Sep 30, 2014

Dotty Lived Her Life Despite Dementia, You Can Do it Too

A lack of social stimulation is harmful for people with dementia. It exaggerates the impact of the condition, can lead to depression, and it encourages them to withdraw into themselves.

By Bob DeMarco
Alzheimer's Reading Room

Dotty at the Banana Boat, Boynton Beach, Florida

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The the Banana Boat was one of the places we went to often while Dotty was living with dementia. You'll notice it is outdoors and on the water (the Intracoastal Waterway). A very nice place down here is south Florida.

See all those people around Dotty. Notice she is not all bent out of shape? Not nervous or telling me she wants to go home.

They claim that people living with Alzheimer's don't like crowded places or being around a lot of people they don't know. It seems to me the opposite is true. One thing for sure, most of the deeply forgetful that attend social day care do very well.

Well guess what?

Dotty didn't like it at first either. The effort to get in and get situated was a bit confusing to her. But, once she got use to it, and once it became part of our routine she really enjoyed herself.

Of course this all happened after I finally realized that --
Dotty and I would start living our lives as we always had.

It took me at least two years of Alzheimer's caregiving to figure out that we needed to start living our life the way we always had. I knew we had to do something or the end was going to come sooner rather then later. Either Dotty was going to drop off the edge of a cliff, or I was going to jump off the edge of a cliff.

With my Leonardo da Vinci pad in hand, I continually went into my mental bunkhouse. This is where I think and use bunkhouse logic to come up with simple solutions to improve our lives or solve problems.

The thought in my head was always the same -- how was could I make life better for Dotty and for me.

In the beginning, right after the diagnosis it seemed like we started living in a cave. Did this happen to you?

I thought about this constantly for about two years. I knew we had to do something. I did not know what to do because I was new at Alzheimer's caregiving and frankly, I didn't know snot. That translated into I had drunk the Kool-aide - the stigma attached to Alzheimer's disease.

Here is an example of a setback I had on the way to discovering how we might go about living our lives as we always had.

I am thinking we can't live our life in cave and I come up with a great idea. I'll take Dotty to Miami Beach for the day -- on a road trip. In the old days when I came down for vacation, I would take Frank and Dotty, otherwise known as Dad and Mom, to Miami Beach to go out for dinner. Now this is no easy task. About 72 miles or so each way.

Mom and Dad loved it.

So here we are, Dotty and I, taking the scenic route to Miami Beach from Delray Beach. Down A1A. It is a beautiful ride. For much of it you see the ocean. You also see the contrast of the towns. In Hollywood it is like a throw back to the 1950s as you drive through.

Once you get near Miami you start to see one monster tall condominium building after another. Somehow these building are both impressive and ugly. In the old days when they were few and far between they really did look impressive. Now they are lined up one after another for miles and miles. Ugly.

Back to Dotty. On the long slow drive to Miami Beach I try and talk to Dotty. Dotty is not saying a word. Mostly she is playing with her wallet and pulling things out and putting them back in. Dotty has no interest in looking at the ocean or the monster buildings or the 1950s in Hollywood, Florida.

This had the usual effect. From, big to bigger sized stomach ache for me. Keep in mind, we were still at the stage where I had no clue of what I was doing as an Alzheimer's caregiver.

Finally, we get to Miami Beach and I am all excited because I am taking Dotty to the world famous Wolfie's deli- restaurant. The last time I went to Wolfie's with Dotty was in 1959.

We finally get there. Guess what? Closed. Gone. Not there. I did learn later that they were in the process of moving.

Next I think, no problem. We will go to this great fish restaurant on the 79th Street Causeway (by now Joanne is probably thinking,  How the heck does Bobby know about all these places). The restaurant called Arthur's is awesome. It is huge and it is right on the water (the harbor).

You sit at a picnic table that is covered with newspapers to eat. When they bring your crabs or whatever, you hit them with a wooden mallet to open them up and eat. When you are done they wrap up the mess in the newspaper and start over. Yes, you can make a mess and eat with your hands.

I really like this place. It is a big place for birthdays. Here is why. When they bring out the birthday cake with the sparklers on it, the entire crowd starts banging their wooden mallets on the picnic tables and then everyone sings Happy Birthday (around 300 people). Then everyone starts banging away again with their wooden mallets. Great fun.

