I came to a clear understanding that I was an Alzheimer's caregiver -- by Choice....
Lately, I am writing about my metamorphosis as an Alzheimer's caregiver.
Many of the successes I had were a results of observation, thought, trial and error. Some of my ideas came to me after talking with other Alzheimer's caregivers.
Some of the techniques I developed took months or years before they started to work effectively.
It isn't easy. Sometimes I get the impression that I might be making it sound easy on the Alzheimer's Reading Room. That is not my intention.
I decided to go back and read some of the articles I wrote in previous years. I was not surprised to learn that my attitude and use of words was very different in the past. I was clearly more stressed and less focused.
I just wanted to scream, STOP Eating! I wrote this article, included below, a long time ago. If you have been here with me on the Alzheimer's Reading Room for a while you will notice the difference in the tone of my writing. Look at the different kinds of words I was using.
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This is a revisit of an article I wrote several years ago. The words in italics are new and included to add perspective.
I just wanted to scream, STOP Eating!
In the beginning, one of the things that drove me crazy was my mother’s constant eating. My mother would just eat and eat and eat.
Even though she was overeating, she would tell her friends on the telephone that she had not eaten a thing all day. And, this was at 4:30 in the afternoon.
It seemed that the more she ate the more she denied eating.
It only continued to get crazier and crazier. My mother who was a good 30 pounds overweight told her friends I was trying to starve her. The friends believed her.
They called to ask me why I wasn’t feeding my mother. They couldn’t accept she was suffering from Alzheimer’s disease -- so they believed her. When I asked them if it looked like she was being starved they just did not know how to respond. They just got confused. I invited them to come over and look around the kitchen to see if we had locks on the food (note: I had a much different attitude in those days).
It might not be easy to envision this but my mother could eat a five course meal, and then turn around and eat again in 30 minutes.
This happened for the first time on Easter Sunday. We went to a buffet style brunch at the Delray Beach Country Club. My mother had everything that day ranging from a ham and cheese omelet, to turkey, potatoes, and even a couple of desserts.
When we arrived home she changed her cloths and ate a large bowl of cereal with a banana. I was thinking to myself that I was going to be unable to eat anything for the rest of the day.
Seeing her eating the cereal drove me crazy, literally up the wall. This was becoming a common experience for me. It left me angry, confused and completely out of sorts.
I just wanted to scream, Stop!
I am not talking about a large woman. Before the Alzheimer’s really started taking hold, I doubt that my mother's weight fluctuated more than five to seven pounds over the previous 15 years. She wore a size 6-8 all those years.
Now, it was not unusual for my mother to eat at 11:30 at night, to get up out of bed and eat at 1:30 AM, and get up out of bed and eat at 4.27 AM.
She would eat breakfast at 7 AM and again at 9. She would eat lunch, several snacks.
Everyday at 4:30 in the afternoon, after I reminded her that we would be eating dinner in half an hour, she would maker herself a sandwich and eat it.
You could set your clock to the time of day. I could go out into the kitchen and just wait for her, or better yet just perk my ears up at 4:30, and listen for the refrigerator to start beeping. Later she would have dinner and begin the cycle all over again beginning around 9 o’clock at night.
This pattern of eating was driving me crazier and crazier. My tiny 5 foot tall mother had ballooned to 152 pounds. I knew this was dangerous to her health (she was developing visceral fat and this can be life threatening). She could barely walk to the mailbox and back. It was causing her to become more and more sedentary. It was a vicious cycle. I didn’t know what to do or where to turn. (Note: I eventually knocked 18 pounds off her mostly through exercise in the gym).
Finally, I decided to get us into the gym for some exercise (my own weight had ballooned all the way up to 206).
As I was thinking about how I might accomplish this mission we received a flyer in the mail from my mother’s healthcare provider (Humana). It was almost as if I was receiving an answer to a prayer: the Silver Sneakers Program.
The flyer announced that on January 1, 2005 all Humana Gold Plus members would be eligible for a free membership to a gym, and enrollment into a exercise program specifically designed for Senior citizens.
I enrolled my mother into the Silver Sneakers Program (SSP) and bought myself a two year membership to Gold’s Gym in Delray Beach. Since the SSP was offered at Gold’s this allowed us to go to the gym and to work out at the same time. And this is where it happened.
Update to the old article:
This was the beginning of the official exercise program. Prior to this we had been going over to the clubhouse to exercise. We did not maintain a schedule.
When we joined the gym, my mother was in the Silver Sneakers program. Later she migrated into the gym and we started working out together. This included some weight training.
This is when I first observed that exercise had a dramatic effect on my mother's mental attitude and behavior (in the gym). This observation lead me to conclude that there was more going on in my mother's brain that I had previously considered.
My observations about the exercise lead me to try new and different things with my mother. Once I could see that we could accomplish many things that I thought were impossible, I began to systematize my efforts.
I learned from a wonderful couple I met in the gym that my mother's eating problem was not unique -- they had experienced the same problem their mother.
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.As we had our small little successes together, I started to get more confident and more determined.
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.
See -- The Metamorphosis of This Alzheimer's Caregiver (Part One).
Despite the fact that the Alzheimer's was eating away at my mother's brain and that she was deteriorating mentally -- we were able to begin accomplishing many things together that would have seemed unlikely or impossible to many Alzheimer's caregivers.
We started living our lives as we had before the diagnosis of the Alzheimer's came. This was a major leap -- it was not planned or expected. It just happened.
I did get some important help and advice from others.
Some of this came from complete strangers that I ran into. They had already taken the round trip ride with Alzheimer's. I was fortunate. Most of them encouraged me. They gave me my most important lessons.
I learned that I was not alone.
I learned that I was the one and it was up to me.
I reminded myself, if not me, Who?
I came to a clear understanding that I was an Alzheimer's caregiver -- by Choice.
My name is Bob DeMarco, 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 a time.
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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 4,700 articles. Bob lives in Delray Beach, FL.
Original content Bob DeMarco, the Alzheimer's Reading Room