Every day, Linda Snyder goes to her mother’s house in rural Pennsylvania, gets her out of bed, gives her breakfast and dresses her. Every night, she returns to put her to bed. Sometimes, when Snyder arrives, her mother will greet her with, “‘Oh, it’s you again.’ That doesn’t help,” says Snyder. Her mother, now 91, tried moving in with her briefly after a stroke two years ago, but it didn’t work out.
This arrangement isn’t working, either. Recently, Snyder, 58, found her mother on the bathroom floor. “I’m pretty much at the breaking point. I can’t do this anymore,” says Snyder. She wants her to go to a nursing home where she will get full-time care, but her siblings, who don’t live nearby, “aren’t on the same page,” she notes. Michelle, one of Snyder’s five daughters, says “it’s such a struggle for my sisters and me to watch this unfold.”
Snyder admits that being the primary caregiver has made her feel anxious, depressed and guilty. She is torn between her mother and her family. One daughter in another state is about to have a baby and wants her to come stay. “Who is going to take care of Grandma?” Snyder asks. There is part-time, but not nearly enough, hired help.
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Like Snyder, adult children may realize they need to make a change regarding family caregiving. Rather than being selfish or uncaring, they are finding the situation untenable and are saying “enough.” It may affect their finances, health or other relationships. It may be too hard emotionally or physically.
“Other people don’t always like or understand our decisions,” says Steven Zarit, a professor in the Department of Human Development and Family Studies at Pennsylvania State University who has run caregiving support groups. “We all have limits on what we are able to do and if we have done the best we can and can’t go on, we shouldn’t feel guilty.
When you’ve decided that you can’t continue caregiving — or in the way you have before — how do you break it to the family, prepare for a changing of the guard and handle your own feelings?
Here is what experts suggest:1. Prepare to Reframe the Decision
“Rather than an either/or decision, I encourage [caregivers] to think of it as, ‘I’ve been providing care in one way, and now I need to provide it in another way.’ It doesn’t mean you have to stop,” says geropsychologist Sara Honn Qualls, director of the Gerontology Center at the University of Colorado, Colorado Springs.2. Prepare For Your Discussion With Family
This can be tricky. Your decision to not be the caregiver, or to be a different kind of caregiver, will probably impact others. They may resent it. Will they now have to step up more than they had planned? Will they need to put more time into finding alternatives? At the very least, it is going to change the status quo.
Qualls finds it effective when she holds family meetings to ask, “What is most important to you about your mother’s life from today until the day she dies?” That can focus others on the issue — their mom — rather than siblings’ perceived shortcomings. It is also an opportunity to brainstorm and collaborate.
When you explain that you can’t keep up caregiving as it has been, it’s best to let siblings know that you are not telling them what to do, “but here are my thoughts.” It’s helpful to consider options before the family get-together. Also, seek ideas from them.
If the discussion gets heated, rather than argue, tell family members you have done the best you can — and really believe it. Change is hard for everyone. If there’s pushback, stay calm. You might say, “Maybe I could have done this or that but I have truly reached the end of the line and I can’t do it anymore.” If it’s realistic, tell them they are welcome to take over.
For some families, it makes sense to find a neutral, third party with clinical training to run, or at least attend, the meeting. That might be a care manager, or a family therapist.3. Remember to Acknowledge Your Feelings
Do you think people are judging you for not being a good enough daughter, parent or sibling or for abandoning the original caregiving plan? Do you believe that yourself, too? Do you feel someone else could have done it, “what’s wrong with me?” Or, that you are supposed to be able to handle it and should just suck it up? If so, try to have self-compassion and be kind to yourself.
Having a way to deal with your emotions (see a therapist, join an in-person or online support group or forum) will help you see that you are only human — and to remember your mantra, “I have done the best I can.”