I’ve never seen her before. Though it’s probably been twenty years since they saw each other, I’m certain she remembers her. The woman lives two hours away but promises to visit again, and to bring a fiddle so she can play some music.

On her way out, the woman says to me, “Take care of
you
,” just like Mom used to do.

Two weeks later another old friend of my mother’s, a younger woman who used to teach Mom aerobics twenty-five years ago, comes to visit, and again Mom vibrates with what looks very much like recognition and joy.

I
n October, Medicaid takes over paying for most of Mom’s care. I write a check from her account each month to the nursing home for an amount equivalent to her Social Security and pension income. Medicaid now pays for her Depends, her Medicare premium, and her prescriptions. Every six months or so, I give Woodside
a check for her personal account, to pay for her haircuts. Medicaid allows her to keep only $50 a month in income.

My attorney advises that Mom keep her Blue Cross and Blue Shield supplemental insurance, as it may give her coverage that she wouldn’t have otherwise; some providers, for example, do not accept Medicaid, and private insurance may cover a medication or procedure that Medicaid does not. If I were to cancel her supplemental insurance, Medicaid would simply require that the money go to the nursing home.

M
om has few expenses, and her monthly bank balance will hover around $6,000.

I’m relieved that she’s been taken under the wing of the state, but thankful she knows nothing of her impoverishment.

I
t’s December, and the winter solstice is celebrated again in our community. I want my mother to be able to join me as she has for the past five years, but I’m still puzzled by how to get her around. It finally occurs to me to call our city’s bus service for the elderly and disabled. I assume that they won’t have service on a Saturday evening, and I’m right, but they tell me that I can file an application for my mother to qualify for transportation guaranteed by the Americans with Disabilities Act. A special bus with a wheelchair lift can take her almost anywhere around the city, evenings and weekends included, for just a few dollars each way. I’m thrilled, and so grateful.

I
find the old report of my mother’s neuropsychological exam from 1997 and read it again carefully in case I missed something. The exam found only a slight cognitive decline at that time—mostly just her obsessive-compulsive attention to detail—but two words jump out at me that I don’t remember seeing before: “bipolar disorder.”

Apparently the psychiatrist who ordered the exam had already determined this diagnosis. The “hypomania” referred to in the report—her rapid, excessive speech—is typical of bipolar II disorder, a less severe form of bipolar disorder in which the patient does not experience a full-blown manic episode. Why had I never noticed these words? I wonder. I probably found it too difficult to confront the possibility that, like my father and brother, my mother also had a major mental illness.

This time I force myself to stop and stare at the words, to let them sink in.

Bipolar II disorder would explain much of the strange, antisocial behavior and irritability that first concerned me sixteen years ago, around the time Mom kicked Ben and me out of the cottage when I was six months pregnant.

I learn that bipolar II disorder is often misdiagnosed as major depression because patients usually seek help when they are in a depressed, not in a manic, state. What I saw in my mother at that time did lean more to depression—sleeping odd hours, withdrawal from friends, letting the house go. The manic side might have been, in addition to her rapid and excessive speech, how she often could not sleep at all because she felt excited about something, such as an upcoming visit with me. I see from the report that Mom was taking lithium, a common treatment for bipolar disorder.