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.
Not all the issues that deliver surprises are related to old age or frailty, either. A caregiver may face unexpected financial issues, such as how to pay for long-term care or manage ordinary bills on a regular basis. You have to know about legal documents that will let you take over if your parent can't keep up and the value of having someone else on a bank account. When you take on a parent's finances, safeguards should be in place for everyone involved, Morris said.
Scammers specifically try to defraud the elderly, so you may need vigilance, too.
But the trickiest issues are those of the heart. Morris had a close and loving relationship with both of her parents. For those providing care who are not bolstered by good relationships with parents and siblings, it may feel different.
Morris' husband joked that the book should be called "Be Nice, You're Next." It's facetious, but there's truth to it.
"That's part of the emotion of all this," Morris said. Illness also raises questions about whether one's inheritance includes not just mementos but also troublesome genetics. "When you have parents who are frail, you can't help thinking, 'Is this what's going to happen to me?’ ”
Do as I say
Morris gives advice she had trouble following.
"I tell people all the time to take a deep breath, get others involved and let go of the reins," said the former journalist.
She became interested in grief and how different it is for the primary caregiver than for others. Caregivers can suffer post-traumatic stress, she said. "Caregivers are so used to being in a state of anxiety." She remembers nightmares where her mom was in the hospital and not getting the IVs she needed. The "hunt" for a nurse would awaken her.
The most important thing to realize, Morris said, is that sometimes you both must step off the treadmill. "You get so focused on the practical that you can forget this is a person with needs that go well beyond the medical, and those needs are probably more important," Morris said.
Just "doing" and "caring" aren't the whole job. Communication is a must, not only for better care but also to ward off loneliness — a major problem for the elderly, particularly those who are frail.
Sociologist Pepper Schwartz of the University of Washington in Seattle said those who are unhealthy face a particularly great risk that isn't always solved just because someone's willing to be their caregiver. Some older people living with adult children are painfully lonely.
“They look like they are taken care of and, physically, they are," Schwartz said. "But they are not getting the interaction and stimulation they need."
You can add energy for interactions to the list of resources that may be limited. The elderly person may get little more than a "Hi, Mom, you doing OK?" It's not enough.
But caregiving is often exhausting. Far-away siblings come in to visit, and the frail parent wants everything perfect for that "guest." It falls to the caregiver to make it happen — juggling and cleaning and getting Mom or Dad ready. There's a bite to hearing, "I came to see Mom and had such a lovely time," because it's likely the caregiver didn't have a lovely time making it happen. Caregiving, while often rewarding, can be very hard work, Morris said.
"My parent needs to (blank) and he won't" is how the most common question Morris is asked begins. The blank may be "stop climbing the ladder," "move out of the house" or "give up driving."
"I think a lot of this job is finding that balance between safety and your needs and worries," Morris said. "Unless the parent has dementia or is being exploited or is driving and someone else's life is at stake, there's only so much you can do.
"Listen to their reasons that go against your wishes and discuss the risks and options, but really hear them out. You may think it's not safe and the reason's not sound, but you have to respect their rights, too."
Caring for mentally competent parents is not about exerting your own control, but about helping them control their own lives as much as possible, Morris said. "You are not parenting your parent."
On her website, careforagingparents.org, Morris offers sample chapters and free downloadable forms to help caregivers get organized and figure out the nuts and bolts of caregiving.
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