Glen Campbell; Dealing With Your Own Mortality

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!

Mike Hughbanks & The Joslyn Art to Remember Tour

August 7, 2017 2:00 PM. Debra dropped me off at my favorite home improvement store as I was on a mission. I knew they had dimension lumber 3/8 thick and I was sure I remembered the isle it was in. As I walked through the door I heard one of checkers tell another one, “Hey Jerry, that’s him”. I glanced back to see who else was in this part of the store, no one but me. I ventured on to the location I remembered, found exactly what I was looking for. I am sure I had a smile on my face as I walked back to the same register where I walked in. I recognize the checker as a regular and she commented that she saw my picture in the paper. “I was sure it was you, I even told other employees that you were in the store”. I was surprised, it took a few minutes for it to register that she was referring to the article about the “Art to Remember” series at the Joslyn Art Museum.

Next week is the anniversary of my Diagnosis of Alzheimer’s Disease; I can’t believe it’s been two years. I’m amazed when I am out in the public how many people I talk to know someone with Alzheimer’s, an aunt, grandparent, a friend or neighbor.  As I was paying for my large $2.00 purchase, the checker commented about a relative with Alzheimer’s. While leaving the store I told the nice lady I was diagnosed 2 years ago and jokingly told her I didn’t remember what I had for lunch yesterday. I did remember however, exactly where the item of lumber was in the store and that my wife was in the car timing me and I would make it back to the car in record time! I think she knew I was joking about being timed.

Let’s go back in time to December 15, 2015. Elizabeth Chentland and Clayton Freeman from the Nebraska Chapter of the Alzheimer’s Association and I are sitting in the conference room at the Joslyn Art Museum. The idea being discussed was offering a free program to individuals diagnosed in the Early Stage of Alzheimer’s Disease. Other similar programs such as the Minneapolis Institute of Art’s “Discover Your Story” tour designed for individuals and their families in the early and middle stages of Alzheimer’s have been very successful. The Metropolitan Museum of Art (MoMA) in New York City is well known as the largest Art Museum in the United States. MoMA is also well known for “The MoMA Alzheimer’s Project”. The decision was made by MoMA in 2006, and funded by a grant from MetLife Foundation to develop a program for people affected with Alzheimer’s disease. They were one of the first museums in the country to do so. The goal is to make art accessible to people with dementia.

Sitting in the conference room in December of 2015 I have several memories. The most striking is one piece of art depicting an Indian Chief in full headdress. For some reason, maybe my southern Kansas heritage, this piece of art reminded me of my dad. At the time, dad was fighting brain cancer. Everyone at the table agreed that we shared a vision to try and make the dream of a program at the Joslyn to share art with those diagnosed with Alzheimer’s a reality. The burden of work was on the Joslyn Art Museum.  Research would need to be conducted, approvals for the program would have to be obtained, and funding the program would also be necessary. I met an individual that day that I greatly admire and is one of the shining lights from the Joslyn, Susie Severson. Susie is the Director for Adult Programs at the Joslyn. More about Susie later.

February 8, 2016. Sitting on a stage in the Joslyn Art Museum in front of over 30 docents and others from the Joslyn, my goal was to tell my story, other presenters there also to enlighten the audience about persons living with a form of dementia. I recounted the memory I had of the initial meeting the previous December sitting in the conference room, looking at the Indian Chief, remembering Dad. The presentation was difficult for me because we lost Dad to brain cancer in January. To me, looking at the piece of art and associating it with a past memory or a person was very special. A piece of art reminded me of Dad.  To this day, I remember sitting in the conference room looking at the painting of an Indian Chief. I sometimes forget what I had for lunch the day before, what I went to the basement to get, or one of the 4 items I went to the grocery for, but I remember the painting and I remember Dad.

July 23, 2017, 2:00 PM, Joslyn Art Museum. It was a good turnout at the Joslyn for our bi-monthly tour. As always Susie is at the front door to great everyone as they walk in. The tour, as always, was fantastic, a lot of interaction between the presenting docent and the audience. We do not know ahead of time what the docents have in store for us. We may be singing America the Beautiful, listening to music, or smelling the scent of a pine cone while looking at a piece of art set in a forest. The docents truly make the art come to life. The docents also do not know who in attendance have a diagnosis and who the caregivers/family members are.

The “Art to Remember” Program at the Joslyn Art Museum is one of the programs that I feel privileged to be part of since I began volunteering at the Alzheimer’s Association nearly two years ago. I could go into facts and figures about why programs like this work, but in my mind I don’t need to. I am living proof that programs like this work.  I remember when we were discussing the possibility of this program I thought, we can do this. We may not be in NYC, or in Minneapolis, however, right here in Omaha, Nebraska, we have a fantastic Art Museum, an extremely capable group of people at both the Joslyn and the Alzheimer’s Association working on the project. We can do this, and it happened.

The article in the Omaha World Herald features my favorite docent. Sharon Martin is passionate about life, art and people. She has a personal connection to Alzheimer’s as do most people. Sharon is one of the heroes of the Art to Remember tour. This program I firmly believe would not be existence today if it weren’t for the efforts of Susie Severson. Susie tends to operate in the background, she is present at the tours, silently watching, never bringing attention to herself. Susie doesn’t want the attention, sorry Susie you deserve the attention, thank you on behalf of all of us for your commitment to this program. I also want to thank Blue Cross Blue Shield of Nebraska for funding the program.

That’s all for now, if you missed the article in the Omaha World Herald, the shortcut is below.

Joslyn Art Museum