Inside the Dementia Epidemic: A Daughter's Memoir (15 page)

A
n eye doctor tells me that my mother must have had cataract surgery in her right eye; the implant now rests slightly askew. I vaguely remember, perhaps ten years ago, Mom telling me about the cataracts. Surgery isn’t necessary, the doctor says, but glasses will make a big difference.

Mom puts on her new bifocals and I hold her arm as we walk to the car. As I drive her to lunch she keeps taking the glasses off, pushing them on top of her hair, the way she used to wear her sunglasses, like a tiara.

At Greenway, I help her pay more bills and she places the glasses on her desk. “You’ll see so much better if you wear them,” I say, but she leaves the glasses on the desk. Frustrated, I kiss her goodbye on the cheek. Down the hall, I ask the RAs if they could please encourage her to wear the glasses, though I doubt that they will have time to check.

I realize later that my mother is not being stubborn; she’s not ignoring me because she thinks she knows best. Mom has never
worn prescription glasses, only contacts. Her physical memory of glasses is that movement of pushing sunglasses up into her hair. To her, glasses belong on top of her head on a cloudy day when she’s driving, on her desk when she’s home. She may not be able to learn, to remember, a new habit of wearing glasses all the time.

A
week later, the physician’s assistant in Dr. Claiborne’s office, a bearded man of about sixty, dons latex gloves and slowly strips off Mom’s socks. The source of the pain in Mom’s left foot is apparent: Her nicotine-yellow toenails are half an inch too long, thick and hard; some curl under. I flush, embarrassed, as if I’m a neglectful daughter who doesn’t make sure that her elderly mother’s toenails are properly groomed.

The PA tells me that thickened nails are a common development in the aged—caused by a fungus—and that Mom must see a podiatrist to get the nails clipped and treated.

F
rom then on, it seems, Mom’s life becomes a series of medical crises. In March, Daphne calls me to tell me that my mother’s left knee and right ankle are swollen and she’s having trouble walking. No one knows for sure if she fell, but I assume she rolled out of bed. Soon after she moved to Greenway, Mom began to pile magazines and books from their library on the inner edge of her bed against the wall. She seems to need more and more reading material around her because she’s unable to read anything to the end. The stack extended the length of her bed and rose a foot high, with a second stack along the length of the first. She had a space only two feet wide along the outer edge of the bed on which to sleep. I pictured her scrunched up on her side, elbows and knees tucked in tight to her body. She’s taken off the bed rail, the one Ben and I gave her, and stuck it in her closet.

“I don’t need it,” she says. I suspect that the RAs are not allowed to move residents’ belongings, and that each time they change her sheets, they replace the books. A few months ago I finally ignored Mom’s protests—“Just let it go; I can take care of it”—and pushed two full carts’ worth back to the library. Now the pile is back.

While we wait for the results of an X-ray Mom needs to go to the bathroom but is unable to walk so I ask for a bedpan. The nurse’s assistant slips it under Mom but nothing comes out. As the nurse and the nurse’s assistant stand there waiting, Mom jokes that maybe she should just “twiddle” her fingers “down there” to get something to come out. I feel my cheeks redden. Mom might be making a reference to masturbation. I don’t yet realize that people with dementia often make inappropriate sexual remarks. I think it’s just my mother being flaky.

Because Mom can’t go in the bedpan, the nurse and assistant have to help her get up, transfer her to a wheelchair, and roll her across the hallway to the bathroom. I feel like I should help, but as I’ve never helped Mom in the bathroom before, I’m sure I’d fumble and embarrass myself or her.

The doctor tells us that she has a sprained ligament in her knee and her ankle will be fine. She’ll need a brace for her knee and a walker for a few weeks. He recommends that Mom have someone stay with her around-the-clock while her knee heals to make sure she doesn’t fall down again. When I tell him that Greenway can’t provide that kind of supervision he recommends hiring a private aide.

I must look distraught because he looks at me and says, “I’m so sorry. This must be very hard for you.” I nod, unable to talk. I’ve heard so much about falls, especially broken hips, leading to nursing home placement that I fear this might be the beginning of the end for my mother. I’m completely wrung out.

I appreciate the doctor’s kind words to me. It’s the first time that any doctor or nurse has talked to me about my own stress. Back at Greenway the RAs let us borrow one of their walkers. A visiting nurse will help her exercise her knee. Ignoring Mom’s objections, I fasten the bed rail back on her bed. At home, I look up a private home care agency in the phone book and arrange twenty-four-hour shifts. Then I retreat. I want to pace myself and delegate as much as possible. I resist making extra trips to Greenway to help Mom exercise. I expect the Greenway nurse to call me if there’s a problem. I still think it’s up to these other people to track her progress, not me. But am I wrong?

Mom doesn’t remember that she fell; the home care agency tells me that she resists using the walker, and because she’s forgotten that she hurt her knee, she can’t understand why the private aides follow her around all the time. When I come to visit, an aide tells me that once, when she reminded Mom to use her walker, Mom snapped back, “Why don’t
you
use it?” Understandably, by seven or eight o’clock at night, Mom gets tired of her constant companions. During the day, she enjoys chatting with them and the extra attention, but after dinner I bet her circuits overload and she just wants to be alone. When she gets testy with them, the aides tell her that, per their instructions, they must stay with her at all times. I don’t think about how intrusive this must feel to my mother, how she might even feel scared.

One night the agency calls me to tell me that Mom has shoved an aide out of her room; another night they tell me she’s slapped an aide. I’m disgusted, remembering that one time she slapped me on the face when I was a teenager, but the agency tells me they are used to “resistance.” We decide that if Mom gets upset again, the aides will just leave the room for a few minutes and let her calm down. I’d rather cancel the aides than let her be abusive.

