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Caregiving in the Age of Long Decline

By
January 15, 2014

Her mother’s final death, then, came both hard and as a relief.

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Photo by Jing

It’s late summer when Claire first shows up at the caregivers support group. The last few weeks have been exceptionally hot and dry; tree leaves have curled and crisped everywhere in the Massachusetts college town where the group meets, flowers shriveled, lawns turned brown.

Only five others have gathered today, three women and two men, all of them caring for family members with chronic illnesses. Claire is younger than the rest, forty-eight, a divorced single mother, tall and slender, with shoulder-length dark hair. She takes a seat at the table, in a windowless conference room at a community hospital. When her turn comes around, she speaks of grieving the loss of her mother—who is still living, and whom, until recently, Claire has been visiting nearly every day.

“Her doctor told me,” Claire says, looking around at the sympathetic faces, “that I’m just going to have to separate myself emotionally.” She grimaces, fighting tears. “You can see what a great job I’m doing!”

“Oh, it’s the easiest thing in the world!” Rufus says.

“She’s only my mother, after all,” Claire says. The group nods.

Sarah asks Claire whether she gets support from other family members. Claire shrugs. Her father died five years ago. She has one brother. “He actually visited recently,” she says wryly. “He stayed for about forty-five minutes!” There are nods and murmurs of recognition: Claire is describing a familiar sibling dynamic.

Teary, Claire digs into her bag. “I can’t believe you guys don’t have a box of tissues,” she says.

Rufus pushes the conference room’s napkin container across the table toward her.

“The napkins are thicker,” Sarah says from down the table. “Trust me!”

The air-conditioning whirrs; it’s cold, as usual, in the room. No one can figure out how to turn the AC down. Liz has wrapped herself in a plush gray shawl. Karen wears a heavy cardigan.

“Note to self,” Claire says, helping herself to a napkin and wiping her eyes. “Next time, bring tissues—and coat.” She shivers, and laughs along with everyone else.

*                      *                     *

Five years before, Claire and her mother, Harriet, who was seventy-eight, had arranged to have a handicapped-accessible apartment built as an addition to Claire’s home. The arrangement had seemed like a smart way for Harriet to “age in place”—avoiding a facility—close to her daughter and grandchildren.

“People thought I was nuts,” Claire says.

For several years, all went well. Harriet watched the kids after school while Claire worked. Claire and her mother, who had always been close, continued to get along well. But more recently Harriet’s thinking and judgment had started to decline. Last fall, while Claire was out of town, Harriet had told her over the phone that she’d fallen the evening before, on their porch. She’d taken some oxycodone, and figured she’d wait to see if she felt better in the morning. She didn’t feel better. She told Claire that her head had been bleeding and her neck hurt.

Claire hung up and called an ambulance. A few moments later, unable to reach her mother on the phone—a 911 dispatcher was keeping Harriet on the line—Claire asked a neighbor to check on Harriet. The neighbor reported seeing blood all over the porch.

“I freaked out,” Claire says. She headed toward home. A hospital physician called Claire en route. “The good news,” he said, “is that there was no brain damage.” The bad news was that Harriet’s neck was broken. He was sending Harriet to a bigger hospital further south.

Claire arrived at the hospital and found Harriet on a gurney, in a neck brace, alone in the hallway of the emergency department, waiting to be seen. Fortunately, the fracture in her vertebra hadn’t severed her spinal cord. Harriet had surgery about ten days later. She stayed in a nursing home for rehab and then returned home.

Right away, Claire noticed that her mother’s mind had taken a turn for the worse. Harriet forgot pots cooking on her stove next door; Claire would smell burning. Claire ran over and threw a smoking teakettle into the snow; another time she tossed a pot of potatoes. Harriet became lost taking Claire’s daughter to a violin lesson, and Claire persuaded Harriet to stop driving.

“It was challenging to set limits,” Claire says. “But I did.”

This past spring, Harriet had fallen again at home. A wind storm had blown through the night before. Fetching the morning paper, Claire found a downed tree blocking Harriet’s front door. Claire used the interior door between her home and her mother’s; she wanted to tell Harriet about the tree. She found Harriet on the floor, near the bathroom, unable to get up. “She’d peed on herself,” Claire says. Claire couldn’t help her mother stand. “She couldn’t bear weight.”

