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Sunday, September 4, 2011

Alzheimer's Heaven or Hell ?


There is no blame in Heaven. No blaming Alzheimer's. No blaming the person suffering from Alzheimer's. No blaming your unlucky, uncertain fate. No blaming yourself. You are made of flesh and blood. We all are....

By Bob DeMarco
Alzheimer's Reading Room

Note: I actually wrote this a few years ago. You will have to work through the first part to understand my point(s) which come at the end.

Lately, I find myself thinking more and more about communication and Alzheimer's. In fact, I am starting to think about it incessantly.

I find myself thinking about my 8 plus years of studying and thinking about communication. I say 8 plus because it all started at LaSalle College High School in Philadelphia. Later it became more formalized at the Pennsylvania State University (4 years) and the University of Georgia (4 years).


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There is no doubt in my mind that the most important part of my education took place at LaSalle.

I was fortunate to attend LaSalle when the education was tough, and the educators were demanding.

Compared to LaSalle, undergraduate study at Penn State and graduate study at Georgia were a piece of cake.

I can still remember vividly the day the acceptance letter came in from LaSalle. It was a Saturday morning. I opened it and read and received the news -- 5500 students from all over Philadelphia and the Philadelphia area had taken test. 140 students made it into the class of 1968.

This was the second time I was a ONE. 13 years old.

___________________________

As soon as I realized what had happened I started running. I ran as fast and as hard as I could. I was running the half mile to the Barber Shop -- my father was getting his hair cut. When I got there I was so out of breath I couldn't talk, so I just handed my father the acceptance letter.

That was a very good day. A happy day. I was happy because I also got to share the news with the barbers. They all knew me. They had given me my very first job -- when I was nine years old. I swept up the floors and cleaned the barber stands at night after they closed for the day.

Soon, the entrepreneur in me started to come out. They had a shoe shine stand that no one was using. I convinced my father to take me down to Frankfort Avenue in Philly where I bought all the pro shoe shine brushes and equipment.

A shine was a quarter. A spit shine was 35 cents. Sometimes you received a tip. I worked all day on Saturday's shining shoes. I still remember the first time a customer handed me a buck. He was wearing a suit and a tie.

How big was a buck? A Coke cost a dime, a Hershey bar cost a nickel.

By the age of 12, I had over 3,000 comic books. I still remember the day when a comic book went from ten cents to 12 cents. Shocking.

___________________________

I remember my first day at La Salle. You go to the book store and buy your books. When you get done you can't believe the pile of books. Maybe I should have gone to Father Judge.

I was proud when I learned I made it into the advanced Algebra class. Two homerooms made it into the advanced class. The other five classes had Algebra. I should have known something was askew. I had two yellow Algebra books, and my best buddy had one blue Algebra book.

It got worse. I soon learned that not only was I in the harder Algebra class, I had the dreaded Mr.O'Connor. We, the best and the brightest, learned a harsh lesson at the end of the first major grading period -- the first quarter. No one made a grade above 79. This meant no one made the honor roll.

I still remember my father saying -- we don't care what grade everyone else made. We care about your grade. I learned a good lesson -- harsh as it seemed at the time. You can blame, or you can accept the blame.

For some reason right before the fourth quarter started I decided to start attending the ninth period. At La Salle there were eight periods in a day. Then there was the ninth period. This was Mr. O'Connor's after school class.

It might not sound like much. But, in those days there was no public transporation that reached La Salle. La Salle is in a suburb right outside of Philadelphia -- Wyndmorr. I lived all the way on the other side of Philadelphia -- Somerton. If you missed your ride you had to fend for yourself.

To get home I had to hitch hike all the way down Cheltenham Avenue to 2nd Avenue. Two buses later and a half mile walk and I was home. On a bad day it took over two hours.

The ninth period did pay off. At the end of the school year, on the very last day, they assemble all the students -- seniors, juniors, sophomores and freshman. They give out all the awards. Freshman go last.

When they called my class they said first honors -- Robert T DeMarco and Paul Moser. Two out of the twenty of us made first honors.

When I went back to my classroom to pick up my first honor card my class booed me. Lovingly so.

The first time I told this story to my brother he said -- they booed you. He said it before the words came out of my mouth. He was a graduate of La Salle College High School.

I learned one of the most important lessons of my life that year. The importance of the ninth period.

When other people went home from work -- I stayed. Instead of eating ham and cheese on rye for dinner, I was hard at work. The ninth period paid off.

Many of you hear me talk about the Alzheimer's bunkhouse or the Bunkhouse. This is one of the places I go during the ninth period now.

