man standing in a hotel conference room with a cane

Mike Belleville, 52, is a member of DAA’s Advisory Board. He is living with Lewy body dementia.

 

What does a day in the life look like for a person living with dementia?  It obviously varies depending on the progression of the person’s dementia. Although I was diagnosed 8 years ago at the age of 52, I am still thankfully experiencing early symptoms of Lewy body dementia.  I am challenged on a daily basis with a rollercoaster ride of feelings – feeling great in the morning to being completely irate in the afternoon for no good reason.  I can become extremely anxious or depressed anytime throughout the day but generally more in the evening.  I had a dream recently that my wife was unfaithful to me only to wake in the morning swearing that it was real to the point that I was furious with her all day.  I have body tremors, balance issues, apathy, and often can’t sleep.  I’ve been up for nearly two days at the time of writing this. I am trying the best that I can to live life to the fullest each day.  I believe in the saying – “Get busy living or get busy dying.”

Recently we celebrated my mom’s 84th birthday by having her over to our house for dinner with a gathering of a few of her kids (she has 8), grandkids (she has many), and great grandkids. The celebration starts off fine. My mom gets hugs and kisses from everyone.  The big smile on her face is heartwarming.  We have dinner – lasagna – which was one of our favorite meals growing up that she used to make for us.  After dinner we sing happy birthday and she loves it.  Next we have cake and ice cream. Then comes the big surprise I’ve been planning all week. A video of a 1999 family gathering in West Germany that I transferred from an old video tape to digital. All of my siblings and I had travelled there for our Oma’s 90th birthday celebration. The video shows the town where she grew up. A lot of her own siblings (she had 16) and family are in the video.

We start to realize that she doesn’t recognize anyone, including my dad, her husband of 63 years who passed away a year and a half ago. She does not recognize them because she was diagnosed with Alzheimer’s three years ago.  Mom, who the professionals say is experiencing moderate symptoms of dementia, is just staring at the screen, looking confused and distressed. After five minutes or so we stop the video.  It was very difficult for us to see that she did not recognize anyone, including her own mother.

We go back to the dining room and sit around the table and try to make sense of what just happened looking for words to try to make US feel better about what we just experienced. What we thought would be a fun, happy viewing became a distressing event.  We change the subject and focus on what is happening now. We talk about her great grandkids and the beaming smile comes back to her face as she watches them. She is living in the moment. The smile stays on her face as she watches the kids play, laughing and giggling as kids do. So, we smile and laugh along with them and with her. Because that is what we need to do – live in the moment.

The hardest part of what happened is knowing that will be me in the not too distant future and it will be my kids and grandkids having a similar experience. I don’t know if any of my family members were thinking of that at the time.  It’s OK if they didn’t.  I want them to live with me now and not to focus on what may happen in the future.

I have a tattoo on my right forearm with the logo of the Alzheimer’s Association and the following words below it. “Live, Live, Today”. I had the tattoo done the day after I had to retire from work at the age of 54 because I could no longer do my job. It’s my reminder to live in the moment. I try, although not always successfully, to do that every day. I know that many of my friends who are living with dementia are doing that same thing.

Whether you are living with dementia or not, I truly hope that you try to LIVE LIFE TODAY.

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