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.
• • •
When 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.
“If I had been here when it happened,” she continues, “I could have asked your mom if she’d let me check for bruising or other injury. But residents don’t expect us to treat them like we’re doctors. They don’t expect us to check them in that way. They might be more comfortable with a doctor in the hospital.”
“That makes sense,” I say. “And Mom did have some discomfort around her hips.”
“Right.”
I tell her I noticed that the last few times I’d visited, since the incident, Bill always has a private aide in the same room with him.
“Yes, he will have an aide with him twenty-four hours a day. We can’t have him approaching the women here for sex. Even if your mother was not traumatized, even if she welcomed it, other women may not. They may have never been married, may have a different sexual orientation, or may not want to be touched. We just can’t take a chance.”
“Of course.” But if Bill’s family has to pay for a private aide, I think to myself, that’s an awfully high price for them to keep him at Elm Haven. If the women have to go to the E.R. after a sexual encounter, but not the men, the families of the men are penalized in turn by having to pay for extra supervision—as if the men are always the perpetrators and the women victims. The idea galls me, a child of the seventies and young woman of the eighties. I assume a woman’s needs to be equal to a man’s.
“You see,” Diane continues, “Bill likes about six of the women here. That’s common in men with Alzheimer’s disease. And it’s common with women, too—that loss of inhibition.” She pauses. “I do know that Bill can’t perform. I found that out from his wife after the incident. She lives right down the road, and told me he can’t do anything. Even so, we have to be very careful. With your mom, as you pointed out the other day, we have to think about brittle bones and possible injury.”
“That reminds me,” I say. “I never found out exactly what Mom and Bill were doing when they were discovered together. I should probably know the details, you know, for medical reasons.”
“We’re not sure what they were up to. Your mom was sitting on the edge of Bill’s bed with her shirt on but her pants off. She was still wearing her HipSavers and Depends. Bill had his pants and underwear off and was standing in front of her. It wasn’t clear if they were just getting into bed, just getting out, or doing something else.”
I tell Diane that I understand that Elm Haven must do what is easiest and safest for everyone, but I hope that Mom will be allowed to sit next to Bill, maybe snuggle with him, in a common room, supervised. I know she still notices him. Mom and I walked past him today as he was sitting in the TV room outside Mom’s bedroom and she paused to smile and wiggle her fingers at him. He gave her a big smile and waved back.
“Yes, she still has eyes for him,” Diane says. “She can certainly spend time with him. He just has to have an aide with him.”
I know that Mom has already lost most of her autonomy, but I leave disappointed for her nevertheless, saddened that she’s now lost this new source of comfort and the sparkle in her eye.
Sharp And Sweet
During this first year at Elm Haven, Mom moves from Stage Five of mid-stage Alzheimer’s disease to Stage Six: severe cognitive decline, or late mid-stage Alzheimer’s. I don’t recognize the new stage when it happens, but looking back, I can see it: her difficulty remembering her personal history; the lack of awareness of recent events and her surroundings; needing help with dressing; the sleep disturbances; needing full assistance in the bathroom; and the incontinence of bladder and bowel. Unlike many people living with Stage Six Alzheimer’s disease, though, she has not shown signs of daily paranoia, or of compulsive behavior such as hand wringing.
Also typical of Stage Six, Mom seems to clearly recognize familiar faces, including mine, but she can no longer name us. I don’t mind. I can tell by the way she smiles at me and reaches for me, by that deep, particular twinkle in her eye, that she recognizes me as her daughter. That makes me happy.
• • •
I learn that Carrie, our favorite RA, has “moved on.” She was such a sociable person; I imagine she grew bored with her promotion to full-time medication cart attendant. I doubt she enjoyed having to peer at the tiny notations in the medication logs and dispense pills all day.
Her departure reminds me again of Lauren Kessler’s book Dancing with Rose, in which she chronicles working for three months as an RA in a memory care facility. Turnover is so frequent, she says, that “a year is a long time in the life of an RA.” Without a nursing degree, personable RAs usually find little room in elder care for advancement, a pay raise, or respect.
I’ll miss Carrie, but I’m relieved that the young woman replacing her seems equally bright-eyed and thorough. I hope this one sticks around.
I’ve finally come to appreciate the difficulty of the RA’s job
, and I accept that if small things do not get done—if Mom’s shirt has a stain, or her teeth look fuzzy as if they weren’t brushed well, or at all, that morning—I cannot expect the staff to be perfect, as I cannot expect myself to be perfect. This is a hard lesson for me, perfectionist that I am.
