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.

The difficult side of caregiving: Finishing the hard, sad way

(Video shot by my sister-in-law Darlene and posted on Facebook. Dad received a military funeral at Riverside National Cemetery.)


Nut graf: When a caregiver’s job ends, it’s always because of something sad. Especially when your care recipient dies. It’s even worse when it’s a family member.


Dad went from skilled nursing straight into hospice care, then lasted another five days. He passed away March 2 at 89 years of age.

The last couple of days I sat with him in his room, monitoring his breathing, trying to make sense out of what he was saying, trying to keep him comfortable. Some days I’d sit on a stool next to the bed, my laptop close by, munching on cheese while talking to him a mile a minute. Our last lucid conversation was when I followed a nearby plane crash on Twitter. It hit some houses a mile away from where we lived, and he seemed almost with it.

But that was an anomaly, and I knew that. For the caregiver, everyone shifts from fighting to letting go. I pureed his food in a processor (gross) and thickened his beverages in a martini shaker to minimize choking. When he could no longer handle that, decisions had to be made. Family wishes made that pretty plain – no feeding tubes, no extraordinary means of keeping him alive.

Which meant time to let go.

On March 1, he slipped into a coma. I continued talking to him. I don’t know if a person in a coma really hears you, but I was playing it like he does. Dad stayed comatose for about 20 hours, then died at 5 p.m. I had my cousins at the house, and he slipped away while we chatted for a few minutes in another room.


For the family caregiver, the work does not stop there. It shifts into another gear. Getting hold of hospice. A call to my older brother. Phone calls and emails to notify friends. Texts with my support team in South Carolina. A call to the caregiving agency I’d just hired to help out, telling them to forget tomorrow’s appointment. Cussing out a phone solicitor who had the gall to call the house minutes after Dad died. Funeral arrangements. Putting together a tribute at the next caregivers/care recipients party at the local senior center. Dealing with lawyers and estate things.

As I write this, I’m packing to go home to South Carolina. We’ve hooked on with a Realtor, and hopefully it won’t take long to find a buyer for the house. I still have not had time to process all this or deal with the grief that’s sure to come. Busy-ness is a great deflector. I think the closest I’ve come to that was when I called the classical radio station to cancel Dad’s sustaining membership. Told them why, and thanked them for helping to keep him so happy. And dropping off some unused season tickets to the community theater so a drama student can use them. Oh yeah, and rattling around in this big house by myself gets to a guy after a while.


The caregiving experience will always be a part of me.
You’d think it’s a whole lot different for a hired caregiver, but it’s still really tough. A former girlfriend worked as a nursing home CNA, and she tended to get attached to her patients. When one died, another piece of her would also die. Finally she got to where she couldn’t work any more. She ended up driving a taxi.

What to do after caregiving? It’s really up in the air. I’ll be home in South Carolina next month, but the past three years will always be a part of me. It’s very possible more caregiving will be in my future. For sure I will continue this blog, though it won’t have the up-to-the-minute journal entries. But I learned a lot from this experience, and I’ll be glad to talk about it.


Declines, skilled nursing, and hospice: All are emotional

Nut graf: As dementia progresses, more care is needed. Some of it gets pretty emotional, and “hospice” is a loaded word.


Definition of gross: A pureed PBJ sandwich.
It’s been a rough month. Dad had been showing some decline a month and a half ago, then the brakes came off. Now he’s receiving hospice care.

To my understanding, hospice is for a person’s last six months, but when it’s late-stage dementia the time frame could be as much as two years. Still, the implications are pretty heavy.

Here’s how he got this far:


Journal entry, Feb. 13, 2017

Dad spent a few days in the hospital with some sort of bug and dehydration two weeks ago, and is now in skilled nursing. Lost his ability to walk, totally loses focus when eating, and gets real agitated. He’s on constant supervision, usually has to be hand-fed, and would be an escape risk if he was mobile. On top of that he’s had at least one UTI, and y’all know the drill there.

Today he a) tore the curtain rod out of the ceiling over his bed – still wondering how – and b) was having even more trouble eating. Beginning to wonder if he forgets how to chew.

Looking at options right now. Will start vetting potential relief caregivers, ’cause I’m gonna need it when he’s paroled out of skilled nursing. Neither Dad nor I consider assisted living an option, but I might have to be a little more realistic here.


Journal entry, Feb. 16, from skilled nursing

On a pureed diet right now. Looks gross, & the server wasn’t sure what was what. Choking has been a problem.

One of those dementia fixations. He’s wearing those gawdawful padded boots & he wants the okay to take them off. The nurse says no. So he’s asking anybody who passes by. Orderlies, delivery people, other patients, visitors, food service personnel. Getting on everybody’s nerves. It’s pure dementia.


Then I got word that Dad had plateaued in his physical therapy. Meaning what I saw was as good as he was going to get. No longer ambulatory, no longer continent, and his dementia had taken a dive. Now he’s in late stage.

That’s when I started seriously considering getting some backup:


Started looking into caregiver agencies who can spell me at least one day a week. That’s the best-case scenario. Worst-case may have to be like a nursing home. Hate that option. Part of it, I’ll admit, is that going to a nursing home is tantamount to me admitting defeat. But come on, let’s be realistic and screw what my ego says.


