Tuesday, June 30, 2015

The Gift of Glen Campbell's Public Alzheimer's Journey

Watching a loved one fade away through Alzheimer's is mind-blowing and heart breaking. Sometimes the progression is slower. Sometimes it is faster. But over time, the very fabric that made your loved one who they were is gradually stolen by the disease. Yet, as I learned through my own mother's Alzheimer's journey, the qualities most deeply imbedded in the character of your loved one are the last to go.

Glen Campbell, a singer whose songs touched me as a young girl, and still touch me to this very day, and his family, have courageously allowed his sad Alzheimer's journey to be a public one. And in doing so, they have given a gift to all who have lived with Alzheimer's and perhaps an even greater gift to those who have not. By allowing a window into the journey and the uneven way Alzheimer's robs a loved one and their family of core qualities, Glen and his family have put a very human face on this far too prevalent condition.

In a very poignant CNN documentary this past week, I watched Glenn's wife Kim, and daughter Ashley reflect on not only Glen's Alzheimer's journey, but also their own experience walking beside him as bit by bit, Alzheimer's stole their husband and father from them. Even as Glen became disoriented--not being able to distinguish a trash can in the corner of the bedroom from the bathroom at night, his most deeply fundamental quality--singer and musician--persevered on for a very long time. He and his family arranged for him to do a farewell tour in 2013, two years after his diagnosis. Watching Kim struggle with Glen to get him to take a shower before a concert, seeing Glen resist like a young child, only to take the stage and start singing and playing his guitar with the same skill and impact as he has had during his entire musical career was a powerful image.

My mother's great life passion was gardening, and as her disease progressed she went from normal gardening activities to lying on the grass for hours in her pajamas picking sticks from stones to lying on the rug in her condo picking at lint on the carpet relentlessly. Same gestures. Different form. Purposeful when really gardening. Sad and even mind-blowing when reduced to the ritualistic movement of fingers picking at something, anything, like a soothing, repetitive motion.

Watching Glen's disease progress over the course of the documentary, not only at home, but also on his beloved stage was sad and so real. Over time, he could not remember his guitar chords, so he had to watch his daughter's fingers on her banjo, could not remember the words to the songs he knew so well, so he had to read a teleprompter, and eventually could not maintain a focus on performing songs at all. It was when he could no longer stay focused on the performance itself, that Glen's family realized he could no longer continue to do what gave him the most joy in life. If Glen talked candidly, sharing his vulnerability with his audience or ended up singing the same song twice in a set, the audience could easily embrace him. But when he could no longer talk to his audience, begin a song at all or connect with his band who were doing all they could to help him start and back him up, the essence of who everyone had known Glen to be had sadly faded too far into the oblivion Alzheimer's creates.

Reading in the paper that today Glen lives in a memory facility, and has decompensated to the point he can no longer speak, communicates only in gibberish, and is in many ways only a shell of the man his family knew him to me, was heart-breaking. Yet somehow, having the realness of this journey--both for Glen as someone with Alzheimer's, and for his wife and adult children is a refreshing gift. It makes those of us who have known Alzheimer's in our own family feel not so alone. And perhaps it encourages those suffering from or caring from loved ones living with this illness to reach out, to not be in it alone.

It takes a village for so many things in life. And living through the Alzheimer's journey is one of them. I applaud Glen Campbell and his brave family for inviting us to come together as a village.