Did I mention that Dotty and I got there at 3 PM and that they didn't open until 4:30 PM.

Foiled again.

Meanwhile, Dotty has this

"I am not here" 

look on her face. I am becoming more and more disconcerted. I make a mental note --go in bunkhouse, make that face disappear.

Dotty is barely saying a word and this has been going on for two hours.

I am basically discussing the craziness of Wolfie's being closed, and Arthur's not being open yet -- with myself. Frankly, the edge of the cliff is in sight on this day. I am totally bent out of shape and at wits end.

We take the Interstate (faster) home and eat down the street.

My idea didn't work and for a time I was stymied.

Dotty and I would start living our lives as we always had.
I wrote those words right in the middle of my big pad and put a circle around it. Right in the middle of the page. I was doing this for maybe the twentieth time. And then, like it usually does, it happened.

I was writing words all around my circle: bright light, socialization, exercise, outdoors, people, friendly people, Banana Boat.

And that is how it started. I put together the combination of bright light, exercise, socialization, wonderful, friendly people and I brought Dotty back into the world.

Little by little I should say, not all at once.

Dotty and I would start living our lives as we always had.
The decision was both simple and complex. The easy part -- Dotty and I would start living our life. The hard part, coming to the understanding that there needed to be more then just Dotty and me.

I had to find a way to put Dotty in situations that were cognitively, socially, and communicatively stimulating.

The Banana Boat was the first answer. Bright light, lots of friendly people, and you can eat with your hands. It worked better then I could have ever imagined. I wrote about it several times, you might enjoy this story.

A Wonderful Moment in Time--Mom at the Banana Boat

As time went on, and as we went out more and more, something interesting did happen. Instead of Dotty complaining that she wanted to go home, she started saying she wanted to stay out.

This might be hard to believe. We usually left home around 5:45 PM and it was not unusual for us to get home after 11 PM. And just so we can be clear on this, it was Dotty that wanted to stay out. She did not fall asleep, she did not go into a shell, and she was yakking away.

In the place readers would often about how lucky I was because Dotty could do so many things even though she was living with dementia.

It wasn't easy getting Dotty to do things. It was not easy to get her to cooperate. And it took quite some time before she really started to enjoy our routine.

I understand the majority of the readers have not read about my own metamorphosis as an Alzheimer's caregiver, my construct of Alzheimer's world, or how I learned step by step over many years how to cope and communicate and in a world filled with Alzheimer's disease.

Maybe I was lucky. Maybe I was fortunate. Maybe it was all the smart, wonderful people I met along the way.

Or maybe, just maybe, it is because where many people see suffering, or many people see a person without the ability to do things in they way they use to...

I saw my mother in the way I always had .....Dotty was the same person I had known for my entire life ..... We are continued to live our life in the fullest way possible ..... While there were times that somehow seem horrific, there were times that were also wonderful ..... Quite frankly, Dotty never stopped amazing me ..... I learned one of the most simple lessons of them all ..... Dotty was capable of doing more, much more, then I imagined during those two horrific years when I was a novice Alzheimer's caregiver.

My mother, Dorothy, did not want to do anything for the longest time.

The first word out of her mouth was No.

She had that dull, I am not here, look on her face for years. It was killing me, breaking my heart. I decided to try and do something about it.

Once we got started and started moving in the right direction, everything more or less fed on itself.

It started when I was shocked and pleasantly surprised to learn that Dotty could do more in a gym than anyone could have ever imagined. This woke me up. Put the idea firmly in my head that she was capable of more then I had ever imagined.

It continued when I noticed that exercise, bright light, and socialization changed that dull, I am not here look, into a look that is more like yours or mine. Changed her from a negative person, into a a positive person.

It continued as I observed that Dotty could in fact be more lively and "more there" if I helped her to get there in a very positive way.

In closing two things.

My mother still said NO most of the time. I learned this not a meaningful word in Alzheimer's World. So instead of listening to her, I just stuck my hand out and guided her. It worked wonderfully well.

It is really up to you. I know you can do what I did, or something similar,

and I hope and pray that you will.

My name is Bob DeMarco, I am an Alzheimer's caregiver.

We lived our life one day at a TIME.

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Embracing the reality of someone living with dementia

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