Sep 7, 2013

Dotty and Me, How We Put the "We" Into Our Lives

When I talk about Dotty and our life together with Alzheimer's I always use the word We. For some reason this seems to surprise care partners.

By Bob DeMarco
  Alzheimer's Reading Room

Dotty and Me | Alzheimer's Reading Room

Recently, I was talking to a group about Alzheimer's disease. After a while a woman said to me, "I have never heard any Alzheimer's caregiver use the word "we" all the time like you do".

I asked, what do you mean?



She said when you refer to Dotty and your Alzheimer's caregiving effort you don't say Dotty did this, or she did that. You say, we did this and we did that.

You say, this is what we did.

For example, I might say, this is how we solved this problem. Her point being that I solved the problem but I still said "we" solved the problem.

Well it seemed to me that when Dotty was peeing all over herself -- we had a problem. And, it seemed to me that we solved this problem together. Granted, I identified the solution.

My point here. Dotty would have identified the solution on her own if she could have. She couldn't. So we did it. I guess you could say I lent her my brain.

Or maybe, we shared one brain.

I know that my major operant philosophy when it came to caring for Dotty was simple and straight forward
we would live our lives.
Sure there are constraints when a person is becoming deeply forgetful, and the number of constraints continues to grow.

For example, I didn't think it would be a good idea to take Dotty up to the top of the Jungfrau (in Switzerland). But, I would have if there was a good reason to do so.

Or, if I thought we would benefit greatly from the experience we would have done it.

Weird. Now I am thinking, maybe we should have done it.

I do know that every day I felt a sense of purpose, and sometimes angst, when the late afternoon was approaching and it was time to take Dotty into the bright late.

I took Dotty into bright light almost every day. I did this because it clearly improved her attitude and behavior.

If we missed a day I did feel a certain sense of angst the next day, or urgency to be more precise. I knew we had to get into the bright light.

On the days when we went into the bright light I felt a sense of purpose and accomplishment and

this was one of the ways We put the We in caregiving.

Once you make it to Alzheimer's World it is very easy to replace the words "You" and "I' with

We

Take an inventory, are you using the words you and I, or are you using the word "we" when speaking with a person who is deeply forgetful?

In order to care effectivley for someone living with dementia, someone who is becoming deeply forgetful you must put the we into we.

If not, it is more likely that the deeply forgetful is going to fall into the black hole of Alzheimer's disease.

When it came to our daily life "we" did lots of things to make the day better.

If "we" didn't I can promise you this -- we were headed for the crappy day, or days, or weeks, or months, or years..

It seemed to me that Dotty and I were in our situation together. Weeeeeee.

I found Alzheimer's World and it changed our lives.

When you get use to the difference (the change) that dementia brings, and when you accept the difference, things seem normal instead of different.

Until you experience what I just described, I know those words will sound very strange.

How do you put the "we" into Alzheimer's caregiving?

By coming to the understanding that the person you always knew is still here -- they are just a bit different (each day).

But, they are still made of flesh and blood just like you and me.

Are you going to go out into the bright light today? Are you going to read the newspaper together? Get some exercise together? Share a banana?

We did.

Dotty and I beat Alzheimer's by working, living, and doing things together.

Dotty went to Heaven on May 25, 2012. I miss her. But I must tell you, we did many many things together and that is what I

Remember.

You comments, reactions, and insight we welcome below in the comments section.

Bob DeMarco is the Founder and Editor of the Alzheimer's Reading Room (ARR). Bob is a recognized influencer, speaker, and expert in the Alzheimer's and Dementia Community Worldwide. The ARR Knowledge Base contains more than 5,000 articles. Bob lives in Delray Beach, FL.

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