Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  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.

  Pressure to Move

  Nine 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.

  The next morning the RAs tell me that my mother slept well. When I take the morning off from work to take Mom to the doctor, Dr. Claiborne finds nothing wrong with her. Mom still looks pale, so Dr. Claiborne says we should continue to make sure that she’s getting enough to drink. I’ll keep the private aides during the day.

  At the end of July, Ben and the kids and I go away for a week’s vacation in the Adirondack Mountains. Looking back, I can’t believe I did this, but I leave my cell phone at home. It’s true that it’s my first cell phone and I’m not used to carrying it all the time, but I also crave a total break away from worrying about Mom’s health. I need a vacation, and I feel that Ben and our children deserve my time and attention. I deliberately make myself unavailable. For some reason, I never imagine that while we are away for a few days Mom might be back in the hospital. And I naively expect that if there are any problems, it would be Greenway’s responsibility to handle them. The part of me that’s still getting used to being responsible for my mother resists being on call all the time, resists being the adult.

  When we return on a Saturday evening I find messages on our answering machine and on my cell phone from Daphne, Greenway’s case manager, saying that they called an ambulance to take Mom to the hospital because she wasn’t eating or drinking again and she looked “six months pregnant.” I flush, pierced with guilt. When I call them I apologize to an RA for being out of touch, aware of how lame I must sound. She tells me that my mother went to the hospital five days ago and returned three days ago. An X-ray showed that, sure enough, her bowels twisted again, but with fluids the kinks worked themselves out and she’s fine now, she “looks good.”

  When I see Mom the next day she looks great—lots of color in her face, lots of energy—but I can’t stop thinking of her alone, curled under a white blanket in the E.R. I pray that she doesn’t remember. I give her a long hug, and from that moment on, remain on guard for the next call.

  Ever since my mother’s first bowel obstruction, she’s been incontinent. When she sleeps at night and naps during the day, she soaks the sheets and her clothes. Several times a day the RAs have to change her bed, wipe her down, get her dressed again. I know nothing about incontinence and trust that Greenway will do what they need to do to keep her clean and dry. I do wonder if Mom’s progressed into a later stage of dementia. Does her brain no longer register the pressure of a full bladder? The urine either leaks out when she’s awake or gushes out when she falls asleep.

  In mid-August, when I swing by for a visit, Brian, the nurse, stops me in the hallway. “With all of your mom’s health issues all of a sudden, I wonder if maybe she’s had a small stroke.”

  I say, “Her doctor thinks it might be a side effect of one of her medications.” A few weeks ago, after I kept asking Dr. Claiborne about trying one of the medications to lessen the symptoms of Alzheimer’s disease, she agreed to start my mother on on
e of them, a popular brand. We weren’t sure it would help at this point, but we felt it couldn’t hurt to try.

  Brian shakes his head. “Her doctor has no clue what’s wrong with your mom.”

  The nurse may be right, but even though I know Mom had small strokes when she lived alone, I can’t wrap my mind around the word “stroke” right now, standing in a hallway. If Brian had sat down with me in his office and explained his concerns more slowly I might have let the word penetrate. Instead, I focus on the new drug, and wonder as well if Mom has just moved on to a more serious phase of dementia.

  Later that day when I call Daphne, she tells me that my mother is now in a “gray area”; with the incontinence the Greenway staff may not be able to manage all of Mom’s care. According to our state’s regulations for assisted living, and the employee contracts for this facility, RAs may give my mother a shower only every other morning, and they may supervise her dressing herself, but not every day. They cannot physically help her dress, or pull her Depends on or off. The RAs can check on Mom several times a day and twice in the night, and change her bedclothes if they get wet. I assume that Mom can deal with dressing and the Depends on her own, with supervision and prompting.

  Daphne never comes out and says clearly that if Mom does not get outside help she cannot continue to live there, but it’s implied. I offer to hire a private aide to come in for an hour or two on the alternate mornings Greenway cannot give Mom a shower, and every day for an hour in the afternoon to make sure Mom is not walking around in wet pants, as the staff reports she has been. I hesitate to add more hours of private aides because of the cost to Mom’s savings account, but it can’t be helped. Daphne and I agree that this plan might work. She suggests I call a woman named Maggie who works with other residents at Greenway; while she’s already in the building Maggie could stop by and check on Mom. And she’s less expensive than the other agency.

  I trust that if there are any problems, the RAs will report them to Brian or to Daphne, and that Brian or Daphne will, in turn, report them to me. I have perhaps too much faith in their channels of communication.

  At a check-up, Dr. Claiborne takes Mom off the Alzheimer’s medication. We doubt the medication has any connection with my mother’s sudden problems, but we eliminate it anyway. We don’t talk about the possibility that she may have had a small stroke.

  A week after Maggie starts helping my mother I get a call from Daphne.

  “I’ve met with the staff, we’ve discussed your mom, and we all think that it may be time for her to be evaluated for nursing home placement.”

  The thought saddens me deeply. I don’t want my mother in a nursing home so soon. She’s still mobile and talkative and just too “with it.” But I trust Greenway’s opinion because they know more than I do about such transitions. Daphne says that a nurse from the county’s Long-term Care Services office will conduct a medical evaluation called a Patient Review Instrument (PRI). Greenway’s main concerns are her recurring bowel obstructions, which they believe may need round-the-clock nursing care to monitor, and the incontinence. I tell Daphne, “I don’t want to see my mother in a nursing home just because of incontinence, but I’m willing to cooperate with whatever you and Long-term Care recommend.”

