Showing posts with label changes. Show all posts
Showing posts with label changes. Show all posts

Wednesday, September 3, 2025

Progressing

I'm there, I finally made it.

Made it where?

He smiles at me and flutters one hand as if directing someone. It is 3AM, what a magical time.

Later, he stares intently at the the bedroom wall.

Hey. The chair moved. Who moved it. It moved.

I look and the chair is there where I left it earlier. I just nod because no answer is needed, he is just talking about random things. 

Charlie slips into the room quietly and asks to get up on the bed. He lays next to Rich's feet quietly for hours. 

Don't lose the keys.

Ok.

Later.

Wait until things hard up. He nods. I nod back.

We attempt some coffee and some cereal. Then he insists on getting up and I tell him he can't and explain why. It crashes his 02 and rockets his heart rate.

He thinks a while then says.

When CAN I get out of bed?

I'm not sure how to answer this as we've been through it for the past 3 days. He starts to try and get up and I have to tell him.

Not now.

Then when? He gives me a hard stare. When can I go fishing again. What day is it? I want to go fishing tomorrow. When can I go fishing again?

I'm not one to lie so I say.  You may not be able to.

I'm stuck in bed now?

Yes.

Then I may as well be dead. 

I don't know what to say.

Am I dying?

Yes.

Good, then lets get it over with.

We'd had this conversation yesterday about Hospice about dying and how they were making sure this part was not painful. I'd asked him if he was okay with it. He was. I asked if he was afraid. He wasn't. We talked about it for a while because no one else was around to bother us. 

Things changed rapidly from Monday to Tuesday morning. The signs were there. The vacant stares and looks, the non-responses. Yet guess what, we still could eat ice cream or a few bites of it for breakfast. Because. 


Why not? Because ice cream is his weakness. He loves his sweets.

Steve spent the most time with him after the nurse and social worker left. The two old coots chatted and laughed and life seemed almost as if it were normal if Rich hadn't been stuck in a hospital bed. Since the guys loved hunting together for years, Steve brought Rich an unusual pistol with a 16 inch barrel for him to admire.

By Tuesday night he didn't know who I was at times but still let me give him his liquid meds. Lucidity comes and goes. Sometimes he knows who I am and other times not. At least he still lets me attend him.

Alli who has seen him twice a week since he started Hospice came out 'off duty' last night to see Rich and to just give me some company and support. Some people go way above and beyond.

The progression continues with something like a wave of up and down. Good, a little less good, a little more good, a little less good, and eventually ending.



His daughter did show up late in the afternoon with a chiffon cake which made Rich bright eyed. She handed me a piece that she cut and put on a plate and I told her to take it and help her dad eat it. She gave me a side look when I handed the plate back to her. 

Rich loved it and made a right mess of things while eating it. I handed his daughter some paper towels while I went back to washing dishes and folding clothes.

Her husband sat at the kitchen table most of the day at the kitchen table and stared at his phone. His daughter joined him while I tended to things. They had to leave early so they could go out to eat. [meow...never asked if I'd like something...😼]

I'm pretty sure I had some sort of expectations of them other than them parking themselves in my kitchen for the day.

So it goes. Family Dynamics can be strange at times.

The Progression continues. It could be a couple of days or a couple of hours. But I am here and that is what is important to me.


Sunday, April 20, 2025

More changes... and adjustments.

 Well, things are changing again which is how life goes, right?

The Dexamethasone has helped with the breathing and with the appetite [none at one point] and wakefulness. In some ways the wakefulness is overbearing. Often hubby is experiencing being awake most of the night and not having any day time fatigue. 

He has asked for breakfast at 3:30 am. Uffdah. It gives a whole new meaning to making coffee while bleary eyed. After exactly 2.5 cups, the oatmeal must be made in an exact prescribed manner. Each day I am given the specifics, even though I've memorized it.

At first I get peeved, then I remind myself that the DXM disturbs his sleep cycle and he has dementia. This is how he lives day to day. Our new ab-normal of sorts.

It seems that every other day he actually sleeps the night through and I have trouble waking him. I imagine his poor ol' body is just exhausted after a 20 hour marathon the day before. This effect is from the DXM interrupting the cortisol in his body so his brain isn't on the same clock as mine.

Meals. Every two hours.

"Can I ask you something?" I hear. 

Sure.

"Can I have an apple/popcorn/cereal/toast/chips/cheese and crackers."..name something that is eatable and that is what he wants. Or "I have a taste for...a banana split, liver or onions, chocolate cake...", or something SO specific that I would have to go shopping for it. I usually placate him with the intention of doing exactly that.

My thought process. He wants it and it won't leave his mind. I have a 76 year old toddler. At least he doesn't stomp and throw a tantrum. I do my best to accommodate. Why not? One day I won't be able to.

I just ordered a 'camp' bed to put in the living room so I can be closer to him at night. Our only other bedrooms are up the stairs. I've always wanted one of those for sleeping on the porch on summer nights so I can watch the stars overhead.

Time to redecorate! See, I will find something positive in this. I ordered a nice 'Antique Rose' blanket and matching curtains since the camp bed will be next to the porch windows. I might as well make it my 'special spot' for the duration.

The Hospice nurses knew that Rich was having some trouble with sleep but it has gotten much worse. The up side is that I found some programs he might enjoy watching. 

Here are a couple of funnies to go along with Caregiving.



Some good news is this. The Social Worker for the VA Caregiver program and I talked last week. I inquired about Respite Care. 
Destiny called me [Yes...very cool...THAT is her name] and is now interviewing a couple of candidates for weekly respite.

YES!



and I can arrange to go to the gym and maybe even have lunch with a friend.

I qualify for 8 hrs of Respite Care a week. I feel like somehow I won the lottery. I'm not sure what my share could be yet, but the fact that someone who can be with hubby while I do the things I need to get done?


Priceless.

I'll split it between two days a week.

Fingers crossed for this.


One day at a time.

A lesson I just learned to accept: