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Below are answers from Barry J. Jacobs, a member of the AARP Caregiving Advisory Panel, to questions submitted by visitors to the Caregiving Resource Center. This page will continue to be updated with new questions and answers. Have a query or conundrum? Ask the AARP Caregiving Advisory Panel.
Q: I am the primary caregiver for my mom. How do I get my family and my siblings to understand that their lack of involvement is putting a great deal of weight and stress on me? I'm depressed and don't have time for myself. What can I do?
A: In the vast majority of caregiving families, unfortunately, the brunt of the caregiving falls on one dedicated person's shoulders. That doesn't mean, however, that the arrangement is fair or ultimately effective. Too much stress over too much time will lead the primary caregiver to burn out and become unable to continue. That will increase the chances that the care recipient eventually will have to go into a nursing home.
To avoid that situation in your own family, I'd suggest the following steps:
1. Write a letter to those family members whose help you'd like. (In this era of emails and texting, a handwritten letter will come as a surprise and therefore grab their attention.) Tell them how gratifying it has been for you to take care of your mother but also how tired you've become. Ask each family member to take on a small, discrete task for Mom — e.g., driving to the doctor's office, paying for putting handrails in the shower. Be specific; a more general cry for help is easier to ignore.
2. Whenever family members complete tasks, praise them generously. Have Mom give thanks as well. That will increase the likelihood that they'll come through again.
3. In the future, share more information about your mother — and decision-making power — with your family members. If they feel more invested in Mom's condition, then they'll step up on their own to become full-fledged members of your family caregiving team.
Q: I feel guilty when I leave my mother alone, but I'm trying to have a life too. How do I deal with the guilt?
A: Guilt is a cul-de-sac. You go nowhere but round and round in your own torment. It's crucial, instead, to remind yourself that taking the time to have your own life replenishes your energies to better care for your mother. Staying with her constantly would likely have the opposite effect — sapping you slowly to the point that you have little more to give. It's therefore in her best interests that you go out — as well as eat and sleep well and have regular medical checkups — in order for you to be happy, healthy and available for her over the long haul.
Q: My mother needs round-the-clock care. I live on the East Coast and my sisters live in the Midwest. We often disagree on what's best for mother. We all love her, but our differences are pulling us apart. Any suggestions?
A: Long-distance caregivers, such as your sisters, often try to make up in assertiveness what they lack in geographic proximity. That can be bracing — and sometimes annoying — for the caregivers who are on the front line. I suggest the following steps:
- First, tell your sisters that you appreciate their frequent input because it shows how much they care. Remind them that you love them.
- Tell them that it is in Mom's best interests that you all work together to pull in the same direction and that it is necessary for you to have similar views of Mom's condition and needs. Share all medical notes — e.g., doctors' reports, discharge summaries — with them so that you are all working from the same information. Set up a conference call with your mother's doctor if there are still disagreements about her situation.
- Remind them that teams work most effectively when players have defined roles that complement each other. Divvy up the care tasks that can be done from a distance — for example, paying bills — and those that require hands-on involvement.
- Invite them to visit often to get a closer view of Mom to better inform their opinions and perspectives.
- Don't let caregiving consume your sisterly relationships. Remember birthdays. Ask your siblings about their other family relationships (e.g., husbands, children). Try to have fun together. It will create greater good will for the hard but honorable work of caring for Mom.
Barry J. Jacobs is a clinical psychologist, family therapist and the author of the book The Emotional Survival Guide for Caregivers — Looking After Yourself and Your Family While Helping an Aging Parent (Guilford, 2006).