“It is with the heaviest of hearts that we announce the passing of our beloved husband, father, grandfather, and legendary singer and guitarist, Glen Travis Campbell, at the age of 81, following his long and courageous battle with Alzheimer’s disease,” the singer’s family said in a statement.
Gene Wilder, who delighted kids as Willy Wonka and made adults laugh with Young Frankenstein, died the other day. But it wasn’t until a day or two later that we learned he had Alzheimers.
According to his family, the disease — which they called “this illness-pirate” — was his unwelcome companion for the last three years of his life.
But unlike Ronald Reagan or Charlton Heston, he kept his diagnosis within the family.
Now, here’s the thing both the dementia patient and the caregiver have to wrestle with: Shall we go public or not? And if so, how public?
Short answer: It’s complicated. Or more correctly, it’s personal.
Wilder’s movie roles were always joyous experiences. Good comedy, and it fit his gentle nature quite well. How could a youngster make the connection between the young Willy Wonka and the vastly diminished version of Wilder?
They said Wilder did not want to disappoint “the countless young children that would smile or call out to him, ‘There’s Willy Wonka’” or expose them to the cruel realities of the disease.
Let’s let the Wilder family tell it:
To hide, or not to hide?
It’s still a personal decision, and a tough one. Like with Reagan. His family broke the news of his diagnosis in an open letter, and that was just about the last we saw of him. We know nothing about the man who no longer recognized Nancy. We still have the memories of the world leader who dared Gorbachev to “tear down that Wall.”
I have memories of ultimate leading man Heston in his films, and as the man I met on the political circuit in the mid-1990s. After his diagnosis he faded out of the public eye.
I still have memories of Charles Bronson in his movies. I know nothing about the shell of Bronson after Alzheimers robbed him of his ultimate badassery.
But the choice is personal, and it’s not just for the caregiver’s convenience.
Like with Dad. He’s always been a brainy guy, and when he went into the retail business he had to almost force himself to be social. Now it hurts to see someone who has trouble with simple concepts, and I often have to talk him through instructions a step at a time. But he likes to go out, and it’s good for him. Going out to hear some music on Tuesdays. Going out to dance and hang out on Thursdays. Going to the local community theater. Even something like getting a haircut is a big adventure, and he’s always ready to go for something like that.
At this point — and he’s edging into late-stage dementia — he gets stuffed into a closet only over my dead body. Sure I worry about him falling, and when he leaves my sight I have to watch him in case he wanders. But as long as he’s up to going out I’m ready to drive.
I wrote this a few months ago; right after Glen Campbell won his Grammy. It showed up in my original blog, and I later reprinted it in Medium. Because of the subject matter, I updated it some and am reprinting it here.
I know it happened almost a year ago, but it won’t go away. Glen Campbell’s recent Grammy for best country song of the year really hit home.
You’d have to be a serious baby boomer to have the whole lowdown on Campbell’s career. An in-demand sideman and session guy, he filled in with the Beach Boys for a while before going out on his own. Songs like Wichita Lineman, By the Time I Get To Phoenix, Galveston and Rhinestone Cowboy were among his biggest songs.
But his latest Grammy winner is really personal. He played I’m Not Gonna Miss You for a documentary on his battle with Alzheimers. He was diagnosed a few years ago, and he continued to perform as long as he could while the disease took over more of his brain.
I have to include a clip of the song here. If you’re close to someone who’s going through the same thing, I’ll bet you can’t watch the video without blubbering like a baby.
Alzheimers — like the other forms of dementia — is an insidious disease. Often the person who has it is the last one to know, and just the thought of it is scary stuff. The things that a person used to do almost instinctively, he has to think about long and hard now. Journalist Greg O’Brien describes it first-hand in his book On Pluto: A guy could be standing in the back yard holding a garden hose and wonder how he’s supposed to work the stupid thing. And feel this rage because he used to know all this stuff.
I saw a video clip of Campbell on his last tour, and there were times he looked really lost. He had a TelePrompter on stage so he could remember the lyrics. At one point he finished Galveston, talked with the audience for a few seconds, and started his intro to his next song: Galveston. His daughter Ashley, who played banjo and keyboards in his last band, had to remind him that they just did that song.
Here’s a clip from that tour, with bio and interviews from 2012:
I like my music edgy, served up in your face with a side of danger. To me, Glen Campbell’s music veered too much into pop territory. Just not my style. Let the record reflect, though, that he was one of the great underrated guitarists. The man could really pick:
In his farewell tour he certainly lost a lot off his chops, but that’s no surprise. I’m amazed he was able to remember chord patterns and fingering at all as he got deeper into the disease. His kids say he would forget a solo to a song and improvise his way through it, somehow making it work.
Maybe continuing to play was his way of fighting the disease? His wife Kim seems to think so.
“It’s been an amazing journey,” she said at the awards presentation. “He’s been so courageous in bringing awareness to Alzheimer’s and caregiving. Music, I really believe, kept him healthy for a longer period of time and enabled him to enjoy life while living with a debilitating brain disease.”
To me, this is kind of personal because in the last few months I’ve been watching the effects of dementia close up. Since May I’ve been down in the pit with it, seeing the wreckage it leaves.
Where it gets personal
I’m currently in California serving as a family caregiver. Both my parents developed forms of dementia, and it became obvious to me when I came out for a visit in April 2014. I just wasn’t sure what I was getting myself into when I moved back out here to help them out. But in those first few months I’ve been trying to learn as much as I can. How to transfer someone from bed to wheelchair. How to clean up after the person who used to do the same for me. How to keep things at ease when the disease is scaring the parent. I became half nurse, half physical therapist, half legal advocate and half financial counselor, knowing none of this adds up.
And all actor. Forget about reasoning with a brain taken over by dementia. Often I just have to play along.
Mom passed away in October 2014, and I’m now keeping an eye on Dad. He’s relatively low maintenance, but I know that will change.
Caregiving’s a tough business. So demanding. Physically and mentally draining, and you’re usually flying blind. Forget the two-week crash course, it’s time to start as soon as you arrive. You learn as you go, praying you get it right.
But that’s the easy part. Emotionally, it’s hell.
That amazing person you once knew? Not exactly gone, but you probably won’t recognize him or her. The person you’re taking care of is just a shadow of the one you once looked up to. When you’re seeing this process at such close range, if it doesn’t break your heart it means you probably don’t have one.
All is not well with Glen Campbell. The song was recorded in 2013 and released in the middle of last year. Since then he’s been in a long-term care facility. Forget about performing now; I understand he’s lost the ability to speak. Although the number varies depending on whose scale you use, he’s at late stage six of a seven-stage progression.
Did he realize the impact his song has on those of us in the trenches? Even the fact he won this award? Probably not.
“We told him about the Grammy,” Kim told Entertainment Tonight. “He might have forgotten it immediately. He knew something good happened.”
It doesn’t get any prettier. Dad’s cognition is not good, and there’s little he can really do these days. Best I can do is give him little tasks that may or may not help, but hope it’s enough to keep him engaged.
Like when paying bills I’ll have him open the mail and run the shredder, and hope my own type-A attitude doesn’t kick in. Told you there’s a lot of acting involved.
Keep him safe, keep him engaged, keep him happy. I guess that’s the best I can do.