Late one even for Dad. He was up after noon (usual) and didn’t have breakfast until 4-ish (not usual). I notice he’s doing that more, and skipping meals. I don’t think he’s pulling a Mom (I’m not eating and you can’t make me) but he’s just slap forgetting.
I notice eating habits go completely to pot when you’re seriously into dementia. This happens for a number of reasons, but the bottom line is your care recipient isn’t eating so well.
One of the things I heard in my caregiving class is that food doesn’t taste the same. Or maybe it all does. Maybe everything tastes like chicken.
Eating, I think, becomes more like a fuel stop than a sit-down at the table enjoying something really good. Dad lives on those frozen microwaved rations, and it does all taste the same to me. But that’s dinner.
He will have some of my homemade spaghetti once a week. He’s fine with it as long as it’s not too spicy. But other things he won’t notice — like the onion and bell pepper I use in it. He doesn’t like either, but if he doesn’t notice them …
I think he’s forgetting to eat more. We do keep a schedule; lunch at 5-ish, dinner between 9 and 10. But I usually have to prompt him.
Other eating challenges: He had jaw pain that kept him from eating for a while, and it took a while to catch on to the idea of smaller bites. He’s fine with it now, but I still have to monitor that.
Best thing I can do here is have that schedule and stick with it. I usually eat with him (except breakfast), so that part’s easier.
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.
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.”
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.
Journal entry from Dec 17. A little dated, but relevant:
We had a late one last night. A Christmas party at Ella’s, and this was way beyond Dad’s stamina rating. He was a hot mess coming home. Okay, I was kinda sorta, but he needed a walker to get to the car. I think we’re going to start traveling with his in the trunk, just ’cause.
We got lucky here. Ella’s 92 and not always so steady on her feet. Though I’ve never seen her with it, she does have a walker she keeps around the house. Dad used it to the car and I brought it back right away.
His balance is shot. Falls over a lot. Part of it is aftereffects from his strokes, part of it from a bad leg, and also because he’s top-heavy. Still a tall guy, and he really does look like a busted construction crane tottering down the street when he walks.
He keeps his walker in the bedroom, where it holds extra blankets. He really needs to use it, but I’m not gonna make him. You gotta understand this. It’s a guy thing.
Mom would have pushed him, perhaps badgered him to use the walker. She was protective that way, and never would have understood how we guys think.
I still had to make the executive call. We have three walkers around the house. His blanket rack is one. Mom’s old one sits in the garage, and there’s no way he’ll want to use that one. The third was kicking around, and now sits in the trunk. Just in case he needs it.
I really expect him to bite the bullet and use his fairly soon. But he has to make the choice. He may have lost a lot of his faculties, but he still has some pride and dignity. Don’t want to take that from him.
Was thinking a little about Debbie today. She was a girlfriend around 1999-2000, and today’s her 53rd birthday. How time flies when you’re having fun.
Debbie worked a lot of different jobs, from taxi driving to construction to working with special-needs kids. But she was in the nursing-home biz for a while. A CNA, I think. She loved it and she was a real people person, but there was a problem. She tended to get attached to her people.
Her mom told me about it. A problem with people in nursing homes is they tend to die, and when you’re attached to them a little bit of yourself dies. That’s what happened to Debbie. She finally got to where she couldn’t work any more.
Okay. Situation was different for her. She was a hireling, and she didn’t know her people before taking care of them. Not quite the same as taking care of a close family member, but some things remain the same.
I think it’s a thing of detachment. Maybe it’s my journo training, but I’ve always been able to suspend the feelings, step back from the situation and take care of business. When wiping Mom’s butt I never looked at her face. Made it easier to forget for a minute who I was taking care of.
Can everybody do that? Probably not. But it’s one of those things, like a sense of humor, that can keep you from going nutso on the job.
When I left California in 1990, I swore there was only one thing that would bring me back there to live.
On May 2, 2014, that thing happened and I came back from South Carolina.
I became caregiver to two aged parents. And I had no idea what the Sam Hill I was supposed to do.
There are not, like, college classes to teach you all this stuff. You’ll find courses through some nonprofits (think Alzheimers Association here), but you end up learning as you go.
But there I was, taking care of both parents. Dad’s now 87, a two-time stroke victim and easing into late-stage dementia. Mom was 85, immobile, incontinent, and determined to shut her business down. She did pass away six months after my arrival, hastening Dad’s decline somewhat.
Okay. I’m not the only one in this position. It’s a new occupation for the baby boom generation. People are living longer and many folks my age are acting as caregivers.
I’m not alone in this. But sometimes it feels like it. From the many I’ve talked to, almost every family caregiver feels alone in this.
Meanwhile I’m making the stuff up as I go along. Learning about the mechanics of dementia. Picking the brains of those who are in the same boat as I am. Keeping in touch with my friends from back home; they’re always an encouragement to me. Doing what I can to cope.
This blog gets a little personal sometimes. I’ll mine my journal for material and share an excerpt or two, but most of this is based on practicalities. Stuff I learned, most likely the quick-and-dirty way.
(Note: I will concentrate on coping mechanisms and various ways a caregiver can do the job without losing his sanity. Nothing here should be construed as medical advice, so don’t waste your time looking for it. I’m not qualified for that, I don’t want to risk the life of your loved one with crappy advice, and I don’t want to get my bee-hind sued.)