Pam's Caregiver Notes

contributed by Pam Meinke, Adrian, Michigan, USA

Important Facts Every Family
Needs to Know

This disease is not your fault.

Our research showed there are two recognized causes; familial (hereditary), or a severe bump to the head. Compassion, patience, and a sense of humour will become the bond between the Alzheimer's patient and those who love them.

A person with Alzheimer's does not lose their intelligence.

This took me some time to understand. After a while, I realized that Mom absolutely understood everything that was said to her. She could process each sentence, but the correct words seemed to escape her reply. It was distressing to see some families have negative discussions in front of their loved ones…not realizing the harm they were causing. I learned to pick one or two words from her jumbled sentences and repeat them back so she would think I understood what she was trying to tell me. This brought her comfort.

Perception is reality.

It was surprising when Mom talked about the cow we used to have! We realized she was picking up other patients' stories and interpreting them as her own. Whatever an Alzheimer's patient believes to be true is true to them. Mom had never lied to us... and she was not aware the stories that were repeated over and over had never happened to her. Arguing, or trying to correct her memories was very upsetting to her. I remember sitting by her on the bed… nodding with a smile on the outside… while crying on the inside.

Communication between family members and loved ones
needs to be a priority.

One brother set up a family web page that quickly became an excellent tool for many discussions. In the beginning, talks were carefully worded and somewhat timid... but as the disease progressed, so did the tenacity of our posts. All family members, including grandkids, were able to keep track of the progression of this disease. When the "Elian Gonzales" episode started in the news, we realized another page should be added for discussion that had nothing to do with Mom. When tempers flared, another page was added that needed a password.

Accept the fact that responsibility will not be even.

Two siblings had made the decision long ago to live far away; their direct participation in our Mother's care was minimal. Weekly phone calls from my sister helped me share the challenges and gave me a much needed shoulder. Each of us seemed to look at this disease in a different way... and that was all right.
...

Little Things You Can Do
When she was moved to an Alzheimer's facility, I made big lettered signs... in printed lower case letters, saying what each drawer held, and taped them to the front of the drawer (e.g., "socks", "nighties", etc.) I drew a picture under each word so when she could no longer read what they said, the picture was a good reminder. (We always got a big laugh at my "Madonna-looking" undergarment!) Also, as I would put her clothes away for her, I gave her the socks to fold... she seemed to enjoy keeping her hands busy.
...
It seemed to upset her when the blouses were unbuttoned, and I learned to keep them buttoned so she could simply put them on over her head. She could not remember how to do this.
...
Because singing was an important part of our family, I made a songbook of familiar songs... laminated the pages, and put them in a big binder. Some were just silly songs from long ago... some were hymns... but they were all HER songs... and that book was used often. Now, I've become the soloist, but I know she still loves to hear them.
...
We copied off several large pictures of all of us and our families, laminated them and taped them to the wall by her bed. Early on, it was clear how much these smiling faces gave her comfort... after a while, she had no idea who anyone was...except for HERSELF in the pictures! (Interesting!)
...
Once in a while I take her something I've made/baked using one of her own recipes. Her famous banana cake with the broiled topping seems to make the best impression on those taste buds... she DOES remember that taste! Now she needs a reminder to swallow, but her expression at a familiar taste makes me feel as good as she does!
...
Music became our connection early on. Familiar songs soon had forgotten words, but we still sang them in a "do-do-do" fashion! (I found I could sing a LOT more songs if I didn't have to remember the words anyway!) Often other clients join in even now as I sing to Mom.
...
A friend took his Alzheimer's father's car keys and carefully filed them down so they would not start the car. Actually, all his father needed was to see those keys in a familiar place and THINK he would be able to go when he wanted!
...

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Contact Doug Anderson with questions about this page.
Copyright (C) 2007 Pam Meinke
Last updated 6 April 2007
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