We talk about it when death happens to someone else’s family. We talk about the horribleness of death. We may tippy-toe into the topic of how we would like to die. Usually it is a rather light-hearted discussion with everyone sharing their own personal death scene. From what I can tell most don’t want to suffer and if there is a chance occurrence we’d rather go fast. Debra talks about the topic as “death drama”. She thinks death comes with a story and a sense of drama. I’m not sure what I think. The death discussion doesn’t occur around me as often anymore. Light-hearted or not, I don’t hear it very often. Debra and I will talk about it privately but hardly ever in a crowd anymore. People already know because of my diagnosis that my days are numbered.
My Alzheimer’s is a deal changer. I could easily come into any discussion and change the temperature immediately. I know what a lot of other people don’t know. I know, baring medical advances, how I’m going to die. We will come back to this towards the end of the blog.
After hearing of Glen Campbell’s death in August of this year I decided to research other people who had Alzheimer diagnosis and other forms of dementia that had died. I was aware of some but there were many more that I was not aware of their diagnosis.
If you are a movie fan; Rita Hayworth, Jimmy Stewart, Chalton Heston, Charles Bronson, Peter Falk, Burgess Meredith, Eddie Albert, Imogene Coca, James Dohan (for the Trekkies among us), Edmond O’Brien, Dana Andrews, Otto Preminger, Estelle Getty, Robin William, Jack Lord, Arlene Francis and many more.
Notables: Ronald Regan, Etta James, Aaron Copland, Rosa Parks, Norman Rockwell, Sugar Ray Robinson, Bill Beutel, Perry Como, Cyrus Vance, Floyd Patterson, Grizzly Smith, Fred Trump (President Trump’s father), Don Lane, E.B. White, Pat Summitt, Casey Kasem, Thomas Dorsey ad Barry Goldwater. I doubt that anyone will now everyone on the lists but you should recognize at least a few names.
I was drawn to Glen Campbell’s story, especially after hearing about his farewell tour and the documentary filmed of the tour. A little background on Glen has him born on April 22, 1936 in Arkansas. He had eight children. His fourth wife of 33 years, Kim, was by his side during his stage shows and all the doctor’s visits. In other words, she was there when he was diagnosed with Alzheimer’s in 2011. One of the doctors that was featured in the documentary was Ronald Petersen from Mayo Clinic, who I have had the opportunity to meet previously and posted a blog about that meeting. Glen had only the best of care.
In 2012 the Campbell family announced a final tour. Glen’s three youngest children would be in his backup band. I mistakenly thought this was a quick tour through the U.S. It was not a quick tour at all. It was 151 shows. At the end of 2012 the family made the decision to not add any additional dates in 2013. Glen was struggling with the last few shows, which the documentary details.
The Campbell family was not bashful about allowing the cameras into their home, tour bus and on stage during the performances. With that in mind I sat to watch the film. I finally made the decision to watch it and I thought I had prepared myself for what I thought I would be seeing.
What I watched unfold was about this extremely talented man who had such a command of his music, it was a real gift. Even with Alzheimer’s you can see that the guitar was part of his soul. He played it with continued ease. But asked to remember lyrics? He stumbled. They had tele-prompters to help him and he occasionally, would still get lost. On at least one occasion he sang “Wichita Lineman” twice during the performance. One notable comment from another musician attending the performance I thought very appropriate, “It’s Glen Campbell’s last tour, probably the last time I will ever see him perform live, if he wants to sing Wichita Lineman twice, that’s just fine with me”!
Watching the frustration of the day-to-day living was hard for me to watch. I could identify with his frustrations. Not being able to have full command of my words is very frustrating for me. The memory lapses that are becoming all too frequent are starting to concern me. The progression of the disease I know is happening, and at times, it is very scary. In Glen’s case, his wife, Kim, was fantastic as were his children. Although, at times, Kim did admit her frustrations and difficulties dealing with Glen.
One of the most moving parts for me to watch was when Glen and his daughter Ashley did “Dueling Banjos” during their show. He was not using a tele-prompter for his part. The music was there, completely part of who he was. His memory was perfectly ingrained with his guitar. I immediately remembered how talented he was. I grew up listening to his music.
But reality hit me at a certain point. I realized I was only going to be able to watch this film a bit at a time. It was too emotional for me. I got through the first half and then took a break of a couple of days, to be honest. I am glad I watched the documentary. I don’t want to speak on behalf of others, but it might be hard to others who have been diagnosed with Alzheimer’s to watch it all the way through.
I am and will continue to be in awe of the courage it took for the Campbell family to share this part of their lives with us. Just before Glen’s 80th’ birthday, Rolling Stone magazine reported that Glen was in the final stages of Alzheimer’s and was no longer communicating. On August 8, 2017, he lost his battle with Alzheimer’s disease.
I am reminded as I watched Glen’s progression that I, too, will be going down this road. At what time in my life will I stop recognizing my wife and my children? At what point will I forget what the toilet is for? When will I become unable to communicate? I know the day is coming. I feel fortunate that my Alzheimer’s, so far, is progressing slowly, but it is progressing. Learning to cope with your own mortality is not easy. Harder yet is acknowledging the strain and problems that you are going to be causing your loved ones soon.
As I come to the end of this blog I have to say I have mixed feelings. There is an increase in research funding. But I continue to see and hear awful stories of suffering. I really thought I lived in a somewhat insulated world of writing my blog, and speaking at events. I needed to see the Glen Campbell documentary to center me again and to remind me of what is going to be my family’s reality.
The initial question that I posed earlier in the blog about my death. Unless something unforeseen would happen, I too, will become a statistic, succumbing to this awful disease called Alzheimer’s. I know there is a lot out there that I will never know anything about, I don’t know what I don’t know. But this is something I know. There are no survivors of this disease, yet. We all await the day that someone will be the bearer of the first “White Flower”, the first survivor of Alzheimer’s. My fervent wish is that I am still alive to see that day.
It is only appropriate to close with some lyrics from Glenn Campbell. These are the heartbreaking lyrics of one of his last songs. This was perhaps his most intimate song, released in 2014. Titled “I’m Not Gonna Miss You”, it chronicled his battle with Alzheimer’s disease. Julian Campbell, an American music producer who co-wrote the song, told the Wall Street Journal that the lyrics came out of something Campbell said after his diagnosis: [Campbell] had a hard day of people asking him about Alzheimer’s and how he felt about it. He didn’t talk too much about it, but came up to me and said, ‘I don’t know what everybody’s worried about. It’s not like I’m going to miss anyone, anyway.’
The lyrics to “I’m Not Gonna Miss You”;
I’m still here, but yet I’m gone
I don’t play guitar or sing my songs
They never defined who I am
The man that loves you ’til the end
You’re the last person I will love
You’re the last face I will recall
And best of all, I’m not gonna miss you
Not gonna miss you
I’m never gonna hold you like I did
Or say I love you to the kids
You’re never gonna see it in my eyes
It’s not gonna hurt me when you cry
I’m never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains
I’m not gonna miss you
I’m not gonna miss you
We lost a great performer, musician, man, and father. He was not afraid to show his frailties, weaknesses, and faults due to this horrible disease. Mr. Campbell, thank you for sharing your life with us, you will be missed.
Thank you Debra for your assistance with this post. I have to say that this is one of hardest posts that I have written to date. I know life sometimes doesn’t seem to be fair, and we sometimes take for granted those around us who mean the most to us. We don’t say it enough, but in my case, I do not know what life would be like without my wife!