“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.” n 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 thatyou 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.
Almost everyone’s heard about the coming demographic wave–that 12 percent of the population now over age 65 will grow to 20 percent by 2020. But, of course, this isn’t the real problem in the aging population. 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.”
To illustrate just how different 75 can be from 85, consider the risk of dementia. For people in their seventies, risk of dementia is only about 5 percent, while a person over the age of 85 has about a 50 percent chance of developing some form of it. And the number of people age 85 and older has grown 38 percent since 1990, and will likely grow another 50 percent by 2010, making it the country’s fastest growing demographic group. We’re entering the century of the frail elderly.
In many respects, this extended old age represents a vast triumph for modern medical science. Thirty or forty years ago, even two decades 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’
The aging revolution is bringing about a new normative experience in the family life cycle because, over the next decade or so, the overwhelming majority of Americans will find that their aging parents will require care. This new stage will mean that most families have to develop new skill-sets: they’ll have to learn the ropes of Medicare and retirement programs, the ins and outs of how to accurately judge what kind of care their parents need, and how to manage their parents’ financial and decision-making processes. All of these changes will require structural changes in how families operate.
As mentioned earlier, Laurie, a retired schoolteacher, came to see me because she’d recently started caring for her mother, felt overwhelmed by the task, and resented losing control of her own life. “It’s not that I can’t care for my mother; it just makes me mad that the whole thing has been dumped on me,” she complained. “I’ve worked my whole life, kept a house, raised two kids, and have five grandchildren. Now my husband and I want to enjoy our lives together and, instead, I’m spending most of every day taking care of my mother all by myself. I’ve just about had it!”
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.
There’s No “Program” to “Save” You
As though they’re working through Elisabeth K¨ubler-Ross’s stages of loss and grief, most caregivers at first ricochet between rejecting the truth and hoping to be magically saved from it. “It just seems to me that the government should do more to support the elderly.” Laurie said in obvious anger and denial.
In contrast to the world in which most of us baby boomers grew up, today the federal and state governments are pretty much in full retreat from supplying support programs to young children, the poor, the mentally ill, and the elderly. And, regardless of whether this administration’s controversial social security “privatization” plan goes through, retirement and health benefits for seniors are more likely to go down than up. In other words, a lot of what needs to be done will be done by us , individually, for our own kin. If we don’t want to see our lives derailed by this challenge, we’ll have to embrace it and look upon the job of caregiving as another life stage with which we must fully engage. So I said to Laurie, “I know it seems as if there should be more support. But for every person in the midst of an overwhelming situation, there comes a time when there’s nothing more to do except go to work, do the best you can, and not expect that anyone else will rescue you.”
I explained to her, “Just as when your children were infants you took up the responsibility to care and nurture them, you’re now being called on to care for your mother. Remember that you didn’t know everything about caring for an infant when you started, but you knew that the job was yours, you accepted it, and, obviously, you did it well.”
Laurie shot back, “Yes, but I chose to have children. I really didn’t ask for or expect to be caring for my mother at this stage of my life.”
“I totally understand.” I said as gently as I could, “but the reality is that your mother now needs your care. There are some programs that’ll give you some support, which I’ll help you find, but the job and responsibility is basically yours. You have to decide whether you’ll embrace the job of caring for your mother, or let it make your life miserable.”
For several weeks, Laurie continued to rail against the “unfairness” of the situation and to denounce her “irresponsible” siblings. She was expressing an understandable frustration that her siblings weren’t pitching in to help care for her mother. Unfortunately, Laurie’s situation is typical. The average caregiver for the elderly is a female in her late fifties, who’s married and works outside the home.
But what many in our fairness-oriented culture will find shocking, perhaps, is that having the responsibility of caregiving fall primarily on one person is, I believe, how it should be–perhaps the only way it can be and still get the job done. It isn’t that I’m suggesting that every family sacrifice one of its members to the unremitting and miserable toil of caring for an aged parent so the rest can be free to live happy, unencumbered lives. But having worked with many families suddenly faced with caring for an infirm parent, I’ve come to the conclusion that caregiving is done best and most efficiently when it’s basically the responsibility of one primary caregiver.
