Heroism At Home: An Intimate Look At Growing Ranks Of Caregivers

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If you're an adult living in the U.S., it's a good bet that you (or your neighbor or close friend or colleague) are caring for an elderly family member. Indeed, more than 43 million Americans — about 18 percent of adults — care for a family member or friend 50 or older, according to the Family Caregiver Alliance; 15 million of these caregivers tend someone who has Alzheimer's disease or some form of dementia.

Currently, family (read: unpaid) caregivers are the largest source of long-term care in the U.S. and health scholars expect that by 2050 the demand for such care will nearly double — and that family caregivers will have to continue meeting the greatest part of that need.

But the statistics don't reveal the intimacy of such caregiving relationships: the terror of a mind slipping away, the humiliation and messiness of chronic illness, the often violent and shocking ways that bodies unravel. In her new book "The Caregivers: A Support Group's Stories of Slow Loss, Courage And Love," journalist Nell Lake details her two years observing a caregivers support group that includes a 50-year-old botanist who moved in with her aging mother to care for her, and a survivor of Nazi Germany who devotedly tends to his ailing wife, and others in the group (some of whom are dealing with serious health problems of their own). While documenting their lives, Lake offers views into the complexities of caregiving: the profound stress, the upheaval of family roles, the slow, often excruciating grief, as well as the graceful humanity of it all.

Here, lightly edited, is my Q & A with Lake, who lives with her family in Northampton, Mass.

RZ: You begin your book on a personal note, with a memory of your grandmother. Can you tell us a bit about her and how her story moved you to write about the larger issue of caregiving in America?

Journalist and author Nell Lake (photo: Sarah Prall)
Journalist and author Nell Lake (Courtesy Sarah Prall)

NL: My grandmother was a poised woman who lived her life with great energy. She had raised three children, kept a beautiful home, was active physically and also politically—involved in environmental causes and in the nuclear freeze movement in her community. She prized her independence and physical vitality, and, as she aged, she expressed a fear of ending up frail and in a nursing home. She kept materials from the Hemlock Society in a kitchen drawer.

In the summer of 1984, when I was 18, she found out from a doctor that she might have cancer. That night, she went to her garage, sat in her car, and turned it on. A neighbor found her the next day.

While my grandmother’s suicide didn’t directly spur me to pursue a story about long-term care and family caregiving, once I was sitting in on the caregivers support group, it was clear to me that I was immersing myself in the stage of life, an experience, that my grandmother had feared and successfully avoided. It became especially moving, then, for me to follow others who were making their way through the “shadow part of life,” as I put it in the book.

My memories of her shaped my lens: I wondered, Can we find ways to embrace this part of life, to meet it with less fear? Can we also try to make it better for everyone?

How did you connect with the hospital caregiver support group?

In late 2009, I went to a dinner party, a birthday celebration for a friend. I ended up seated next to a man whom I call Ben in the book. He told me that he was the lead behavioral health counselor at our local hospital, and that he also facilitated a weekly support group there for family caregivers. I told him I was a journalist interested in healthcare and mental health issues. He suggested I might want to sit in on the group, and later he asked the group members’ permissions. Before long I was listening to their stories.

Is there any particular quality you discovered about these caregivers that you didn't expect?

It may sound surprising, but spending two years with the support group gave me a new and better sense for what constitutes heroism. I saw heroism in Penny, who had taken her forgetful mother, Mary, into her home. Caring for Mary was not easy, but Penny met Mary’s needs as best she could, sought to provide her mother with as much comfort, care, and happiness as seemed possible. I saw heroism, too, in Daniel, a caregiver who was himself quite frail, and whose wife was bipolar and in pain. Daniel also bravely did his best to meet his wife’s needs.

Their heroism, to me, was a willingness to keep returning to difficult circumstances, to persevere and act compassionately, to try to ease others’ suffering.

This idea of heroism is similar to the notion that bravery is not the quality of being free from fear; rather, bravery is a willingness to act in spite of fear.

