The Stress of Family Caregiving

Ever hear of the sandwich generation? This phrase came into vogue in the ‘70s and ‘80s when parents of “war babies” and the baby-boom generation approached retirement age. Their kids began to feel “sandwiched” between two sets of responsibilities: (1) taking care of their own children, careers, and marriages, and (2) taking care of mom and dad as they began to need help navigating the physical, medical, financial, and psychological demands of being old. Pressures on the sandwich generation began to ease as they grew older: their children reached adulthood and became more independent, and their parents eventually died. However, these changes were often replaced by a new source of stress: many had siblings who were now reaching old age, and who often needed support from healthier and more financially-secure siblings.

Being a family caregiver is a challenging role and few people are trained to manage it. From a psychological perspective, the first important step in meeting the challenge is to accept your emotions because they are normal and expected: Anxiety. Can I do this? Will I get support from the rest of the family? Will it require financial support on my part? Anger. I’m angry and resentful for being put in this situation. I’m irritated that other family members don’t support my efforts. Grief. I’m going to lose someone I value.

The second step is getting help from your spouse or an adult child who may live with you. I remember Harry, 68, whose 90-year-old mother was in her final stages of life. He could not bear the thought of putting her in an institution, and he said to Sophie, his wife of 38 years, “I want to move her into the house. We can put a hospital bed in the den and give her a comfortable, final few weeks of life.” Sophie, 67, had recently joined Harry in retirement, and she had been looking forward to several years of a good retired life with him. She envisioned occasional trips to visit their kids and grandchildren, and fun travel for just the two of them. Now Harry wanted to burden them in this way? She loved her mother-in-law, but this was unfair. Sophie was not happy.

Harry was really stressed. He was concerned for his mother’s well-being in her final days, and he knew he was asking a lot of Sophie. So, before discussing the issue further with her, he did some preparation and put it all in writing: He made a detailed list of his mother’s caregiving needs, and pledged to be the one responsible for providing them; he designed a schedule that would minimally disrupt his and Sophie’s lives; he listed areas collateral to her direct care (such as, organization of financial statements, financial planning of mom’s assets, use of online tax packages) in which Sophie had professional skills and could be a big help; mom’s doctors said she was expected to live for about 2 months, and Harry included a promise that if she was still alive after 4 months, he would put her in an institution. He then set aside a specific time to discuss the situation with Sophie uninterrupted, to make sure she understood what he was proposing. Sophie reluctantly agreed to the arrangement. Turned out that mom lived for another 22 months, although Sophie never held Harry to the 4-month deadline.

Harry and Sophie’s outcome may not be typical, but that’s not really the point. Caring for a loved one – either directly as primary caregiver like Harry, or indirectly as a secondary caregiver like Sophie – is stressful, and like any other stress, it can best be handled by following our four coping rules: Acceptance, Accountability, Humility, and Empathy. Both Harry and Sophie accepted the reality of Harry’s mom’s condition; Harry decided to be accountable as primary caregiver, and to do his best to respect Sophie’s reservations; Sophie agreed to be accountable for secondary responsibilities; both of them agreed that their individual needs and wishes would not supplant those of their larger family bond; finally, both of them worked to put themselves in each other’s shoes and see things from the other’s perspective. No real rocket science here, folks; this is how coping successfully with stress works.

Reducing stress in a caregiving context also requires that caregivers remember their own needs. If you are in this situation, as much as possible follow a schedule and stick to your routine, including time to relax. Continue with activities that are enjoyable and important to you, especially those that involve you and your spouse. Stay connected to the one you are caring for, and you will be able to explain and remind them of your needs. Keep your social network active so you can talk with others regularly about your frustrations…and joys. Writing helps many organize their thoughts and feelings, so consider keeping a daily journal not only about activities pertaining to your caring efforts, but also your feelings. Stay vigilant for signs of depression, anxiety, or burnout, and seek professional help if needed. Keep up with your own health care. Finally, keep reminding your spouse and other helpers how much you appreciate and need their efforts. Give them a sense of ownership in the caregiving plan.

I know many people who care for an elderly spouse or sibling. It is quite clear that while they admit to the hardships and sacrifices that are involved, they also experience incredible rewards that bring them satisfaction and a sense of purpose. As Sophie said to me one day, “It’s tough having Harry’s mom here, bedridden, and needing 24-7 care. But we still live our lives and it gives Harry a sense of peace. It’s an unexpected blessing.”

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