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Saturday, March 26, 2011

The Metamorphosis of This Alzheimer's Caregiver


I decided we would identify each problem that comes with  Alzheimer's disease and tackle it head on.

By +Bob DeMarco
+Alzheimer's Reading Room 


The Metamorphosis of This Alzheimer's Caregiver
To start, I am a curious person. So, when I want to know more about something I really dig in. Take it apart and put it back together.

I'm fortunate in two ways. I picked great parents, and God and my parents blessed me with an ability to read fast, and absorb information.

My brain is wired to view everything as a system. This allows me to see all the parts when I encounter something new, or when I am trying to figure things out.

When focused, I am goal oriented.

When I first learned my mother was suffering from dementia, I quickly learned you could put everything I knew about dementia and Alzheimer's in a thimble.

So, I started reading. The more I learned the more I wanted to know. I learned a great deal about Alzheimer's disease--including the science. It helped me understand a very mystifying disease. It helped me to put a frame around something that is difficult if not impossible to describe.

At the beginning of my travels with Alzheimer's, I had to get over the shock when the diagnosis of dementia came. That took what seemed like a minute, but it was over a year.

Once I could think clearly, I decided I needed a plan. Some of it was easy--exercise, nutrition, and creating a stable environment. Finding a great personal care physician was a bigger challenge. I'm thankful I somehow realized how important this decision would be for us.

Exercise is a critical component of the care-ee, care-er paradigm. I have written often about how my mother is often "dull" and can barely walk as we head to the gym. And how, she undergoes an almost impossible to believe physical, psychological and emotional transition by the time we leave the gym.

I have not spent as much time explaining the importance of exercise for the caregiver. In order to function as an Alzheimer's caregiver you are going to need an enormous amount of energy.

The only way I know to increase the energy level is with vigorous exercise and good nutrition. As a caregiver, you need to understand that more than 40 percent of Alzheimer's caregivers suffer from depression. Exercise is an important component in the battle to keep depression away.

I am asked daily how I care for my mother, and attend to this blog. Well, I have a 17 hour day, no naps. You need lots of energy to keep that kind of schedule. I guess it is not well understood but you get more energy, not tired, when you exercise--hard.

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I continue to learn more and more about Alzheimer's each day. I continued reading and talking to those who came before me. Over time, I realized how difficult it was to find information that really helped me do my day job -- living Alzheimer's from the front row.

Frankly, I read thousands of articles and all the books. I did get a good piece of information here, and a good piece of information there. This took years. There really is no one single place to turn to to get the kinds of on the job information you need to get through the day as an Alzheimer's caregiver.

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When I finally learned that I was an Alzheimer's caregiver; I realized I needed to define my role as a caregiver. Thinking of myself as a caregiver made me feel good--it made me feel good about myself. My first blog was called, I am an Alzheimer's caregiver. I used that blog to start getting a handle on the enormous amount of information I was acquiring, and to define myself. I guess you could say from those seeds came the Alzheimer's Reading Room.

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One day, I met two wonderful people--by chance. They listened to me, shaking their heads up and down (saying yes nonverbally). When I was done venting, they told me about their own round trip ride with their mother who suffered from Alzheimer's.

That day I learned one of my important lessons, I was not alone. This realization lifted a thousand pound weight off my back. It allowed me to really start thinking more clearly about developing a plan to take care of my mother.

I already knew from my life prior to caregiving--in order to succeed you need a vision, a mission, and a plan to bring that vision to fruition. I started developing a vision of how I wanted life to be for my mother and me.

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Soon after encountering those two wonderful people that taught me I was not alone, I had a set back that almost sent me into the black hole--depression.

My mother had been buying lottery tickets daily for 20 years. Cash 3, Fantasy Five, Lottery. And, those crazy scratch off tickets. I got what I thought was a great idea. Instead of buying them everyday, why not buy all of them once a week. I started doing that on my own--for my mother.

Then the worst day ever came. I took my mother into the store. I handed her the plastic envelope with all the lottery cards and the money and said--go get the lottery tickets. She had no idea what I was talking about. She said where? I pointed--over there, she didn't move. I took her hand and walked her over to the counter. I said, go ahead. She said, what do I do? She didn't know what to do (this took place four and a half years ago).

