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

This always makes me. Cry

Posted by Darlene Benson Pulsifer on Wednesday, March 15, 2017

(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.

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.


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?

8 Ways a Caregiver can Maintain A Healthy Level Of Insanity

Note: This is from The Caregivers Voice. Taking care of someone is enough of a strain, so ya gotta do something to keep things loose. Here are a few ideas:

8 Ways a Caregiver can Maintain A Healthy Level Of Insanity

You’re welcome.

Talk to me: got any other ways you use to amuse yourself? Please share.

Sense of time? What sense of time?

I guess when dementia takes over, a guy’s sense of time goes all over the map. We have clocks spotted all over the house, and he believes none of them. So his schedule is even more messed up than usual. 

Like last night. We were fixing to go to a caregiver’s party, entertainment provided by a bunch of musicians including myself. And getting everything out the door took some real doing.

But Dad running behind. He had his usual leisurely lunch, took a while to get his shoes on (with help), and took 10 minutes to locate a handkerchief. We got out the door and over to Goeske, giving me maybe 15 minutes to load in and sound check. 
From the journal:

That may be the new normal. His sense of time is all shot. Right now there are two time frames in the house: Daylight and dark. He’s sleeping in his chair more, and he’ll often be up rattling around at 3 or 4 in the morning. He was never the type to be on time for things anyway, but lately it seems someone sure busted his watch.

His new clock is called “looking out the window.” As I wrote this he made something like his thind or fourth trip in an hour to look outside. He even interrupted his lunch to do this.

“It’s dark,” he said after meditating on the blackened view for a few minutes.

Now myself, having a bizarre sense of humor, had to check.

“It sure is, isn’t it?”

It’s not supposed to be this dark.”

I move to the other side of the house and check the windows the other direction. “Dark over there too.”


“Yeah,” I say. “It’s dark everywhere.”

Hey, caregiving’s strenuous enough. I have to amuse myself somehow.

Don’t know if it’s a sundowning thing, but his schedule is all crazy now. Meaning my schedule is all crazy. Now if he starts getting up at like 7 in the morning, I’ll know everything’s gotten weird.

I remember in some of my caregiving classes we talked about sundowning but I never really experienced it until lately. Maybe this is it, and already I don’t like it.

Guess this means I have to adjust.

Talk to me: What are your experiences with sundowning? Please share.

Staying ahead of the food fixations

God help us if his tastes change overnight.

Grocery shopping gets to be a challenge if you’re a caregiver, even if it’s simple. You may find your care recipient gets strange tastes sometimes, and it’s difficult to keep up with them.

Like Dad. His diet is fairly simple, yet it’s an abominable one. Prepackaged frozen rations every night. No variation; he has three that he chooses from. All Italian, all heavy on the pasta, all relatively tasteless.

Doesn’t bother me any, but I’m not eating those. See, I’m a fairly decent cook. All kinds of great Southern meals: Ham hocks with butter beans and cornbread, and fried catfish with hush puppies. Some Mexican, homemade Texas chili with tortillas made by hand. Also my world-famous spaghetti. But these represent sea changes he’s not ready for, so I’ll have several things going in the kitchen. His microwaved meals, and whatever it is I’m eating.

But he gets on these food fixations, and they occasionally change. On top of that, he’s heavily into bulk buying. Keep that freezer full, a whole bunch of everything, rotate the new ones in behind the old ones. Just like he did when he owned a store.

So you can guess the rest, right?

Anybody want some rice bowls?
We still have two cases of teriyaki rice bowls in the big outdoor freezer. They were one of his staples until about a year ago, at least once or twice a week. Then he decided he was tired of them.

I can understand that.

So there they sit. I’ve eaten one or two of them and it takes a ton of pepper and other spices to make them edible. Fortunately, they freeze well and they’re so shot full of preservatives they’ll outlast the family’s seventh generation.

Bananas were another food kick for a while. I started picking up about a dozen per week, knowing he’ll eat most of them. That’s okay, I like them too. But then he stopped, I was getting full of bananas, and what was left started turning funny colors. Dad’s so resistant to the idea of wasting food that I kept them in the kitchen until they turned liquid inside the peel.

For a long time, cashews were the thing. He kept jars and jars of them, and he saved the empties. When I took over this caregiving thing, I noticed the stacks and stacks of empty cashew jars in the garage. He knew he had uses for every one of them. You wouldn’t believe the negotiation I had to do just to get rid of them. (Footnote: I use some of the jars now as canisters: Rice, cornmeal, masa flour, regular flour, and grits. Now I’m running out of them.)

There’s always Moose Tracks.
You guessed it. He stopped eating cashews, so now we have several full jars.

We still have several large cans of instant cappuccino, which I won’t drink. Feeling queasy just writing about the stuff. Yep, he stopped drinking that too.

Now he has a glass of milk with breakfast and a glass with lunch. That’s fairly recent, so I have to watch and anticipate any changes in his tastes. At some point he’ll get tired of the milk.

I guess that’s a dementia thing, and maybe part of aging in general. I understand the part about the taste buds losing their touch. About the last thing that remains is the taste for sweet stuff.

His taste for Denali Moose Tracks ice cream will probably never die. Unless it does, but I’ll make sure that doesn’t go to waste.