Unfortunately, guilt is a common and persistent emotion for many, if not most family caregivers, even when they are literally devoting their lives to doing everything they can for the loved one they are caring for. And that caregiver guilt can continue even after a loved one dies. A friend of mine, who lost her mother to Alzheimer’s early in 2019, advised me, “I still struggle with guilt from what I didn’t do for my Mom and Dad. It’s a long list. It’s painful. Be kind to yourself.”
Sometimes guilt comes from what we did and how we did it. Sometimes it’s more like survivor guilt from being able to function physically and/or cognitively in ways that our loved one no longer can. As my husband moves through early-stage Alzheimer’s, I feel guilt for not being patient enough, kind enough, understanding enough of him and what he’s going through. When a loved one is in the early stages of needing our help, no matter what the reason, it’s often hard for us and them to know when help is needed and how to come up with a plan that is acceptable to everyone.
“Don’t aim for guilt-free caregiving,” Barry J. Jacobs advises in an AARP article, Caregivers: Living With Guilt, “The feeling that we should do more and better for one another seems to be built into our species as a group survival mechanism. Guilt is part of who we are. So that discrepancy between what you think you should do and what you’re willing and able to do may always cause some guilt. Let’s accept that as a given, then, and work on tempering the feeling.”
Jacob’s article focuses on how to come to terms with feelings of caregiver guilt, and instead feel more pride for being the hard-working, well-meaning caregivers we really are. He gives four tips on how to do it:
- Give up the fantasy of rescuing others by creating realistic goals.
- Maintain balance by taking breaks from caregiving.
- Tolerate ambivalence between wanting to be perfect and still being human.
- Find other motivations than guilt for our actions.
Recognize and accept unrealistic expectations. Not only can we have unrealistic expectations of ourselves, but our loved one might want us to devote more time to their care than our situation allows. For example, if we work full time, still have children at home or do not live close by, our only option might be to bring in some outside help. If Mom says, “But I want you to take care of me!” even more guilt can overwhelm us.
A family caregiver’s ultimate responsibility is to ensure that their loved one is well cared for, even if it’s not in the exact way they prefer. If other family members can join the caregiving team, a caregiving plan tailored to all family members’ needs may be possible. Even friends and neighbors can be involved. A free in-home evaluation by an RN from Dakota Home Care can make you aware of other resources that can fill the gaps.
“Take care of yourself” may be the last thing a guilt-ridden caregiver wants to hear. Maybe what you really need to think about is “How do I take care of my guilt?” One way might be to lower your expectations of yourself and others. Talking about it with other caregivers could help you to put your situation into perspective. Caregiver support groups are probably available in your area. Even having lunch with a friend who has gone through a similar experience can help you to feel better about yourself. Sometimes just an hour or two of respite care for your loved one can give you a more positive outlook.
It’s never true that your own needs are insignificant compared to the needs of the person you are caring for. First you need to recognize the unmet needs that are causing your emotional pain. Needs are not bad or good, but they are real. Acting on ways to meet your needs can make you a better caregiver long-term. Check out some other tips on how to take care of yourself in this Dakota Home Care blog.
Forgive yourself for your imperfections. Remember that guilt is a typical feeling for caregivers. The chances are good that you never will do it all so well that everyone is happy, including yourself. Your guilt may be minimal or it may be immobilizing, but try to find ways to move forward and leave it behind. Doing the best that you can with the resources you have has to be good enough.
You don’t have to do it all alone. Dakota Home Care offers in-home services in Fargo, Bismarck, Mandan, and nearby areas for home assistance tailored to your caregiving needs. They include someone to help with personal care, housekeeping, shopping, companionship and preparing meals. If skilled nursing care is required, an RN can be part of your caregiving team. To have a chance to leave home for a while, our respite care in Fargo, ND (or in our other services areas) may be all you need. Call 701.663.5373 today to make an appointment for your free, in-home evaluation to see how in home care can help your family.