Inside the Dementia Epidemic: A Daughter's Memoir (22 page)

In order to hold the room I will need to drop off all of her paperwork (social and medical history), plus a check for $8,172.10, first thing the next morning.

Crystal tells me they will visit Mom at Greenway and do an assessment. If we decide to go ahead, Ben and I can move Mom the following Tuesday.

I tell Crystal I’ll let her know my decision first thing in the morning. Even with Maggie’s recommendation, the onus is on me, no one else. I could get it right, or wrong.

Friday morning I throw the dice, cash out more of Mom’s dwindling mutual funds, and deliver the check.

B
en has taken the day off from work to help me, and while I finished various errands, he’s already emptied Mom’s desk and drawers into boxes and packed up her clothes.

When Mom wakes up from a nap in front of the TV, I stop and sit with her and explain our plan. One of Mom’s private aides sits beside her.

“We’re going to have a bit of an adventure today,” I say. “We’re moving you to a really nice place where you’ll get more help.”

“I need help?” she says.

“Yes, you do, Mom.” I don’t know how to sugarcoat it. “You’re incontinent—and that’s okay—but you need help all the time now to make sure that you’re clean and dry.”

“Oh.”

“The new place is only three minutes away from us! It’s really, really nice, just like here, but we won’t—you won’t—have to pay extra for the help you need.”

“I won’t have to pay...?” She seems startled at the thought that any of this is costing her money.

“Yes, you won’t have to pay extra. The new place will be just as nice but less expensive.”

Mom nods slightly, her eyes wide.

A few residents stroll over to say good-bye. One woman has tears in her eyes and says, “Your mom is a great lady.”

Another stops me as I escort my mother to the door. “I wanted to say good-bye, Judy.” She clasps Mom’s hand and Mom smiles at her.

The woman twists toward me and says, “I hate it when people move out and nobody tells us. And the staff can never give us a forwarding address. We sit together at meals and get to know each other, then all of a sudden your friend is gone! It’s just not right.”

“I know, I agree,” I whisper to her. “But I didn’t want to make it harder for my mother by walking around with her saying goodbye over and over. I’d have to keep explaining, and she might start to feel confused or anxious. You understand, right?”

I feel defensive again. There are so many choices, so many needs of other people to consider. In this case, by making the move easier for Mom by not saying a dozen goodbyes, I’m making it easier for myself as well, placing my needs in front. I’m pacing myself for another long day.

O
h, please let Elm Haven be the haven we need.
I have been so stressed; I have been overeating—bits of Ben’s birthday cake, anything I could get my hands on. If I can’t get Mom safe and settled, I could end up weighing three hundred pounds.

As I meet with the staff, my thought is as intense as a prayer:
Let me like you.

The head nurse at Elm Haven, Michelle, is a tanned, fit, and upbeat redhead in her forties who looks like an athlete. When we arrive, she trots out to the living room in her khakis and sneakers to greet us, and squats down in front of Mom’s chair. She looks deep into Mom’s eyes, and gives her the signature smile that we learn will always light up a room.

“Welcome, Judy!” she says. “I think you’re really going to like it here!”

Though I’m still on hyper alert, ready to catch mistruths and false promises, her enthusiasm reassures me, at least at this moment, that all will be well.

In her new room, Mom sits in a cushioned rocking chair by the window to rest and watch us work. Ben unloads the van while Candy and I unpack her things. I notice for the first time that there is no tub or shower in her bathroom, only the toilet and sink. I ask the maintenance man where the shower is and he points down the hall. Hmmm, I think, just like a dormitory. I feel sad for a moment that Mom won’t need the lovely cloth shower curtain I gave her to use at Greenway.

Various staff members come in to chat with Mom. The housekeeper introduces herself, and Michelle comes back several times to check that Mom has everything she needs. As we unpack, an elderly man shuffles in Mom’s open door and stands staring at Mom. He’s pale but has chiseled features and a full head of salt-and-pepper hair. I say hello and tell him that Mom—“her name is Judy”—is new, she’s moving in today. Though his face lies slack, his eyes betray a hint of amusement and curiosity. He stares another moment, silent, then turns and shuffles out. I look over at Mom: She’s wide-eyed and squirming.

“I guess people kind of wander around,” I say. “Maybe he wanted to say hello.”

Mom shakes her head and purses her lips. “I don’t like that,” she says.

Mom pushes herself up from the chair and walks to the bed, lies down on top of the quilt, pulls off one sneaker, and closes her eyes. I pull off the other sneaker, but when Mom is almost asleep, the director, Diane, knocks and comes in. She’s a tall, middle-aged woman with dark-rimmed glasses and short, blonde hair.

“Is that you?” she asks my mom about a blown-up, framed photo we’ve hung on the wall over Mom’s bed of me at eighteen, the one where Mom hired a professional photographer. It was a cool day in March and I’m up in a tree, standing on the thick fork of its trunk, my arm draped on a branch; my hair is brown and
short, layered in a Dorothy Hamill cut; my smile and the knowing look in my hazel eyes both impish and mature beyond my years.

“Yes, that’s me,” Mom says.

