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Carol Bradley Bursack, Published March 15 2014

Minding our Elders: Forgive yourself; all caregivers will make mistakes

DEAR CAROL: I’ve read much of your work about not arguing with people who have dementia, but I have a hard time following through. Yesterday, my mother who has middle to late-stage Alzheimer’s, was complaining about something that happened years ago and I got really angry. I know she couldn’t help it and now I feel ashamed. How do I pretend to agree with her when what she’s telling me is so disturbing? – Kathleen

DEAR KATHLEEN: Feeling shame would suggest that you deliberately did something to make your mother feel bad, and even then that’s a strong word. Remind yourself that you’re doing your best to handle a very challenging situation and that you won’t always do everything right. You’ll have days when your patience is stretched thin and it will be difficult to cope at all.

Validating the transient feelings and remarks of a person with dementia can be particularly challenging in a situation where their current reality is upsetting. This takes a different approach than agreeing with your loved one about something that doesn’t really matter.

During one of my dad’s worst times, someone in the nursing home had turned a TV program on for him and then forgotten to turn it off before the network news. Dad saw war footage on TV and was in a horrible state when I visited him that day. He told me that there was a war outside his window and he was terrified. I still remember him saying, “They’ll come and get me. You know what they do to old people!” Dad was a World War II veteran, so his fear was understandable since the news footage was as real to him as was my standing next to him.

I tried to convince him that this war was a distant war and just on television news but he insisted that it was here. All I could do was hold his hand, ask him to tell me about his fears and say that I would protect him. Even then, I couldn’t completely convince him enough so that he could truly relax.

I’m writing about this, Kathleen, because I want you and others to know that there is no way we can always succeed in providing the comfort we aim for. We can practice validation, which in most cases is effective, but some things you simply can’t validate. We can distract and redirect, but sometimes our loved ones are too upset to respond. Then, about all that’s left is to listen and try to help our loved one through the misery. Knowing that “this too shall pass” helps the caregiver, but the care receiver is generally in the moment and can no longer understand this concept. This can frustrate the caregiver even when there is deep sympathy.

There is no shame in not responding perfectly in every situation. You are doing the proper thing by trying to learn more about your mother’s disease and how to cope with these frustrating and sometimes frightening times. You’re a good caregiver because you strive to learn. You’ve likely learned from your angry episode and will cope better with the next challenge.

Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com. She can be reached at carolbursack@msn.com.