Support for Spousal Caregivers

By Barry J. Jacobs, Psy.D.

Honorary WSA Board Member

Author of AARP Meditations for Caregivers (2016)

 

            At the 2000 WSA conference in Philadelphia, a brief interaction with several workshop attendees changed the course of my psychological career.

            I was presenting the story of a family member who said she was happy to be caring for her father with dementia. “She must be in denial,” an older woman suddenly shouted from the last row. I was taken aback by her vehemence. Several others in the room nodded in agreement with her. Was caregiving a thankless task for everyone?

            “Is there anyone here,” I then asked, “for whom caregiving has been rewarding?”

            “It has been for me,” said a young man sitting to my right. “I love my wife and am glad for the chance to take care of her.” The woman in the back of the room looked shocked.

            This small incident made me realize that family caregivers have a range of experiences—some negative, some positive—but that the positive ones are often not readily expressed. Instead, we live in a culture in which the predominant narrative is that caregivers are burdened and beleaguered. There’s a steady stream of tragic caregiver movies, memoirs and magazine articles. At support groups, caregivers vent about their lack of sleep, their frustrations navigating the healthcare system, and their feelings of abandonment at the hands of other family members. Their tone is often sad and angry. That has certainly been the gist of what I’ve heard from WSA members when I’ve attended local WSA support group meetings over the years.

            Yet caregiving research does demonstrate that some caregivers thrive in their roles. According to the 2015 National Alliance for Caregiving and AARP survey, about 16% of caregivers say they are not stressed at all by caregiving. And, in my clinical practice, it is not unusual for me to hear from even stressed caregivers that they feel like caring for a loved one helps them grow personally and spiritually, gives them an enhanced sense of purpose, and provides them with the gratification of keeping their families together during tough times. More than one former family caregiver has told me she is grateful for having had the chance to be the primary caregiver to someone she loved, no matter how hard or messy or wearying the caregiving was.

            With these insights in mind, I changed the focus of my psychotherapy practice for family caregivers. Instead of emphasizing strategies for minimizing caregiving strains (e.g., utilizing increased support, setting limits), I began to work with struggling caregivers on maximizing the potential gains. I’ve done this by stressing the following points:

            —Caregiving is a choice: All caregivers need to appreciate that they’ve chosen to make sacrifices on behalf of a loved one for a variety of reasons and that they have the power to choose differently at any time.

            —Values inform choices: I ask caregivers, “Why do you choose to do all that you do for your loved one?” The responses I hear reflect complex personal and spiritual reasons—e.g., “I want to give back to someone who took good care of me”; “Because it is the right thing to do morally”; “Because God has put this task in my life’s path.” I want caregivers to identify these values underlying their choices and then to elevate them to “caregiver mission statements.”

            —See the forest, not the trees: When caregivers can keep the big picture in mind—i.e., how they may look back at this difficult phase in their life at some point in the future—then they are less likely to feel mired in the muck of day-to-day caregiving duties and are more likely to grasp the greater purpose they’re serving.

            These are just some of the strategies I use for promoting positive caregiving. Others include finding new means of keeping love alive; role-modeling for others, particularly children, about the meaning of marriage and family; testing one’s strengths and accepting one’s limitations. These approaches don’t work for every caregiver I treat, but help many to reap caregiving’s rewards.

            This shift in my psychological practice has been reflected in a similar shift in my writing. In 2006, my first caregiving book, The Emotional Survival Guide for Caregivers, presented means of reducing caregiver strain. In 2016, my second caregiving book (co-written with Julia L. Mayer, Psy.D.), AARP Meditations for Caregivers—Practical, Emotional and Spiritual Support for You and Your Family, presents nearly 150 stories of caregivers who have found the silver linings in their dark clouds. We tell the stories of many well spouses in this book, including those who overcame negative forces through accentuating whatever was positive during their caregiving years.

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