Creating a Support System for the Caregiver

Confronting an Unprecedented Challenge of Old Age

Terry Hargrave

"I really can't believe this is happening to me right now," said Laurie, a vigorous 66-year-old who had big plans to travel with her newly retired husband. "My mother has always been independent and healthy, until last spring, when she began not feeling well--tired all the time, trouble breathing, chest pain. The doctors have finally said that she has heart disease and, because she's almost 90, there's not a lot to do." Laurie's mother had also become moody, forgetful, and needy, and there were signs of early dementia. "Just in the last month, she's stopped driving, stopped shopping for herself, and I have to insist every day that she bathe and brush her teeth."

Laurie sighed heavily, as the reality of her life fell on her like a heavy, musty old coat. "All of a sudden, my life totally revolves around my mother's needs. I hate to say it, but I resent the fact that I'm losing the life I thought I'd have--you know, seeing my grandchildren and enjoying my retirement. Now it feels like I have another child to take care of. My mother's a good person, and I feel guilty about even saying I resent taking care of her--but I do."

Laurie had just been introduced to a new world. Like Laurie, all of us have been hearing about this new world for quite some time, and may even have seen some early-warning signs in our own families. But until you discover that it's your own elderly mother or father who's "failing," forcing you to the crushing realization that you are the designated caregiver for him or her, it's still possible to maintain the illusion of being in command and control of your life. Having that illusion overturned by events is like finding yourself neck-deep in swirling gray water.

Most of us, like Laurie, will be full of energy and engaging in vigorous midlife activities through our sixties and well into our seventies. It's the growing population of those 85 and older that threatens real change to the way we live, possibly affecting every family in America during the next 25 years. People 85 and older comprise the demographic most likely to have chronic health problems that'll put them into the "frail elderly" category, something entirely different from what's sometimes called "young old age."

In many respects, extended old age represents a vast triumph for modern medical science. Forty or fifty years ago, people who became seriously ill in their sixties and seventies usually didn't live very long--cardiac, pulmonary, and vascular disease, diabetic complications, cancer, a serious fall resulting in a broken hip, even a bad case of flu often killed them within a few weeks or months of diagnosis. But today, what were once fatal diseases have been transformed into chronic conditions, treated and managed by medical interventions that can prolong life for decades.

What does this mean? On the one hand, it means that we'll have the company and companionship of beloved parents, grandparents, and great-grandparents for many more years than once would have been thought possible. On the other hand, it means that long after most of us have received our AARP card, we'll be caring for our aging parents. It means that, at a time when we've traditionally thought we'd be the eldest generation--enjoying our grandchildren, traveling, masters of our own time, enjoying the fruits of retirement--we'll instead be on the front line of caregivers for frail, elderly parents who are in their eighties and nineties.

It's hard to overestimate how different this situation is from the one that faced most of our own parents when they were in their fifties and sixties two to four decades ago. In those days, it was still more or less expected that once you hit retirement age, you really would be retired. Your kids were grown and off raising their own families, while your parents had most likely passed on, leaving you on your own, unencumbered by responsibility for the care either of dependent children or dependent elders.

Certainly, our parents, these members of the "greatest generation" and beyond, saw it as their natural duty to take care of their own elders as long as necessary, and did so mostly without complaint. But decades ago, the period between the time aging parents first needed help and the point at which they died was likely to be short--a matter of months, rather than years. Today the boomers, much maligned for their presumed selfishness and resistance at the prospect of caring for their elders, are facing a far more daunting, long-lasting challenge than their forebears ever did.

In many cases, those of us in late middle age and young old age may, in fact, be spending a good portion of our own old age taking care of people who are not only older than we are, but sicker, more debilitated, handicapped, and dependent than our own grandparents ever were. Indeed, it doesn't seem too far-fetched to say that this generation of 50- and 60-somethings is pioneering a new, unprecedented, and challenging social reality.

This new reality means we'll have to modify the practical conditions of our lives substantially, by transforming the functions of family members to accommodate the tremendous economic, physical, and emotional challenges our aging parents will pose for the culture. It also means we'll have to deal with the inevitable emotional fallout of having to rethink our own life plans, our own dreams, our own sense of ourselves and what gives our lives meaning--at an age when we'd have supposed all those issues long settled.

This shift may be particularly difficult for our society. We fear losing control of ourselves as we physically deteriorate, and hate to contemplate death and dying. We tend to see the very oldest in our society, even within our own families, as having no real role to play in our lives and no purposeful lives of their own. Not surprisingly, we resent sacrificing ourselves and our plans to the intrusive, difficult, painful, and, at times, nauseating task of caring for an elder in need. But, from now on, we're unlikely to have much choice in the matter.

