Inside the Dementia Epidemic: A Daughter's Memoir (26 page)

I
n late December, when I go over Mom’s bills, I feel nauseated. I have been putting off figuring out how long her savings will keep her at Elm Haven, not wanting to know. I finally sit down with a calculator. She has $7,000 left in her checking account, $55,500 in mutual funds, and $33,000 in her IRA. She has the same incidental expenses as she had at Greenway, such as Medicare premiums and supplemental insurance, with the exception that she now pays $160 a month for Depends. After tapping in all the figures, I estimate that my mother will be able to afford Elm Haven for an additional twenty-one months. That’s longer than I expected, but still not enough time. At seventy-five, she is young and could live many more years with dementia.

I’m beginning to like the staff at Elm Haven so much that I want to keep her here as long as possible. I consider selling the cottage to pay for her care. I think about how it’s been in the family for three generations, and how renting it in the summer will, over ten years or so, equal the amount we would earn in a sale. I
think about how Mom might get injured and have to go to a nursing home anyway. She might die unexpectedly before we spend all the proceeds from a sale. The more I ruminate, the more I believe she would not want me to sell it.

In 2007 in New York State, she’ll qualify for Medicaid as soon as she spends down her assets to less than $4,200. She transferred the cottage to me in the spring of 2005, and at that time the state had a “look back” period, in which they check for transfers and gifts of assets, of only three years. (It has now been extended to five years, but Mom is exempt because the transfer happened before the law changed.) If we apply for her Medicaid after the spring of 2008, the value of the cottage would not count as an asset. I lean toward keeping the cottage for our children, as their Grammy would want.

I fear what will come next. To avoid a nursing home, I call Dan at the Office for the Aging to find out if there are any assisted living places in our county that accept Medicaid. He tells me that there are three Medicaid-funded assisted living places within a forty-five-minute drive of our city, but they are not “secure” for people who wander, and they will not accept people who need the level of care that Mom requires.

It makes no sense to me that Medicaid in our state pays for nursing home care for people with dementia, but usually not “secure” memory care assisted living such as Elm Haven, which costs, on average nationwide, about thirty percent less than a nursing home with dementia care. In 2011 the national average for dementia care in a semi-private nursing home room will be $222 per day, or $81,030 a year; assisted living with dementia care will average $152 per day, or $55,428 per year. I suspect that our government counts on the fact that most adult children fear nursing homes, and our own guilt for considering one, and that we will choose instead to pay out of our pockets for a private facility or
care for our parents at home, saving the state billions of dollars a year.

Dan suggests I call the county’s Long-term Care Services office, the department that finds institutional care for people who do not have private funds, and they tell me the same thing, that the next step in our area can only be a nursing home. I make a note to visit a few nursing homes over the next year.

C
ompared to her last six months in assisted living, Mom’s first six months in memory care are extraordinarily peaceful and healthy. She doesn’t fall. And now that she’s taking a melatonin supplement, as Michelle, the head nurse, suggested to regulate her sleep cycle, Mom’s going to bed and getting up at normal hours, eating breakfast and joining the morning activities.

To stretch her savings, I’ve canceled the private aide through Maggie’s agency. I tell Maggie on the phone that I’m trying to save money in case Mom needs a private aide for medical reasons. I tell her how very grateful I feel for her help and reassurance.

I
t’s February and I’m asleep in Ben’s old room at his parents’ house in Queens. We’re visiting for Chinese New Year, the first time we’ve been out of town since our vacation in August. Twice in the night I sit up, jolted out of deep sleep. “Where is Mom? Is she okay?” I ask myself. For a moment I can’t remember if she’s back at our house, wandering around alone, or in bed in her old room at Greenway, uncovered, cold. Then I see her; she’s in the living room at Elm Haven next to the fireplace, and in the dining room chatting with her friends. She’s hundreds of miles away from me but she is safe and loved. She’s fine. I take a breath, close my eyes, and fall back to my own dreams.

I
n early April of 2008, I cash out the last of Mom’s mutual funds in one fell swoop, $52,500, and deposit them in her checking account. Only her IRA remains—$33,700. Each closing of an account sounds to me like a death knell.

Then, a new shock.

I get a call from Michelle, the nurse, on a Saturday afternoon. My mother has been in Elm Haven for seven months.

“Martha, your mom is fine but I need to tell you that we found her in bed with another resident. We found her with Bill.” She pauses. “Our rule is that she has to go to the emergency room to be checked for trauma. She seems fine, but if you can’t take her, one of us will have to take her.”

I’ve met Bill, a short, portly, balding man with a walker. I’ve seen Mom cozied up next to him on the couch, her eyes shining.

“Are you sure she has to go? What if I say, as her health care proxy, that I don’t think she needs to go?” I’m not at all surprised that the staff found Mom in bed with a man. I know that my
mother is a sexual being. Over the years she’s mentioned her attraction to this man and that. Whatever Mom and Bill were doing was as consensual as sex can be for two people unable to make and remember decisions. And I bet Bill isn’t required to go to the E.R.

“It’s just a precaution,” Michelle says. “We have to make sure she’s not injured.”

“Fine. I’ll be right there.” I’d rather take Mom myself than have an RA take her—I can keep her calm and unafraid, and she might be there for hours.

On my way to the car, I see my neighbor, Karen, one of the facilitators of our village discussion of dementia, the one who works with caregivers and whose father had early-onset Alzheimer’s disease. I tell her my mother was found in bed with a man.

“Yes!” Karen says. She smiles and gives me a thumbs-up.

I ask her if her father in the later stages of Alzheimer’s ever climbed in bed with a woman other than his wife.

“All the time!” she says. “It happened all the time.”

I tell her that I’m fine with it, I just don’t want Mom dragged to the E.R. each time it happens.