Claire called an ambulance, again, which took Harriet to the hospital. Doctors found that she’d broken her pelvis. Harriet went to a nursing home, again, for rehab.

She’s still there, Claire tells the support group. Harriet’s Medicare coverage has run out. She’s demanding to return home. But the head nurse at the nursing home and Harriet’s physical therapist both believe Harriet is not well enough to live alone. She has poor judgment and balance, they say. After Harriet had broken her neck, a physical therapist had urged her to use a walker. But Harriet had rarely complied. Now the nurse and therapist exhort Harriet to use a wheelchair. They say that even using a walker, Harriet is likely to fall. Claire is certain her mother will refuse to use the wheelchair, as well.

“You just lose it. You hit a wall. You love a person, you want to do for the person. But your whole life is nothing but abject misery.”

Claire says her mother has always been stubborn, but this quality has intensified since Claire’s father died and her mother’s health and circumstances have deteriorated. Group members nod knowingly. Managing, and doing right by, difficult care recipients is a frequent topic in the group. Members often urge one another to ask for help from friends and family who are able to give it, and to set limits on those who are chronically unhelpful. Claire sits, trying to compose herself. Rufus leans across the conference room table toward her. “May I ask you a personal question?”

“Sure.”

“Have you hit the brick wall?”

A woman who has been attending for the last few weeks has heard Rufus mention the “brick wall” before. She asks, “What is this wall you’ve been talking about?”

“It’s something that happens to caregivers,” Rufus says. “It happened to me. It happened”—he gestures up the table—“to Sarah.” Sarah nods. “It happened to several others here.”

Claire looks at the ceiling, fighting tears. “How do you know if you’ve hit it?” she asks.

“You just lose it. You hit a wall. You love a person, you want to do for the person. But your whole life is nothing but abject misery.”

“I just want it all to go away,” Claire says.

Rufus sits back. “You hit the brick wall,” he says.

“Mm hmm,” others murmur.

“We are the other side of the brick wall,” Rufus says, almost triumphantly.

“I actually hit it a couple of weeks ago,” Claire says soberly. “I just couldn’t get here.” She couldn’t find anyone to watch her children.

*                      *                     *

Ours is an age of long decline and slow loss. On the one hand, extraordinary, lifesaving medical interventions enable people to live much longer than they did a century ago. But we’re also spending more of our late lives in drawn-out illness, dying protracted deaths. While life expectancy has increased, so too has chronic disease. A few statistics show it clearly: More than a third of elderly men and a quarter of elderly women report having heart disease. Half of the old have high blood pressure, and a quarter have cancer. Many with chronic disease stay alive through interventions that did not exist even a few decades ago. More and more people are becoming “old old,” spending their final years ill and/or frail, unable to care for themselves, dependent on others.

At least in part because of increased longevity, more people are also developing dementia—a gradually progressive, incurable impairment of memory, reasoning, language, and personality, caused by one or more brain diseases such as Alzheimer’s. Dementia is a central and frightening specter of old age, slowly diminishing personhood itself, and devastating the relationships that personhood enables.

*                      *                     *

“I want,” Claire says, “my old mom back.”

She tells the group that her fear for her mother isn’t enough to give her legal authority over Harriet’s healthcare. In order for her to make decisions on her mother’s behalf, against Harriet’s own wishes, a psychiatrist would need to find Harriet incompetent—unable to make decisions for herself. Claire recently arranged for such an assessment, but the psychiatrist found Harriet competent. “He believed everything my mother said,” Claire tells the support group. Therefore, Harriet’s physician has told Claire, Harriet “has the right to go home and hurt herself.”

“He told me,” Claire says, “that he thought she would” hurt herself—“that it was inevitable,” and that there was nothing anyone could do.

An ombudswoman from a local elder services organization moderated a meeting between Claire, Harriet, and Harriet’s providers at the nursing home. The meeting went badly. “All relations broke down between my mom and me,” Claire says. “My mom said some pretty nasty things to me. She’d always been critical of me—but this was a new level.” Claire found the meeting so upsetting that she skipped the next one regarding Harriet’s care. “I was devastated,” she says.

