Nov 4, 2011

Seven Years of Learning How to Cope with Alzheimer's Disease (Part 1)

You are not putting me in a home, I'll kill myself first.

By +Bob DeMarco 
+Alzheimer's Reading Room

Bob DeMarco
Soon I'll hit the seven year mark. 2,557 days. 61,368 hours. 3,682,080 minutes.

I used my time as an Alzheimer's caregiver to become the best caregiver I could be.

I exceeded my own expectations. I exceeded the expectations of every doctor, specialist, and person that is familiar with our story.

This happened because I decided to make it happen. Although I freely admit, I was clueless about Alzheimer's disease when I started.

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There is a lot to learn when you first become an Alzheimer's caregiver. There wasn't much useful information on the Internet when I chose to assume my role as my mother's caregiver.

I now believe that was fortunate. I had to learn on the job. Figure it out on my own.

My first simple decision -- I thought what the heck, I am going to be doing this for a while, why not get good at it.

For those of you that didn't know us from the beginning, you might have concluded by reading about us on this blog that Dotty has always been some kind of model Alzheimer's patient.

Please allow me to disabuse you of this idea.

When I started, Dotty was meaner than a junkyard dog. She had the tongue of a rattle snake. She sunk her fangs into me and spit her venom on me all day long every day.

Was it Dotty, or was it the Alzheimer's disease?

I knew and understood from day one that is was the Alzheimer's disease speaking.

My mission, get my Dotty back.

I can't write many of the mean spirited things that Dotty said to me. I just can't put her in a bad light. Maybe someday I'll tell. Not right now.

In the beginning, Dotty would scream at me --
you are not putting me in a G------d home, I'll kill myself first.
Dotty told me over and over every day --
I wish I was dead.

This was mild compared to the meaner things she said, or screamed at me.

It hurt. The pain was enormous. The psychological and emotional pain was never ending.

I knew that something had to change and I came to the believe that I could change the dynamic.

At first, it was the recognition that Dotty had clear patterns of behavior. She was meaner every Thursday, then she was on Monday. She would go into her room on Saturday and refuse to come out until Sunday night. Amazingly, she would come out at 7:07 PM (plus or minus a few minutes) every week.

Meanwhile while I was trying to figure out what to do, I had to experience this week after week, month after month for what seemed like forever. It was so bad that the only way I could get Dotty to eat was to put her food on the kitchen table and vacate the area. Vacate the area loud enough so that she would know I was gone. She would come out, eat, and then go right back into her room and get in bed.

It was uncanny.

Dotty would wake up and get out of bed every night. 1:29 AM and 4:29 AM (plus or minus a few minutes). The pattern was set in stone. I learned to wake up right before she did and start listening for her to get up and start roaming and eating. She never disappointed me. Stomach ache and heart ache for me every night.

I started to think and continued to observe. I thought, what if I could change these patterns of behavior. What if I could introduce different, better patterns of behavior into our life. I decided this was worth the effort.

One of the first decisions I made was to take Dotty into a gym for exercise. Imagine, Dotty 87 years old and going into a gym for the first time in her life. We started small. Then I started working Dotty out on the treadmill and on the exercise machines. Real exercise.

The pattern was the same day after day. Dotty, time to go to the gym. Dotty's response.
I am not going to any G-d gym.
On the way to the gym.
I am not getting out of the car when we get there.
On the way into the gym,
I'll go in but I am not going to do a G-d thing.
Please note here that Dotty refused to go to the gym just about every day. I did not allow this to deter me. Once we established the pattern of going to the gym it was like we were on automatic pilot. I would put on Dotty's gym shoes, help her up, head out to the car and go.

The only words that came out of my mouth were words of encouragement. I basically ignored her refusals to go. I did not argue with her. We just went. Somehow we managed to get there every time.

On the way out of the gym. Dotty was standing up straighter. She was smiling. She seemed pleased. Was it possible that Dotty was pleased with her accomplishment? I thought who cares, this is working.

I could see with my own eyes the positive effects of the exercise. It didn't hurt that people often came up and said nice things to Dotty and me. This lead me to additional conclusions about the positive effects of communication and socialization on someone suffering from Alzheimer's disease.

After a few months on the exercise program,
Dotty stopped waking up a night.
We had introduced the Alzheimer's medication into the equation, and changed some of the medication she was taking along with the exercise. I think this plus the new and different way we were beginning to communicate is the reason why she started sleeping through the night. She does get up and go to the bathroom and then gets back in bed.

She was still saying those wild, crazy, nasty words to me. But I could see subtle changes in her behavior. I had started to provide a safe, stable environment. and I learned how to deal with my own often erratic behavior. I learned how to accept what she said as part of normal Alzheimer's disease behaviors, and not as a personal attack on me. Soon she stopped spitting the venom on me.

I learned while exercising Dotty in the gym that she was capable of more than I had ever imagined.

This lead me to wonder how much Dotty could do, and how much change we could introduce into our daily life.

Then one night I wrote down these words --

We will start living our life the way we always had.

When I wrote it, I believed we could. We did.

So this is how we started on the path to where we are today.

Dotty has not said --
you are not putting me in a G-d home, I'll kill myself first
for many years.

She does say on occasion -- I wish I was dead.

Dotty is a much better Alzheimer's patient now then she was when we started -- seven years ago.

She can still speak full sentences. I help her read every day.

Dotty now smiles and laughs. Something she did not do for several years. That was really gut wrenching.

The only real bad thing is that Dotty can barely walk. I worry ever single day that it will be the last day she walks. Might sound a bit nutty because she no longer falls, and she has never been on a walker.

If you are wondering why she has never been on a walker here is the simple explanation. I observed that Dotty could do more than anyone imagined -- even me at first.

So I started imagining us doing things the way we always had.

I imagined it for both of us. I guess you could say,

I lend my brain to Dotty whenever necessary.

Seems to work for us.

End Part 1.

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Original content Bob DeMarco, the Alzheimer's Reading Room