Consider the practical realities. The elder needing care in the 21st century will have many health problems, several physicians and health care providers, and myriad medications in his or her regimen. If there are two equal caregivers, for example, then both will be required to know every aspect of the elder’s health complaints, be familiar with all doctors in order to manage care, be aware of every medication, and be up to the minute on the elder’s changing daily health status. In today’s society, where most adult children are disengaged from their families and live in separate households, often at some distance from each other, the kind of constant communication and coordination required for truly equal caregiving would be extraordinarily difficult. Just think about how hard it would be to come to a quick, equitable consensus about complex issues with other caregivers, who all may have different, not necessarily compatible, ideas, opinions, and emotional agendas.
As Laurie and I talked about these issues, she began to understand the rationale for the one-caregiver model. “I think I really get it, finally,” she said ruefully one day. “I realize there’s no shining knight out there to take over the care of my mother.” But still, she wanted to know, why did that one caregiver have to be her ? And did this mean that the rest of her siblings would get off scot-free?
I don’t believe that just because there should be one primary caregiver the decision about caregiving responsibility should be made by default. Laurie resented that the job had been “dumped” on her, and rightly so. True, Laurie was the eldest sibling, lived in the same town as her mother, and was now retired–thus ostensibly giving her more free time. Naturally, perhaps, her younger brother and two sisters just assumed that she was the natural choice. But most of us resent it when others make assumptions about how we spend our lives.
Instead of a default decision, I believe there should be a “commissioning” of the caregiver, whereby all the members of the family assemble, look at the realities and problems of the job and their own capacities and limitations, and come to a mutual decision about who’s best situated to be the primary caregiver. The commissioning process formally identifies the person who’s in the best situation to become the caregiver, clarifies his or her right to power and control in the caregiver role, and gives that person the critical voice in decision-making. This allows the caregiver an opportunity to embrace the job as a choice and assuages feelings that the job was dumped on her–she knows she’s calling the shots and that her role has been acknowledged openly by the others.
For the commissioning process in this case, I had Laurie invite her brother and two sisters to come in for two sessions. I started the session by saying, “There was an assumption made by the family that Laurie would be the caregiver for your mother. I think that we should backtrack a bit to make sure everyone knows the impact of such a decision, and make sure that Laurie’s the one best suited to take on the responsibility.” I suggested that all four of the siblings seriously consider what the responsibility of taking care of their mother would require of each of them and their families were they nominated to do it instead of Laurie. At first, Laurie’s brother and two sisters refused to take the idea seriously and tried to weasel out of the discussion by making flip remarks, like, “Oh, I can’t even imagine such a thing!” But as I held firm, they began to understand the scope of the work involved with caregiving.
Laurie’s brother, for example, admitted that handling his mother’s bills, arranging her appointments, checking in on her daily or every other day–even if she were in a care facility or had a paid caretaker–would easily use up three or more hours of his day. “I’d have to use all my sick leave to take her to appointments, and my absence would mean my career would grind to a halt, if I didn’t lose my job. I never really considered the impact until now.” After talking further about how his family’s life would be wrenched out of shape, the brother looked at Laurie and said, “I’m so sorry that we just automatically piled all of this on you. I can see that it’s an overwhelming task.”
During the second session, Laurie’s two sisters talked about how being primary caregiver would disrupt their work lives, possibly forcing them to cut back or quit their jobs, with serious economic ramifications. They also discussed how taking over the care of their mother would cost them precious time with their husbands and children. This kind of conversation can be very encouraging and gratifying to the caregiver, because it lets her know that the others have really thought about what’s involved and really get it .
When everybody had spoken, I said, “Now it’s time to select a caregiver.” I explained the responsibilities of the caregiver and the reasoning behind having the job handled primarily by one person. The siblings discussed pros and cons for several minutes, sincerely considering what it would mean if he or she were selected as the caregiver, which is necessary if the final outcome is to be a meaningful choice. Finally there was a pause and Laurie said, with real conviction, “I really do believe that I’m the one best situated to care for Mom. I realize that this has got to be my job, and it still seems very hard, but it’s done me a lot of good to have all of you acknowledge how big the job truly is.”
Though the commissioning process usually ends with resolution, it can be hard as siblings grapple with the awful possibility that the caregiving job may come to them. And, regardless of who actually does end up in the role, everyone must deal with the issues of responsibility and guilt this conversation engenders.
