Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  Have I bent the truth with Mom? Not too often. Instead I try to explain reality as I see it, repeating myself over and over as she forgets what I’ve said. I resist lying to her to make things easier, not only because Mom is not yet that difficult to deal with, but also because I’m used to our honest relationship. Part of me worries that if I start bending the truth with Mom she will catch on and no longer trust me.

  Karen explains that non-verbal communication is very important to people living with dementia. Talk to them at eye level, she says. I wonder if that’s why Mom’s physical therapist and nurse at Woodside crouched in front of her wheelchair to talk to her. I always lean over in front of her, never crouch or kneel, because of my arthritic knees.

  Convey respect, she says. Use a low-pitched voice. Stay calm.

  Karen talks about affirming the reality of people living with dementia. “If they tell you the sky is green, the sky is green. Don’t try to change their perspective.” Do I correct my mother when she says something that’s clearly incorrect? I’m not sure. I could try harder to validate Mom’s ideas and feelings.

  “Paraphrase what she’s said,” Karen suggests. “Reflect back what you’ve heard to clarify your understanding of it.”

  Adele admits that paraphrasing can be challenging. “When I’m talking with Rita it’s complicated. I have to think all the time.”

  Yes, I find it hard sometimes to follow Mom’s train of thought. I have to concentrate, listen hard. I believe this is one of the main reasons why people avoid talking to those with dementia—the puzzle of their mixed-up language. It helps if you know the person well enough to guess what they are reaching for.

  “One of the things I love about spending time with Rita,” Adele says, “is that I can just be myself with her. Sometimes we worry that we have to act a certain way with people or they won’t like us. With Rita you don’t have to worry about what she thinks of you, because she’s not thinking about you!” She laughs.

  Karen agrees: “It’s freeing.”

  “And when I’m with Rita,” Adele adds, “she helps me slow down and notice so many wonderful things around us. She’ll stop on our walks and study a leaf, or point to a bird in a tree. I call my hours with her ‘the church of Rita.’ ”

  The next day, a Friday, I visit Mom and carry with me what I learned the night before. I decide to see her after work not out of my usual worry and sense of duty, but simply to sit with her, to slow down and enjoy together whatever pleasure we can find.

  Outside, as we sit in the courtyard together, I think of what Karen said last night about helping people with dementia feel useful; often people living with dementia are asked to do very little, to always receive care instead of giving care. I look into my mother’s eyes and say, “Mom, I could really use a hug.”

  “Sure, sweetie!”

  We hold onto each other a long time. I take her hands in mine.

  “You have such strong hands,” I say. “They’re slender but strong.” We lean toward each other, our faces a foot apart.

  “So do you,” she says as she smiles and caresses the freckles on my forearm. For a moment we look into each other’s eyes.

  “I love you,” she says.

  “I love you, too.” Though I’ve forced myself to say it before, this time I mean it. I feel calm and relaxed, not wary and ready to flee.

  Mom says, “The two of us...have come...a long way.”

  I smile and squeeze her hand. “Yes, we really have come a long way.” Is she remembering what we used to be like together, how hard we’ve worked over the years to grow closer to each other? I want to cry when she says this. Does she really remember all those years, or is she just saying something polite that she might say to anyone she’s known a long time?

  “Let’s keep going...in that...direction,” she says. She’s still smiling and looking deep into my eyes.

  With this, I think she really does know what she’s saying. And that’s all I’ve ever wanted—“to keep going in that direction.” I want us to grow closer, if only by annoying each other less and enjoying each other more.

  “Yes, Mom, let’s do that. I’d like that.”

  It’s too late to work out any lingering resentments between us, as Mom can’t remember the specifics of our conflicts. So I see no point in hanging on to them. The long-distance affection my mother and I used to share years ago through our letters and phone calls—the affection that, in person, cooled within minutes—now holds steady, for the most part, through our short visits together, warm and full.

  A few moments later, though, Mom starts to squirm. “I’d like to... go in. I think I need to go...” and she points to her crotch.

