This has been difficult to write. I’ve lost some sleep over it. You’ll learn why as you read. Forgive my wordiness.
Shortly after my last post, The Glen Campbell special I’ll Be Me aired on CNN. Campbell, as you probably know, was diagnosed with ALZ in 2011.
The promo for the documentary reads:
“In 2011, music legend Glen Campbell set out on an unprecedented tour across America.
Glen and his wife went public with his diagnosis and announced that he and his family would set out on a ‘Goodbye Tour.’ They thought it would last 5 weeks, instead it went for 151 spectacular sold-out shows over a triumphant year and a half across America.
The film documents this amazing journey as he and his family attempt to navigate the wildly unpredictable nature of Glen’s progressing disease using love, laughter and music as their medicine of choice.”
I did not want to watch this program. Were they going to hit us with overly sentimental images? Were they going to play with our heart-strings or impress us with their buck up and show up grit?
I missed the first twenty minutes not wanting to make a decision. But, then I braced myself with some comfort food, settled on the couch, erected an emotional wall, and gripped the remote for a quick escape when the story hit too close to home. I will not say that I was pleasantly surprised. But, I will say that the documentary was oddly startling and comforting.
I was amazed that Campbell was able to play one song to completion let alone a full set during an entire concert, but he couldn’t button his clothes. My mom can button her clothes, but she can’t complete a task.
I was amazed Campbell couldn’t remember his early life, but he could learn a new song. (Listen to it at the end of this post.) My mom can remember her early life, but she couldn’t learn a new song or a new recipe or a new . . . anything.
We see Campbell watching old family movies and he is unable to recognize his older children. His wife, Kim, must remind him who they are. My mom sometimes doesn’t know who I am and I have to remind her. At one point, Kim explains to the audience how Campbell would pull the old disappearing act in the hotels during the tour and she’d have to search for him.
To the uninitiated, wandering may seem silly. After all, this person is an adult. This naive perspective hinges on irrational and is lacking wisdom.
In truth, wandering is a panic moment. It’s like a momentary loss of your soul when the person you care for goes missing. I recently saw a Facebook post alerting us to a woman with Alzheimer’s in a nearby city who had wandered from home in search of her deceased dogs. Her family was still searching for her and appealing for help. I shared this story with my sister and said I hope this doesn’t happen to us.
Glen Campbell now lives in a full-time care facility in Nashville and can no longer play music or carry on a conversation or recognize his wife of thirty-two years. This was a difficult decision, I’m sure. We know at some point caring for someone full-time can reach far beyond the skills, ability, or strength of the caregiver.
Unfortunately, two of Campbell’s children disagreed with Kim’s decision. They have sought legal action against her claiming she had secluded the singer and prevented them from participating in Campbell’s medical care.
Robs and Kills
This disease is probably fascinating for neurologists and gerontologists to study but to families who live with it, this disease robs and kills. Physically, emotionally, and relationally.
Shortly after my last blog post, my mom did escape in the middle of the night to go to the park to search for her deceased dogs. My dad was woken up at 3:30 in the morning by someone pounding on the door. It was a neighbor with my mom.
(Thank God. Thank you DM.)
DM told my dad that my mom had knocked on his door and told him she couldn’t find her way home, but she knew her address. She was five houses away from home.
I didn’t learn about the escape until two days later.
To say I was confused and frustrated would be an understatement. I was a wreck.
I worry. I’m a petri dish of worry warts.
Caregivers experience extremely high levels of stress. They are often sleep-deprived and depressed. They are slowly losing their spouse, they must be alert twenty-four hours/day, and they rarely get time away from home.
Elderly spousal caregivers have a 63% higher mortality rate than noncaregivers of the same age. In 2006, hospitalization of an elderly spouse was found to be associated with an increased risk of caregiver death.
These stats worry me. (Worrywart, remember?)
A few years ago, I enrolled my mom into an adult day care to give my dad a break. That backfired. He could only handle it for a week. He unenrolled her. Mom was a day care drop out because it was too stressful for my dad.
I wonder if the status quo is king with my dad. Maybe in his mind, it is not something to be conquered or tampered with. On the other hand, holding tight to the rule of status quo isn’t working. You know the definition of insanity, right? Doing the same thing, the same way and expecting the same results.
Though his mind knows the truth I think his heart expects things to return to normal. I get it.
And yet, how do we honor both our father and our mother in a no-win situation like this?
What’s the solution?
Full-time care, of course.
Studies show that many caregivers who institutionalize their relative report depressive symptoms and anxiety to be as high as it was when care was in the home. Perhaps this is why dad won’t put her in a home.
It’s the old adage, can’t live with ‘em; can’t live without ‘em.
He just isn’t ready.
So, we take it day by day until . . .
until something worse happens? Until she trips in the street and is run over? Until she just keeps walking? Until she’s a Facebook post?
Mom can’t make any decisions about her care. She’s the one being robbed of her memories and her family and is slowly dying from this disease. Dad won’t make any decisions because this disease is robbing him of his wife in addition to killing him slowly from the stress.
My only other thought was that my siblings and I need to gang up. We need to come together and knock around a few more ideas and then implement them regardless of the consequences because doing nothing could, in fact, wind up killing us all or at least, guaranteeing that we will be circulating mom’s pic on social media.
She is the one person who matters most in all this chaos.
And she is the one person who won’t miss us at all.