A caregiver’s most powerful words

This is open to debate, but here’s what I found:

Mon – and especially Dad – would get these dementia-based fixations about something. It could be anything, from going somewhere to doing something he won’t realistically be able to pull off or is even advisable. Like taking a walk downtown when he’s bedridden or investing in hairless chinchillas, for example.

So the powerful words?

“Remind me.”

Works (almost) every time.

What are some other “magic words” that help you in your caregiving experience? Please share.

Lady Vols’ coach Pat Summitt fought the good fight

  • Eight national championships.
  • More than 1,000 wins.
  • 39-0 record in 1997-98, won (another) national title.
  • 100% graduation rate.
  • Fought early-onset dementia since 2011; diagnosed at 59.

The first four on this list were easy compared to the last one.

Pat Summitt ended the fight June 28, 2016 at age 64.

Pat Summitt, winningest coach in Division I history, dies at 64 – ESPN

The Pat Summitt Foundation

Glen Campbell puts a face on Alzheimers

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.

The progression

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.”

Updates

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.