Honoring the Mission

This article first appeared in the May/June 2006 issue.

Q: My clients who take care of aging parents complain about being exhausted, depressed, and resentful, but resist my suggestions for making their lives easier. What approach is effective with them?

A: The 25 million Americans who care for ill or disabled loved ones on a daily basis frequently become depleted from feeding and toileting, bathing and dressing, comforting and cajoling their aged relatives for months or even years. It isn’t surprising, then, that they have very high rates of depression, anxiety, and medical problems of their own.

But caregivers are notoriously loath to seek help for themselves, because they feel guilty about focusing on their own needs when their family members are in so much worse shape. As a consequence, they generally enter psychotherapy reluctantly, only after being hauled in by relatives or strong-armed by physicians, usually because they seem to be near the breaking point, emotionally or physically.

The crucial mistake that many therapists and other health care professionals make initially with one of these bedraggled, middle-aged, female caregivers (and most caregivers are females in their fifties and sixties), sitting tensely on the edge of her chair, is to listen with empathy to the story of her arduous life and then state what seems obvious: she’s burning herself out by doing too much for others and too little for herself. The therapist will then advise her to take some time off to replenish herself. The common response is that she’ll glaze over, nod politely, and keep a straight face, but she’ll be thinking the therapist doesn’t have the foggiest understanding of her or her situation. She may even balk at returning for further sessions.

The problem is that, for her, the job of family caregiving and her reasons for doing it involve issues that are too complicated to be resolved with simple bromides of the kind the therapist is offering. Life circumstances have obliged her to make the hard choice of sacrificing her personal dreams for the well-being of another and the collective good of the family. Such a choice–and she’s chosen not to simply walk away–demands a measure of love, a modicum of loyalty, and a high degree of commitment. But it requires most of all an essentially moral decision to choose selflessness–even if she harbors ambivalence about it–and to become, in her own eyes, a different kind of person than she might otherwise have become. The suggestion that she just take time off and relax (“Go see a movie once a month”) strikes her as glib at best, uncomprehending and possibly condescending at worst. It makes her feel that her sense of purpose, with which she justifies her self-neglect, is being trivialized.

A better approach for therapists initiating relationship with a caregiver is to express wonder for what she’s doing, rather than to implicitly denigrate her sacrifice by telling her that she ought to be doing less of it. I begin by exploring in great detail what the caregiver does day-to-day to help her parent, spouse, or partner. I then marvel at her mastery of the thousand caregiving tasks, rather than gape at her masochism.

Once I’ve conveyed that I appreciate and admire all that she accomplishes each day, I ask her to reflect on her motivation for doing what she does and the meaning she attributes to her mission: “Why do you do all you do for your loved one? What has it meant for you at this point in your life?” She usually pauses, as if surprised that I’m not just offering advice. She’ll then often struggle to put into words her reasons for being a caregiver: “Because she always took good care of me, and now I want to give something back to her”; “Because God has put this task in my path, and I hope I’m up to it”; “Because I vowed to be there for better of worse'”; “Because I know I’m making a difference in someone else’s life.”

This emotional exchange alone can be enough to bolster the therapeutic alliance, so that the caregiver may actually be readier to consider accepting advice. But before risking a recommendation, I build on the initial exchange by honoring the caregiver’s mission and inquiring about sustaining it. For example, I may say, “It’s wonderful that you’re demonstrating your gratitude to your mother for all she did for you by taking care of her now. I think you’re also demonstrating to your own children what the value of family is–to be there for one another in the hour of need.” I then add a cautionary note: “But what I know of most caregiver situations is that they’re not sprints, they’re marathons. They go uphill and downhill for long stretches, during which caregivers must pace themselves, and take breaks for water and a little nourishment. Have you given any thought to how you can sustain yourself for that marathon, so you can do what you’ve chosen to do for as long as the course runs and you decide to continue?”
If I’ve been successful thus far, the caregiver feels that I’m running along beside her cheering her on, rather than putting obstacles in her path. She realizes that I’m supporting her choice and purpose, not trying to supplant them with my own agenda drawn from my supposed expertise. The focus of the conversation has now subtly shifted from resisting change to sustaining the status quo. But the issue of sustainability brings up questions about sustenance. Is the caregiver taking in what she needs to finish the race? What is sustenance for her? While I certainly have my own ideas about what’s essential to continue caregiving over the long haul, I find that different caregivers have different ideas about what constitutes sustenance.
For instance, when I ask, “What do you need in order to do more of what you’re choosing to do?,” some caregivers simply answer, “Someone to listen to me and understand what I’m going through.” I don’t challenge this, even if I think she might benefit from other things, too; instead, I take it as a starting point for our work together. I offer ongoing sessions for us to talk further. I ask her if she wants to reach out to others for similar conversations. If she agrees, then we’ll discuss the possibilities for being heard and cared for by family members and friends. I’ll also suggest local support groups and online chat rooms, knowing that not only will the caregiver feel understood in those forums, but, by having the chance to hear and understand how others like herself think and feel about caregiving, she may adopt a broader view of her own mission.

If the caregiver’s idea of sustenance is having hands-on assistance in the home, then I’ll ask her what efforts she’s already made to recruit such help. If she hasn’t done so because she doesn’t want to burden anyone, then I’ll remind her that if others share her goal of caring for their loved one, they may be willing to contribute, to keep her going in the good work she’s doing. I may also provide specific information about hiring home health aides, using Meals on Wheels programs, or seeking church volunteers.

If the caregiver says that nothing will help sustain her, then I bring up the marathon metaphor again. Can she really last as long as is necessary, I ask her, without a bottle of Gatorade and a cool breeze at her back? I suggest that, even if she feels no need for sustenance now, she may in the future, and should devise contingency plans. I add that living one day at a time is a fine way to cope with many kinds of stress, but not necessarily with caregiving. In this case, the ability to look down the road and prepare for changes in the loved one’s medical state or financial status can make the difference between finishing the race and dropping out before the end.

These are the beginning stages of what may be the therapist’s own marathon with the caregiver. I’ve met with some of my caregiver-clients for years as they struggle with the vicissitudes of their family member’s lingering old age, chronic illness, or disability. The next stages of psychotherapy often include a more thorough exploration of the caregiver’s feelings about her endeavors–reflecting upon her past and present relationships with the person receiving care, discerning the impact of her caregiving on other family members, and attempting to recapture some of her own dreams for herself. But without the emphasis at the outset on identifying, honoring, and sustaining the caregiver’s mission, you’re unlikely to ever progress beyond the starting line.