Inside the Dementia Epidemic: A Daughter's Memoir (11 page)

Then, on days when “Nobody loves me, everybody hates me; I’m going to eat a worm,” you can open this up and remind yourself what a fine person you are.

Love and kisses,

Mom

It’s hard to stay mad at my mother when I can see that she loves me like that. I know she intends only good.

B
y the end of May 2005, when my mother has lived with me for three months, I meet on my own with the psychologist. She tells me that the fact that Morgan hates having Grammy at our house “seals the deal”: To protect Morgan’s self-esteem, Mom “must live elsewhere.”

She explains how difficult I might find it to arrange help for Mom, whether at the cottage, at the senior apartments in a nearby town, or here in the city. Arranging care long-distance, even from across town, would be really stressful for me, she warns: “Aides don’t show up, the agency will be calling you all the time; you’ll be on the phone left and right making sure your mother has all the help she needs.”

I ask her where she’d recommend that Mom live and she says there are two assisted living places in town that can handle mild dementia. “Your mother can have a good life in assisted living,” she says. “When you do get together you will be able to just enjoy each other’s company.”

I nod, picturing Mom and me going out to eat and to concerts, and how I could drop her off afterward into someone else’s capable hands. Though I don’t make a decision right away, the thought lightens my spirit.

E
very development that follows makes the decision seem inevitable. Soon, my mother shows another stage of her deterioration—hostile reversals and more accusations.

Near the end of May she says, with a gleam in her eye, “I want to move back to the cottage. At least until next winter.” Her voice is flat. “I’m tired of your constant negativity.”

My stomach contracts; I can feel my pulse in my skull.

“Well, I’ve had it with your stubbornness and put-downs,” I say.

With a deep breath, I race on: “If you move back to the cottage, your friends and neighbors there will have to make all the arrangements. They’ll have to come here and move you back. They’ll have to arrange rides for you. They’ll have to find someone to shop for you and clean and cook. They’ll have to make sure there’s a railing on the footbridge.

“I’m not willing to help you long-distance, Mom. I can help you only if you live here in town.”

As I spew all of this I know perfectly well that Mom cannot make these arrangements to move. She cannot plan anything beyond a phone call or two. There is no chance that she will go back to the cottage on her own.

Mom glares at me, then looks down at her book and waves me away.

A
t the computer I research “guardianship” on the Internet, in case Mom calls her friends and convinces them to help her return to the cottage. If she were to insist on moving, and I refused to help her, I would be keeping her here against her will. I might have to
go to court to prove that she can no longer make these kinds of decisions for herself. I understand from my support group that my having Power of Attorney is insufficient; without guardianship I cannot stop her from trying to move back to the cottage.

I call Bill and Susan, Mom’s neighbors at the cottage, to warn them that Mom might call them for help to move back there. I ask them to please tell her it’s a bad idea. I tell them how she can’t drive, shop, cook or clean for herself, how she can’t pay her bills. “Of course,” they say. “We didn’t realize how bad it was.”

A
fter dinner, Ben and I talk for a long time. We decide that we’ve tried our best but it’s not working. We will give Mom a choice and a deadline: She must make her own arrangements to live elsewhere, or try a “respite” stay, a temporary two-week visit, at one of the two assisted living places in town. We knock on her door then stand in her doorway together and tell her that she must decide what she wants to do within a week. We know that time means little to someone with dementia, but a deadline will tell Mom that she must make a decision soon, that she cannot delay. We tell her that we can help her visit the assisted living homes to see which one she likes better. Mom listens in silence, then says, “Just go.”

K
nowing that within a few minutes Mom will probably forget what we’ve said, I type a seven-page letter with all the reasons why she can’t live at the cottage anymore, why it’s not working for us to share a house, why she needs to try a short stay at an assisted living place. The next day, after reading and re-reading the letter, Mom says, “It makes sense.” She’s calm. I can tell she wants what’s best for me and Ben and the kids. The letter helped her make her own decision and she’s willing to visit the assisted living places.

I hope that, once she moves, she will forget that I said it was temporary.

• • •

I
ask Lydia to go with Mom and me to tour one of the assisted living places. Another neighbor, Andy, who has always enjoyed Mom’s company, comes along for our visit to the other place. Mom will feel more comfortable about her decision if someone else whom she trusts tells her they like the assisted living places.

One place, Greenway, is a non-profit in a well-maintained building overlooking the city. It includes both independent apartments and an assisted-living section with one-room studio apartments for people who cannot cook safely on their own and need help with meds and bathing. We find the staff friendly and inviting. Part of me, the part deep inside that still denies that my mother needs help, hopes that Mom will act normal enough during the interview to qualify for an independent apartment. But after talking with Mom for only a few minutes the director whispers to me, “Your mom will definitely need to be in assisted living.” I feel let down, almost embarrassed, as if my mother is deficient.

Greenway brings in students from the nearby universities who volunteer with activities, classes, and cultural events. I’m a bit put off, though, by residents slumped sound asleep in chairs and wheelchairs along the main hallway in the assisted-living section, their heads sagging. Mom seems to be much more “with it” than these folks. I fear that if she moves here she will quickly decline.