Soon Claire decides to remove herself from all decisions regarding her mother’s care. She finds the emotional cost of the dilemma too high; she has children and a full-time job to attend to.

“I can’t endorse a plan that will result in her getting splatted on the floor again.” Claire’s mind, she says, tends to spin toward worst-case scenarios; she fears, for example, that her mother will cause a fire and jeopardize all of their lives. She fears that her mother will not just fall, but die in the apartment next door, and that she, Claire, will walk in and find her—or worse, one of the children will.

Soon Claire decides to remove herself from all decisions regarding her mother’s care. She finds the emotional cost of the dilemma too high; she has children and a full-time job to attend to. She decides that she cannot “take responsibility for taking care of her.” Claire says she could have refused to house her mother any longer, out of both a sense of principle—it didn’t feel right to allow her mother to put herself in a dangerous situation—and self-protection—Claire feared for herself and her children. Legally, as sole owner of the house, she could have evicted Harriet from her home. But this was clearly the lesser of two unfortunate options: let her mother return home and face the risks or evict Harriet and likely force her onto the state’s elder protective services.

*                      *                     *

In the fall, friends from Harriet’s church find Harriet a home health aide, a woman who works independently, and Harriet moves back into Claire’s house. The aide, Susan, tends Harriet a few hours each day at Claire’s home.

Claire gets a new job that makes her unable to return to the support group. She had feared calamity should her mother return home, but in the following months no disasters happen. Harriet and Claire’s relationship improves some, although they’ll never again be close. Claire continues to manage Harriet’s finances. Over time, Harriet’s needs increase, and Susan ups her hours. She cooks Harriet’s meals, helps her with toileting and bathing. Harriet faces an increasing risk of falling and hurting herself. Eventually, Susan moves in with her full-time. At night, she helps Harriet to the bathroom and watches over her when she’s restless. Before long, Susan becomes exhausted. With her mother’s funds, Claire hires another aide, this one from an agency, who spells Susan during the day. In the following year, the cost of Harriet’s care will exceed ninety thousand dollars.

All along, Claire continues to hope her mother will agree to nursing home care. Claire begins regularly telling her mother that she’s running out of money. “We were running out,” Claire says, “but we weren’t that close.” Claire also regularly tells her mother, “I think you need more help than you get at home.”

To secure a spot in a nursing home, Harriet needs a physical exam from a doctor. In the exam room, as they await the doctor, a breakthrough happens: Harriet arrives at a “moment of clarity,” Claire says. Harriet seems, momentarily, to return to her former, rational, reasonable self—“my old mom.” Yes, Harriet says, she knows the current scenario isn’t working. By now her memory and thinking have been seriously impaired—she likely has vascular dementia, caused by ongoing, small strokes that do not cause obvious symptoms at the time they occur, but that progressively impair thinking. During the visit to the doctor, Harriet acknowledges again that she can’t stay home any longer.

This comes, to Claire, as an enormous relief. A few days later, Claire moves Harriet to one of the nursing homes where Harriet had received rehab; it’s the same place in which Claire’s father had spent his final months. Harriet moves in on a Friday. Claire, who for weeks had plans to go away, departs for the weekend.

When Claire next visits the nursing home, she finds her mother sitting by the window of her ground-floor room in a geri chair. The staff have wheeled Harriet there because they know that she likes to gaze at the landscaped courtyard beyond. Claire walks up and says hello. The sight of her mother startles her: the right side of Harriet’s body is newly paralyzed, the right side of her face slack, immobile. Harriet has had a major stroke.

Claire feels suddenly panicky, an urgent need to do something. “I’ll be right back!” she says to her mother. She runs into the hall, toward the nearby nurses’ station.