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 themout 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.
Although the essence of the structural change in the family required for the caregiving task had been made, I like to perform a ritual to galvanize the family decision and commission everyone’s new role. I suggest that members make some form of physical connection and that each one make a statement of intention. Laurie said, “Caregiving is now part of my life, and I intend to do the best I can caring for Mom and maintaining my relationships with all of you.” Laurie’s sister said, “I promise to support your decisions, even if I’d have decided something different.” Laurie’s daughter said, “I want to be there for you and connect with you the way I want my daughter to one day connect with me when it’s my turn to take care of you.”
The Transcendent and Spiritual in Aging
It’s become a truism of pop spirituality that a major life difficulty, even a tragedy or period of mourning, can help us “grow” emotionally and spiritually. Of course, this is generally true, and I’ve found it to be true among many of my clients who have to take care of aging parents. Nonetheless, when clients first come in with the problem of how they’re going to take care of an increasingly dependent elder, trying to get them focused on the spiritual rewards of sacrifice and the emotional growth they’ll acquire in the process of caregiving is doomed to failure. It’s only after the practical and pragmatic issues have been resolved, when there’s a real caregiving system in place, that the whole issue of transcendent meaning can even be approached. I’ve found that clients can often find the challenge of caregiving far less wearying and discouraging if they can begin to focus on the unexpected gifts this difficult period might bring to them. But to recognize and accept the gifts requires a shift of attitudes, not only about the nature of personal responsibility and accountability, but about the inevitable realities of human life and death.
As a culture, we’re inclined to regard many of life’s trials as practical problems to be solved. If we’re sick, we go to a doctor to get the latest medication or medical procedure. If Mom or Dad can’t live alone, a care aide or assisted-living situation will take care of it. If their minds are going, a prescription for Aricept will help. Often we’re so busy solving problems that the chance to deepen and enrich our relationships with our aging mothers and fathers before they die slips through our fingers.
But the extended and frail old age of our parents, and the inevitability of their sickness and decline, represent a profound existential dilemma for us–one that won’t be neatly resolved by any biochemical or social intervention. If approached in the right spirit, caring for an aged parent not only provides an opportunity for reconnection, but challenges us to reckon with death and ponder what we’ve received from our parents, what we’ve missed, and what we want to pass down to our children and grandchildren.
After it became clear that Laurie’s mother, besides having heart problems, also had dementia and probably Alzheimer’s disease, Laurie read article after article trying to find the latest miracle drug. She diligently practiced memory skills and compensating activities with her mother to improve her life. Was all this effort wasted? It may have helped maintain her mother’s facilities somewhat. But Laurie’s preoccupation with making her mother better left her no time or energy for nurturing the emotional connection between them. Meanwhile, notwithstanding all Laurie’s exertions, her mother still deteriorated.
“I just don’t want to give up,” Laurie said when she and her mother, Pearl, came in for a session a year after our original meeting.
I answered, “I understand not wanting to give up, but let me ask you, do you believe that your efforts will prevent your mother from getting older, weaker, and eventually dying?”
Laurie was taken back a bit and said, “Well, no, but I do want her life to be as full as possible while she’s living.”
“That’s a worthy goal, but in my work, I’ve always found that in the end, the thing that makes life full is relationships,” I told her. Both Laurie and her mother nodded. “I’m not saying that you shouldn’t try to make things better,” I added, “but I’m saying that it’s worth letting some things go so you can do some of the important emotional connection that makes relationships full.”
Laurie seemed willing and said, “How do I do that?”
“By allowing your mother to do the really important work in the aging process,” I answered, looking at her mother. Pearl was in the early phase of Alzheimer’s and looked at me confused. “It’s very hard to make connection when you have memory limitations and physical problems, but it’s very important for you and your daughter to review some of your accomplishments in life that have made you wise. It’s important that you teach her about things that you’d have done differently and the lessons you’ve learned. It’s important to teach her what it’s like to grow weaker and face the prospect of death.” Pearl nodded slowly and solemnly, then smiled at Laurie, as if trying to reassure her, and reached over for her daughter’s hand.
