Alzheimer's blog

Undeserved guilt often trips up dementia caregivers

By Angela Lunde October 29, 2013

It's astonishing how often the topic of guilt bubbles up with caregivers. Many of you wrote about caregiver guilt in recent weeks. Karen said, "I suspect there are many of us caregivers or former caregivers out there struggling with how to handle the guilt."

We probably think of guilt as something unpleasant that we would prefer to avoid. Guilt is a complex emotion, and yet, part of the human experience.

We may not recognize guilt in ourselves because doing so sometimes requires that we admit we were wrong and capable of hurting someone else. Yet, if we are callous, insensitive or impatient, we probably should feel a sense of guilt.

If we owe someone an apology, feeling guilty may push us to do just that. So, guilt can align our moral compass and help us to examine our behavior and make a change, and that's not such a bad thing.

However, much of the guilt caregivers feel is undeserved, with no constructive basis, and can in fact be destructive. The unjust guilt caregivers feel is often fueled by the demands of the role, the expectations of others, as well as the expectations of their toughest critic — themselves.

And it seems there's plenty for caregivers to feel guilty about:

  • Guilt over realizing how they treated or judged the person with dementia before knowing what was going on (before diagnosis)
  • Guilt that somehow they are not caregiving as well as they should, or that others do a better job
  • Guilt over feeling resentful, trapped, unloving, or a host of other negative thoughts
  • Guilt for wanting time for themselves, for using respite care so they can have a break
  • Guilt for doing things without their loved one that they once enjoyed together
  • Guilt for not visiting enough
  • Guilt for wishing it was over
  • And there's at least one more I must mention, caregivers may feel guilty for not feeling guilty.

There you have it, there's even happiness guilt — when caregivers feel bad about feeling good or when caregivers feel guilty for not feeling guilty.

That's what Carol, a wife and caregiver, shared with me last week after she moved her loved one to a new care home. She had no guilt and for that she felt ... well, guilty. It's a strange paradox that having positive feelings should be yet another source of self-punishment.

Like so much about caregiving, many things are outside of your control and there are generally no easy solutions. In my next posting, I'll offer my ideas about managing caregiver guilt.

Meanwhile, please offer your thoughts and experiences. Rest assured, if you'd rather not, don't worry — no need for guilt here.

Oct. 29, 2013