Some (many?) caregivers are reluctant to take on so much responsibility, but feel they have no choice. Is this true for most informal caregivers these days and how does our modern notion of caregiving differ from past generations?

In the most important sense, there was less choice a century ago. The word “caregiver” didn’t exist; the words “daughter” or “wife” or “sister” sufficed to describe a caregiving role.

Women, in other words, were expected to provide care to those who needed it. (Men did give care, but much less often.)

And yet it’s true that many of the caregivers I followed felt they had no choice. In some ways, this is remarkable, given our highly developed medical system. Yet unpaid family caregivers still play the largest role in meeting the need for long-term care. Medicare does not cover most of what the elderly with chronic conditions need. Family caregivers are still, in a sense, conscripted, drafted by their roles. So while many caregivers respond to those unmet needs with love and willingness, the work they do is often very challenging and exacts a toll—emotionally, physically, and financially.

Perhaps the biggest difference between the modern caregiver’s experience and the experience of a woman in, say, the 19th century, is that today’s caregiver is so isolated. Before the rise of professional medicine, women were the ones responsible for medical care. They also often lived a “collective” life, to quote the historian Emily Abel. They were in and out of one another’s houses, shared remedies, took turns caring for the ill.

In contrast, today’s caregivers do their work mostly alone, privately, while trying to do what a remote medical authority says they should for their loved ones. It seems very possible that the psychological stress of caregiving is greater today because of both this isolation and a loss of authority over medical care.

Burnout, obviously, is a huge problem. What kind of burnout/illness did these caregivers face and, after following them for three years,  is there anything you think caregivers can do to protect themselves from all the stress?

The people I followed had varied responses to their caregiving, resulting from their particular temperaments, the relationship each had with his or her family member, and other circumstances such as the nature of the family member’s illness. Liz, for instance, was responsible for her husband, who had Alzheimer’s. He had been verbally abusive toward her before his illness. She struggled, therefore, with feelings of reluctant altruism, obligation, resentment, guilt, anxiety. Over the years that I followed the group, Liz also suffered a number of severe health problems. There’s no way to know for sure if her illnesses were caused by the stress she was under, but it seemed clear that her health was at least the worse for it.

Managing stress was a central topic in the support group. Its members and their facilitator, Ben, encouraged one another to ask for help so that they could rest, exercise, get together with friends. Ben also encouraged the caregivers to be aware of difficult feelings, and to question the negative thoughts that gave rise to these feelings (“I’m a terrible husband,” “I’m not doing enough,” “my siblings are never going to support me in this decision”).

The group also brainstormed solutions to practical problems: for example, one member suffered from sleep deprivation because her husband was restless at night. They suggested installing a device that could alert her when he got out of bed, or finding a nighttime home health aide.

So there are three primary ways that, I learned, caregivers’ stress can be eased: Emotional support soothes their sense of isolation. Time allows them rest, relaxation, and “self care.” And help with practical difficulties—such as advice about coping with an agitated spouse, or more formal training in tasks like medication management, wound care, and so on—help them give better care, and empower them.

You talk about the Affordable Care Act a bit and how hospitals and care facilities are adapting. Is there anything in the law that will make things easier for caregivers? 

While the ACA is not focused on elder care — that’s the domain of Medicare—there are measures in the law that may shift some of the burden of “care coordination” away from family members onto medical practices. “Accountable care organizations” are rewarded for keeping patients healthy rather for performing medical procedures—and therefore have an incentive to better monitor and coordinate the care of patients with multiple, chronic illnesses. Caregivers whose family members are patients at ACOs may therefore have less work to do in keeping track of diagnoses, tests, medications.

Another measure, Independence At Home, is being tested at medical practices around the country—it promotes the use of remote monitoring of patients at home, and home visits by nurses or doctors, and more flexibility in meeting patients’ particular needs. The program shows promise in reducing the need for doctor’s visits and emergency trips to the hospital—and could, too, ease caregiver burden.

