Each time I visit here, the effects of this horrendous disease on families is so apparent. I thought I could suggest a few things that were VERY HELPFUL for my family in dealing with the diagnosis of Alzhiemers in our Mother, and then perhaps some of YOU would share suggestions that have proved helpful in this long journey.
There are some very important facts every family needs to know;
· This disease is not their fault.
Our research showed there are two
recognized causes; familial (hereditary), or a severe bump to the head.
Compassion, patience, and a sense of humor will become the bond between the Alzheimer’s patient and those who love them.
· A person with Alzheimer’s does not loose 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.
Music became our connection early on. Familiar songs soon had forgotton 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 Alzhiemers 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!
My sincere hope is that by sharing my journey thru this horrific disease, I can present a perspective that offers compassion, insight, and even a little humor....................Pam