In order to care effectively for a person living with dementia you must accept the way things are; and then, introduce change into your life.
Alzheimer's Reading Room
Dementia patients find it difficult, sometimes impossible, to make decisions. When they say NO they are trying to tell you they can't decide.
The word "NO" is one of the most frequently used word in the Alzheimer's World dictionary.
As I began to write here in the Alzheimer's Reading Room in 2009, I was forced to think about my own caregiving effort. This lead me to examine of what I was doing in greater detail. I soon realized I could improve on everything I was trying to systematize my own thoughts, efforts, and philosophy.
In The Metamorphosis of This Alzheimer's Caregiver (Part One), I wrote:
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 understand.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, Dotty and I 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.
Back in the beginning people were telling me I was different and unique in my approaches to dealing with behavior caused by Alzheimer's and related dementia.
The difference if there was any was that over the course of my life I developed a systematic way of dealing with problems and solving problems.
I always want to be knowledgeable about anything I talked about or anything I tackled. 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. 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.
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, and became frantic at 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.
First, as I observed these patterns I came to a simple conclusion. What I needed to do is was replace these patterns with new and different patterns. Good patterns. In other words, change the bad into good.
Second, 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 started each day by my asking my mother what day is it?. Then I asked 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. When something happens over and over I do two things; get out in front of it by accepting and anticipating it is going to happen; and, then trying to change it to something more positive.
I don't try and deflect the conversation on to a new and different conversation.
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 living with 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, the word 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.
To learn more about how to use the palm of your hand, guide a dementia patient, and how to communicate more effectively try this custom search.
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 try this custom search. You will find links to articles that include: more of my thoughts, ideas, insight, and advice on those pages.
Communicating in Alzheimer's World
What’s the Difference Between Alzheimer’s Disease and Dementia
Alzheimer's Care, I Cannot Get a Minute for Myself
Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 5,000 articles. Bob resides in Delray Beach, FL.
Original content the Alzheimer's Reading Room