Life After Hospice

We were discharged almost three weeks ago, and are now experiencing life after hospice.  It’s definitely not the same as life before hospice, back in August.  After all, Larry is far weaker, has far more problems eating, yada yada yada.

Every transition is hard.  Figuring out how to manage the new reality.  This one has been no different.  Emotionally, it feels like the race has gotten longer, the course is more difficult, and the pit crew has disappeared.

Then there’s the logistics of figuring out life after hospice.  Getting prescriptions refilled.  Making and going to doctor appointments.  The PCP meeting was annoyingly frustrating because they hadn’t received any info from hospice. I had to review his prescriptions from memory while they paged through his old files.  They needed forms from hospice to prescribe all the medical equipment we have.  Since they didn’t have the forms… no DME replacement progress.

The next appointment was with the neurologist who was caring and empathetic.  He did have the hospice information, but couldn’t understand why Larry was discharged.  He could see the decline and ended the appointment by saying to me “you can’t do this all yourself,” and ordered home health.

YES!!!  Finally!  Help!  By now I was exhausted trying to do the showers in addition to all the other things I do for Larry.  I have to help him across the bathroom with the walker and then support him as he steps up and over into the shower, next to the glass enclosure.  It’s really takes two people.  I am not a napper, but I am finding myself sluggish with fatigue every afternoon and not wanting to do anything fun because fun is just more work.

Yesterday, the home health nurse arrived and spent two hours doing an “intake.”  Asked lots and lots of questions, many of which were irrelevant, like what size catheter does he use. They don’t even do that for him so why do they care what size it is???  She wanted to review the proper procedure for catheterizing, even though I’ve done it 4 times a day for almost two years.

I asked about shower help and she said they don’t have home health aides. What we get is a nurse two times a week to come by and take his vitals. His vitals?  Really?  Okay, we will get physical therapy, speech therapy and occupational therapy, which is all good, I guess.  But it’s all stuff he’s had, and we could do ourselves if we were motivated.   It’s a lot of people coming and going, trying to get him “better” but not the help we really need.  He’s annoyed by it and I’m frustrated.

Hospice didn’t fit us because it was designed for dying quickly.  Home health doesn’t seem to fit us because it’s designed for transition from hospital to home, from sick to well.

A friend recommended trying another home health company, which would mean research, inquiries, and another intake process.  Someone recommended palliative care, which doesn’t exist here except in the hospital.  Another friend said check Larry’s insurance – it may cover an aide for showers.  Someone else recommended hiring the help we need (with the money we don’t have because I’m not working so I can care for Larry.) My mind spins with it all.

Friday I’ll just shower him by myself.  And I’ll probably hire someone.

BIG SIGH.

Figuring out how to do showers without help.