11: What My Alzheimer’s Diagnosis Has Taught Me

11: What My Alzheimer’s Diagnosis Has Taught Me

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

What My Alzheimer’s Diagnosis Has Taught Me

With the past, I have nothing to do; nor with the future. I live now.

~Ralph Waldo Emerson

I’ve always been the type of person who prefers experiences to things. I’d rather go on a trip and have great memories than buy a new computer. I enjoy time with my family, laughing at silly things, having coffee with a dear friend and taking a walk in my neighborhood. I like to do things that create memories.

How ironic then, that at age forty-six, I was diagnosed with Alzheimer’s disease — a disease that robs you of your memories.

By being diagnosed at an early age, I was an anomaly to many. When people know you have Alzheimer’s you become branded — it’s like you have a big “A” stamped on your forehead. People treat you differently. They are not sure how to approach you. They don’t know if you will remember them. They don’t think you can speak for yourself. They don’t think you have thoughts in your head.

Many times people come up to me and say, “You look great — you can’t be sick.” I wish that were true.

Seeing this reaction from people made me realize there were lots of misconceptions about Alzheimer’s disease. Alzheimer’s does not affect everyone the same way. There are different rates of progression, different symptoms, and different ways to manage symptoms. What works for one may not work for others.

I realized I had an opportunity to help educate people about this disease. I needed to show them that, for now, I am living with Alzheimer’s disease, not dying from it. I am still a wife, a mother, a mother-in-law, sister, an aunt, and a friend. I need to be those things for as long as I can.

Many families don’t want to admit that a loved one has Alzheimer’s. That’s certainly their right. I’ve never been ashamed of it. People don’t seem to be ashamed of other diseases like diabetes or high blood pressure. I do, however, feel guilt — guilt for what this disease means for my family.

I have the easy part, they have the hard part — they have to live with me. My behavior is unpredictable. Many times I know I am not making sense to them but I can’t fix it. I know I am not doing something right, but I can’t stop myself. My thoughts get trapped in my brain with no way to get out. It’s frustrating for me but much more so for my family.

The brain is a complex thing. It is hard to understand when your brain doesn’t work. Some days my brain works fine. Some days it doesn’t. I don’t know when my brain is going to work and when it isn’t.

We take it for granted that it is going to work the same way it always has and when it doesn’t, frustration builds. I get agitated. I get mad. I feel alone. I feel stupid. I know I’m not stupid, but when you can’t do a task you have done for years, you feel stupid. I always thought I was in control of my life, and now Alzheimer’s is in control.

I’ve learned a lot since the day of my diagnosis — not only about the disease but also about myself. I’ve always known that life is what you make it, but I never lived it that way. Now I do.

To cope with this monster, my family and I decided that we would look at Alzheimer’s as an obstacle in our life, rather than the end of my life. We decided that when I could no longer do something, we would look for another way to do it for as long as possible. I’ve learned to live in the moment.

It saddens me that there are many tomorrows I will never know and many yesterdays I cannot remember. So today is what I have. I used to worry about what was, or how I should have done something differently. But that is energy wasted. I need all of my energy to get through every day.

I’ve learned to slow down and pace myself. I’ve learned to rest when I need to — it gives my brain a chance to recharge. I’ve learned that routine is important and I do best in a quiet environment. I’ve learned to plan my days better. I need to live my life as normally as possible, knowing that the definition of normal often changes. Some days are perfect. Other days are a disaster. Some days I laugh at the crazy things I do. Other days I cry at the crazy things I do.

I’ve learned to rely on others. It isn’t easy asking for help, but sometimes I have to. Admitting that I can no longer do something and having to ask someone for help is humbling. I’ve learned to let go of the things I can no longer do and hold tightly to those I still can. There will be a day when I will hardly be able to do anything, and I hope for my sake and the sake of my family that it is well into the future.

I’ve learned to share my journey. If others can learn from my experiences, all the better. I’ll talk to whoever will listen and I chronicle my adventures in a blog: www.creatingmemories.blogspot.com.

I’ve learned to stay active — physically and mentally. I spend countless hours working on puzzles and trying my hand at crafting — anything to keep the brain going. I also try to eat right and exercise on a regular basis. I notice a dip in my mental acuity when I don’t exercise.

I’ve learned to laugh at myself and to ask others to laugh with me. Laughing also helps eliminate those awkward moments when people don’t know how to react to something you’ve done.

I’ve learned to prioritize. My family and friends are first. Everything else is last. I know I can’t stop Alzheimer’s, but maybe I can help change its direction.

I’ve learned to keep adding to my bucket list. My lifelong dream of going to Australia with my family was fulfilled. In time, I know I will forget that trip, but I hope my family will remember it forever.

In the future, I hope research will find a way to conquer this dreaded disease. I hope you will never have to take this same journey, but if you do, try to make the best of this bad situation and try to enjoy what is left of a “normal” life for as long as you can.

~Kris Bakowski

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