And yet, in spite of having our lives upended, our plans tattered, we do what must be done. In my experience, clients go through a predictable process of disbelief, denial, fury, blame, guilt, and grief over their own lost plans, and then settle down, sigh deeply, and, with greater or lesser grace, take up their new obligations. In all the years I've been working with people faced with this issue, I've known only one client who opted out and left the job completely to his siblings.

The Times They Are a Changin'

I hear stories like Laurie's often in my office. Unfortunately, there are no easy or immediately available solutions. There's no quick therapeutic intervention that'll resolve what is, in fact, a massive and still largely unacknowledged social change just now beginning to descend upon us. Laurie, like most of the culture now entering this new world, must learn to understand and accept hard facts that simply don't mesh with current ideas about family, life transitions, and what the future holds for all of us. Simply stated, I believe she and everybody else in her circumstances must come to grips with the reality that there's only limited public or outside support for the frail elderly, so families will have to embrace the responsibility of caring for their own elderly kin. Also, the way modern families are structured means that the lion's share of this work will be done by one primary caregiver in the family.

Support for the Supporter

Although she'd accepted the fact that she needed to be her mother's primary caregiver, Laurie was understandably worried about how she was going to pull it off and still have a life of her own. "Being a caregiver is now part of how I define myself," she told me, "but how can I do a good job at it and have any time left to enjoy my retirement with my husband? I don't want my marriage going down the tubes because of this."

I explained that just because she'd been commissioned as the primary caregiver didn't mean that her siblings were off the hook. While I believe that a one-primary-caregiver model works best, it's still a job that can overwhelm even the most willing and organized family member. To meet the challenge of the task, there also needs to be a primary caregiver support group to provide care for the caregiver.

There are many ways to give care to the caregiver. Someone in the support group can be available to provide regular breaks for the caregiver, taking over the care for a few hours several times a week or for a number of days, for example. Regular phone calls are another way, not so much to ask "How's Mom or Dad doing?" but to find out about the caregiver's life and emotional balance. Supportive tasks like cooking and bringing meals, helping out with expenses, providing transportation for the elder to specific appointments, or completing specific assigned tasks--like preparing the older person's tax returns--can help. But it's important to remember that the support group members aren't quasicaregivers for the elders--they've organized themselves around the responsibility of caring for and supporting the caregiver. While the jobs of caring for the parent and caring for the caregiver can look quite a lot alike, caregivers know exactly when sibs are doing something to help them out and when they're focused on the parent. To mix the two roles just breeds confusion about boundaries and potential arguments.

The primary caregiver support group can consist of siblings, children, spouses, and friends. I believe, however, members of the group must choose to be part of it, and their choice must be overt and clearly acknowledged. Laurie and I discussed who'd be good members for her support team, and she chose her husband, siblings, and adult daughter. Sometimes, of course, the person chosen doesn't want to be a part of the caregiver support group. This is usually met with sadness, anger, and, sometimes, bitterness. But it's a necessary step for the caregiver to find out whom she can depend on and who isn't willing to answer the call.

I met with Laurie and her family the following session and after explaining the responsibilities of the primary caregiver support group, I said, "All of you are the ones Laurie has chosen to take on this responsibility for giving her care. Like Laurie, who's learning to care for her mother, you'll have to learn the job as you go, because neither you nor Laurie knows exactly what she'll need along the way. The commitment that you make, if you choose to do so, is that you'll look for ways to be a resource to Laurie as she takes on the job of the main resource for her mother." Everyone in the room agreed to be a part of Laurie's support group, and I used the rest of the session to explore specific ways each person could start offering care.


The spiritual and transcendent truth we learn from the sometimes overwhelming task of caring for an elder is that we, too, are weak, frail, and flawed. But if we can allow the relationship with our elder to become the focus of our attention, then this life-lesson about our own inadequacy can be transformed into a kind of blessing. Though some of what we discover in our relationship with an elder will be hard to face, some will strengthen us and even give us joy, becoming a treasured memory we'll recount to our own children and grandchildren.

sheer capaciousness of the hard-to-define category we call normal.


This blog is excerpted from "When You're 64," by Terry Hargrave. The full version is available in the July/August 2005 issue, Whatever Happened to Family Therapy?: The '70s Revolution Goes Mainstream.

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Photo © Katarzyna Bialasiewicz/

Topic: Aging

Tags: 2005 | caregiver | caregivers | caregiving | Children | Children & Adolescents | mother | parents | self-care

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