Living with ALS: Glen Campbell’s final gift to his caregiver, his wife Kim
CHARLOTTE, NC, January 14, 2018.: In 2011, the “Rhinestone Cowboy”, Glen Campbell, was diagnosed with Alzheimer’s disease. The chronic neurodegenerative disease, for which there is no cure, took the legendary country music singer’s life in August of 2017. And it turned his wife into his caregiver.
Though Alzheimer’s and ALS are different afflictions (Alzheimer’s affects a person’s mind, memory and thinking, while ALS attacks the body), they do have similarities; both are slowly progressing conditions that deteriorate over time, both require constant lifestyle adjustments to deal with new challenges on a daily basis and both require the infinite patience of loving and compassionate caretakers who now live the lives of two people instead of their own.
In movie terms, Alzheimer’s and ALS are somewhat akin to an agonizingly slow fade to black.
As Glen Campbell’s disease progressed, his wife Kim of 34 years, was forced to adapt to each new condition, eventually becoming a fulltime caregiver. Over time, when she went to sleep, she would put something in front of the bedroom door to prevent her husband from getting up and leaving in the middle of the night.
Kim learned tricks like putting coat hangers on doorknobs so they would rattle if Glen began to move around in the dark, fearing that her husband might accidentally fall down the stairs.
Most of the time when Kim had to bathe Glen, it erupted in a physical battle.
As Kim explained Altzheimer’s is not simply about the loss of short-term memory. Victims can, and often do, become paranoid, suspicious and, even, violent. Such was the challenge she faced as Glen Campbell’s primary caregiver.
At first, Campbell continued to perform until, eventually, the disease affected his ability to remember the words to his music.
Caregiving takes over your life
“It just takes over your life. They are losing their identity because they can’t remember who they are, but as a caregiver, you are losing your identity. You have to give up everything you are doing to take care of them.”
The same is similarly true with ALS, the main difference being that while your mind is intact, which keeps your awareness of the assistance you are receiving, there is little a patient can do physically to assist as the detrimental condition increases from within.
There is a positive aspect to both diseases in the sense that the onset is not rapid, so there is time to plan ahead and make adjustments. Pre-planning is vital to success and quality of life in the future.
Though it is impossible to determine what each new phase will bring, there are certain general aspects that will eventually occur. Those are the challenges for which you can prepare.
The challenge to being a caregiver
Many caregivers suffer from depression as the months and years wear on. It is understandable, and it is not healthy. Ultimately; it is impossible for a single person to handle caregiving tasks alone. If they try, it will take them down. The trick is knowing when to get the necessary assistance and how to budget time so the caregiver’s life is not destroyed in the process.
Rather than damning that slow fade to black that will eventually fill the days with darkness, the key is to find a way to light a candle, a ray of hope that will become the light at the end of the tunnel.
I’m Not Gonna Miss you
Anticipating the inevitable, Glen Campbell wrote a song in 2014 that was both mournfully poignant and bittersweet. Reflecting upon the fact that in the end, his blessing would be having no awareness of losing the loves of his life.
His mind would have erased the memories, and though tragic to think about the devastating impact of such a condition, Campbell’s personal situation would become as though they never happened rather than a feeling of loss.
In those terms it would be a sense of calm and serenity.
“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
In the end, there is no way to tell precisely how long that tunnel of darkness may be. The only thing to do is to keep heading toward that pinprick of light at the end and savor the moments that remain.
That’s how the “Wichita Lineman” and his wife Kim coped. It’s a lesson of hope for each of us.
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was an award winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
He is founder of The Magellan Travel Club (www.MagellanTravelClub.com)
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