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Rosalynn Carter’s Diagnosis Is a Reminder: Caregivers Get Sick, Too

How other families can respond to a crisis — or head one off

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When the Carter Center announced in February that former President Jimmy Carter had entered hospice care, it noted that he had the support of his family and medical providers. Now we know that one key member of that team needs care herself: The center has announced that former first lady Rosalynn Carter has dementia.

For caregivers in other families, that news may serve as a crucial reminder: Caregivers get sick, too. They have heart attacks and strokes; they get cancer and dementia; they get sidelined by flu, COVID-19 and broken bones.

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Ideally, families have backup plans “B, C, D and E” to deal with those realities, says Crystal Polizzotti, director of the Family Caregiver Support Program at AgeSpan, a private, nonprofit agency in Massachusetts. Often, she says, they don’t.

That means a caregiver’s new diagnosis or developing health problems may focus a family anew or for the first time on building stronger supports, she and other experts say.

Here are some of their recommendations for families in that situation — and families who want to be prepared before a crisis arises.

Assess your village

Caregiving should never be a one-person job, says Ailene Gerhardt, a patient advocate in Brookline, Massachusetts. “Caregiving is extraordinarily stressful and impacts people’s health, even when they are doing just fine,” she says. So it’s essential to ask for help and to divide up tasks. Someone can deal with insurers and hospitals; someone else can buy groceries and pick up prescriptions. Even a family member who lives far away can log onto a loved one’s telemedicine visit, says Lisa Winstel, interim chief executive officer at the Caregiver Action Network. (It’s legal, she says, if the patient consents.) And helpers can, and often must, come from outside the family, Gerhardt says.

Learn about community resources

There may be more help than you think, at little or no cost to you, within your community, Polizzotti says. Your area agency on aging (AAA) can connect you with services such as health aides, housekeeping help, meals assistance and caregiver support groups, she says. (Her employer, AgeSpan, is an AAA.) Faith groups and chapters of advocacy groups such as the American Cancer Society and the Alzheimer’s Association can also provide leads, Gerhardt says. Veterans can get help from the Department of Veterans Affairs, she adds. Your medical team, including doctors, nurses and hospital social workers, also can make referrals, the experts say.

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Set up a command center

Every caregiving household should have a single place, such as a binder kept on a kitchen counter, for essential information such as medication lists, provider contacts and outlines of daily routines, says Jennifer Crowley, a registered nurse and life care planner in Kalispell, Montana. Ideally, she says, medications and other daily supplies are kept in the same area.

Update your paperwork

If the primary caregiver is listed as a health care and financial decision-maker on official documents, make sure those documents also list people who can take over those duties if needed, Polizzotti says. She suggests consulting an elder law attorney. Many older people qualify for free services, she says. Also, make sure others on your caregiving team have access to crucial online accounts and passwords, Winstel says.

Take care of yourself

“Caregivers notoriously forget to take care of themselves,” Winstel says, worsening existing health problems and missing chances to prevent new ones. So, she says, “Don’t forget your flu shot. Get your mammogram. … Don’t deprioritize your own health.”

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