*                      *                     *

In this age of slow loss, a typical twenty-first-century narrative of elder caregiving has emerged. For a period, possibly a long one, a daughter may take care of her mother’s finances. A wife may drive because her husband no longer can. A son may do his father’s grocery shopping. A charge’s abilities decrease, and a caregiver’s duties increase commensurately. Eventually, we imagine, near-complete impairment sets in, and a person becomes bedridden, likely moves to a nursing home for round-the-clock care, or invites a hospice program into the home. The caregiver’s own response adapts as needed. In a last, intense period, the caregiver oversees professional care and/or provides for a loved one’s needs. Then comes a final slide to death.

One hopes for as gentle an end as possible, and the privilege of helping make it so.

At some point in the course of illness, the medical interventions that save healthier lives come at great cost—both financially and emotionally. They also become futile. Interventions that could save a stronger person’s life—a feeding tube, a respirator, or surgery—can actually shorten a frail person’s life by causing stress and pain. Opting only for comfort care at the end of life, studies show, can extend life and make death more peaceful. Caregivers’ main intentions rarely include consciously escorting someone toward death. Still, one hopes for as gentle an end as possible, and the privilege of helping make it so.

*                      *                     *

Both of her parents, Claire says, “were very clear about end-of-life issues.” They “didn’t want their lives to be unnecessarily prolonged; they didn’t want to live incapacitated.” Nevertheless, Claire’s father had ended up in this nursing home, with dementia, confused and sad. He’d cried often. The time he spent in the facility was “like a prison sentence for him,” Claire says. “My dad ‘did’ nineteen months.” Claire sees the end of her mother’s life in the same terms: “She’s having to serve the time.”

At the time she was admitted, Harriet had a do-not-resuscitate order in place for any case in which her heart or breathing stopped. She and Claire’s father had written advance directives, back when they were well. Harriet’s document had “very clear wording,” Claire says, “about not extending her life when there is no dignity or quality of life.” Claire would find these words helpful as she made decisions on her mother’s behalf. Claire had instructed the nursing home not to send her mother to the hospital for any reason. Should her mother have a stroke, in other words, nothing should be done. Still, deciding in theory that this is how you want a facility to respond and finding your mother half-paralyzed after your weekend away are two very different emotional scenarios.

The day she discovers her mother’s new, deteriorated state, Claire finds herself in the hall “freaking out,” distraught, crying. She assumes that her mother has just had this stroke, is even in the midst of it now. Otherwise, Claire feels, the staff would have called her over the weekend and let her know. She first encounters the nurse manager, who follows Claire back into Harriet’s room. The nurse gazes at Harriet. She says to Claire, “Oh, yes. She’s been like this all weekend. We thought that was how she was.”

For days afterward, Claire is upset with the facility and also feels guilty, as if the move to the nursing home, which she had pushed for, had caused her mother’s stroke. But before long, Claire lets go, at least, of her anger at the staff. She is grateful for the facility, and admires the care they’re able to give. Still, she experiences the place as a terrible purgatory—mostly for her mother, but for herself, as well. She edits, in conversations with friends, part of the facility’s name, “center for extended care,” to “center for extending life.” The question, for Claire, is why extend it? Harriet spends her days in a geri chair and in diapers. “She can’t sit up,” Claire says. “She doesn’t have the trunk strength to hold herself up. Her feet are swollen, she can’t walk, she can’t feed herself. All she can do is talk. Her quality of life is nonexistent.”

“Does she know you?” I ask.

“No,” Claire says. “She’s totally around the bend.” Harriet lives, she says, in a wild, unknowable land of delusion. She tells Claire stories about her love life, her marriages, her new baby. Fortunately, Harriet seems to enjoy rather than be disturbed by her hallucinations. “She’s happy,” Claire says. “She’s had a very active dating life. She really loves this one guy she’s been dating.” Harriet sits in her geri chair by the nurses’ station. She points to a woman in a nearby chair, and announces that she’s had “a relationship” with her. She tells Claire that a CIA agent once came into her room and had sex with Harriet’s roommate. Harriet refers to her boyfriends, variously, as Renee, Riley, “my chubby boyfriend,” and “the three redheads.”

When she visits, Claire doesn’t say much to her mother. She pulls a chair from the nurses’ station, places it next to her mother, sits, and asks, “What’s new?” She listens to her mother’s fantastical news.

