Nov 16, 2009

The Metamorphosis of This Alzheimer's Caregiver -- I Wish

Once I entered Alzheimer's world I did learn something fascinating -- my mother is full of feelings and emotion. I learned that I could connect with her....
My name is Bob DeMaro, I am an Alzheimer's Caregiver. My mother Dorothy, now 93 years old, suffers from Alzheimer's disease. We live our life one day at at time.

By +Bob DeMarco 
+Alzheimer's Reading Room 

This is not a lament. A lament is an expression of regret or grief.

Honestly, I don't have any regrets when it comes to caring for my mother.

However, I often wish. I wish I had known more about Alzheimer's when the diagnosis came in. I wish I knew what to do from day one. I wish....

I now know there are lots of things I could have done to improve the quality of life of my mother. I could have focused sooner, years earlier, on her feelings and capabilities.

Instead I focused on learning about Alzheimer's disease, the science, treatments, and how to deal with this new crazy behavior.

I guess you could say in the beginning, I was trying to get a frame of reference that would allow me to understand and to take control of the situation.

I guess what I am trying to say here is -- I wish I knew more about Alzheimer's before it came into our lives.

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I now know I was making mistakes. They were not intentional, but still mistakes.

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The first big mistake I made was doing everything for my mother. This one example sticks out.

For as long as I could remember my mother was buying lottery tickets --cash three, fantasy five, mega-money, and those crazy scratch off tickets where you win or lose instantly.

They hold the Cash Three lottery in Florida everyday. So, every day, year after year after year, my mother would go to the store and buy her cash three lottery ticket.

I remember laughing when she would all of sudden disappear without a word -- just disappear -- and go get her lottery ticket.

This buying habit was not limited to Florida. When she would come to New York for the summer she would do the same thing. Go to the store and buy her favorite number every day (wanna play it?, here you go 8-1-3).

I thought it was crazy buying those lottery tickets. I am not a big fan of the lottery. Here is what I missed. It was important to her. It was a part of the pattern of her life. It was a form of entertainment, exercise, and a release from the boredom of day in and day out being elderly.

It was important to her.

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I took the lottery away from my mother.

It takes a lot of time and effort to go to the store and buy 8-1-3 every day. I didn't enjoy it.

So I came up with a simple solution. I would buy the number once each week for seven days. No more trips to the store every day -- we had the number.

I mentioned up top that my mother also played fantasy five (two days a week), mega money (two days a week), and the lottery (two days a week). She also bought scratch offs daily.

I decided it would be easier and smarter to buy all those tickets simultaneously -- one time a week on Saturday.

I had my mother's clear plastic envelope, the cards all ready filled in, and ready to go. All I had to do was hand the cards to the girl at the store, ask for the scratch offs, and hand her the money. 35 bucks.

Then one day Alzheimer's taught me a lesson I will never forget.

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Saturday came and I took my mother into the store with me to buy the lottery tickets. I had gotten into the habit of doing this on my own. But not on this particular Saturday.

I handed my mother the plastic envelop with the tickets and the money and said, go get the lottery tickets. She looked at me like I was the the man on the moon. She had no clue what to do.

She said, what do I do? I said go over there, pointing to the counter, and get the lottery tickets. She didn't budge. Instead she said, where?

I walked her over near the counter, pointed at the woman behind the counter and said --give her the envelope. She didn't budge.

I then took her hand, walked up to the counter and did it with her.

Next time around, same story.

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This was the second time I had been hit in the back of my head with a tomahawk by Alzheimer's.

It hurt. It sent me into a tailspin. I felt disoriented for days. I felt like I was falling into the Alzheimer's black hole. I started thinking this is the end.

Then I learned an important lesson.

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Soon we went to our doctor -- Dr.Chiriboga -- I told him about the situation and my feelings. He asked me if I was doing everything for my mother -- I told him yes.

It was at this point that he explained to me that if I continued to do that soon my mother wouldn't be able to do anything. He explained to me how she wouldn't be able to relearn how to do things.

He said these very important words to me -- You are the ONE.

He explained how I was the one and I was the one who knew what my mother could and couldn't do. He advised me to let her do anything that she could do, and not to let anyone deter me with their criticism.


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I started to learn to let my mother do things. I began to realize we could do more than I had been imagining.

I began to learn about the importance of keeping my mother in the real world. I started to learn that I needed to keep my mother in the world by living our life as we always had.

I started to learn the path into Alzheimer's world.

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I now know and understand this -- you cannot restore the abilities of a person with Alzheimer's once they lose an ability.

You cannot teach a person suffering from Alzheimer's how to behave correctly, or the way you want them to behave.

It is a waste of valuable time and cognitive energy to try and impose your will or own standards of behavior on a person suffering from Alzheimer's.

Sadly, I learned that many, maybe most, Alzheimer's caregivers try and do exactly that --change what cannot be changed. Do what cannot be done.

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I learned to let my mother do as many things for herself as she could. Even if it appeared difficult or taxing.

I learned to let her make the spaghetti sauce and meatballs even though it wore her out.

When she couldn't stand up long enough to do all of it, I pulled a chair up near the oven and let her supervise me while I did the work (turns out this is one wonderful and rewarding experience).
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.
In the old days, when my mother would say put in more of this or that, I would correct her and say mom we already put that in. As I grew as an Alzheimer's caregiver, I learned instead to put a little bit in -- just a little bit.

It is a waste of time and cognitive energy to repeatedly correct a person suffering from Alzheimer's. Life goes better once you learn to go with the flow of the communication.

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Little by little I learned how to go into Alzheimer's world, instead of trying to drag my mother into my world. Little by little.

Sooner or later you have to enter Alzheimer's world if only for your own peace of mind.

I wish I had realized this sooner.

It is not easy to enter Alzheimer's world. It takes time, patience, practice, and a determination to get there.

Once I entered Alzheimer's world I did learn something fascinating -- my mother is full of feelings and emotion. I learned that I could connect with her.

I learned one of the most important lessons I ever learned on my long trip down Alzheimer's lane -- this is the person I always knew. I also learned it was up to me, not her, to make the connection happen.

I wish I had let my mother do more. I wish we had started living our lives as we always had -- sooner.

Better late than never they say.

You?








Original content Bob DeMarco, the Alzheimer's Reading Room