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.