I try to be the kind of family member who helps the staff rather than expecting to be waited on. At parties and holiday gatherings, I don latex gloves, stand at the kitchen counter, and help the staff dish the food. One weekend I spend two full days helping Vickie, the activities director, create an album with photos showing the residents dancing and batting balloons around the living room, planting flowers and playing badminton in the courtyard, snapping Vickie’s home-grown green beans in the dining room, and trying on Halloween wigs at the mall.
Thanks to dementia, I’ve learned to not sweat the small stuff—and much of what happens to my mother is small stuff. I don’t worry when an RA calls me to tell me that Mom is upset because another resident hit her on the head with a doll. Or when we move Mom to a double room to save her money, and she gets a bloody nose from a scuffle with her new roommate (who is soon moved to a different room). As my mother forgets, I relax. These incidents fall from my mother’s memory, and mine, like used stamps from paper.
There is one thing that bothers me, though. I’m ashamed that my mother has started to play with her feces. Michelle the head nurse tells me that Mom seems fascinated with their texture. A few other residents do that, too, Michelle says. There’s even a name for it: scatolia. I’m embarrassed by her behavior, but more ashamed of myself because I’m relieved beyond words that I don’t have to clean her. At a care plan meeting I try to joke that the $250 a month Elm Haven has continued to charge Mom for needing extra attention at night, even though she’s now sleeping on a normal schedule, is “well worth” their extra work. I can’t imagine doing this.
When I visit I find myself glancing at my mother’s fingernails as I hold her hand; they’re always clean. The staff keeps her fingernails trimmed short. They tell me that during the day they take her to the bathroom every two hours, and at night check her hourly.
Once I take a furtive glance at her fingers I’m able to push these ugly images from my mind. Perhaps I’m “in the moment,” perhaps in denial; either way, I hold onto the mother I know.
Grape pie is a local specialty along the shores of Silver Lake. My mother and I often enjoyed my great-aunt’s pie from the Concord grapes in her side yard. When I made a grape pie for Ben and the kids in early October and brought a piece to Mom, the RAs had never heard of grape pie and thought it was blueberry. That’s when inspiration hit. To celebrate the one-year anniversary of Mom moving into Elm Haven, I decide to bake thirty-two grape pies, one for each of the Elm Haven staff members: the day shift, the night shift, the three nurses, the director and assistant, the maintenance guy, the cleaners, the kitchen crew.
For two days in my neighborhood’s main dining room I pinch the skins off twenty-four quarts of purple grapes. I boil, then press the green pulp with a wooden spoon through a colander to separate the big, tooth-cracking seeds. I mix the skins, pulp and sugar into a crimson sauce, and roll out the store-bought crust. Andrew and Morgan help for a few hours with the skinning, and Morgan helps me deliver the pies in our van along with some of her home-baked lemon cookies. I tuck beneath the plastic wrap on each pie a photocopy of a thank-you note. We deliver the pies at night, and they fill every available counter and shelf in the kitchen. The maintenance man, I hear, eats two. Diane, the director, says they have never received such a special thank-you.
I don’t regret the effort of making those pies, but I found out from a neighbor passing by, as I was ladling the pulp and skins into the crusts, that I didn’t have to peel the grapes and separate the seeds after all. Concord grapes come in a seedless variety. Who knew? I was going by an old recipe, out-of-date.
I’m convinced that baking thirty-two grape pies is like caring for a parent with dementia. The reward is singular, both sharp and sweet—like bronzed, bare, late-autumn vines warmed by the lingering breezes of a deep, wide lake.
And if you aren’t lucky enough as a caregiver to get the right advice at the right time, the job becomes much harder than it needs to be.
Financial Disaster
With the stock market crash in the autumn of 2008, the value of my mother’s modest IRA falls from $33,000 in the summer to $22,500 in November. Now I watch the market more closely, prepared to withdraw the rest of her IRA at any moment.
At the end of October, on the day after my forty-fourth birthday, I realize that I haven’t mentioned my birthday to my mother. I didn’t even call her as I did the previous year. I no longer need her to show me she loves me in her old ways, to hold up to me, like a mirror, her enduring vision of me as a lovely and capable woman. Her smile, when I see her, is enough.
