Apr 4, 2014

Looking Beyond the Obvious in Dementia Care

Amazingly, the alone of being an Alzheimer's caregiver really worked in my favor.


Bob DeMarco
Alzheimer's Reading Room

If you look for the more there in dementia care you can find it.
I'm sitting here thinking about how I am going to communicate a simple message -- More There.

Many caregivers believe they are all alone. Over time, their friends and family abandon them.

Amazingly, the alone of being an Alzheimer's caregiver really worked in my favor.


There was no one around to tell me -- you can't do this or you can't do that. No obstacles.

No one clouding my mind and creating doubt.

This allowed me to get on with the business of caring for someone living with dementia.

I finally reached a point were my brain was telling me -

Think Big.

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I'm a thinker. I have been thinking about ways to accomplish things all my life.

So when it came to caring for a person living with dementia, my mom Dotty, I could not resist the temptation to Think Big and try to and figure out what we could do improve our lives.

To be honest, it wasn't easy.


In the case of caring for Dotty it was more a matter of one thing leading to the next. This was what actually allowed me to start thinking big, and eventually lead me to think

Big.

I had this idea to take Dotty into the gym for real exercise. After I did this something wonderful happened, she stop falling down. Yep, she stopped falling and her balance improved.  That was pretty big, don't cha think?

I also observed that on every single trip to the gym Dotty would complain, curse, and say -- I'm not going to do it.

I then noticed on the way out of the gym that Dotty was smiling, standing up straighter, and walking better.

When we arrived home Dotty was in a better mood and our day went better.


As a result the quality of our life started to improve dramatically. Pretty big, don't cha think?

This lead me to a simple understanding - Dotty could do more than I thought. A lot more.

I mean she was working out on the treadmill, chest machine, the shoulder machine, and doing the stand up sit downs. Heck. I could not have imagined her doing that at 80 years old. Let alone at 88 years old when we started working out in the gym, and Dotty and I were living with dementia.

Soon instead of thinking she can do more than I thought, I reduced it down to "more there". It was easier to say and easier to think about it that way. More there. More there than I thought.

Once I started to understand that Dotty was capable of more than I could imagine, it only encouraged me to do what?

Think Big

It also encouraged me to continue thinking; and then, to start thinking beyond the obvious. Pretty soon I had the Big Thought. I thought,

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

As it turned out, this was one of my greatest of all thoughts.


Please note. Implicit in this thought was the hidden message -- we are not going to allow Alzheimer's to dictate how we live, or what we are going to do.

I did have some failures or false starts on the way to living again. What did I do? I thought about it.

Here is something I learned. You have to keep it simple. Simple really works well with a person living from Alzheimer's.

I read about Alzheimer's caregivers that were embarrassed by the Alzheimer's patients and how they acted or did things in public. Those caregivers were really concerned about what other people thought of them if you want to know the truth.

I was too busy doing my own thinking to think about what other people thought.

Dotty did pee on herself in public once. Was I embarrassed? No.

Was I embarrassed for Dotty? No. Besides, we just got up without any hubba bubba and walked out like nothing happened. After we got outside I thought, hmm, we must be invisible, no one noticed.

I guess you could conclude that worrying about what other people think is not worth the effort. Besides, I learned over the years that those other people, the people who don't know you, are actually more kind - than  you might imagine.

The short of it all is that I kept noticing over and over that with Dotty there was

More There.

The most important part of the "more there" process is that it grows and grows. My mother was still teaching me even near that end that she was capable of more than

I Could Imagine.

I mean her short term memory was gone for sure.

On the other hand, she once told me the name of the school she went to in 1922. More than once she started singing a song I never before heard in my life.

In fact, she started singing all the time when prompted by music or me. Doesn't sound like much does it?

Well consider this.

No one had ever heard my mother sing before she started living with dementia. No one. Not a single family member, relative, or friend could remember ever hearing my mother sing.

More there don't cha think?

My mom told me all kinds of stuff that happened in the 1920s and 1930s that no one had ever heard before. At the minimum you would have to conclude there is something there. I mean she said it, didn't she?

Every time Dotty gave me -  more - it tickled me pink. It encouraged me in way that is hard to describe. Quite frankly, Dotty turned me into a good caregiver. A very happy caregiver.

I guess you have to wonder at times - what came first the chicken or the egg? In this case, I now believe it was the chicken.

I realize that many Alzheimer's patients are far down the road. Some go down the up staircase faster than others. I wonder to myself often -- more there?

Workers in (social) day care tell me that many patients come in

Not There.

They look all dull and washed out. They don't seem to have much awareness.

And then it happens. The more there just pops right out of them. The family caregiver is usually amazed

My little Dotty could still read right up till near the end. Why? Because I had her read to me every day. I didn't think of this at the time, maybe I should have had Dotty write to me every day. Yeah, I wish I had thought of that. Well I just thought it. I thought that one for you.

We had this toy parrot -- Harvey. Harvey made me think.


Harvey reminded me daily -- More There.  Harvey was Dotty's best buddy and friend.

So now its up to you.

Are you gonna tell yourself -- they can't do it. Or, are you going to Think Big?

Are you willing to discover that there is More There?

Besides, do you have anything else better to do?

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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR).

Original content the Alzheimer's Reading Room