One day about a year after Harriet’s move to the nursing home, Claire notices decay in her mother’s teeth. It distresses Claire. Later, she asks the nursing home what can be done. A dentist does visit the home occasionally and tend to the residents’ mouths, but Claire learns that getting her mother this care will be complicated.

Claire spotted the tooth problem only days before Harriet dies (not that Claire knows this at the time). Hearing the story later, after Harriet’s death, I ask Claire how she had felt about her mother’s teeth: Was she worried that her mother was in pain? That she couldn’t eat? Claire says she can’t pinpoint her attitude. Her mother was being fed puréed food, so eating wasn’t the issue. Harriet didn’t seem to be in pain. Claire was simply acting, she says, as she felt she should: “I wasn’t thinking, ‘Oh, we might as well not deal with her teeth because she’s going to die soon.’ It was just like, ‘That’s what you do for people; you take care of their teeth.’”

*                      *                     *

In Alzheimer’s and other chronic, fatal, progressive diseases, the line between illness and dying is not bright, says Diane Meier, a professor of geriatrics and palliative medicine at Mount Sinai School of Medicine and a fierce advocate for palliative care—“comfort care” for people facing serious illness and/or death. Dementia patients tend to die in two ways, she says. In the first, death comes relatively suddenly in the midst of long, slow decline. The final, lethal event may be an infection in the lungs or urinary tract; it may be a heart attack, stroke, or fall. “Things are going along as usual,” Meier says, “and then some acute crisis intervenes and the person doesn’t have enough reserve anymore to bounce back.” Death is “unexpected” in the sense that if the person hadn’t fallen, hadn’t gotten a cold, if his or her heart rhythm hadn’t been disturbed, he or she would still be alive. The end is sudden in the context of a life that has slowly been fading out.

On the other hand, sometimes it seems as if the end will never arrive. This is the second type of death caused by dementia and other chronic, progressive brain disease—an “excruciatingly slow process of gradual decline,” Meier says. The brain loses function and all the body’s processes shut down in nearly the reverse order in which a person makes gains at the beginning of life; the brain can no longer instruct the body to walk, sit up, eat, swallow, and finally, breathe. “You don’t do any of those things consciously,” Meier says. “They just happen, because your brain is functioning.” When the brain doesn’t work, nothing else will.

This kind of death, Meier says, while “in some ways easier to prepare for, at least in theory, is also very difficult because it’s so prolonged. It’s not like the family can come in and do the vigil, and we can say, ‘Your mom is likely to be dead in a week or two.’ The family can come in and do the vigil, and the vigil can go on for months.”

*                      *                     *

Harriet will die the first way—relatively suddenly. One Saturday morning, Claire finds several messages on her cell phone. Staff have called to say that Harriet’s condition has abruptly deteriorated. They believe Harriet has had another major stroke; she’s running a low fever; she likely has pneumonia. They seem to know that this is the beginning of the end. Still, it takes Claire a long time for the phone messages to “sink in.” She drives her daughter to a birthday party, makes arrangements for her ride home, runs a few errands. Finally, in the afternoon, Claire heads to the nursing home. She finds her mother in her bed, propped up so that her breathing will be easier. It’s clear to Claire that her mother has had another stroke: for the first time, Harriet is unable to take food or speak. Harriet tries occasionally to say things, but no words form. What strikes Claire more than anything is that her mother seems more aware, even content, than before. She smiles each time someone enters her room.

Claire begins the first of two vigils by her mother’s bedside. “I don’t know how [the nursing home staff] know” that a resident is approaching death, Claire says. She assumes they’ve learned signs—breathing changes, unresponsiveness, some predictable series of subtle events. In the late afternoon, with Harriet going in and out of semiconsciousness, Claire leaves the facility; she drives her children to a theater performance she’d long ago bought tickets for. Claire will remember nothing of the show. She is “completely on another planet,” thinking of her mother, knowing she will die soon. Claire takes her children home, everyone goes to bed. Claire makes sure she has a phone at her bedside. It rings at four in the morning. It’s getting close to time, a nurse says. Claire pads down the hall and wakes her son, now fifteen. “I’m going to the nursing home,” she says. “Grandma is dying.”

