Michael McCormack was diagnosed with younger-onset Alzheimer’s at the age of 54 in October, 2014. He currently serves on the MA/NH Alzheimer’s Association Board of Directors and reached out to me to share his story and continue his dedicated work advocating for those living with dementia.
Michael told me, “What I tell people is – this disease does not discriminate. If Michael J. McCormack can get diagnosed at 54, in the prime of his life, without any family history, then every one of us can get this disease. It doesn’t discriminate.
This disease, if anything, for me, is frustration. Frustration that I can’t do the stuff that I used to do. I tell people that I used to have an A game. It’s not an A game anymore. I’m may be a C?
You live each day. I know I’m not going to get any better. Today is the best I’m going to be. So you might as well enjoy it. So if I can see that ocean every single day as much as I can, and be able to . . . it not just living … It’s being cognitive.”
I asked Michael how his wife, Diane, was coping with his Alzheimer’s and he said, “She’s stressed and worried. Between the job and me, she’s not sleeping well. I asked her ‘Diane, what can I do for you to help?’ and she says ‘Nothing!’ I said to her ‘I know you don’t want to hear this, but try not to worry about me as much.’
If get up in the middle of the night to use the bathroom – she’s up because she wondering, ‘Is he coming back?’ When I walk, I have to text her ‘I’m walking. I’m leaving right now.’ They track me on the GPS. I wear a medic alert bracelet – it’s says memory impaired. But I’m not at that point yet. I don’t change my route. Everybody knows me down here at the beach. All the business owners. The people at the state reservation. If the cops drive by in the cruiser they stop and say, ‘Hello Mr. McCormack. How are you doing today?’
Diane is my rock. She’s strong. She puts everyone else first. But I don’t know how long she can do that. I worry about burn-out for her. I said to her ‘If I become a problem, you’ve got move me.’ If I become agitated or feisty, you know? All the stuff they tell me is supposedly coming down the pike. I told her ‘Don’t put up with it. You have to move me. Let someone else do it.’”
I asked, “What do you think she worries about most?” and Michael replied, “I think she worries most that she’s missing time with me. She’s gone nine hours a day working. I think she worries that when it’s time for her to retire that I won’t be cognitive enough. They told me that they want to keep me in the house as long as possible. I’ve seen my parents in the nursing home sitting in a wheelchair for four or five years. It’s not fun. It’s not pleasant. We will see how it goes. She wants us to be in our home as long as possible.”
I said to Michael, “It seems like you are very motivated to give back” and he said, “For me I don’t know what the future is. So if I can help one person navigate through contemplating getting a diagnosis. If we can help them through the process to get through were we’ve been? Then it’s all good. To get more people talking about it.”
What advice would you give someone newly diagnosed?
“Don’t change. You’re still the same person. Share your story. Stay active. Get involved. Keep things positive. I know it’s hard to say and do – try and stay as positive as you can. The more people that are talking about this – doesn’t matter if you’re living with it, if you’re a caregiver – we will eliminate the stigma. But we need more conversation. To get others more serious about this disease. If you think about all the money that has been poured into this recently – why isn’t there a cure or progress?”
As we walked together towards the ocean to take a few pictures together, I asked him, “What do you love about the water?”
“The water is very calming. Very peaceful. It relaxes you. Whether you’re out there on a 90-degree day in the summer where it’s blanket-to-blanket, or when it’s in the winter and I’m the only soul on the beach. We just walk the beach. It’s very soothing. Just the sound kinda puts you at ease and makes you think maybe things are going to be alright.”