FOUNDER OF THE WEBSITE: THE ALZHEIMER’S READING ROOM
When I finally figured out the I needed some knowledge I searched online and luckily the first thing I found was the ARR. For those of you who haven’t heard those 3 amazing letters I am talking about The Alzheimer’s Reading Room created by Bob DeMarco. I found Mr. DeMarco’s website at the lowest time in my life. I always describe it as being lost at sea and finally spotting a lighthouse. Here is my first blog post that describes where we were then The Days of
If you have questions about being a caregiver or about Alzheimer’s Disease/Dementia this should be your first stop. You will fall in love with Bob and his wonderful mother Dotty who passed away on May 25, 2012. Bob was the 24/7 caregiver to his mother for many years. He took what he has learned and decided to share it with the world. There are over 4600 articles dealing with these subjects on his website. He holds nothing back and ANY question you may have can be answered here.
The first article I read was “Communicating In Alzheimer’s World”. Bob’s explanation of communication DO’S or DON’TS with someone who has AD is just what I needed to hear. It opened my eyes to all of the many mistakes I was making while taking care of my mom.
He has generously agreed to answer some questions so I can share some of his vast knowledge with all of you:
DID YOU HAVE ANY EXPERIENCE WITH ALZHEIMER’S OR DEMENTIA BEFORE BECOMING YOUR MOTHER’S CAREGIVER?
I didn’t have any experience with Alzheimer’s and Dementia before my mother was diagnosed with probable Alzheimer’s. You could put everything I did know in a thimble. I will admit that I had bought into many of the stigma’s attached to Alzheimer’s disease. I did learn all of them are untrue.
WHAT MADE YOU DECIDE TO START SHARING YOUR EXPERIENCES?
I never intended to become a blogger or a speaker. It all started when our doctor told a neurologist at a major university that he had met “some guy who was taking care of his mother” he went on to say “I don’t know what he is doing but it is working”.
That neurologist called me and asked me to start writing about my experiences. He promised to get me readers (and he did).
After several months a retired editor from a major newspaper called me and asked me for help with his mother. Subsequently he said, “you are not writing about what you are telling me and you should”.
I decided to take his advice. Shortly thereafter, readers and subscribers started flocking into the Alzheimer’s Reading Room. I was surprised, encouraged and then hooked.
More than 5 million people have visited the ARR worldwide.
IS THERE ANYTHING YOU WISH YOU HADN’T SHARED?
I did have some reluctance at first. But after the advice from the editor I let it all hang out. I am an Alzheimer’s Caregiver myself, so I understand how caregivers might be thinking and feeling.
Some of the things I wrote about our experience are pretty graphic. Some of the articles were pretty funny.
Most importantly, I knew that my mother would have wanted me to do it. So there was no reluctance on my part to write about our life and experiences.
WHAT DO YOU FEEL WAS YOUR GREATEST SUCCESS AS A CAREGIVER?
I think about this question all the time. The answer is very long.
If I had to say one thing it would be that I completed my mission in a way I could never have imagined. My mother died and went to heaven peacefully and in her own bedroom. The goal from the beginning was to keep her at home. She did not want to end up in a “home” as she called it.
That was my number one goal from the very beginning, and the fact that we made it is the greatest accomplishment of my life.
WHAT ARE THE TOP 5 THINGS EVERY CAREGIVER SHOULD KNOW?
Alzheimer’s caregivers tend to “vent” and “complain” about things that are common to dementia patients. I know this because I did it myself.
Repeating themselves, forgetting to take a shower or go to the bathroom, refusing to cooperate, these are all common problems that come with the territory.
The list of problems is never ending as the disease stages.
Amazingly, the solutions to these problems are usually very simple.
You have to accept that the disease causes changes in the brain that results in changes in behaviors.
Second, continue living life.
I will freely admit that I finally realized that Dotty and I were living in a cave after about 18 months. Or that is what it seemed like.
So I made a decision, we would start living our life the way we always had.
I tried to remember what Dotty did before Alzheimer’s, and what she liked to do. I started to build a daily routine around what I knew.
We started as soon as she woke up in the morning, and we were still going when she went to bed.
Third, the importance of discussion and social interaction is imperative.
I discussed the newspaper with Dotty as soon as she would wake up in the morning. I encouraged her to read the paper to me. I put the crossword puzzle in front of her (she had been doing them all of her life).
Over time we added exercise, bright light, music, trips to the ice cream store and all of the other daily activities that Dotty enjoyed. Yes, over time we had to “dumb” these down a bit, but it was not hard to do.
Four, just let them do.
There is a tendency to start doing everything for the person living with dementia. THIS IS A MAJOR MISTAKE. I know this because I did it. It made my mother dull and uncooperative. She seemed to be falling into a dark hole.
Once we started living our life something happened that I could never have imagined. Dotty was “more there”. The more she did, the better she looked and the more cooperative she became.
I learned over and over that Dotty was more capable than anyone could imagine; and that, included me.
I realize that we the caregivers are restrained by our “own brains”. We are the problem.
My mother never stopped amazing me. She just keep doing more than I could imagine over and over and over.
Five, they love you more.
One of the most grueling parts of caring for a person living with dementia is that they sometimes quit saying “I love you”. They rarely thank you for all you are doing, this hurts.
On the other hand, they can’ t stand to be without you. They follow you around. When they can’ t see you they will call out your name.
If you go away even for a little while, they get upset.
If you are will to open your mind, and open your heart you will only be able to come to one simple conclusion–
THEY LOVE YOU MORE
Alzheimer’s Reading Room
IF YOU ARE A CAREGIVER, PATIENT, FAMILY MEMBER OR JUST HAPPEN TO KNOW SOMEONE SUFFERING FROM ALZHEIMER’S OR DEMENTIA YOU CAN LEARN SO MUCH BY VISITING ARR. STOP BY AND CHECK IT OUT!
I want to say thank you to Bob DeMarco for his continued support and education of Alzheimer’s Disease and caregiving. I also want to thank him for always answering my questions no matter how dumb they might be, listening when I needed someone to hear me most and for publishing the first articles I ever wrote on the ARR. Here is a link to those stories that I have had published on ARR: Memories-Her Mother Remembered 1957, But Not Right Now and also 10 Attributes of an Effective Caregiver.
Appreciate the good, laugh at the crazy, and deal with the rest.
I love you momma!