Aug 11, 2016

8 Things I Learned on the Path to Caregiver Excellence

I am often reminded of the enormous amount of negative feelings and thoughts I had before I found the path to caregiver excellence.

The qualities of caregiving excellence

By Bob DeMarco
Alzheimer's Reading Room

One of the most important things we need to do as caregivers is develop not only a positive mindset; but also, the right mind set.

I learned that in order to do this I had to rewire my brain. I say this because many of the things we do naturally when we become a caregiver don't work well with dementia patients.

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Our task becomes more difficult because while we are trying to learn how to care effectively - our brain is being bombarded with an enormous amount of negative feelings and thoughts.

As I think about this, I am also reminded of the enormous amount of negative feelings and thoughts I had before I found the path to caregiver excellence.

As caregivers we experience feelings of hopelessness, grief, denial, confusion, the list goes on. All of sudden, and almost out of nowhere, our loved one starts to engage in new, different, often bizarre behaviors that unsettling to us. Its all new and very difficult to deal with and understand.

My mom Dotty did all kinds of things in the beginning that were hurtful, unsettling, and made me feel angry.

She told me to get out, she told others I wasn't feeding her (starving her actually), and she thought that people were stealing from her. You know the list, you have or are experiencing this yourself.

My mom did not smile or laugh for almost 2 years - this hurt.

My personal breakthrough came at 1 AM in the morning when I wrote these words on my da Vinci pad,

Something Has to Change

and then shortly thereafter,

That Something is Me.

Those words changed my life.

I didn't really know at first what I was going to do. I just knew I was going to change my entire approach to caring for my mom.

Instead of making it about me, I finally realized it was about Dotty.

I finally started listening to her and watching her. Instead of obsessing over her strange, bizarre, and often confusing behavior I started wondering, what is she feeling, why is she doing this? How does she feel right now?

Then one day I made the one big giant step to the left. I entered what I first called Dotty's world. The same words, the same actions, and the same behaviors that were making me feel bad all of a sudden seemed natural. Normal. Eventually I started calling this new place Alzheimer's World.

My point here, instead of trying to correct my mom, instead of trying to intervene every time she was doing something, I started leaning up against the wall and watched and listened. I was trying to understand her.

So the process of rewiring my brain began when I decided I had to change.

When Dotty would start doing something nutty, instead of stopping her, I let her do it. I often stood their fascinated. I wondered why is she doing this? I found myself laughing, and chuckling, at the same exact behaviors that were driving me crazy.

I learned one important thing. Dotty would often start doing something, or start going to do something, and then forget what she was doing. By watching instead of intervening it finally became apparent that her memory and her ability to remember had changed. This should have been obvious but it wasn't at first.

So Dotty would often become confused. When Dotty became confused she most often became mean. This is where a lot of the meanness comes from - confusion. As caregivers we have a tendency to jump in and try to explain to our loved one how to do something, what they can't do, why they should be doing what we want, and on and on - this does work.

Once I started to understand what was happening and why, I was then able to change the way things were. Slowly but surely, one day at a time. One by one, I substituted new and better behaviors for each of those unsettling behaviors.

8 things I learned that really helped.

1. Dotty first taught me there was more there when she jumped on a exercise machine in the gym - all by herself. She could do more than I thought.

2. Next, I decided we would start living our lives. Dotty and me. This means we start going out and doing things.

3. I continually reminded myself that something had to change. That something was me.

4. I learned that when I changed, so did Dotty. Instead of being the boss, I became her guide.

5. I learned that by accepting these new, often bizarre behaviors, they became the normal. They stopped bothering me because I expected them to happen.

6. I learned that by substituting new patterns of behavior, developing a set routine to our life, that many of the bad things went away. We were too busy living our life, we were not sitting around doing nothing.

7. I stopped thinking that Dotty "suffered" from Alzheimer's disease; and instead, starting thinking of her as "deeply forget", and a real person.

8. I finally learned how to understand, cope, and communicate with a person living with dementia.

I learned how to think positive (relearned actually). I chose caregiving excellence, over caregiving complaining. Of course, none of this happened over night.

I would encourage you to read the links in this article. Even if you have read some of them it is a good idea to reread them from time to time. It takes some time and practice to develop the mindset to reach the point of caregiver excellence. And yes, you can do it.

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Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver.  Bob lives in Delray Beach, FL.

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