Penny, one of the women you follow, seems like her own private Accountable Care Organization, managing a mind-blowing array of medical and other logistics for her mother. Can you talk a bit about this phenomenon.

It is one of the most common challenges of caregiving. Penny keeps track of diagnoses from several specialists, the medications prescribed by those specialists, tests and their results, upcoming doctors’ appointments, her mother’s Meals On Wheels schedule, the work of home health aides. Penny also monitors her mother’s finances and strategizes about how her mother’s care will get paid for in the months and years to come.

This need for care coordination springs from the fact that the family caregiver is, as I write in the book, a sort of accessory to the often fragmented world of professional medicine.

It seems that often, in families, one sibling will take on the role of caregiver while the others will hang back. True? And how then does this tend to play out in families? Massive guilt? Infighting? What?  

It was a major topic in the support group—sibling dynamics. Unless a family is highly adaptable and good at working out issues together, a parent’s need for care will likely cause some degree of conflict among adult children. A parent’s emerging dependence, the “role reversal” that comes with it, the loss of the parent as authority figure and/or nurturer, and the anticipation of a final loss—all of this has a way of solidifying, perhaps exacerbating, childhood roles and dynamics. Emotions around “who Mom loved best,” and who is the “good daughter” or the “good son” and so on, become heightened. This could mean guilt on the part of the less involved sibling, defensiveness, or denial. It often means some degree of resentment on the part of the sibling who has taken on the bulk of the caregiving role.

Several of the caregivers in the group were working on finding ways to take care of themselves in the face of difficult sibling dynamics, to ask for help from family members who could provide it, and/or to set boundaries with family members—without further complicating family dynamics.

What did you learn about memory while covering this topic?

Primarily I learned about the centrality of memory in everything we do. There are many different types of memory, but in the most basic sense, memory is stored learning. Virtually every activity—from calculating complex equations to walking and eating—is accomplished because the brain remembers how to do it. Dementia is a terminal disease because of this central role of memory, of the brain. Dementia is fatal because eventually the brain can no longer remember how to keep the body alive.

What's your takeaway on assisted living facilities?

On the one hand, I’m glad the good ones are there as an option. In our current long-term care system, keeping someone at home who is, say, incontinent, incompetent, agitated, or prone to wander, or all of these, may simply be too much; it can be too difficult sometimes to keep such a person safe. In addition, institutional care can offer the elderly who are living alone more social time, interaction, engaging activities. So I don’t think assisted living or nursing homes need always be seen as depressing or regrettable choices.

On the other hand, I do think we should work on all feasible ways to give the elderly the option of staying in their homes — or the homes of family members, when that’s appropriate. And we should be continually working to improve institutional care.

Do you think the use of drugs in some of these institutions has grown out of hand?

That is my impression. But there also seem to be increasing efforts to reform drugs’ use. Professionals in the field of long-term care seem to be increasingly interested in non-pharmaceutical approaches to “managing behavior” (it’s such a clinical phrase) in nursing home residents. There seems to be more effort to see people with dementia, in particular, as whole human beings, people who benefit from soothing, nurturing environments; from activities that engage the parts of their minds that still function; from approaches that “meet them where they are”—approaches that don’t question their realities, but seek to validate and respond to their experiences, to improve the quality of their lives.

Research has shown that such “behavioral approaches” can successfully replace many pharmaceutical ones.

You write about certain "moments of loveliness" amidst the difficulties. Can you expand on this?

I was referring to moments in the support group when I witnessed a beautiful joining of intimacy, trust, and respectful distance. A diverse group came together each week, each person offering updates in his or her ongoing, private struggles. By sitting together, listening, telling stories, sharing practical advice, laughing and sometimes crying, there was closeness and also boundaries—which I think equals “safety.” No one tried to fix anyone else or her situation. I learned about the value of this kind of respectful, compassionate support.