“I know. It’s crazy, isn’t it?” she says. She shakes her head, then reaches to give me a hug.

At Elm Haven, I find Mom perky and smiling, sitting in the main living room. Her hair is a bit disheveled. The two RAs who meet me are calm but their eyes are serious, their brows furrowed.

“I’m sorry I couldn’t clean your mom up,” one says. “She had a bowel movement, but...”—her voice trails off—“I don’t think we’re supposed to clean her up...in case there’s evidence or something.”

I nod. She hands me a pile of clean clothes for Mom in case I change her at the hospital. “They might need the Depends we found her in, for evidence, too,” she says. “It’s dirty, though.” She
frowns again.

“I guess we should bring it,” I say. “I don’t know how these things work.” They seem to be looking to me to know what to do, but they might have more experience than I do with this sort of thing.

One asks me if I want to press charges. “We have to ask you that,” she says.

I tell her no, I don’t, and shake my head. “I think this kind of thing is completely normal. And Mom seems fine.”

I would expect my mother to initiate cuddling in bed, or more. And I hope the staff treats these incidents as normal and not a cause of upset.

Mom walks to the car with me without signs of injury or emotional trauma. On the two-minute drive to the hospital Mom wants to untie the plastic bag with the dirty Depends to see what’s inside, and she won’t stop when I ask her. I snap at her for the first time in a long time—“Mom, let go!” She holds on tight but I manage finally to snatch it away. I take a deep breath and will myself to start over. My plan is to treat this E.R. exam as just another doctor’s visit, to take the next few hours one minute at a time. Mom probably won’t realize she’s in the hospital; she’ll believe she’s just in a doctor’s office. I plan to squeeze her hand and enjoy her company, even if in between we have to deal with nurses and doctors and a possible exam of Mom’s private parts. If we’re required to go through this, I might as well make it as pleasant as possible for both of us, just another outing.

The nursing staff treats Mom gently, never asking what happened or too many questions that she can’t answer. I tell her main nurse, right away, just as I did with the aides at Elm Haven, “I want you to know that I’m not worried about this. I think it’s entirely natural.” I don’t know why I think it’s important to say this,
but I do. The nurse looks puzzled and says nothing.

A woman in street clothes with a nametag comes in and asks to speak with me in the hallway. She’s the crisis counselor, she explains, and gently asks me if I think a complete exam is necessary. I say no, and she agrees. A nurse will simply do an external, visual exam to check for bruising.

As Mom and I wait for a doctor to check in, we share a pint of blueberries I brought from the store, and I hand her a can of raspberry spritzer to sip. I’ve learned to be prepared for long hours in the E.R. I brought a newspaper and a book to read, and took a few extra minutes to drive out of my way to pick up the snacks and food for dinner for the two of us in case we were there through dinner time. I’m no longer willing to leave my mother alone in the E.R., even for a few minutes, to get food from the cafeteria.

I hold my mother’s hand through the nurse’s exam, which shows no bruising. When the nurse cleans Mom, I feel embarrassed for Mom, but she just smiles at me and squeezes my hand. Afterward, sitting up, Mom says, “I feel a bit sore” and points toward her tailbone. I wonder for the first time if perhaps she fractured a bone again, if Bill was on top of her, pressing down. The last thing she needs is another fracture. Or maybe the padded discs in her HipSavers pressed against her bottom and left a sore spot. A doctor asks Mom to sit all the way up and he gently presses here and there; finding no pain, he pronounces her fine. I wonder if he’ll order an X-ray, but he doesn’t. I decide to wait and see how she feels later; she’s been through enough.

While we wait for her discharge papers, Mom rolls over under the blanket, smiles at me again, and closes her eyes. “I’ll be right here, Mom,” I say. As she sleeps I hold her hand and stroke her hair, gossamer between my fingers and her tender forehead. My fingertips skim her temple in gentle arcs; I touch the tracings of veins and pulse, her skin as light and thin as phyllo.

• • •

W
hen we arrive back at Elm Haven three RAs hug Mom tight. Mom kisses each of them on the cheek. From across the living room where she’s leading a discussion, Vicki, the activities director, cries, “Look who’s here! Welcome back, Judy!”

“Thank you!” Mom says. “It’s good...to be here!”

After I kiss Mom goodbye, an RA gently turns her away from the door, her arm around Mom’s waist, with promises of soup and dinner. I leave without worry, confident that the staff will give my mother lots of extra attention. From my car I call Diane to update her as I promised I would. I ask her to have the staff keep an eye on Mom’s discomfort around her pelvis. I’m calm. Through a potentially upsetting and confusing experience, I managed to help my mother feel peaceful. I fully accept, as well, that I am my mother’s advocate in all situations, that I am the one person who knows best what my mother needs and wants. I no longer shirk or swerve or defer.

I
do feel nervous, though, about one thing—talking with Diane about their policies around residents and sex. I postpone it. I fear that, if I ask her to clarify their policies, she’ll resent my asking. Do they have written guidelines for monitoring sexual encounters between residents for safety, privacy and consent? What if they don’t have a policy? What if they do, but it’s too strict and Mom and Bill are kept apart?

Two weeks after the incident I gather my courage after a visit with Mom, pull myself into Diane’s office, and plant myself in a chair by her desk. I explain that I’d like my mother to have enough privacy to enjoy Bill’s company but enough supervision to make sure that she’s not being forced to do something she doesn’t want to do.

Diane nods, leans back in her chair, looks at me pensively through her glasses, and smiles. “We all love to have someone to crawl into bed with,” she says.

“So why did Mom have to be seen in the E.R.?” I ask. “Is it a state rule?”

“Not exactly,” Diane says. “Whenever there is physical contact between residents, we’re required by the state to offer both a police report and a physical health assessment.