Last year, I wrote about Betsy who now has been the central caregiver during her 80-year-old husband’s six-year decline with “memory impairment.”  This past year has not been any easier. John has become less independent, and other problems with adult family and dear friends have weighed on her over the winter. She developed her own physical symptoms of fatigue, palpitations, chest pain and pressure.
“What? Am I overstressed?” she asked her geriatric nurse practitioner. Indeed. The pressure of being responsible 24/7 was telling in her body. This is one of the gravest concerns with long-term caregiving. The caregiver “burns out” or succumbs to his or her own illness.
“What can I do about that?” she cried. “It is what it is, and I am the one who is in the center of this circus.”
The GNP and her intern quietly and compassionately walked through a variety of options, all of which involved letting go of some responsibilities and getting help from some others. But most emphatically, they insisted that she needed to “get out of here.” She needed respite, and not just an hour or two away but at least a weekend to take care of herself and rediscover what she most loved doing. This should not be a visit with family where children might have expectations. This respite should be indulgent, entertaining and provide a focus on something she loved.
All’s well and good, but who was going to care for John?
“My local family have very demanding jobs and three very active children. They can’t do any more, and our friends are not young either. Ultimately, Betsy came up with a part-time caregiver who could come to the house twice a day: an hour or two to make sure the morning started OK with pills taken with breakfast, and again late in the afternoon to check on whether John had indeed eaten any lunch and to visit, as well as prepare a supper for him.
In March, Betsy and one of her long-time widowed friends took a long weekend to Richmond, where they dined and talked and visited gardens and historic sites that were among items on Betsy’s longtime to-do list.
“To be honest,” she reported, “I didn’t really stop worrying, but for the first time in years, I felt that I could make plans to look forward to something just for myself now that John cannot really appreciate such outings. I also got rid of several jobs in the community, less important to me now, and picked up my long lost love of knitting.  I cannot believe how much better life feels. And John apparently enjoyed his time caregiving our pets and entertaining ‘that strange woman.’ He has forgotten my absence already.“
If you or someone you know is getting edgy with caregiving, encourage “time out” and help them talk through support options available at the Alzheimer’s Walk and Education Fair on Oct. 6 at the Redmen’s Lodge.
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Peggy Cohn, BSN, MPH, Ph.D., is a retired geriatric-care manager with a background in public-health nursing and degrees in family studies and aging. The stories are drawn from local caregivers of folks with Alzheimer’s disease. All caregivers and their families are anonymous to protect their privacy and dignity.