  The PRI nurse meets with me and my mother in Mom’s room. I explain to Mom that the woman is a visiting nurse who’s going to ask a few questions “just to see how you’re doing.” I never mention the possibility of a nursing home. The nurse quietly and patiently determines that Mom is actually doing quite well except for needing some extra help to stay clean and dry. “The bowel inversions may not continue,” she says, “and if they do, they are not the kind of condition that should require more than a short visit to the hospital.” Mom looks good, she’s coherent and talkative, she’s strong, and she walks well without a walker with minor weaving only when she’s particularly tired or dehydrated. The nurse tells me that she will take the answers to our questions with her and determine Mom’s “score” tomorrow, but it seems clear to her, she tells me in the hallway, that my mother does not need a nursing home at this time. What she needs is what she is getting now with Maggie—extra help pulling the Depends on and off, staying in dry clothes, and getting her bed linens changed if the Depends leak.

  I excuse myself from Mom for a moment and walk with the PRI nurse down the hall to talk with her and Brian. In Brian’s office I’m annoyed, Brian’s defensive, the discussion tense. Brian says, “I never suggested in the staff meeting that your mom needed a nursing home.”

  I say, “I hear one thing from you and the opposite from Daphne. Who should I go to when I need information?”

  He takes a deep breath in and out through his nostrils. “It’s supposed to be Daphne’s job to pass on the opinions of the staff.”

  The PRI nurse watches us and says nothing. Still confused, I walk the PRI nurse to the entrance. “I’m sorry about that,” I say.

  She smiles. “I understand. In fact, I try to listen really hard to what family members think.” She looks at me for a long moment, then says, “I’m often called to do an evaluation for a nursing home when it turns out the person’s really not ready for one.” She smiles again, studies my eyes, then touches my arm. “Good luck.”

  This moment in the parking lot is the first time I suspect that I might feel less stress if my mother lived elsewhere. Perhaps some of this confusion could be preventable.

  But I don’t know where else to take Mom. I’d forgotten about Maple Grove, the assisted living facility with the “memory care” cottage for people with dementia that two years ago I shied away from visiting. I assume that my mother still doesn’t need that kind of dementia residence, just as she’s still not ready for a nursing home. In my mind, she has no place to go.

  Part III

  REHAB

  Fractured

  In mid-August, Sharon, the head RA, calls me at work. “Shit,” I say under my voice when our assistant tells me that Greenway is on the phone. I’ve learned that calls from them, infrequent as they are, can only mean bad news.

  “Hi, Martha,” Sharon says in a concerned voice. “Your mom seems to be in a lot of pain. She can’t put any weight on her right leg, and she can’t walk. We don’t know what happened but we think she should go to the hospital.” At Greenway I find Mom waiting for me in a wheelchair inside the front entrance with another resident keeping her company.

  “There she is!” Mom cries out when she sees me and gives me a big smile. While she normally sits and walks perfectly erect—a resident once asked me if she used to be a model—now in the wheelchair she’s hunched over, one shoulder twisted down toward the arm of the chair, the collar of her pink cardigan bunched sideways.

  When I reach down to give her a hug, Mom doesn’t pull me close as she usually does; she places her hands gingerly on my shoulders, then releases her hands and pats her palms in the air above her thighs.

  “I’ve got something...going on...down here,” she says, pausing twice in the middle of the sentence to find the right words. This hesitation started a month earlier with the first bowel inversion and the sudden incontinence, and seems to be another clue that she probably had a small stroke, but I don’t make the connection for many months.

  “I know, Mom. I’m here to take you to the hospital.”

  As the medics wheel my mother toward the door she points back to me. “This is my daughter,” she tells them. “She’s the one who knows.”

  Mom’s vitals are fine, and an EKG, to rule out a fall caused by a heart attack, is also normal. I call Maggie on my cell phone to see if she can give me more information about what happened. She tells me that when she arrived at Greenway this morning she found Mom half in, half out of her bed, kneeling on the floor with the rest of her body leaning over the bed “as if she was praying.” Maggie was able to get her up and help her take a shower and get dressed, but after an hour Mom started to complain of searing pain in her leg.

  An hour later a doctor tells Mom that
her pelvis is fractured near her groin. She doesn’t need surgery, but it will take several weeks to heal.

  “Where, exactly, is her pelvis?” I ask the doctor, feeling a bit foolish. He invites me to come out into the center of the nursing station and look at the X-ray. I stand behind him as he sits in front of a large computer screen on which appears the ghostly outline of my mother’s hips. I’ve never seen an X-ray of my mother’s body. The intimacy makes me feel an even stronger calling to protect her. The doctor points out two narrow, symmetrical strips of bone between her legs near her crotch. On each side a faint but jagged line stitches into the bone. “It hurts when she moves her legs,” he says, “because the fractured bone is connected to the muscle tissue.” I wince.

  When I have to leave, who will remind her to lie still? Who will believe her when she says it hurts? She can’t afford a private aide to sit with her around the clock until this heals. At least if Mom tries to get up, the pain may dissuade her from trying again.

  Mom is admitted to a room on the third floor, and the doctor on rounds comes in with the nurse to give Mom a quick exam. They ask her to lift her legs, flex her ankles and wiggle her toes. They are sometimes careful and sometimes too quick. When they leave, I reach to gently squeeze her hand.

  “Are you all right?”

  “No.” She stares straight ahead at the foot of her bed. “They think I’ve done something wrong, and they’re blaming me.”

  At 8:30 I tell her that I have to head home.