I find it hard not to judge my mother harshly for her behavior. I’ll learn soon enough that private aides often do not receive enough training in dementia care to avoid triggering these moments of “resistance.” I’ll learn that, if the person with dementia grows agitated, sometimes you really do need to walk away for a few minutes, even if it means they might fall.

After three weeks Mom no longer needs the knee brace, the walker, or the private aides. Though she weaves a bit once in a while, it’s the same slight weaving she’s been doing for a few years.

T
hree blessedly uneventful months pass.

When both of my writing groups disband for the summer, my writing slips to a halt. Then, at work in mid-July, I receive a call from Greenway that precipitates a return to the pen. Sharon, the head resident assistant in Mom’s section, says, “We’re very concerned. Your mother has refused to eat or drink anything for twenty-four hours. She just threw up at the dining room table.” She tells me that my mother also peed in her pants in the hallway. As far as I know she’s never been incontinent. “She’s also weaving a lot more when she walks.”

I immediately drive Mom to the emergency room. She seems not to be in pain but she’s pale and weak; her speech is more confused than normal, and her belly looks swollen, as if she’s five months pregnant. The nurses suggest it’s just constipation or dehydration; Mom should feel better after she gets some fluids, they say. They expect that, if there were a serious problem with her abdomen, she would be in pain when they palpate her stomach, but she doesn’t feel anything.

I tell them, “My mother has dementia and can’t remember if she felt any pain. She can only talk about what she’s feeling right now, in this moment.” The nurses look blankly at me. I realize that
I may know more about dementia at this point than many nurses.
More reason to stay close by
, I think to myself.

After seven hours of tests, at ten o’clock at night we find out that Mom’s large intestine is obstructed. She’s been refusing to eat or drink because her stomach and intestines are backed up. The young surgeon on duty tells us that as she “appears to be in no pain,” the obstruction probably happened slowly, possibly caused by a tumor. The main problem, he says, is that there are a few areas in her intestine where the walls have ballooned out “to the size of a grapefruit.” Her blood work shows that her white blood cell count is high, indicating that the walls are stretched thin. The danger, he tells us, is that her intestine walls could rupture, and bacteria could cause sepsis and death. He recommends immediate surgery.

My mind starts swirling. I doubt that refusing this kind of surgery was what my mother had in mind when she requested the “do not resuscitate” order in her Living Will. But I look at her pale, drawn face and the prospect of death seems almost natural. What kind of life would she return to? Days in front of a large-screen TV?

I try to calm myself, to breathe.

I ask my mother, “Do you want this surgery?”

Without hesitation she says, “Sure. I guess we’ll have to!” She laughs with her usual abandon but I feel panicked, trapped.

I’m sure she’s not thinking about how difficult it would be for her to recover from surgery if she forgets why she needs to lie in bed for weeks. In this moment I don’t remember that, after her surgery, I could hire private aides to watch her around the clock. I acutely feel the lack of other family members, or a geriatric care manager, to call for advice.

Finally I say, “All right. Yes. Let’s go ahead.”

But, as we prepare for the operation, another X-ray shows that the swelling in her intestine wall has gone down. Her white blood cell count is back to normal.

“The balance is now tipping back,” the surgeon explains, “toward waiting and letting her rest, rather than operating.”

Thank God.

My education in geriatric medicine continues. It seems there are more obscure medical conditions than I could have imagined, and more bizarre treatments. After much ado with suctioning tubes and a colonoscopy, it turns out that Mom had a “flipped large intestine.” The bottom half had flipped all the way up and the creases where it bent had twisted to form the two obstructions. It’s a rare condition, and no one knows the cause. While the surgeon was in there with his probe he managed to straighten out the bowel. An X-ray shows that it’s not folded up anymore, and she won’t need surgery.

He tells us that once a bowel flips over it is likely to happen again, so we should watch her carefully. She can go back to Green-way the next day.

I
hire the private agency again for a week to have an aide with Mom during the day at Greenway to make sure that she eats, has bowel movements, and drinks enough liquid. The nurse on Mom’s floor, Brian, seems flustered, unnerved, by Mom’s sudden bowel obstruction and the incident of incontinence. In the hallway he tells me, “The RAs who work here are not nurses. At night, when I’m home, they can’t deal with medical problems. It’s not part of their job. They don’t have the training.” I’m not sure what he’s getting at, what he thinks I should do about all of this. I just cross my fingers and hope that Mom’s large intestine doesn’t flip over again.

N
ine days later, late on a Sunday night, an RA at Greenway calls me to tell me that Mom once again doesn’t look well. They’ve called Brian, the nurse, at home, and the staff all think my mother should go back to the emergency room. When I arrive at Greenway a half hour later I find Mom sitting on a bench by the RA station looking pale and tired. Her stomach doesn’t look bloated to me, and she’s still eating and drinking, but the RAs say that she’s weak and has been weaving down the halls again. I hug Mom and sit close to her, our thighs together, as if by touching her I might intuit the state of her health. Worn out, I lean over, my head in my hands, and think.

I look back up at the two RAs who stand in front of me waiting for my decision. I say, “Let’s keep her here and see how she’s doing in the morning. She won’t get any rest in the E.R. Staying there all night would probably only make her feel worse.”

They frown but say nothing.

I assume that the default setting of the Greenway staff is to send residents to the E.R. at the first sign of illness, both for the well-being of the residents and to protect the facility from lawsuits. I do feel a bit nervous ignoring their recommendation, as if I might get in trouble with the administration, but my decision feels right. I doubt Mom is in immediate danger, and she needs her sleep. To rely on my own observation and judgment rather than deferring to the staff—to say “no” to them—is a pivotal moment for me. I realize that after two years of looking out for her, I may know her better than anyone else.