I taught Laurie to connect with Pearl’s wisdom by using a technique that involves asking about the historical events that were the setting for her mother’s development. For instance, when her mother was a young adolescent, the Great Depression was devastating the country. After a short training in how to identify major historical events in the context of developmental periods in Pearl’s life, Laurie asked her mother, “I know that the Depression was very hard on families. How was it for you when you were a girl?”
Pearl answered, “We lived on a homestead. We didn’t have much, and Lord, we worked until I thought I’d die. From the time I can remember, I was chopping cotton or hoeing beans.”
“I know you were a hard worker and you passed that along to me.” Laurie said.
After listening, I modeled for Laurie an extension of the technique. I asked Pearl, “You were a hard worker, but did that time during the Depression, when you had to work so hard, leave you with any regrets?”
Pearl thought for a moment and said, “We didn’t have any time for each other in my family.” After a long silent pause, Pearl’s eyes caught Laurie’s and she said, “I wish I’d taken more time to be with you.”
Laurie’s eye’s filled with tears as she moved over to embrace her mother and said, “You did great, Mom.”
Pearl responded, “I think you’re great.”
This is a perfect example of one of those transcendent moments that you can’t script, but the resulting emotional connection communicates a level of love, security, warmth, and care that the most intense problem-solving efforts could never achieve. Essentially, Pearl was giving Laurie a blessing.
Laurie was concerned as the session drew to a close because her mother was unlikely to remember the words that were spoken in the session. This is a very real possibility, and often older people don’t remember. I said, “Even though Pearl may not recall the exact words, much of the emotion of what went on here will stick with her. And most important, you’ll remember and learn.”
A spiritual connection between aging parent and adult child is also enriched by facing together the questions and issues raised by approaching death. In another session, I asked Pearl, “What is it that you’d like to be remembered for?” Pearl thought and said, “That I was a good mother and that I did the best I knew how.”
“Are you frightened?” Laurie asked.
“I’m scared that I’ll burden you even more, but I’m not afraid to die. I believe I’ll be in heaven. I know I’ll be okay. I don’t want you to be sad,” Pearl answered.
Beyond comforting Laurie, Pearl was implicitly setting a good example of how to confront death when her daughter’s time came.
In our performance-based culture, we’ve acquired some curious misconceptions of what good “old aging” means. We believe that examples of good old aging are the 86-year-old playing jazz piano in a club or an 80-year-old running a marathon or the 78-year-old on a round-the-world tour. Certainly, I believe people in their eighties and beyond should live the richest and most active lives they’re capable of. But let’s not misunderstand: these are examples of middle aging. Good old aging is when we face the ultimate realities of decline and death, and still try to do what we can and maintain our significant connections with family members. When we do so, we demonstrate a love and steadfastness that’ll live with future generations long after we’re gone.
Two years went by, and Laurie’s mother slipped into the morass of Alzheimer’s disease. Laurie returned to therapy to deal with her grief. “My mother has no idea who I am,” she said. “She lives in an Alzheimer’s unit now, but when I go to visit her, it’s like I’m not even there.”
I responded that this sort of grief is particularly difficult. “We call it ambiguous grief, because your mother is still alive physically, but in other ways, she’s essentially gone.”
Laurie almost wailed as she said, “And I forgot to say good-bye. I lost her so gradually that I forgot to say good-bye to her while she still remembered who I was.”
I sat with Laurie a long time as she cried. Finally I said, “You may have forgotten to say good-bye for the last time, but you made a very good connection with your mother and helped her do the important work of aging, which was itself a very loving, extended good-bye.”
I continued to sit with Laurie for a long time, and then she said, “It’s funny. I’ve been thinking that Mother slipped by me like a stranger walking on a street. But it’s good for me to remember that we really did make that connection. I’ll always have that part of Mom.”
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.
In my last session with Laurie, she was still in grief. But she ended the session saying, “This process of caregiving has been awful, and I’d never wish it on anyone. But I’ve connected with my mother in a way that was sweet and even peaceful. And in the end, she taught me how to slow down and pay attention to the really important things.”
Terry Hargrave, PhD, a professor of marriage and family therapy at Fuller Theological Seminary. He is the author of numerous articles and books, including Restoration Therapy: Understanding and Guiding Healing in Marriage and Family Therapy.