  I’m surprised that she can feel the need to go to the bathroom, as lately she hasn’t seemed aware of her bodily needs, but I quickly stand up, circle her around and wheel her back inside to the bathroom in her room. Her new roommate, Edie, is not there, but I see a baby doll on the foot of Edie’s bed. I point it out to Mom. I’m surprised, amused, a bit creeped out. The tiny doll, swaddled in a receiving blanket, looks like a newborn with its red, wrinkled face.

  Standing ready to catch her if she falls, I watch Mom as she lifts herself out of the wheelchair, grabs the walker, and walks stiffly to the toilet. This is the first time I’ve helped with her Depends, the first time I’ve helped her do more in the bathroom than enter and leave. I worry that she’ll feel embarrassed, but she seems quite comfortable.

  When she finishes on the toilet, I grab a dry pair of Depends folded over the handrail next to us on the wall. They look way too big for Mom but I figure they’re better than nothing. I remember reading online that if you are changing someone’s Depends, do so from behind so they can’t see what you are doing and you preserve their dignity. Mom doesn’t seem at all concerned about her dignity. Nevertheless I stand a bit behind her as I lean down to tuck the front half of the Depends through her thighs (“Excuse me, let me just pull this through”), then reach around in front to pull them up to her navel. I fasten the sticky tabs, and Mom pulls up her pants.

  “I don’t like these much,” she says, and I guess that she means because they’re cumbersome, not because she objects to the idea of wearing protective undergarments. The more time I spend with her, the more I can intuit what she means. She zips up her pants, I point her toward the sink and the soap dispenser, and she slowly washes her hands. I remind myself to be patient. I crank down a paper towel and she meticulously dries her hands. “There’s the waste basket,” I say. “Yup, right there.”

  I watch closely as she shuffles with her walker to her wheelchair. I suggest that we go for a ride down the hall to the vending machine: I’ll buy her a candy bar.

  “Sure!”

  I push her around a corner, down a hallway I doubt she has ever seen.

  Mom twists in her seat to look back at me. “I’m nervous. I don’t know...what’s at the end...of where we are going...and where we came from.”

  With her words I inhale a sharp breath, and stop for a moment in the empty hallway. All I can do is touch her shoulder. “Don’t worry, Mom. The staff lounge is just down here. We’ll get some candy, and we’ll come right back.”

  Old Friends

  I spend Labor Day weekend at the cottage with Ben and the kids, and I don’t feel guilty about not seeing Mom for a whole three days; in fact I don’t think about her at all. I read the Times, watch the waves shift on the lake, and play cards with Ben and the kids and a friend of Andrew’s. I barbecue chicken over a wood fire on the beach, and swim in the cool, shallow water. Physical labor relaxes me; I pull weeds out of the lake near the beach and trim the bushes in the yard. I notice, though, that I pack even my relaxation into a dense schedule.

  The Tuesday after Labor Day I leave work early to attend Mom’s first care plan meeting at the rehab center. In their meeting room, I find seven staff members clumped along the far edge of a large, oval table. They motion for me to sit at the other end.

  Katherine, the soci
al worker, says, “Your mom is doing pretty well, but she’s been a bit combative the last couple of days.” Immediately I feel guilty about leaving Mom alone all weekend, and worry that she’s mad at me, or scared. I wouldn’t have thought Mom could sense the difference between a day in between visits and three days.

  “She’s refusing to cooperate sometimes, and won’t talk to her aides,” Katherine says. “The aide sat with her at dinner and your mom completely ignored her.”

  Abby counters by saying, “I haven’t had any problems with Judy in physical therapy. I haven’t seen that combativeness. If Judy’s in pain, she’ll lash out, but that’s understandable. If she’s uncooperative or nasty, ask her if she’s in pain—if she’s in pain right that minute.” This sounds a lot like what I said to Abby over the phone after Mom’s first PT evaluation.

