What Alzheimer's Disease Feels Like
Each September, World Alzheimer’s Month is your chance to join the global fight against Alzheimer’s disease. There are more than 35 million people worldwide living with dementia and more than 5 million Americans are living with Alzheimer’s disease – the most common form of dementia. “Go Purple” on Friday, September 21st to mark Alzheimer's Action Day.
It was an uncharacteristically warm and sunny morning in Alaska. I was sitting on the aft deck of a cruise ship watching brilliant, blue icebergs drift silently by.
I was on vacation with my partner Candy. We had decided to go on a 7-day cruise through the inner passage to Alaska.
I had always wanted to see the glaciers and time was running out.
Diagnosed 6 years ago with Alzheimer's disease at the age of 60, it was time to do those once-in-a-lifetime adventures.
As I watched one small iceberg glisten in the sunlight, I was drawn to its many facets and how, as each one caught the sunlight, a small piece would topple off.
This is what it's like to have this disease, I thought. My brain is the iceberg and everyday I lose some little part of it.
There are days when the 'sun' is bright and I may lose a bigger or more obvious piece and cloudy, cold days when I don't lose anything.
Such is the life of an iceberg and a brain attacked by Alzheimer's disease.
When I was first diagnosed, it had become apparent to me that I was having cognitive problems.
Once a very creative holistic thinker, I could no longer hold the many ideas needed for this type of thinking in my head.
I had become much more linear in my approach to life. Now step 1 had to be followed by step 2 and then 3. I could write these steps down and follow them at least most of the time.
As my symptoms progress and I lose more and more I have come to appreciate one aspect of this disease – forgetting.
Every time I am aware of a change in my abilities it is only for a short time. During that time I do become distressed, but I know that in a very short time I won;t remember ever having it. I guess this is a protective process, it does make life easier for me.
Our Alaskan vacation was different for me. I knew that I was experiencing spectacular scenery but I missed its intensity. It was as if the colors of the sky or the sunset or the blues of the glacier were all grayer.
There was still color and beauty but it was just not the same. Every night I'd try to recall what I'd seen that day. It was difficult.
Realizing this I tried to create mental postcards and to absorb the smells tastes and sounds of the places we went.
As a psychologist, I had learned that we store our memories in many different places in our brains. Often a smell or taste will elicit a powerful memory even though the image has long been forgotten.
When I reflected on what I had lost, I was still aware of two important things. One is my intelligence and creative drive; the other is my connection to others. Both of these have changed dramatically and I miss them greatly.
Always a self-motivated and, some would say, driven person, I now need other people to help me find ways to be helpful to others.
I have gone from being the person others went to for ideas and direction to being other directed.
This has changed my relationships in major ways. I have had to learn to depend on my family and colleagues which has taught me the value of joining.
Although my bond with other people has diminished, I still want to be useful and productive – I just don't always know how anymore.
This disease has humbled me. It has given me new insite into myself and into the world of others.
I believe that with any chronic progressive illness, we are presented with moments of insight. What we do with them defines us in ways we might never have imagined.
As the German philosopher Martin Heidegger wrote, “A man is born as many men, but dies as a single one.”
Dr. Stephen Hume was diagnosed with Alzheimer’s disease in May of 2007 at the age of 60. Prior to his diagnosis, Dr. Hume was a clinician, consultant and senior manager in the behavioral health field. He has a doctorate in clinical and organizational psychology. In 1982, Dr. Hume co-founded AFFIRM, Inc. one of the first private Employee Assistance companies in Massachusetts. He has been a clinician for over 35 years. Dr. Hume is currently an active a member of the Alzheimer's Association National Board of Directors serving on the Chapter Relations and Program Committees. He is also active with the Alzheimer's Association Massachusetts/New Hampshire Chapter as a member of the Advisory Board, and Advocacy Committee. In 2010, he became an Alzheimer's Ambassador. He travels extensively for the Association and in the past two years has spoken at multiple events in 17 states. He lives with his life partner, Candace, in Wilbraham, Massachusetts.