On Feb. 23rd, the doctor ordered hospice care. In fact, that was right when I was interviewing a potential caregiving agency, so this changed the equation by a lot.

Meanwhile for this caregiver, this meant getting supplies — hospital bed, wheelchair (through hospice), a food processor because his food has to be pureed, comfortable clothes, all the incontinence goodies, and whatever else I could think of. Was slap worn out after all that running around.


Journal entry, Feb. 25

Dad discharged at 1030. Straight into hospice care. He was brought home and set up in his brand new hospital bed. He likes it, but I think he especially likes coming home. We hung out and talked for a few minutes, then he went to sleep. Everything’s copacetic.

Nurse’s assessment done, some supplies here. Follow-up tomorrow. Dad’s sawing logs right now, but I can understand that. This moving is sure hard work.


So now I’m a little tired, but from here on out the emotional toll will be the worst part of it. Oh yeah, and the self doubts. Could I have done things any different? But here’s reality: All of this was inevitable, and hospice care is best for him considering his condition and longstanding family wishes.


I actually have some respite, and I’m bored

Nut graf: Respite means I should be resting, but …


So I’m getting some unscheduled rest. Except …

Dad got sick about a week ago and had to go to the hospital, and he’s now in skilled nursing. At least he’s in the hands of professionals and I get a break, right?

It ain’t necessarily so.

I visit every day, about two or three hours. Just hanging out. He’ll sleep through some of it, and I get to see him get real restless when he’s up. He wants to escape, and he has asked me if the car’s outside. True fact. He gets the separation anxiety when I leave, so I usually wait until he falls asleep or make a show of handing him off to one of the professionals. Kind of like changing of the guard.

Meanwhile, I’m getting some rest. Need it.

  • Doing things around the house. Packed up Mom’s old cookware and loaded it in the garage (still wondering why a person who didn’t cook have a dozen measuring cups).
  • A little bit more running around.
  • Catching up on my reading.
  • Even treated myself to a pizza.

Things like that. Plus I have enough personal irons in the fire; a few projects that I’m working on.

So why am I bored silly?

Breaks in a routine do that to me. I never did vacations well when I was in the work force. After about three-four days I’m ready to go back to the salt mine. Just part of my nature.

I guess this means the caregiving thing has pretty much taken over my life.


Talk to me: Does unscheduled respite disrupt things for you? How do you handle it?

Flu can make life interesting. Or not.

Nut graf: A flu bug can create all kinds of havoc for the caregiver. Be prepared for when it happens, because it probably will.


Ugh. Get thee away.
Dad had a real rough week. Couldn’t walk, couldn’t straighten himself up in a chair, couldn’t do much of anything.

His cognition, not real strong at this point in life, also took a hike.

A heavy cold or flu will do that every time.

For a day or so, he retired to his bed. Had me worried, of course. He keeps his own hours, but this time they were all over the map. Up at 4 a.m., sleeping until early afternoon, all that fun stuff that did a number on my own schedule.

Then he retired to his room. Didn’t emerge all day. I went in to check on him, and he was reclining on the head. Not a bad idea ’cause he needed to go there sometimes, but it’s still not the most comfortable seat in the house. Later I saw him sleeping on the bathroom floor.

Finally got him up and into his bedroom chair, which is sort of a way station when he’s feeling lousy. A few minutes after I got him there, he asked me if it was dark outside. He wanted to take a walk around the block.

“You might want to get your pants on first,” I said.

Oh.

Moved a TV tray in his room for him to eat off of, and a portable latrine so he wouldn’t get that far. I didn’t want to use that, because Mom used it and it has some memories attached to it.

Dug up my own tools, too:

  • My gait belt for hauling him around. I had to find that, which is easier when it’s not an emergency. Anyway, it’s now close by.

  • My back brace. I told him it’s not for him. It’s for me.

I usually sleep in my “cabin,” a converted patio by the house. All the comforts of home, including my recliner, laptop, and library. But when he’s like this, I have to constantly monitor him. Like all the time. So last night I closed the cabin down and slept in the spare bedroom next door to his. More weird feelings. That was Mom’s room, in fact she died there two years ago. About 40 years earlier, it was my room. Last night was the first I’d slept there in all that time, and that was weird.

This morning he’s feeling better. Sitting up in his chair, eating breakfast from his TV tray. His cognition is still shot.

“I just closed out the year,” he told me. I think that was a leftover from when he owned a liquor store, and it was a paperwork thing. It took him a few minutes to get that sentence out.

“You did?” I asked.

“I just closed out the year.”

“Good,” I told him. “I hate leftover stuff hanging around.”

Fake it, man. Fake it.

Scary stuff, but it’s the flu. Just routine seasonal stuff, right?

Except at that age you’re kind of fragile and it’ll really nail you. If your cognition is hanging by a thread, a good working dose of the flu will snip that thread.

He’ll be okay in a day or two. A little stronger. Made it to the bed by himself (he said). I know he was able to straighten himself in his chair by himself.

Good sign.

But here’s the thing: All that from the flu.

My joke is that the flu is like the Mummy’s Curse. The only way to get rid of it is to give it to somebody else.

Gee, Dad. Thanks a pantload.


Talk to me: How does your loved one handle a flu bug? Since it’ll probably affect you, how do you handle it?