  Also, I think to myself, if Mom does not like you—if you seem unfriendly, if you are cool and detached, or condescending, she will pick up on that right away and ignore you or resist any requests or commands. Probably the aide’s personality just rubbed her the wrong way, while the physical therapist and floor supervisor are more solicitous. The aide, scowling, sits beside me.

  Peggy, the floor supervisor, suggests that they test Mom for a urinary tract infection, which can cause irritability.

  Gloria, the nutritionist, says that Mom refused to eat one of her meals—just pushed it away. I remind them about her two bowel inversions.

  I explain that every time I see Mom, I take a look at her stomach to see if it’s enlarged. Peggy says that she will keep track of Mom’s bowel movements. Gloria the nutritionist says that, overall, Mom’s eating well, about fifty percent of her meals, and drinking a lot. She is eating her dessert first, but also half of the entrees.

  Peggy says, “Our main concern, besides the recent combativeness, is the fact that your mom has figured out how to unhook herself from the clip alarm when she’s in the wheelchair and is walking around when she shouldn’t be, without assistance. We don’t want her to fall. We want to keep her safe.”

  “Isn’t there a pad alarm on her wheelchair?” I ask.

  “No, she only has a pad alarm on her bed,” Peggy says. “We’re trying to order a smaller version for the wheelchair. Your mom has figured out how to take the whole alarm box off of the wheelchair. She carries it around in her hand.”

  I can’t help cracking a small smile.

  To protect Mom if she falls, Abby recommends a product called HipSaver®, a girdle-like undergarment with soft padded discs over the hipbones and tailbone. I never knew such a thing existed, and agree to let them order her some.

  At this facility, staff members do not see family caregivers as peripheral; they are truly welcoming me as a member of my mother’s care team. I’m beginning to realize, too, how very important it is to me that paid caregivers like these staff members see me as an informed and competent family caregiver—a good and thorough daughter who knows her mother better than anyone else. With this implied affirmation I sit a bit taller in my chair.

  For the first time since she left the cottage, my mother’s old neighbors, Susan and Bill, drive over to visit. Susan tells me on the phone afterward that they had a long visit and that Mom was excited, “maybe too excited.” They “reached into her past” to find things to talk about, like her grandchildren.

  When I see Mom next I ask her if she remembers seeing them.

  “Oh, yes,” she says. “They talked a lot. They were really excited.” Mom flutters her fingers around her head to show how excited they were.

  This makes me happy. I believe that she really does remember how she felt when they were here. Though she can’t remember the content of their visit, she remembers the emotion.

  Transitions

  On a Thursday night, I join Arlene from my caregiver support group for a meeting of a different support group, this one for family members of Woodside residents. We will talk about the quality of the care our loved ones are receiving at Woodside, and any concerns we might have. Even though I have a cold, and Mom will be leaving rehab in a few weeks, I decide it’s important to go to the meeting. If no one looks out for the care our family members receive in nursing homes and rehab centers, if no one checks up, we get what we deserve.

  Several family members comment on how pleasant the home seems now that it has a new director. The first thing you notice, they say, is that it doesn’t smell bad anymore. One man says, “If you don’t notice anything, that means that everyone is doing their job.”

  The guest speaker for the meeting, the manager of the kitchen, says their motto is “residents and their families first,” and tells us we can request any of eighteen diets—low fat, low salt, solid, soft, liquid, vegetarian, vegan, kosher. Arlene pipes up and says, “I wonder why we allow our doctors to prescribe low-fat diets for our loved ones when food is one of the few pleasures left in their lives. I decided recently that my husband should be able to eat the foods he enjoys—pork chops, butter with his bread, ice cream.” Good point, I think. But my mother is on a low-fat diet to help prevent more tiny strokes, and it doesn’t occur to me for some time that more fat in her meals might help make them more enjoyable.

  When the meeting ends I still feel like I have a low-grade fever, but I head downstairs and walk across the courtyard to the rehab center to see Mom for a quick minute. To my surprise, I find her sitting in her wheelchair right inside the double doors by the aides’ station, facing the entrance, as if waiting for me or contemplating escape. She flings open her arms and we hug.