At that point, I felt like I was being electrocuted. Later that day I started to feel disoriented. At home, I couldn't shake a feeling of helplessness.

I am a thinker, and was thinking about what I should do. But instead of a plan, I kept thinking we are near the end. She won't know me soon. She is going to be laying in bed, she won't be able to eat. All day and all night this was all I could think about. The stress was enormous.

I did feel like I was going into the black hole of depression. I felt myself fighting.

Then miraculously I learned one of the most important lesson of them all. You Are the One.

We were in the doctors office, the office of our wonderful doctor--Dr. Carlos Chiriboga. I was explaining to him what happened and how I was feeling.

He explained to me that if I didn't let my mother do things, she would forget how to do them. In other words, it was not necessary, nor was it a good idea for me to be doing everything for her.

He then stunned me. He said, You Are the One. You know what she can and cannot do--so if you think she can do it, let her do it. He told me I might get criticism, but not to let it deter me.

I went home and thought about this. Sure enough, the thousand pound weight was off my back (again). Once again, I felt empowered.

My new mantra became--I am an Alzheimer's caregiver, I Am not Alone, and I Am the ONE. I recite this mantra when I wake up in the morning, and before I go to bed. I look at myself in the mirror while doing this. I always smile.

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As time went on, I started to get a new vision. Soon, I started doing lots of things that were out of the box. Amazingly, just about everyone of them worked.

Imagine my 88 year old mother no longer going to the Silver Sneakers class, but working out with me in the gym. I can't tell you how many people--all women--that yelled at me, and told me to get my mother off the treadmill and on to a bike. Great in theory, and I had tried it. She would peddle for 15 seconds and then stop.

I learned to hold my hand up, palm out, when these people came at me, and not say a single word. I just looked them right in the eye. Until they walked away. I thought about what Dr. Chiriboga has told me--don't let anyone deter you.

I'm the one, and I knew my mother could walk on the treadmill even tough at times it looked like she was going to keel over. Then she would stand up straight and start walking. You might not believe this but around the six minute, 30 second mark every time she would start bending over like she was going to fall. At the 7 minute mark she would stand straight up and start walking. It happened every time for years. I guess it looks kind of ugly. To me it is all part of a pattern.

If you thought that was crazy then imagine the look on the faces of the people in the gym when I started putting my mother on the weight machines. Amazingly, my mother hates the treadmill, she loves the weight machines. She cannot wait to do the shoulder pulls, chest pulls, etc. She doesn't really like the leg machine.

By the way, after a while, one by one people started coming up to me in the gym and praising me. They usually say--you are a good son. Sometimes they want to talk to me. People that see us all the time, smile and talk to my mother. It all came together very nicely.

I still get the occasional person that wants to rain on our parade.

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I didn't realize it at the time but I was undergoing a real metamorphosis as a caregiver. In the beginning, the first stage, I was just trying to accept Alzheimer's. Get out of denial and get on with the important parts of caregiving.

Then one day--a couple of years in--I came to a realization--it was time to say NO to Alzheimer's. I decided to fight.

I decided I would not accept the crazy behavior, the incontinence, and I would not continue to live in a shell. Instead, I would find ways to change things.

First, we would go out in the world and resume living our life the way we had before the diagnosis. Second, I would find a new way to communicate with my mother. Third, I would identify each problem that comes with the disease and tackle it head on.

Change, not acceptance.

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One of the most important observations I made was that my mother had very well defined patterns of behavior.
  • How she walked on the treadmill,
  • How she spit venom at me with her words,
  • How she woke up at 1:25 AM, 4:30 AM,
  • How she wanted to start cleaning the house at 9:37 PM,
  • How when she would get mad at me, go into her room, then would come out of her room at 7:09 PM,
  • How Monday and Tuesday's were good days,
  • Wednesday the downtrend started into Thursday,
  • How she would go in here room and curl up into a ball on Thursday and not come out until Friday.
I started to wonder if I could change these patterns, and change them into positive patterns. I'll answer that question right here--Yes you can. I'll be writing about how I did it soon.

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Bob DeMarco
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 4,600 articles, and 349,000 links on the Internet. Bob lives in Delray Beach, FL.
Learn more about the Alzheimer's Reading Room Knowledge Base