The other place, Maple Grove, is closer to us, and is also homey and well kept with warm staff, many activities, and a view of a small lake. But it’s private pay, without a sliding scale. If Mom were to move here and run out of savings, she would not have her rent reduced to fit her Social Security and teacher’s pension as she would at the non-profit, but would be asked to leave.

When we arrive at Maple Grove, a young woman is playing the violin in the living room. I’m happy to see that the residents in the audience sit up straight with open eyes. Mom, Andy, and I look
only at the main building at Maple Grove for people who need minimal assistance. Their smaller building next door is a locked “memory care” cottage for people with dementia. In my mind I picture the memory care cottage as a mini nursing home with brusque, overworked staff in white jackets, the residents alone in their rooms in the most advanced stages of dementia, bed-ridden or in wheelchairs, spoon-fed, unable to speak. I imagine stark white hallways, silent except for the occasional moan or piercing cry. When asked if we’d like a tour I just shake my head and mumble, “No thank you.”

When we return to my house, Mom and I compare Green-way and Maple Grove. Their assisted living residences offer similar amenities: three meals a day in a main dining room, snacks, a library, a hairdresser, daily activities such as coffee and conversation, ceramics, concerts, and outings in a facility van. I prefer Maple Grove, even if it’s private pay, but I don’t tell my mother. I want this decision to be hers as much as my own, to respect what remains of her ability to choose her own life. As we talk, Mom forgets the details of each place, but remembers how she felt when she met the staff. She has always been sensitive to whether or not she feels an emotional connection with people. When she says that she likes the staff at Greenway better, that decides it for her, and for me. Greenway has only one room available, a tiny room overlooking the parking lot, but I know that it won’t be empty for long. I fill out the financial summary, the social history, and the medical forms. I write two checks for Mom to sign: one for the first month, $2,400, and one for the same amount for the deposit.

At 7:00 a.m. the next day, before anyone else can ask for this room, I drive to Greenway and slip the completed application under the case manager’s door. As I straighten, a wave of relief surges through my body. This
place is what Mom needs. What I need.
She can enjoy her own routine, her own space, and new friends, and I
can hand over this daily responsibility of watching and helping her to a paid staff. I can return to a role I’m more comfortable with, behind the scenes—independent daughter visiting her mostly independent mother—a relationship I fully expect will be healthier for all of us and a great deal easier for me. Any guilt I feel about moving Mom into an “old age” home lies buried, at least for now, deep below this overwhelming feeling of relief.

W
hen Mom moves into Greenway, she has more savings than most Americans, thanks to a lifetime of pinching pennies. Upon her retirement from teaching on medical disability at age forty-nine, she realized that she needed to take charge of her financial future. She took a class on the stock market, and formed an investing club with a few women friends. For the next decade and a half, until she reached early-stage dementia, Mom studied the mutual fund reports called prospectuses (I remember that word because she talked about them all the time), and tracked her income, expenses, and investments each month.

According to
Forbes.com
, thirty-seven percent of Americans in 2005 have no retirement savings at all, and for those who do have savings, the median value is only $27,000. In June of 2005, Mom has $17,700 in her checking account, and a total of $121,500 in an IRA and mutual funds. Using her monthly income from Social Security of $882, and teacher’s pension of $607, she will have to deplete her checking account by an additional $911 a month to
pay for Greenway, plus $300 to $500 a month for Medicare and supplemental health insurance premiums, prescription costs not covered by insurance, dentist visits, haircuts, and clothing. I try not to think about how soon I’ll have to dip into her IRA and mutual funds, or how many years her savings will last. Deep in my heart, I feel an acceleration—the meter is running.

I
visit Mom about once a week; if I wait longer than that she chides me in a gentle tone: “I thought you’d given up on me.”

“No, of course not,” I say.

I don’t hear in her words that she might feel lonely or even rejected. I just hear confusion. I remind her that I’m close by and will visit her often.

I
drive her to all of her doctor’s appointments, and her favorite thing to do afterwards is to go out for an early dinner or ice cream. Meals at Greenway disappoint her. Unlike the residents in the independent section of Greenway, as an assisted-living resident, Mom is not allowed to stand in line for the fresh vegetables and fruit in the salad bar; she must wait at her table for the same poor iceberg lettuce with tomato and cucumber or macaroni salad. I imagine this rule about the salad bar materialized because many assisted-living residents become confused and might take too long choosing which items they want, perhaps growing agitated, while the independent residents wait in line behind them. Nevertheless this rule is one of many small indignities. Another indignity is that staff members may open her door without knocking to tell her it’s time to eat. When I notice a wooden chair in the middle of her room Mom tells me a staff member came into her room at six o’clock one morning while she was sleeping to change a light bulb in the dome in the ceiling, bringing the chair with her to stand on; not only did the staff person not ask permission to enter the room,
she never finished the job and left the chair where my mother could bump into it.