There are so many books and websites offering help to caregivers that you can get overwhelmed by all there is to learn and do. But sometimes what matters most are the insights that come from just doing the job. Here, a few real-life rules of caregiving.
1. It’s okay to push.
“I struggled with how much to respect Marjorie’s rather stubborn nature and how much to say, ‘No, we’ve got to make a change,’” says Phil Baer, who helped care for his sister, Marjorie, after her brain cancer diagnosis. “She would take a fall and just wave it off. But one of her doctors took me aside and said, ‘Look, she’s really got to have someone with her at all times.’ And that’s when we brought in some very fine helpers.”
2. Don’t take it personally.
Illnesses such as stroke and Alzheimer’s disease can cause upsetting personality changes, says Susan Morris, whose father had a stroke. “I thought he was angry with me,” she says, “but I came to realize it was partly because of physiological changes. And that he wasn’t really angry at me but at the situation in general—and who can blame him? But he’s a grown man, and it was up to him to come to terms with it.”
3. It’s easy to over-share.
Online “care pages” at sites like caringbridge.org make it simple to update friends and distant family on a loved one’s condition, but you can find yourself getting into details your loved one might prefer to keep private. “Some people sent mass e-mails about personal aspects of Marjorie’s care that didn’t need to go to everyone,” says Ruth Henrich, part of Marjorie Baer’s network of friends. You can set up different e-mail groups on these pages if you want some messages to go only to caregivers.
4. Protect, but not too much.
“When Muhammad first started going to a gym for physical therapy [for his Parkinson’s disease], people wanted to be accommodating, so they put him in a separate area where he could have privacy,” says Lonnie Ali, wife of the boxing legend. “Muhammad got bored out of his mind! We ended up putting him in with the public so he could show off what he could do.”
5. Love goes through changes.
If a parent with dementia no longer acts like the person you knew, your feelings are likely to change. This can actually help you cope, says Julie Winokur, whose father, Herbie, had dementia. “I think you let go of your parents in small increments as they slowly disappear,” she says. “Creating some distance is a matter of self-preservation.”
6. Divvy up the work.
If you’re a hands-on caregiver, your distant siblings can find lots of ways to chip in—especially if you ask. “My sister helps with our parents’ costs,” Morris says. “And I delegate all the caregiving to her when she visits—she’ll even buy groceries and cook a meal for my family. I’m really able to get a break.”