I also witnessed many moments of loveliness between caregiver and care recipient—moments of love and intimacy, of facing difficult situations together with humor and courage.

You don't often read about sex in the context of a caregiving relationship; but you delve into it somewhat. Please explain.

One of the women in the group generously offered to speak with me about how her husband’s decline, and her caring for him, had affected their sex life. It seems obvious that erotic intimacy would diminish as one spouse becomes more ill and frail. But particularly in the cases of chronic progressive brain diseases—her husband had Alzheimer’s—the shift in relationship occurs so slowly, so ambiguously, that it seems particularly hard to navigate. In this woman’s case, her new care of her husband’s body hindered her ability to feel sexual with him. She found this to be an especially poignant, painful loss. But I think her recognition of this loss, and her ability to be open about it, helped her to find some measure of peace.

Can you talk a little about "slow grief?"

People used to die more quickly. Now with aging loved ones, we’re more likely to experience what psychologist Pauline Boss has termed “ambiguous loss”—loss that goes on and on, through the incremental decline of someone we love. A person is around, and yet not, and ever less so. She has lost abilities and/or memory; we watch her slip away. We have to endure through this slow loss, slow grief. Boss believes this kind of loss is more stressful than any other because it’s so uncertain. The trick, she says, is to learn to live with ambiguity.

Is death often a relief in these cases?

Some of the group members whose loved ones died while I was working on the book did express relief after their family members’ deaths. Of course that’s only part of the story. It’s not an “oh, thank goodness, now all is well” sort of relief. It’s more of a release from that slow grief, that ambiguous loss. Now one can mourn the complete loss, and in that there is a sense of relief, release. Along with that, of course, there may be relief that the ill person has been released from suffering, from long decline.

Most of these caregivers were fairly stable financially, to a greater or lesser degree.  What's going on with informal caregiving among lower-income folks?

First of all, the lower the income and education, the more likely a person is to be an informal caregiver, surveys show. For working-class family caregivers, the financial toll of taking on a loved-one’s care may be particularly high, as a working person tries to balance the family member’s needs with her employer’s needs with her difficult financial circumstances.

Still, there’s a paradox when it comes to long-term care, which is that Medicaid—the government program that provides health insurance to the poor—offers more coverage for long-term care than Medicare does. So people who qualify for the assistance of Medicaid may have more of their needs covered than if they had higher assets or income.

How has writing this book changed your ideas about yourself as a potential caregiver when the time comes?

I feel more prepared, aware. I also feel more open to what previously made me uncomfortable—the disability, frailty, decline that my grandmother so feared. Because I spent several years immersed in sights, sounds, issues, emotions, and challenges of the shadow part of life, I think I’ll be more able to meet the needs of people I love when they become dependent. (I also think I’ll work better with other family members in coordinating care, in part because I’ve learned a good deal about the logistics of long-term care.)

Still, I wouldn’t want to trivialize, nor say that writing a book made me an expert in the day-to-day challenges of caregiving. That expertise, I think, can only truly come through the doing.

Can you suggest some resources for people who want more information on caregiving?

Access to support groups for family caregivers is growing, and awareness of the need for them is growing, too. The Alzheimer’s Association, at 800-272-3900, can help with finding local dementia-caregiving support groups, as can their web page dedicated to finding support groups. Doctors, local senior centers, hospitals, and the federal government’s eldercare locator are also good resources for getting information about support groups of all kinds. Lake's website also has other resources for caregivers."

Nell Lake, a journalist and magazine writer, was the founding editor of the Nieman Narrative Digest at the Nieman Foundation at Harvard University and has written for The Boston Globe, Yankee, Harvard Magazine and other publications.

Headshot of Rachel Zimmerman

Rachel Zimmerman Reporter
Rachel Zimmerman previously reported on health and the intersection of health and business for WBUR. She is working on a memoir about rebuilding her family after her husband’s suicide. 



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