Feb 8, 2014

Alzheimer's Survival, My Big Mistake, and the Spaghetti Sauce

I am sitting here thinking about and remembering how completely overwhelmed I felt when my mother was first diagnosed with Alzheimer's disease.

When Alzheimer's strikes it sends your life into a tailspin that is hard to describe. It is just overwhelming.

Bob DeMarco
Alzheimer's Reading Room

Alzheimer's Survival | Alzheimer's Reading Room

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What is going to happen to the person living with dementia; and, what is going to happen to the their caregiver?

Some say, nobody survives Alzheimer's. I disagree and I believe I proved them wrong.

These two articles written by Pamela Kelley and Judy Graham

make my case I believe.

I made one big mistake very early on in my caregiving career.

I took the lottery away from my mother. 

I started buying all the lottery tickets for her. Guess what happened?

Before I knew it, she forgot how to buy the lottery tickets.

When I first realized this I was heart broken. I was heart broken because I assumed that any minute now she was going to forget everything.

This everything included me.

This happened seven years before she died and went to Heaven,

I learned two very important lessons.

First, once a person living with dementia forgets how to do something it is unlikely that the ability can be restored  once they lose the ability.

Second, I learned this piece of advice.

Just Let Them Do It

Changing Patterns of Behavior in an Alzheimer's Patient

While lamenting my sad sack life (at the time) to our wonderful personal care doctor, I received one of the most important pieces of advice I ever received as an Alzheimer's care partner.

He explained to me that if I continued to do everything for my mother, soon she wouldn't be able to do anything. He explained to me how she wouldn't be able to relearn how to do things.

He then told me that I was the only one that knew what she could do, so it was up to me to let her do it.

I took his advice.

I learned how to become a Guide.

Dotty's Guide.

There are people that think I went overboard. Not so much because she had Alzheimer's, because she was old.

Here is a not so secret, secret. My mother wanted to do all these things I helped her do.

For example, she didn't want to be put on a walker. So, I assisted her and we walked together -- very slowly I might add.

I don't remember how many times someone told me I should get her a walker. Hundreds for sure. Hundred of people that didn't know us by the way.

What was more important?

What they wanted? Or, what my mother, Dotty, wanted?

Here is another thing I learned.

I learned how to make one of the most delicious spaghetti sauces and meatballs you ever tasted.

Who taught me? 

Dotty. She taught me long after her diagnosis.

At first, I was her assistant. I helped her. Did big things -- like opened up the cans of tomatoes.

As time went on, about half way through making the sauce, Dotty would get too tired to do it. So, I pulled up a chair near the stove and she told me what to do.
Put in more water you can't hurt it. Put in more cheese. Bobby put in some oregano. Put in more water you can't hurt it.
Put in more water. I thought it was crazy at the time. But Dotty was right. You can't hurt it.

Now a days, every time I make the sauce I can hear Dotty saying in my head, put in more water you can't hurt it. I laugh out loud and put in more water.

I learned how to make the sauce over several years as her assistant. Several years while she was living with dementia, I might add.

You might enjoy this little fact. I am the only person in the world that knows how to make Dotty's fabulous sauce. She never taught anyone. In fact, she wouldn't teach anyone even if they asked. She might write something down on a card for you. Value, worthless.

I guess you could conclude that a person living with dementia can become more opened minded.

Or, maybe she just trusted me.

Custom Search - When Dementia Patients Don't Eat

We did reach the point where Dotty could no longer make the spaghetti sauce. Then we reached the point where she could no longer advise me.

Then we reached the point where even though she didn't make the sauce, or advise me, she told everyone she made the sauce.

In many ways she was right. I heard all the instructions in my head as I was making the sauce.

Dotty could still eat the spaghetti. She could still twirl in on to the fork. Yeah, she used her fingers to assist at times.

I figured around 2008 that it wouldn't be long before Dotty could no longer twirl the spaghetti. She was still twirling away much to my amazement in 2012 a couple of months before he death.

Over the years with Dotty I learned quite a bit from her.

Put in more Water.
You can't hurt it.
A person living with dementia is capable of more than we can imagine with our own brains.

And of course,

Just let them Do it.

Don't forget, a person living with Alzheimer's is still full of feelings and emotions. Don't believe it when people tell you otherwise. It is there power to express that is stunted by dementia, not their ability to feel.

Remember this. At some point you are no longer the assistant.

You are now the chief cook and bottle washer.

Do a good job, the best job you can.

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