Mike and Janice article for Maria Shriver's Caregiver blog
Mike is 64 years old. He was diagnosed with early onset Alzheimer’s 3 years ago but he probably began showing signs as early as 2010. He couldn’t multi-task anymore, everything became linear for him, and he became slightly paranoid. We were living near Boston and there was a series of tornadoes that devastated parts of our town. After that event, every time the weather got cloudy or overcast, Mike would say things like “I think we have to go to the basement”. He was acting like an old man. He became worried about conserving, like the world was going to end. This was so out of character for him.
A slow progression of depression set in. By 2012 he was diagnosed as having a nervous breakdown. This mis-diagnosis continued for 2 1/2 years! When my 60th birthday arrived in 2014, Mike didn’t remember it. This wasn’t like Mike. I never considered Alzheimer’s to be the cause. He was on medication for depression and anxiety. I assumed he’d get better, but he didn’t.
The strange part was that he didn’t have any memory lapses. He still had (and has) a sense of direction. I did notice that his writing became impaired and he couldn’t retrieve simple math skills. When he couldn’t figure out a 20% tip on a restaurant bill, I thought he was joking with me. He was embarrassed. I realized then that I had to start paying our bills.
Mike stopped driving, willingly. I became his caregiver. I entered into a financial disaster for the next 3 years. We had college loans for 2 kids. I had to close his law practice. Our whole retirement vanished. My future became based on how I could make what money we had last. The stress this caused me has been worse than the Alzheimer’s.
Mike did so many good things throughout his life. He always gave to others. When Mike was finally diagnosed with Alzheimer’s, his college classmates from Notre Dame organized and sent enough money to pay for Mike’s treatments. Our town banded together and planned a benefit. What they did for us was unforgettable. I don’t know what we would have done without them.
I now do all of the cooking, driving, financials and medication supervision. I have no help. Mike is a good man. He didn’t do anything wrong. He would never hurt anybody and I’m not mad at him for getting ill. He tried to shield me from his illness but ultimately he couldn’t hide it anymore.
We’ve been married for 35 years. I’m sad that we can no longer travel together as we’d planned to do. Mike needs routine. He doesn’t communicate with me or anyone else, much. I have a lot of one way conversations. I get lonely but Mike and I still have something. It’s different than what I imagined our time together would be at this stage in our lives.
Mike plays his trumpet for The 5th Dementia Band, part of the Music Mends Minds program. He played the trumpet when he was younger then stopped for almost 30 years. His musical ability has not been affected by his illness. When we got to California, he picked up playing again. We both enjoy the community of the band. I enjoy talking to the other spouses at the church while the band rehearses. Mike loves playing his trumpet.
When Mike can’t find the words to tell me something, he will either sing a song that has the words he needs to convey his message or get his trumpet and play me a song that will help me connect the dots. I’m not sure how his brain is able to always find the right song to convey what he means, but it works! His music brings him joy. He smiles after rehearsals and is more talkative with me. It’s worth the drive to be a part of this program.
You can see Mike play his trumpet twice a week with The 5th Dementia Band at the Brentwood Presbyterian Church. He and Janice are featured in the upcoming film, The 5th Dementia Documentary. You can see the trailer, images from the film, more about other band members and give a tax deductible donation at www.The5thDementiaDocumentary.com.