She listens to her mother’s breathing, hard and fast. Harriet is pulling in air, apparently desperately, but Claire can’t know for sure. She remembers that her father breathed this way, too.

She pulls up to the facility in the dark. In her mother’s room, Claire draws a chair up to Harriet’s bed. A nurse offers tea and fruit. Claire doesn’t feel hungry. Soon a neighbor, a friend of both Claire and her mother, arrives and sits by Claire. Claire watches her mother in bed. Harriet’s face is slack, unmoving, her mouth slightly open; Claire’s not sure whether to consider it “expressionless” or fixed in a painful grimace. She wonders about the experience of dying. The nurses have begun giving Harriet liquid morphine, squirted with a needle-less syringe between her lips. Claire is glad for the narcotic, often given to the dying to relieve pain and—an unspoken goal—perhaps help death come more easily. She listens to her mother’s breathing, hard and fast. Harriet is pulling in air, apparently desperately, but Claire can’t know for sure. She remembers that her father breathed this way, too, toward his end. Back then, she yearned to know if her father understood that Claire was there with him. But here with her mother, Claire doesn’t feel as strong an urge to know. She’s simply attending her mother’s death—for her own sake, but also in case she does, by her presence, provide her mother with solace.

Listening to her mother breathe, it strikes Claire that Harriet is laboring, that this dying is hard work. Perhaps her mother is already “gone,” and this breathing is simply the body’s—the brain stem’s—refusal to give in. On the other hand, who knows, her mother may be aware she is dying, in which case, Claire believes, Harriet is “fighting to let go”—a strange paradox.

Midmorning, and quite suddenly, Harriet’s breathing changes, it slows and quiets. Claire remembers that this shift, too, had happened in her father just before he’d died. She turns to her neighbor: “Now she’s actively dying.” She takes her mother’s hand. It feels, at once, clammy and warm—and surprisingly bony. There is so little muscle left; for a long time, Harriet has done nothing with her hands.

“It’s okay to go,” Claire murmurs to her mother. Soon she says it again.

*                      *                     *

I ask Meier how she defines a “good death.”

“Families,” Meier says, “define it for you.” She hears, generally, one of two reactions from families to their loved ones’ deaths. In the regrettable scenarios, family members say: “It was terrible. She was in a tremendous amount of pain.” These relatives have been through great stress. They avoid eye contact with Meier; they show signs of guilt and embarrassment. “They feel like they’ve failed their loved ones,” she says. “It’s very hard to recover from a death when families feel like they weren’t able to secure the right care”—that they didn’t do right by their charges. Caregivers who have witnessed difficult deaths tend to grieve longer, and experience greater rates of post-traumatic stress.

Meier strives for the better scenarios, the ones in which family members say a death was “very peaceful,” that their loved one experienced no pain, and that “we were all there.” These survivors “go on to heal and recover,” Meier says. In these cases, she says, “I know I did a good job.”

Claire says that what lingers painfully in her mind is not the short period during which her mother precipitously declined and died. Claire feels no guilt about that; she knew what her mother wanted and she carried those wishes through. It’s the longer descent, including the year in which her mother “did time” in the nursing home—alive, but not herself—that troubles Claire. This period, the death before death, seems like a larger, abstract injustice that doesn’t have an answer. Short of assisting with suicide, no doctor could prevent it.

Part of her pain, Claire says, is that with long, slow loss, it’s impossible to know when to say good-bye. She thinks back to that moment in the physician’s office, when she was alone with her mother, the moment in which Harriet was lucid. “That was the last time I spent with my mother as I knew her. To me, that [moment] was good-bye. After that, I never saw my old mom, the one who raised me, and who I loved.”

Her mother’s final death, then, came both hard and as a relief. Twenty minutes after her breathing changed that morning, after Claire recognized the signs, Harriet exhaled for the last time. Claire was still holding her hand.

G

Adapted from The Caregivers: A Support Group’s Stories of Slow Loss, Courage, and Love by Nell Lake, to be released February 11, 2014, by Scribner. © 2014 by the author.

Nell Lake also writes for magazines and was the founding editor of the Nieman Narrative Digest, a project of the Nieman Foundation at Harvard.

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