Dec 23, 2013

10 Mistakes I Made While Visiting “My Ladies” With Dementia

I learned that knowing what to do and actually doing it can be two very different things.

By Marie Marley
+Alzheimer's Reading Room

Since I retired last April I have been volunteering to visit three ladies with dementia at a local memory care facility.

At first I hesitated to do this because I thought it would be depressing and remind me of my Ed, who passed away seven years ago. But it hasn’t been depressing at all except a little bit the first time.

I also thought I would feel devastated if any of them died. Well, two have died so far. I am very sad that they passed away but I can’t honestly say I’m devastated.

I have always heard people say that when doing this kind of volunteer work you receive far more than you give. I never believed them.

But I have to tell you that in my case it has been very true. No matter what mood I’m in when I arrive I always feel better when I leave.


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Knowing of my interest in, and numerous publications about, Alzheimer’ caregiving, both the facility administration and I thought it would be a snap. I would be the supreme visitor. (I’ve even published an article about visiting people with Alzheimer’s.)

I’m embarrassed to say, however, that I’ve made many mistakes over the months. In fact, I’d say I deserve an “F” in visiting.

I knew better than to do any of these things.

I learned that knowing what to do and actually doing it can be two very different things.

I’m going to put the list here, hoping it may be of help to others.
  1. I didn’t think to explain to any of the ladies who I was and why I was there. Two were alert and curious enough to ask me. The third just seemed sort of confused about my presence.
  2. I gave Nancy (not her real name) three instructions in one sentence. When I told her I was there to visit with her, she asked me how we went about that. I said, “First we go down to your room, then we sit down, and then we visit a while.” (No wonder she didn’t want to visit with me!)
  3. While we were walking to Nancy’s room I talked to her from behind, a clear “no no".
  4. I didn’t observe that Nancy was getting seriously agitated when I played music for her and I didn’t stop playing it, as I should have.
  5. I have asked each of the three at least once if they remember some specific person or event. That only confuses them and makes them feel bad if they can’t remember.
  6. I corrected Carolyn when she told me she didn’t have a daughter. She had previously told me about her daughter, so I reminded her of that. She was needlessly embarrassed.
  7. I consistently forget to address them frequently using their names. Using their names would help us develop a bond.
  8. One day when I went to see Carolyn she already had another visitor. That woman told me to come in and I did. Carolyn became confused and I didn’t have the sense to leave and go back later. I should have left immediately when I saw how confused she was.
  9. I just assumed that Ruth didn’t remember anything from our last visit, when I had given her a photograph of a rose. When I arrived the following Thursday I picked up that photograph and asked her where she got it. She looked a little annoyed and said that I had given it to her. Never more will I assume any person with Alzheimer’s doesn’t remember some specific event!
  10. Finally, when Ruth asked me about her husband I made the mistake of telling her he had passed away, rather than using the generally agreed upon approach of telling a white lie and making up some reason he was temporarily gone.
Well – there you have it.

Talk about being embarrassed. I certainly am. But at least I know the mistakes I’ve made and am avoiding them now.

Does anyone out there know of other mistakes they may have made?

*Marie Marley, PhD, is the award award winning author of, Come Back Early Today: A Story of Love, Alzheimer’s and Joy. You can visit Marie’s website which has a wealth of advice for Alzheimer’s caregivers at ComeBackEarlyToday.

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