Aug 22, 2014

We Are Constrained By Our Own Brains

We the caregivers have a tendency to give up, or to stop trying. Our brains tells us - we can't do it. Our own brains can be our biggest enemy when it comes to effective loving, and caring.

I read Elaine Pereira's article, Christmas Memories Past and Present, with great interest.

We the caregivers have a tendency to give up, or to stop trying. Our brains tells us - we can't do it

In her own words Elaine wrote:
"I especially recall my mom's bizarre, dementia induced behaviors of Christmas Day 2009".
She then went on to describe a series of unsettling behaviors when her mother started rummaging aimlessly through her handbag.

This immediately sent me back to one of the most difficult, gut wrenching, heart breaking, stomach aching days I ever had with Dotty.

By Bob DeMarco
Alzheimer's Reading Room

The episode occurred very early in my caregiving effort, and actually took place before Dotty was officially diagnosed with dementia of the Alzheimer's type. Probable Alzheimer's.

This episode took place during the our period of greatest burden, the two year period where Dotty didn't smile, or laugh. Not once.

I decided to take Dotty down to Miami Beach for a nice lunch. It is a bit of ride, about 70 miles from Delray Beach. Since there was no great hurry, I decided to ride along the beach, the slow road, for much of the trip.

As we meandered along I would say, Mom, look at the ocean. She didn't. She had no real interest in either the beach or the ocean. In fact, she had no real interest in any of the scenery. Instead she kept taking her change purse out of her handbag and looking through it over and over. Sound familiar?

She would look through the cards in her purse, count the money, play with the coins, put it back in her handbag. She had no real interest in talking or discussing the scenery. Then she would start with the handbag all over again.

She was out of it. Gone. Frankly, the look on her face as she was doing this was almost zombie like.

The behavior continued all the way to Miami Beach, and all the way home. I took the Interstate back and drove about 75 miles an hour all the way home.

How did I feel? Angry, confused, scared, and filled with feelings of dread and hopelessness. Frankly, that is putting it mildly.

I felt like Dotty was going into a black hole. Would she know me next month? By the way, this episode took place in 2004. Dotty went to Heaven On May 25, 2012.

In 2012, Dotty was smiling, singing away, talking to Harvey, and even talking on the phone to Carole Larkin (that always cheered her up).

After a while, and after 100s of gut wrenching episodes, I just became more and more determined to do something about the situation we were living in, and to bring life to our lives.

It all started with a very simple decision. I decided that Dotty and I would start living our life. By this I mean, by doing what we did, and what she did before the dementia was diagnosed.

So I got out my da Vinci pad and started mapping out our day. I remembered that Dotty would get up in the morning, open the door, grab the newspaper, make coffee, and start working her way through the paper including the comics and crossword puzzle during the course of the morning.

So that is what we did. The only difference is I would ask Dotty to read stories to me, and read the recipes in the food section to me. I would sometimes try and get her reaction to stories.

Dotty did still have feelings and she did register them sometimes. She would always be sad when she read the stories about the poor economy and unemployment. She would look at me and ask, "how are people going to feed their children". Dotty could still think and feel.

Little by little, I started building routine into our day. There were plenty of false starts and changes.

For example, I finally realized there was "no possible way" that Dotty would take her shower in the morning. So I stopped trying to get her to do it in the morning.

Eventually I realized if I tied the shower to food or a trip outside our home to the store (or some place), Dotty would take her shower and put on her cloths. We usually did this around 3-4 in the afternoon.

Eventually I realized that Dotty's attitude improved if she got out of the house, and got plenty of bright light. I used that to overcome her tendency to get difficult in the late late afternoon or early evening. I noticed she would get that "I am going in the black hole look on her face" and when she did I knew it was time to take action. Do something. Get in motion. It worked for us.

The point I am trying to make here is you have to get your dementia patient in action. Moving and doing things. Think back to what they liked and did and introduce it back into your life as best you can.

Always keep in mind that Alzheimer's patients are capable of more than we can imagine. That is right.

We are constrained by our own brains. We the caregivers have a tendency to give up, or to stop trying. Our brains tells us - they can't do it. Our own brains can be our biggest enemy when it comes to effective, loving, caring.

Yes, we are the enemy of ourselves.

I realize from years of listening that someone is going to tell me, "my Alzheimer's patient is different than Dotty". They can't do it.

Well back in 2003, 2004, and 2005 Dotty was a zombie. She didn't smile and she didn't laugh and she didn't want to do anything.

Then the situation started to change. Everyone who has been here for a long time will tell you they saw the look on Dotty's face change.

Dotty went from looking like that not there person, to a nice, friendly, happy old broad. No, not the person she was before AD, but a much more alive person over time.

I have very strong positive beliefs about Alzheimer's caregiving. Mostly I believe in caregivers. I understand how you feel. How you might be feeling at various stages in your caregiving effort.

I understand because I lived for years under the dark cloud of enormous burden. I understand because I have read more than 60,000 comments from caregivers.

I now understand that you can get out from under those dark clouds of burden and into the light. Reverse the burden into Joy.

I am not saying that your experience will be just like mine. I am saying you can make a difference in how you are living by living your life.

Don't allow your brain to constrain you. Think positive. Think "more there".

It is my belief that each of us is brought to dementia caregiving for a reason. This is a spiritual challenge in our lives. We should welcome this challenge, accept it, and embrace it.

We get an opportunity to bring real purpose to our lives. Real purpose in a way that most will never understand.

We get an opportunity to bring real accomplishment to our lives.

Consider establishing a routine and getting into action.

By the way, Dotty kept counting the change in her purse all the way to the end. The difference was she would marvel at all the coins, and I would smile and laugh and marvel right along with her.

Same action, different perspective - from both of us.

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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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