Why Do Alzheimer's Caregivers Torture Themselves?

For several years, I tortured myself psychologically and emotionally. To this day I look back and ask myself, Why?

By Bob DeMarco
Alzheimer's Reading Room

Saint Genesius

Alzheimer's is a sinister disease. It robs the patient of the ability to remember, to think, concentrate, and frequently affects mood and behavior in a negative way.

Alzheimer's disease (AD) eventually robs the patient of the ability to do things we take for granted -- like buttoning a button.

Alzheimer's often robs patients of the ability to say "yes", so instead they say what comes easiest -- No.

These new and often bizarre changes brought on by Alzheimer's can feel like torture to an Alzheimer's caregiver. This explains in part why a large fraction of caregivers, up to 40 percent, suffer from depression.

The other day I answered a question by saying, "its the job of Alzheimer's to torture you".

Later on as I thought about those words, I was surprised that I used the word "torture". Surprised until I remembered that I once thought, "Alzheimer's is trying to kill me".

Alzheimer's kills the brain of the person living with Alzheimer's. It will also try and kill the spirit of the Alzheimer's caregiver.

Continued on the Next Page

Alzheimer's Caregiver Lament -- I can't take her out because she eats with her hands

By Bob DeMarco
Alzheimer's Front Row

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The positive effects of socialization, initiative, and motivation on the part of Alzheimer's sufferers and their caregiver should not be overlooked. I believe these are as important as the medication......

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.

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.

By Bob DeMarco

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.

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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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I am an Alzheimers caregiver, I am the One, and if you are here you are not Alone.

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 lives one day at a time.

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. The Alzheimer's Reading Room is the number one website on the Internet for news, advice, and insight into Alzheimer's disease. Bob has written more than 800 articles with more than 18,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, Alzheimer's Reading Room

Alzheimer's: A Wonderful Moment in Time--Mom Dances

Wonderful people.

I have a vivid image of the look on mom's face and of us dancing. I will have that image in my mind forever. This is the kind of moment that really knocks home to me why I am here with mom. Moments like this help keep me energized and focused.

My name is Bob DeMarco, I am an Alzheimer's caregiver. My mother, Dorothy, now 93 years old, suffers from Alzheimer's disease.

One of the biggest problems I face as a caregiver is keeping my mother socialized. If it was up to her she would sit around all day in the dark, rarely speaking. If you have experienced this as a caregiver, you know how really disconcerting this can be.

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About three years ago, I decided to take my mother out to the Banana Boat in Boynton Beach. The Banana Boat is an outdoor restaurant on the Intercoastal Waterway in south Florida. The "Boat" has an outdoor restaurant and an outdoor bar where you can eat and listen to live music. Since my mother rarely speaks when we go out to dinner, I decided we would sit at the bar and eat. I was hoping mom would benefit from being around people; and that, she would benefit from seeing people interact with each other. I chose an this outdoor venue because it has lots of bright light; and, bright light has a very positive effect on my mother's attitude and behavior.

When it came time to eat, my mother ordered chicken wings and french fries--this has always been one of her favorites. I felt a bit of joy when the food came and my mother's eyes almost popped out of her head when she saw--a big basket of french fries. She was delighted. Somehow these moments are becoming more and more important to me.

We had a very good time that night and I decided to do it the next Friday night. Pretty soon we were doing it most Friday nights.

After a few weeks, women started to come over and talk to us. The attraction was an older man with his elderly mother. They wanted to tell us how nice it was to see us. Keep in mind my mother is 92 years old. When they learned my mother was suffering from Alzheimer's disease they became sad. Fortunately, it didn't deter them from coming up and talking to my mother. I am grateful for this.

Soon both women and men were coming over to talk. This was working out better than I had ever imagined.

This new activity at the Banana Boat included: exercise, bright light, and lots of social interaction for both mom and me. I am always trying to find ways to keep "us" socialized. If you are an Alzheimer's caregiver you understand the importance of getting out and around. It is a good mental health break for both the person suffering from Alzheimer's and their caregiver.

The Banana Boat is the kind of place that attracts many of the same people week-in-week-out. Since we go around 6:30 we catch the happy hour crowd many of whom stay until 8.

After a while, a small group of people started saving a chair for my mother--they were expecting us. The first time we missed a Friday, one woman asked for our phone number and told me they were worried about "mom" when we didn't show up. Now we call to let them know when we can't make it on a Friday night.

As time went on, our little group of friends started to get bigger and this turned out to be a "God send". Each week, one by one these wonderful people come up and start talking to my mother. She really enjoys this and her attitude perks up right away. They treat her just like everyone else and talk to her like she is one of the gang. This year a group got together and took my mother to the casino to play slot machines on her birthday. I cannot put into words how much this meant to mom and me.

My mother loved to dance. So, each and every week I asked her if she wanted to dance. Our new friends would also ask mom to dance--men and women alike. I could tell mom wanted to dance but she always said--no. Mom is no longer confident around crowds or people she doesn't know. While her instincts tell her she wants to dance her brain is sending a very different message. I can tell you mom was never shy about dancing and she is a good dancer.

I repeatedly asked mom if she wanted to dance. She repeatedly said, no. One night when we were getting ready to leave, and as mom stood up, I started dancing with her right on the spot. She was shaking it a little bit and had a big smile on her face. By the time we were done, people had tears in their eyes. and smiles as big as big could be. Wonderful people.

I have a vivid image of the look on mom's face as we danced. I will have that image in my mind forever. This is the kind of moment that really knocks home to me why I am here with mom. Situations like this really help remind me how wonderful things can be; and, when the caregiving gets difficult I remind myself of moments like this.

I can assure you it was really a wonderful moment in time.

Bob and Dorothy live in Delray Beach, Florida.

Bob DeMarco is an Alzheimer's caregiver and editor of the Alzheimer's Reading Room. The Alzheimer's Reading Room is the number one website on the Internet for advice and insight into Alzheimer's disease. Bob taught at the University of Georgia, was an executive at Bear Stearns, the CEO of IP Group, and is a mentor. He has written more than 700 articles with more than 18,000 links on the Internet. Bob resides in Delray Beach, FL.

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