  “Will you check my forehead, Mom?” I ask her. I feel like her little girl again. She rests her palm there for a moment. Her hand feels cool and smooth and soft.

  “It’s getting there!” she says, exactly as she used to.

  Katherine, Woodside’s social worker, asks me for permission to move my mother to the “secure” dementia ward in the nursing home section. “For the next couple of weeks that she’s here,” she says, “we want to keep your mom safe.” Apparently Mom has been pushing her wheelchair through the rehab center’s doors several times a day, sounding the alarm around her ankle and sending the staff running. I tell Katherine that’s fine, Mom probably won’t recognize that she’s in a new room.

  On my first visit to see her on the fourth-floor dementia ward, I step off the elevator into a large, white room, plain and antiseptic as a hospital, where two dozen residents sit at tables, silent. I note that the floor is clean and it doesn’t smell. I see Mom by herself in a chair next to a table by the nurses’ station. I’m pleased to see that she’s out of the wheelchair and is again using a walker. When she spots me, she gives me a huge smile and raises her arms for a hug.

  When she stands up to walk with me she pinches the sides of her pants at her hip.

  “They’re so...bunchy,” she says.

  I assume she’s talking about the Depends, but maybe, I realize later, she’s wearing the HipSavers that Abby recommended at the care plan meeting. Mom doesn’t seem annoyed with them, just amused and maybe a little apologetic that her pants are puffy.

  When we step into the elevator an alarm goes off. A middle-aged, female aide saunters over, shows me the combination to turn it off, and warns me that it will go off again when we get out on the first floor. I see the aide’s slow movement as indifference; I haven’t learned yet that moving slowly and calmly around a group of people living with dementia helps them feel safe and peaceful—and that moving slowly and deliberately helps the aides conserve their energy for a very long day. When the aide walks away and the doors close, Mom steps back toward the entrance of the elevator and the alarm goes off again. The aide returns to the elevator, stands facing Mom, puts her hands on Mom’s shoulders, and pushes her backwards, away from the doors.

  “You have to stand near the back, Judy, or the alarm will go off.”

  I can see that Mom is confused and a bit annoyed, but it all happens so fast that Mom doesn’t have a chance to find the words to protest.

&n
bsp; This is the first time I see my mother physically moved—pushed—from one spot to another. I would have explained to Mom that she needed to move back, and then I would have waited for her to move on her own. Or, if she hesitated, I would have taken her hand and asked her to step back with me. Obviously the aides don’t have time to wait, but I still feel unsettled. I wouldn’t blame her for getting “combative” at times if she’s responding to this kind of treatment.

  We walk outside to the courtyard, and Mom can move pretty well with the walker. It’s a lovely mid-September day, just cool enough to need a light jacket, but sunny with a blue sky and soft white clouds. I’m not sure what to talk about. I realize for the first time that conversation usually relies on memory; no wonder I’m often at a loss for words when passing the time with Mom.

  We’re both content, though, to sit and enjoy the fresh air for a half hour, until she gets too cold. Upstairs I ask Mom to show me her new room, a single room with a bathroom and a pleasant view out the window of the same tree-lined street she could see from the rehab wing. The walls and floor look worn, old but not dirty. While the walls in the rehab center were painted homey colors like rose and peach, the walls here are a bland, eggshell white. This dementia ward, what some nursing homes call an Alzheimer’s special care unit (SCU), apparently has no need to impress.

  I don’t want to leave my mother alone in such a threadbare place, surrounded by silent, mostly immobile patients in a more advanced stage of dementia, but she must stay and heal, and I must go.

  Two days later, late in the afternoon on a Tuesday, I get a call from a woman at Woodside who identifies herself as the “Medicare coordinator.” She tells me that the physical therapist reports that Mom has met all of her rehabilitation goals. Once a patient’s goals are met, Medicare stops payment. Mom can stay at Woodside only through this Friday.