14: What Alzheimer’s Disease Feels Like

14: What Alzheimer’s Disease Feels Like

From Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias

What Alzheimer’s Disease Feels Like

I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do.

~Edward Everett Hale

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, on vacation with my partner Candy. We had decided to go on a seven-day cruise through Alaska’s Inside Passage because I had always wanted to see the glaciers and time was running out.

Diagnosed six years ago with Alzheimer’s disease at age sixty, it was time for me to do those lifetime adventures. As I watched one small iceberg glisten in the sunlight, I was drawn to its 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 every day 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 there are 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 creative, holistic thinker, I could no longer hold in my head the many ideas needed for this type of thinking. 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 apparent for a short time. During that time I 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, and it does make life easier for me.

Our vacation was different for me this time. I knew that what I was experiencing was spectacular but I missed its intensity. It’s as if the colors of the sky or a sunset or the blues of the glacier were all grayer. There was still color and beauty, but it was just not the same.

As a psychologist, I 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. 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 absorb the smells, tastes, and sounds of the places we went.

When I reflect on what I have lost, I am 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 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 a new understanding of myself and the world of others. I believe that with any chronic progressive illness, we are presented with moments of insight and opportunity. What we do with them defines us in ways we might never have imagined.

I have chosen empowerment over victimization, which I believe has contributed to my slow rate of decline.

The German philosopher Martin Heidegger wrote, “Anyone can achieve their fullest potential…. who we are might be predetermined, but the path we follow is always of our own choosing. We should never allow our fears or the expectations of others to set the frontiers of our destiny. Your destiny can’t be changed but it can be challenged. Every man is born as many men and dies as a single one.”

I intend to be the author of this chapter of my life and actively shape the man I will die as.

~Dr. Stephen Hume

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