“No, it’s me,” I say. I can’t keep myself from correcting her on this one; I am not my mother and she is not me. And has she forgotten what I looked like?

Diane asks about another photo on the wall, the blown-up, framed photo of Mom canoeing around her lake. “Did you live on Silver Lake?” she asks, referring to the history I provided on Mom’s intake papers.

“No, never,” Mom says with conviction.

“You lived in the cottage on Silver Lake for twenty-five years,” I interject. To Diane, I say, “Mom’s getting tired.” Doesn’t the staff realize, I wonder, how exhausting this kind of long day is for someone with dementia?

At 5:30 it’s time for dinner in her new home, so with her walker, Mom and I make our way the few feet to the dining room while Candy eats her bagged meal in Mom’s room. Mom and I will have the smallest, “family” dining room all to ourselves, with its centerpiece of plastic leaves and pumpkins. Dinner disappoints us, though, and Mom eats little except for dessert. The director stops to chat.

“You’re probably just tired, Judy. Maybe tomorrow you’ll wake up with more of an appetite.” I like that the director checked on us. I feel confident that tomorrow they’ll make sure she eats. She’ll be fine.
Won’t she?

As I leave I feel the same as the day I left Mom at Greenway after her stint at the rehab center: sad and empty, but light-headed with relief.

A
week after Mom moves in, Maggie calls me again. Whenever she calls, my anxiety rises in anticipation of a problem. The first
thing she tells me, though, is good news. The day before, Candy, the aide, drove Mom to the Friends of the Library book sale, to the park, and out to lunch. Mom “had a great time.” But when Candy had arrived at eight a.m., Maggie says, she found Mom in bed asleep with her clothes on, as if she hadn’t been dressed for bed the night before, and wearing a soaking wet Depends.

The Elm Haven RAs keep a log of their notes in the room, and the previous night’s log said that Mom has been doing some kicking and hitting. Maybe that’s why she wasn’t changed. Maggie suggests that I “keep on them about the hygiene stuff.” She also offers to have her aide give Mom a shower on the days she’s there, as Elm Haven charges extra for showers beyond two days a week.

Diane, the director, tells me that Mom has been agitated, or “restless,” as she prefers to call it, as it’s a new place and she doesn’t know anyone, and the staff are used to that. If she was kicking and hitting Sunday night, she says, they would have left her alone and let her sleep in her clothes. Diane will check the records for that night, but we are more concerned about the wet Depends. “It might break down her skin,” I say, and she agrees.

I tell Diane that Michelle, the nurse, has called me already with a few concerns and that I appreciate the clear communication. I tell her they can call me at any time. Diane says that likewise if I have any concerns I can call them at any time, day or night. This is a welcome change from Greenway.

I also tell Diane that Maggie’s outside aides will be tapering off next weekend, that after this initial period of adjustment they will be coming only once a week, for about six hours, to take Mom out.

I
need to order Mom more HipSavers online. Also, a prosthesis for her mastectomy. The prosthesis seemed to get lost when she went to the hospital in the summer when I was out of town on vacation. When she first lost it, she would pat her chest and laugh
as if to say that something was missing. Though she doesn’t seem to notice its absence now, I still want to make sure that my mother has everything she would have ordered for herself a few years ago—the same kind and color of Keds, the same high-necked, ruffled nightgowns she liked because they hid her mastectomy, those ubiquitous, ivory trouser socks. I don’t care if my mother’s shirts lie concave on one side (both sides are pretty flat now, anyway), but I would feel guilty if I didn’t provide, with her checkbook, the kinds of personal products and clothing she used to care about very much.

I
am soon increasingly impressed with Elm Haven. They have ordered a different style of Depends—the kind in one piece, like underwear, without the side tabs that made it so easy for Mom to rip them off. No more waking up wet in bed. Problem solved.

I
n late October, two and a half years since she moved in with us, I bring Mom along with me and Ben and the kids for an afternoon at the lake. I imagine that she will light up at the sight of the cottage, but as she sits outside with me in the front yard in the shade of an umbrella, and watches the waves, her expression is flat, muted, as if the yard is just a place like any other.

At first, I feel deflated, but within moments I realize something: It’s time for me to stop trying to bring my mother pleasure through what’s left of her memory. If she no longer recognizes the deep blue swell of her lake, if these pieces of her life no longer move her, then truly there’s nothing but the present moment—and other people.

I decide to take her out for a rowboat ride. We had asked a boat builder in Maryland to make the forest-green rowboat, in the same color and style as I remember my grandfather’s old boat. I wonder if feeling the rowboat rock softly on the water will help my
mother experience the joy in the lake she used to feel in her canoe, or when she watched the waves from her desk.

Ben helps me support Mom under her arms as she steps in. Mom sits in the middle of the wide seat along the back of the boat, Andrew squeezes into the bow, and from the middle seat I row the three of us a hundred feet out into the lake. I keep my eyes on hers. She grips the edge of the seat, her back ramrod straight, her eyes wide but not scared. We bounce gently on the waves and Mom releases her hands from the seat to stretch her arms and clasp the sides of the boat. She smiles. When I tell her that she can lean against the high back wall of the boat, she scoots her bottom toward the wall and relaxes.