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Alzheimer's Caregiving, It's All in the Palm of Your Hand

Posted Mar 26 2011 9:20am
Listen up. Many of the persons suffering from Alzheimer's can't make decisions. So, they do what they can do. They say NO.

They can't make a decision and when they are saying NO they are telling you they can't decide. No is the biggest, most frequently used, word in the Alzheimer's World dictionary...
By Bob DeMarco
Alzheimer's Reading Room

Communicating in
Alzheimer's World
Back in early 2009, a few of the early readers of the Alzheimer's Reading Room wanted me to write about my own experience as an Alzheimer's caregiver. So I decided to write about my own metamorphosis. This metamorphosis continues to this day. I am constantly changing and refining my approach.

I didn't realize it at the time, but the decision to get serious about the Alzheimer's Reading Room brought with it great benefit for both Dotty and me.

As I began to write I was forced to think about my own caregiving effort. This lead me to examine what I was doing in greater detail. I soon realized I could improve on everything I was doing through greater systematizing of my own thoughts, efforts, and philosophy.

In The Metamorphosis of This Alzheimer's Caregiver (Part One), I said
The more I learned the more I wanted to know. I learned a great deal about Alzheimer's disease and dementia--including the science. It helped me understand a very mystifying disease. It helped me to put a frame around something that is difficult if not impossible to describe.
Near the end of that article I wrote
Then one day--a couple of years in--I came to a realization--it was time to say NO to Alzheimer's. I decided to fight.

I decided I would not accept the crazy behavior, the incontinence, and I would not continue to live in a shell. Instead, I would find ways to change things.

First, we would go out in the world and resume living our life the way we had before the diagnosis. Second, I would find a new way to communicate with my mother. Third, I would identify each problem that comes with the disease and tackle it head on.

Change, not acceptance.

Over the years I have been told that I am unique. I've been told, "you do things exactly the opposite of the way it says to do them in the books". I've been told by neurologist that I am "very knowledgeable about 'the disease'".

I suppose this is true.

After hearing these words so many times from so many different people, I started wondering if I am really different or unique.

The difference if there is any is that over the course of my life I developed a systematic way of dealing with problems and understanding new and different things.

First and foremost, I always want to be knowledgeable about anything I talk about. So in this case, I needed to get a good understanding of what was happening in my mother's brain. What was causing her to be mean, unable to remember, and unable to perform tasks that were formerly second nature to her.

This understanding allowed me to accept her repeated questions, her repeated need to eat, why she was so mean, and why she engaged in behaviors like getting up at 9:37 PM every night and insisting she needed to clean our home -- as a part of Alzheimer's disease. I realized I would be seeing and hearing these behaviors each and every day, so I accepted them as a normal part of living in Alzheimer's World.

This understanding allowed me to see that there were clear patterns of behavior every day. That certain things were happening over and over. Amazingly, at the same time of day, or on the same day of the week. Like clockwork.

I wrote
One of the most important observations I made was that my mother had very well defined patterns of behavior.

  • How she walked on the treadmill,
  • How she spit venom at me with her words,
  • How she woke up at 1:25 AM, 4:30 AM, 9:37 PM,
  • How she would get mad at me, go into her room, then would come out of her room at 7:09 PM,
  • How Monday and Tuesday's were good days,
  • Wednesday the downtrend started into Thursday,
  • How she would go in here room and curl up into a ball on Thursday and not come out until Friday.

If I am different here are two reasons why.

First, as I observed these patterns I came to a simple conclusion. What I must do is replace these patterns with new and different patterns. Good patterns.

Second, I didn't ask anyone what should I do in a given situation. I asked myself, how am I going to change this?

I decided to get out in front of the situation (behaviors). For example, my mother asked repeatedly -- "what day is it today". I didn't try and change the conversation. What I decided to do was get out in front of her.

My solution? We start each day by my asking my mother what day it is. Then I ask her to read me the answer from the top of the newspaper. Every day. It worked.

If I am different, I am different in this way.

I don't try and deflect the conversation on to a new and different conversation.

I try and change the pattern of behavior.

Many of you might not like reading the following words.

You tell me your patient won't do what my patient will do. You then tell me they say NO, and refuse. You then give up.

Listen up. Most of the persons suffering from Alzheimer's can't make decisions. So, they do what they can do. They say NO. They can't make a decision and when they are saying NO they are telling you they can't decide.

NO is the biggest, most frequently used word, in the Alzheimer's World dictionary.

However, NO is defined differently in Alzheimer's World.

No means, help me I can't make a decision. Will you make the decision for me?

What is the single best way to get an Alzheimer's patient to do what you would like them to do?

Hold out your hand palm up and wait for them to take it. Please, don't say anything. Not a single word. Wait.

Keep trying. Don't get frustrated.

They will take your hand. And of this, I am certain.

If you would like to read some of the articles that describe my metamorphosis as an Alzheimer's caregiver go here -- Alzheimer's Disease Caregiving Advice and Insight.

You will also find links to articles that include: more of my thoughts, ideas, insight, and advice on that page.

Keep in mind, I wrote those articles years ago.

Take your time and read through those article. Feel free to forward them to family and friends, or reprint, share, and discuss them in support groups.

Read More on the Alzheimer's Reading Room

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 2,390 articles with more than 272,100 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

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