Apr 22, 2013

Bonding with an Alzheimer's Patient

It never dawned on me that I was losing Dotty. It actually seemed to me like we were doing more not less. We focused on what we could do, and more often than not the results were better than I could have ever imagined.

By +Bob DeMarco
+Alzheimer's Reading Room 

In yesterday's article, Caution – Avoid These Mistakes at All Costs, Marie Marley included a sentence that caught my attention.

"But the most painful thing you will ever face as an Alzheimer's caregiver is that you slowly lose the person you love".

I fully accept that this is the way that many people feel, and that is what they believe.

I have heard or read it all. The Long Goodbye. This is not the person I knew. I can't take them out. Blah Blah.

I have a very different belief. I believe that there is more to persons living with dementia than most people can imagine.

So you see, it is not the persons living with dementia that are the problem, it is the persons stigmatizing the persons living with dementia that are the problem.

Why am I getting the feeling that an awful lot of people are not going to like this article?

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Let me ask you some simple questions.

Does your Alzheimer's patient follow you are around?

When they can't see you do they call out your name? Do they wonder where you are?

When you go out, or when you go away for a while, do they constantly ask where you are? And ask, when you are coming back?

Well if they do any or all of those things it only stands to reason they are bonding with you; or,  at the very least trying to bond with you. Are you trying to bond with them on their own terms?

The issue.

Did I lose my mother Dotty to Alzheimer's? No, I did not.

In 2010, six years after she was diagnosed Dotty started singing a song I had never heard before in my life. She sang it beautifully. It was first made popular by Billie Holiday. Here is a link to first version article I wrote about this experience as it happened - Not a Ghost of A Chance -- An Alzheimer's Disease Out of the Box Moment.

Two months before my mother went to Heaven she picked up two colored pencils and started coloring in a coloring pad. She did this on her own. Most professional people are stunned and astounded when I inform them that Dotty had scored a 12 on the MMSE before this happened. A score of 12 means moderate severe dementia. She shouldn't have been able to do it, but she did. Read Jeanmarie and the Coloring Pad.

Now it is true that Dotty couldn't remember nuttin about her current daily life. She didn't seem to mind. So why should I?

Instead Dotty and I started working together under the trying circumstances that come with sickness, in this case Alzheimer's disease.

I started by deciding I had to change, and I did change when I found my way into Alzheimer's World. In Alzheimer's World I frequently asked myself, Why? Why does Dotty do this, why does Dotty do that? Most of the time the answer was pretty simple.

I decided early on that Dotty and I would resume "living our life." This turned out to be a very good decision. So good that once we resumed living our life I forgot Dotty had Alzheimer's most of the time.

We were too busy focusing on what we were going to do, so we didn't have the time to think about what we couldn't do.

For example, 3 weeks before Dotty went to Heaven we sat out on the sidewalk downtown and ate cheesesteaks and french fries. Now let me tell you, it was not easy getting Dotty there. Although, it never actually crossed my mind at the time that it was difficult. We were too busy living to think about the complications that come with Alzheimer's.

So anyway, my point is that Dotty and I resumed living our life.

Dotty taught me over and over that dementia patients are capable of more than we the caregivers can imagine. As a result of her teaching, we started doing more. The more we did, the more Dotty taught me - taught me over and over that Alzheimer's patients are capable of more than we (or in this case, I) can imagine.

Over time Dotty and I bonded quite nicely. We became a team. Sure it was hard, hard on both of us. But Dotty kept delivering up the more, and I kept on responding to the more there.

So it never dawned on me that I was losing Dotty. It actually seemed to me like we were doing more not less. Of course, there were lots of things we were no longer doing because Dotty couldn't do those things.

Oddly, over the last year since Dotty has been gone, I continue to think of things that I would have liked to have done with Dotty, or at the very least tried. It seems like I am never running out of new ideas.

Now if you open your eyes and take a good hard look you will see your loved one living with Alzheimer's. Are you thinking about what they can't do, or what they might be able to do?

Alzheimer's patients bond to their caregiver like glue. You let em bond, you can guide them where ever you want to go, and they will willing follow. And even do things with you that you might be dreading at the moment. Yep, you change, they change.

Alzheimer's caregiving is a good example of how life works.

The more you put into it, the more you get back.

Or, you can just sit back and let the disease run it course.

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Original content Bob DeMarco, the Alzheimer's Reading Room