Alzheimer's blog

Tips for caregivers to help lessen the guilt

By Angela Lunde November 12, 2013

Let me take this opportunity to thank Mary Ann Johnson from the Alzheimer's Association in Virginia and Barbara Labosky from the Northern Iowa Area Agency on Aging for inviting me to speak and be a part of their caregiver conferences earlier this month.

It was an honor to be in the presence of wonderful family and professional caregivers and I'm grateful to be a part of events where caregivers and persons living with dementia are offered the respect and support they undeniably deserve.

We've been on the topic of caregiver guilt these past couple of weeks and I sincerely appreciate each of you who offered some thoughts.

The unjust guilt some of you feel is often fueled by the demands of the role, the expectations of others, as well as the high expectations you often place on yourself. Although feeling guilty is normal, there are ways to move through the guilt and lessen its burden on your well-being.

  • First off, acknowledge your feelings. You can't ignore guilt or any other emotion. I like how Barry J. Jacobs, a psychologist and author of "The Emotional Survival Guide for Caregivers," put it when he said that it's normal to hate the caregiving but love the person you're caring for. There's nothing bad or wrong about feeling what you're feeling. In order to transform negative feelings, we first have to acknowledge them.
  • Reach out and talk to others. Sharing with others will help to normalize your feelings and experiences. Without a way to share struggles, including guilt, you can end up feeling worse or even sick. Talking with others who will listen and who really understand (often other caregivers) turns off toxic stress hormones and turns on relaxation responses that release healing hormones — it may be the most powerful antidote you have.
  • Pay attention to your inner dialogue. Note especially the ones that begin with, I should, I could, or I oughta. The conversations that go on in our head are often full of judgment, criticism and insecurities. Guilt results from an interface between the actual events in our life and what we say to ourselves. The same event can be interpreted as either, "I should have been able to keep my loved one at home longer", or "I can only do my best and remain loving."
  • Forgive yourself. This is part of that self-compassion thing we discussed in previous posts. Guilt is often the result of refusing to accept that some things are beyond our control and accepting that there are often no perfect solutions. The promise to keep a loved one with dementia living at home may have been made with the best intentions and hopes some time ago, but inherent in that commitment is the idea that you need to do what's best given all that you know now. No family or caregiver can plan for every situation or anticipate every challenge.
  • Be a good-enough caregiver. You want to believe you can do it all and be perfect, but that's simply not possible. Guilt arises out of high expectations so to accept being an average caregiver instead of a top performer will take the edge off those negative tendencies and invite a more balanced perspective.
  • Let go of the steering wheel. No matter what you do, you can't control your loved one's disease. You know this on some level, but the way you think, feel and respond sometimes contradicts this basic truth. Over time, many caregivers learn to let go of what they can't control, including not being able to "save" their loved one or make them better.
  • Finally, embrace happy guilt or no feeling guilt. Happy guilt is likely the result of doing something to ease your load and reclaim some life back. Linnie beautifully wrote on the blog, "That I don't feel guilty is out of character for me ... I don't even feel guilty about not feeling guilty. As I see it, I am not a perfect caregiver, but I do the best I can, and give my husband unconditional love and the best I have to give."

There has never been a need for you to be perfect caregivers — only caregivers who care. And for that I am giving each of you a perfect score.

Nov. 12, 2013