The holidays get easier and easier as well. Christmas Day, we lounge around as a family, Ben and I and the kids, and I feel no guilt for waiting to see Mom the next day. I no longer worry about finding just the right gifts for her, no longer feel disappointed if she doesn’t coo over my choices. This year, my presents to her are simple: three blouses in her favorite colors, a box of chocolates, and our company. Mom sits in our living room and watches Andrew and Morgan play their new video games; she gazes at the old-fashioned, colored bulbs on our Fraser fir; she pets Trinka, now thirteen years old and blind and deaf, in her lap. While Ben prepares lunch, I sit in the chair next to Mom and we listen to the classical music CDs Ben gave me for Christmas. After lunch, the two of us look at photo albums; she still enjoys reading the captions. When I offer her our homemade, frosted Christmas cookies, shaped as a Santa and a wreath, and I say, “These are the same kind of cookies you used to make with me each year, Mom, all the time I was growing up,” she’s content to believe me.
I rise to take her home. Mom strolls across the room to her grandchildren, cups each of their faces in turn in her palms, smiles up at them, these towering grandchildren, and illuminates their eyes with hers. “I love you,” she says.
In December and January I withdraw the remaining funds in her IRA. Her checking account now has enough for her to live at Elm Haven for ten more months.
She will soon qualify for Medicaid. With changes in New York State Medicaid law, in 2009 Mom will be allowed to keep more of her assets—$13,800, compared to $4,200 in 2007. I would need to start the application process in a few months, and find a nursing home.
Instead, I decide to sell the cottage. I’d rather say goodbye to the cottage where I spent summers as a child, where I’d hoped my children would bring their children, than see my mother leave the staff at Elm Haven.
In any case, Ben and the kids don’t seem as attached to the cottage and the lake as I am. It’s time to let it go. I’ll split the proceeds of the sale between my mother’s care and our children’s college fund. I believe that’s what she would want.
What If’s
I realize that I haven’t seen Henry in awhile, the handsome resident with the thick, salt-and-pepper hair who shuffled into Mom’s room when she first arrived. One Saturday, as I help Vickie, the activities director, finish another photo album, I see Henry in the pictures, smiling at the camera.
Vickie joins me, harried but as upbeat as always, between shoveling the sidewalk and dealing with a sewer emergency. (On weekends there’s no maintenance staff; as the administrator on duty she has to handle everything.) A young grandmother close to my age, tall and heavyset with long brown hair, she grows so attached to the residents that when they have to leave she visits them in their new facilities and has a hard time keeping to herself her opinion about where they “end up.”
When I ask about Henry she takes a breath and says, “Yes, he’s no longer here.” She pauses. “He needed intensive care.”
“He was a sweetheart,” I say, and she agrees, her eyes sad. I want to ask her what happened to him, what kind of care he needed, but I don’t.
&nb
sp; Vickie points to another picture in which two women nap together on the living room couch, their heads touching. “And she’s passed away,” Vickie says, touching her finger to the woman on the left, a resident I don’t remember.
“You get so attached,” she says, and I nod.
In the pile of photos for the album I find two of my mother: She’s sitting in the living room, listening to a band playing acoustic guitars. She looks unbelievably thin, with an almost ethereal expression on her face, her eyes half closed, her mouth curved in a smile.
I see not only her luminous presence, her enduring self, but something vulnerable, fading, closer than I would like to admit to the frailty I see in the faces of Henry and the woman who died. I realize that even though I’ve worked hard to make sure my mother enjoys the quality of her day-to-day life, I need to think more about her wishes for the end of her life. That stage may arrive more quickly than I anticipate.
Mothering my mother, I realize now, is not just about doing things, giving her things, or even about being there. It’s also about facing head-on the larger “what if ’s.”
When I meet with Diane, the director, and Michelle, the head nurse, for another care plan meeting, I remind them that my mother is Do Not Resuscitate, and ask that, if they dial 911 for my mother, they call me immediately. I don’t want an ambulance crew doing anything to my mother that she wouldn’t have wanted.
Diane and Michelle promise to call, of course, but they seem uncomfortable; they merely suggest that I make sure that I’ve given them New York State’s “Non-Hospital Order Not to Resuscitate (DNR)” form, signed by her doctor, which I have. I leave unsatisfied, worried in an abstract kind of way.
A few weeks later I read in the New York Times about a new advance-directive form available only in New York State from an insurance company, bright pink to catch the attention of ambulance crews. Called the MOLST form (“Medical Orders for Life-Sustaining Treatment”), it’s been available since the previous summer but I hadn’t heard about it. I order the form and the supplemental version for people who no longer have the capacity to consent, and schedule an appointment alone with Dr. Claiborne, Mom’s doctor, to fill it out and get it signed.
Inside the Dementia Epidemic: A Daughter's Memoir Page 19