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Planning Ahead

How to pave the road for long-term caregiving

by Linda Rao

QUESTION:

My mother has vowed to care for my father, who has Parkinson’s, but I’m not sure she understands all that it will involve. How can I explain to her what she’ll need to care for him over the long haul?

ANSWER:

Your mother may not be ready to listen to you at this point. “People start the process of caring for a loved one with an emotional commitment, because it’s hard for them to fully comprehend the nuts and bolts of caregiving at the beginning,” says psychologist Barry Jacobs, PsyD, author of The Emotional Survival Guide for Caregivers.
They’re usually determined to look after their loved ones no matter what. “They won’t be deterred, and they hunker down and refuse to listen to anyone trying to tell them to do things differently,” Dr. Jacobs says. “Some people think ‘doing it differently’ is tantamount to failing, so they become rigid and adhere to certain ideas, which wears them down.” That kind of stoic rigidity doesn’t work in the long run.

Caregiving is a marathon, not a sprint, says Dr. Jacobs, so caregivers need to ask for and accept help along the way—even early on. “Marathoners don’t refuse a drink of water at mile 2 because they aren’t thirsty,” he says. “They’ll never make it to mile 15 or 20 if they aren’t drinking water all along the way. If people viewed caregiving the same way, they wouldn’t wait until they got really tired before accepting help.”

You can assist your mother, now, by following these suggestions:

Try not to give advice. “Instead, ask her why she’s choosing to care for your father,” suggests Dr. Jacobs. “Usually, people have very complex and personal reasons to explain the decisions they’re making.” Don’t argue with her. Even if you don’t agree with her reasoning, you won’t be able to talk her out of it, and if you try, you may damage your relationship.

Devise a plan. Once your mother knows you understand her motives and feelings, she may be more willing to accept help. “Then she, along with you and your siblings and a case manager or geriatric care manager, can help create a plan so she can pace herself over time,” says Dr. Jacobs. (To locate a case or geriatric care manager, see “To Learn More” on previous page.)

Avoid judging. Caretakers are often afraid to take a break—or even consider another alternative—because they think other family members won’t approve. “You could say, ‘I know you care for Dad, and I don’t think you’d be shirking your duties if you sent him to an adult daycare center. In fact, I think the extra help will enable you to help look after Dad for as long as he needs you,’ ” suggests Dr. Jacobs.

Learn about the illness. “No one has a crystal ball predicting what the next few years will hold, but you can get a general idea of what the typical course of the illness is,” says Dr. Jacobs. This will help both you and your mother understand that tough times may be ahead and that neither of you may be up to the task of caring for your father.

Understand that caregiving isn’t confined to home. You can also let your mother know that her commitment to caring for your father in sickness and in health doesn’t mean she can’t choose another living option. “Even when you place a loved one in an assisted care facility, you don’t stop caregiving,” Dr. Jacobs says. “You’ve just chosen a living environment that may be better able to provide extra care. But you still visit regularly, you’re still emotionally invested, and
you’re still supporting your loved one, even if he’s no longer at home.”

Learn about the resources available to provide help. Home health aides, respite care, and adult daycare are just a few of the services available to caregivers. “You can help your mother learn when those services might come in handy to help both of your parents,” says Dr. Jacobs

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