Dementia Today is a pretty darn good blog side for folks in our industry – and for families – to check out now and then. In a recent posting, they talk about some research out of the Mayo Clinic, involving issues of guilt felt by caregivers caring for folks with dementia. The gist of the research is that such caregivers are carrying around a whole lot of guilt that they should not feel. Of course, “should” and “should not” are the two most useless examples of advice in the history of humankind. We should not use them! 🙂
The fact is, what we feel, as caregivers, is real. The old cliche that “Perception is reality” is all too true about this issue. Here are some of the types of guilt that dementia caregivers are carrying around:
- 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.
Some of these issues hold great value as teachable moments for all of us. The very first one is a great example. How many families have just wanted (or told) Mom or Dad to just act normal, and then learned that it was Alzheimer’s or Vascular Dementia or Dementia with Lewy Bodies that was the real issue – and that Mom or Dad was never again going to be the same person who raised them.
Every family needs to study the aging experience, including the issues of dementia and other diseases associated with unhealthy aging. Preparation is vital.
In the meantime, families facing the issues of caring for a dementia sufferer need to move beyond wishing and guilt to getting support and taking action. We at Support For Home and other high quality, high integrity elder care agencies can be a big help in that effort.
Your experiences are welcome.
Best wishes. Bert