May 27, 2010

Cindy Wonders If Others Experienced Similar Behaviors?

I started thinking about the subtle difference between memory and behavior in Alzheimer's patients about two months ago. This happened because Dotty was starting to act in a way that I could never have expected or envisioned.

For the longest time, I really wasn't thinking about Dotty's memory. It was worsening and I had accepted this as the normal and usual course of events.

When Dotty started talking to me about the newspaper and giving me that little Dotty smile back every time I smiled at her, I really thought to myself, I would take this over memory improvement every time. I mean Dotty seemed genuinely happy day after day for the first time in ten years. -- Bob DeMarco
By Cindy Ward

I'm so glad you have brought this up! This difference between their memory and their behavior/personality.

My own parents were both highy indignant and mostly non-cooperative at first. After all, their kid walked in and just took over. Who died and left the daughter in charge of the parents, anyway?

Especially Mom thought she was acting "stupid" or "dumb" when she could not remember things that intellectually she knew she should know. Like where her clothes were each morning. And where the bathroom is. Think how terrifying that must be! No wonder they act up!

I think it must somehow relate back to trust in the caregiver. Once they knew for certain I was not going to leave them, they calmed down noticeably.

I have yet to meet an Alzheimer's patient whose main fear, concern and center of concentration was other than that their family would abandon them or leave them behind. Imagine being in that kind of terrifying world alone to try to figure things out.

They THINK they are alone anyway because they don't remember most of the time that we are there. I think there is some connection between a physical, visceral experience of caregivers being around them consistently and for a long period of time - and their behavior pattern. They may not remember that I was there just yesterday, but they are sure glad to see me now and somehow know I am around a lot.

The family members who are NOT around consistently do not get this same reaction. They may get a warm greeting, but it is different from the greeting for the one who is there all the time. Watch for it.

Bob, I think Dotty finally began to trust that you would always be there. And it is kind of an internal response, because she can't verbalize it at all. I think you calmed her biggest fear and she could relax her guard. When mom would get all tensed up, I could occasionally get her to tell me what she was worried about. It was ALWAYS that she thought she would be alone and she was scared.

It may also relate to giving up correcting them. Once I quit trying to convince her she was wrong about the date, year, whether she had eaten, all that unimportant stuff, and just talked with her about little stuff, her resistance vanished. Her behavior improved.

She found her sense of humor again. If we could get her started down the path of "cracking wise" and "making funnies" - she was funny all day! If she started down that path of tears and fears and worries, she did that all day. That had nothing to do with her memory. It had to do with being at ease. Trusting.

Would love to know if others experienced similar behaviors. In the meantime, Bob. Carry on. Take care of yourself for us.

Cindy Ward is a long term care insurance specialist. To visit her website -- go here.

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Original content Cindy Ward, the Alzheimer's Reading Room