Some moments stay with you. For Virginia Morris, this was one.
Morris was standing by her mother's bed. The elderly woman had become frail because of a longtime lung disease, compounded by other serious health issues. She needed practical help: someone to handle her mail, organize doctor appointments and medications, and make sure she was bathed. Morris was that someone, her mother's primary caregiver.
Some 43.5 million Americans currently tackle the responsibility of regular caregiving for a frail older relative or friend, according to the National Alliance for Caregiving.
Morris smiled at her mom, and her words surprised both of them. "Scooch over," she said, settling on the mattress and linking their arms. For 75 minutes, they immersed themselves in "An American in Paris," playing it on her iPad. Her mom was delighted by Gene Kelly's antics. Morris was taken by their reflection, heads together, leaning companionably into each other, both briefly stress-free. She treasures the memory.
Morris knows how hard it is for caregivers trying to juggle the demands of their work lives and other family responsibilities with the need to care for a frail or disabled older relative. She not only lived it but also wrote the book on it.
Morris' "How to Care for Aging Parents" just came out in its third edition, updated and expanded (see accompanying review).
Tasks are particularly complex for the 14.9 million American adults who are primary caregivers to someone who has Alzheimer's disease or another dementia. Communication and behavioral challenges can compound the complexity of providing care.
Learn as you go
When Morris decided to write the guide, no survey could tell her what was helpful and what wasn't to those who were gingerly feeling their way through how to care for loved ones. She talked to experts and caregivers, learning from them and reaching conclusions about what people long to know, Morris said in a telephone interview.
"I think what people need is reassurance and emotional support," she said. "Caregivers — and women are particularly guilty of this — feel they have to do everything just right when they're dealing with all the different things that come into their lives. And it's your parents, so you feel like you really need to do everything just right. But it doesn't matter how fast you run or how high you jump, eventually you're going to lose them. Caregivers worry constantly, feel like they're not doing enough and there's a lot of grief in the background."
It's a draining job, she said, whether you live with the parent who needs care or you live several hours away and are trying to juggle care tasks from a distance.
A doctor friend told Morris he can't relax when he's on call, though he seldom actually gets called in. Mentally, he's on edge, prepared for it to happen. Caregiving is like that, Morris said. A caregiver waits for the next phone call or crisis.
She tells caregivers to back away at times. "There are limits on what you can do for your parents — you can't turn their lives around — and for you and what you have to offer," she said. "So take a deep breath, set priorities and accept that."
Her mother had various illnesses over a long period of time. Whenever Morris thought she had everything figured out, something changed. Complications kept piling up. Looking back, Morris said her shoulders were up around her ears for 15 years because of the stress, but she did not, thankfully, realize it at the time.
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