The Rhinestone Cowboy's struggle with Alzheimer's disease

Glen Campbell, the world's Rhinestone Cowboy, now 79, has been suffering with short term memory loss for many years but was only diagnosed with Alzheimer's disease in 2011. As the lyrics to the famous song sung by Glen written by Larry Weiss (1975) so poignantly says:

There's been a load of compromisin'. On the road to my horizon. But I'm gonna be where the lights are shinin' on me ...

Glen and his wife Kim had decided to go public with Glen's diagnosis because he'd hoped to say farewell with a final set of live performances – and they wanted his fans to be aware of the musician's condition.

"Glen is still an awesome guitar player and singer," said Kim in an interview with People Magazine. "But if he flubs a lyric or gets confused on stage, I wouldn't want people to think, 'What's the matter with him? Is he drunk?' "

Ever the showman, Glen played at the 2012 Grammy Awards where he pointed his microphone at the audience for each chorus, inviting them to join in on the line, "Like a Rhinestone Cowboy!" and the audience all joyfully obliged. They danced in the aisles, stamped their feet and sang on the top of their voices.

The performance, delivered without a hitch, ended in a hail of cheers and applause as Glen shouted, "Thank y'all so much!" then turned to leave the stage as the lights went down and could be heard gamefully asking, "Where do I go?"

Glen played his last show of his 'Farewell Tour' at the small Uptown Theatre in the North Bay of Napa in November 2012 marking the end of a remarkable 60-year run of performing for millions of fans across the globe. He had his wife and children by his side, then;

Like a rhinestone cowboy, Riding out on a horse in a star-spangled rodeo

Glen was still recording new songs in 2013 launching his last album See you there. As long as Glen was enjoying the activity of performing, as long as it was more beneficial than frustrating, the family allowed Glen to continue to pursue his personhood by doing all of the things that he had always done, which in this case was enjoy the art of his music, not just recording it and playing it, but performing it in front of "live" audiences. His family wanted him to go for as long as he could, to be connected, to do what he loved, what was so familiar.

This is challenge with all families stricken with this disease, how long can our loved one carry on? What will we do next? What can we expect? Do we use home care or do we move our loved one into a nursing home?

In April 2014 Glen was moved by his family into a high care facility. The announcement by the family came just days before the documentary of the final tour, titled "Glen Campbell... I'll Be Me," got its world premiere at the 2014 Nashville Film Festival.

Glen and his family's experience with Alzheimer's has so many parallels for others suffering with this disease. Mara Botonis writing for the Alzheimer's Reading Room about the documentary I'll Be me, said;

"From our home we sat in solidarity, like many others around the world, alternately nodding, crying, cheering and most importantly relating to the different parts of the way Glen and his family travelled on their journey while coping with this disease. The reason I feel that this was such an important moment wasn't so much about Alzheimer's Awareness becoming more and more mainstream as evidenced by its more frequent appearances recently in pop culture (music, movies, television, books), but because although there are more than 15 million caregivers and 5 million persons living with Alzheimer's currently in the United States. This documentary helped us feel a lot less alone and lot more comfortable being "seen" by the eyes of America."

According to Alzheimer's Australia there are more than 342,800 Australians living with dementia and Alzheimer's and, without a medical breakthrough, the number is expected to be almost 900,000 by 2050. Alzheimer's is not a normal part of ageing, although the greatest known risk factor is increasing age, and the majority of people with Alzheimer's are 65 and older. But Alzheimer's is not just a disease of old age. Up to 5% of people with the disease have early onset Alzheimer's which often appears when someone is in their 40s or 50s. In Australia there are over 24,000 people with the early onset form. The average Alzheimer's sufferer will live six to eight years, but many live for 20 years. Costs can be astronomical and rise over time as the person needs more care. At the moment the level of the bond (deposit) to get into a nursing home is usually about $350,000 to $400,000 but can be as high as $1 million. The accommodation bonds are set by the operators based on the level of care required, facilities and local property prices.

As Mary Botonis says for everyone, "one of the saddest parts about the Alzheimer's affect on someone you love is the isolation that often comes with it. Friends and family may retreat, unsure how to interact or relate after symptoms present themselves. Well-meaning primary carers may avoid certain people or situations that they feel may be over-stimulating or lead to potential embarrassment for ourselves or our loved ones."

In March 2015 NBC News reported a feud that split Glen Campbell's loved ones amid his decline from Alzheimer's disease. This dispute strikes a chord with Australian families as dementia diagnoses fuel similar money spats and jealousies, leaving lasting wounds. Two of Glen's eight children from a previous marriage took legal action against his wife Kim. They assert she has "secluded" the singer and prevented them from "participating" in the 79-year-old's medical care.

This a classical case of families not discussing and planning for the impact of living with Alzheimer's. The stress, fear, sadness and helplessness felt by families needs to be carefully considered and managed. Putting someone in a nursing home can be seen as "locking them away", severing family involvement.

"We encounter a lot of families in turmoil," says Ruth Drew, director of family and information services for the US Alzheimer's Association. "With a disease like Alzheimer's, the strain of grieving happens along the way and the strain of caregiving and financial decisions exacerbate it."

The financial impact can be keenly felt. Inevitably the decisions fall to one person, most often the one given the enduring power of attorney. They can be accused of being dictatorial, too frugal, trying to keep expenses at the lower end. Other family members can be offended by that; words like "The money is there for [my mother], not to be saved for our inheritance."

"There's always that one kid who feels unbridled resentment," says Drew. "And the ones who are not participating in the care, think he or she is stealing all mom's money."

Everybody's heart may be in the right place, but they can disagree about what "right" is. The tragedy is that, with some simple early strategies around communication, understanding and planning, all this heartbreak can be avoided. Families need to "sit down at the kitchen table" and talk about their end-of-life wishes, while parents are still healthy.

As Mara Botonis says, "No one living with Alzheimer's, or loving someone that has it, should ever feel that they need to withdraw from important parts of their life. This is despite the difficulties Alzheimer's brings or fear of embarrassment because of it. This type of thinking is still so prevalent in our society, it reminds us of how hard we all still need to work to make the world a more friendly place for all families impacted by this disease."

My favourite Glen Campbell song is Wichita Lineman written by Jimmy Webb (1968). I have the evocative image of a lonely man, isolated in his sadness, up a power pole on a distant country road, missing a lost love while "Searchin' in the sun for another overload."

I hear you singin' in the wire. I can hear you through the whine, And the Wichita lineman is still on the line

It's comforting to know that Glen Campbell will always be out there, our Wichita Lineman will always be in our hearts ... still on the line.

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