___________________________

At La Salle you took typing every day for an entire year -- for 45 minutes a day. This is to prepare you for the hundreds of term papers you are going to write in the next four years. It took me 25 years before I realize how important it was to learn how to type. This is when the Internet and email came into being. I found out I could still type. And fast.

I had other people type my papers in college and grad school. I often wonder what it would have been like to have a PC in high school and college, instead of the now ancient typewriter.

___________________________

When I was in tenth grade at La Salle I made second honors. They call out your name and give you the card in your homeroom. Second honors is a blue card, first honors you get gold.

When I went up to receive the card, Brother Emory dropped it on the floor right in front of me. I left it there and went back to my seat. He glared at me and told me I had ten seconds to pick it up. Brother Emory was fearsome looking.

I walked up to pick the card off the floor. I kept my eyes on him and never turned my back.

At the end of the homeroom period he told me to come and see him at lunch time.

To say the least I was worried.

When I met him he asked, how much do you study? I told him not much. I study the night before the tests.

He then proceeded to tell me that I was going to burn in Hell for wasting my talent. I had to think about that for a day or two. I finally concluded he was wrong.

___________________________

During the first two years of caring for my mother, I wondered many times -- did I go to Hell. Was Brother Emory right? Is Alzheimer's Hell on earth.

If Hell is worse than Alzheimer's or Alzheimer's caregiving, I don't want to go there.

___________________________

During the last six years I have gone to the ninth period more times than I could have ever imagined. I spent more time in my Bunkhouse than I could ever have imagined.

Unlike most people that see problems, I see solutions. This is the way I have always viewed life. People come to me all the time with their problems. Problems make me feel calm. They make me think, and they make me feel. For me this is a pleasant feeling. The calmness.

___________________________

People that don't know me well think I am a rabbit. I talk fast, I walk fast, and it seems that I am going 100 hundred miles an hour all the time. I am not a rabbit. I am a turtle.

I plod along at my own pace. When I am at my best I have my eye on the finish line. I plod along slowly but surely as I observer. One by one I pass all the rabbits.

To understand Alzheimer's you have to be a turtle. You have to think about one problem at a time. You need to come to an understanding of the problem and then the solution. The problems never stop coming -- one after another. You can only solve one problem at a time.

Once you get in the problem solving groove things start to change. You experience the wonderful feeling of accomplishment. This feeling of accomplishment starts to trump all the negative feelings that come with Alzheimer's. Instead of life that is filled with negativity, you start to live a life that is filled with positive energy.

I hope you get there. It is kinda overwhelming and wonderful.

___________________________

Alzheimer's brings with it a feeling of chaos. You might feel like you are spinning out of control. You might feel your entire body vibrate. This is not a good feeling. It is disconcerting. I felt it, so I know. I wondered is this Hell?

You have to find a way to understand and deal in a world filled with chaos. A new different world -- Alzheimer's World.

You get to decide. Heaven or hell?

Let me say this as clearly as I can -- you get to decide. Choose.

___________________________

On the path to Heaven you need to stop, think, and feel.

As a caregiver ask yourself a first simple question, if not you who? If you don't do it, who will?

There is no blame in Heaven. No blaming Alzheimer's. No blaming the person suffering from Alzheimer's. No blaming your unlucky, uncertain fate. No blaming yourself. You are made of flesh and blood. We all are. Don't blame.

As a caregiver you need to ask yourself. What am I accomplishing? What did I accomplish today?

Few people will get the opportunity in their life to accomplish what you are accomplishing. They won't get the opportunity to think and feel life the way you do. They won't get the opportunity to feel their heart growing bigger and stronger each day.

They might never get the opportunity to care for an individual the way you care. Care.

___________________________

At some point you need to come to a simple realization that what you are accomplishing gets you on the first honor roll -- the gold card.

No matter what happens in your life in the future you have that card to hold and to use.

Do not pass go -- go directly to Heaven.

___________________________

Brother Emory was right and he was wrong. You can go to Hell. But it is not up to him or anyone else to decide where you are going.

It's up to you.

When you are feeling sad, lonely, or ready to give up -- go into your bunkhouse. Think about your role in life as a caregiver. Think about what you are accomplishing. Think about the wonderful person that you are. Think about the wonderful safe, secure environment that you are providing for another human being.

Look at yourself in the mirror. Ask yourself -- if not me, who then?

Keep looking. Say these words. My name is (fill in the blank), I am an Alzheimer's caregiver. My (fill in the blanks) suffers from Alzheimer's disease. We live our life one day at a time.

Let me know how it feels.




More Insight and Advice for Caregivers


Creating Moments of Joy: A Journal for Caregivers, Fourth Edition
 
The 36-Hour Day A Family Guide to Caring for People with Alzheimer Disease


Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 2,910 articles with more than 652,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, Alzheimer's Reading Room