on hospice at home now

The hospital bed is a godsend–should’ve gotten one 6 months ago. No, I don’t sleep any better (so far, worse), but at least it isn’t because he’s lying crosswise and I can’t stretch out, he’s leaning on me, or I’m worried about waking him when I roll over, or have to wash the bedding coz he peed on it, and I don’t need to sleep at the edge of the bed or fight for my share of the covers. And he’s fine about getting into the hospital bed!

My aide had to cancel today–her son is struggling with asthma and she’s taking him to the dr. She offered to come Saturday instead, which is fine by me. In fact, I’d prefer to have an aide MoTu and ThFrSa so I don’t have 2 days on my lonesome in a row.

He pooed in his Depends this morning–relatively easy cleanup as I detected it almost immediately, and he cooperated while standing to let me deal.

He’s eating less food and drinking less and spitting out pills more. As long as he takes his finasteride (prostate pill), I think I can deal. He doesn’t sleep any better on Clonopin, trazodone, or Seroquel than on no sleeping pill. In fact he slept better last night without it–6:30pm-1am (pee in bucket…OK, and on floor-), then slept till 6am.

He’s gibbering more than usual this morning–presumably due to lack of zoloft and olanzapine.

I hope I can talk to the hospice dr. Maybe via the nurse, who’s coming tomorrow afternoon. I think I need to switch to him/her prescribing for the hubster in order to get them fully paid for by Medicare. It’s a hospice thing. Also when the free depends & chux will be delivered. No rush–I have plenty on hand, but I need to know if I should cancel my AMZN Subscribe & Save Depends (I have till 6/14 to cancel the 6/23 delivery).

Aide Shaina and I were unable to get the hubster into the car yesterday–or even down the steps into the garage–so I could handle only the handicap placard, not getting his new ID. I had to wait three for a “ruling” from DMV central, but if his dr will fax a statement saying he isn’t able to go into the DMV in person, they will let me provide a picture and create his new ID (no need for a driver;'s license for obvious reasons!). We did get his wheelchair into the car yesterday, so I don;t have it inside. It was very difficult to get him form the den to the bed without it last night and vice versa this morning. Maybe hospice will provide a second wheelchair so I can leave one in the car? BUt really, I rarely need to take him anywhere. If he switches to the hospice dr, not even to the doctor. Jusw to the dentist and maybe eye doc. I wish there were visiting hygienists to clean teeth!

Was going to go to Costco today, but without an aide now, will plan on tomorrow. If DH won’t cooperate, we won’t get his glasses adjusted (he bent them a little so no longer snug on his face but I can order my new lenses and buy a few things.

I think I figured out why he sleeps every morning for aides but not usually for me. I didn’t shower him this monring. Shaina showers him every time she comes (and this month it’s 4x/week as Rhonda can’t come at all this month due to obligations to my brother & his business–much easier work than the hubster, so I can’t blame her–and Krystal only comes once a week now instead of twice).

I requested a hospice volunteer to stay with the hubster late tuesday afternoons–at least every other–so I can shop the farmer’s market (the best local fish store and a great local BBQ caterer have booths I like to patronize, not to mention local produce).


huh…without his meds this morning, he’s less stooped, his eyes open wider and looking me in the eye a lot (instead of rarely), and smiling more. He even winked at me, which was always an affectionate sign. (So much for zoloft making you happier-)

He’s still sloppy peeing (tends to get some on his shorts).

I tried prescription strength naproxen instead of ibuprofen or aspirin for my muscle aches (from hefting the hubster, helping him walk, cleaning up messes…). Works really well (just tried one last night so far).


While I grated carrots for hummus wraps for lunch, he stood a few feet away and peed right on his own feet, and the floor, and the front of his shorts. He’s forgetting how to hold himself to pee. At best he uses one hand these days.

Earlier when he peed into the den wastebasket, he held the basket, but not himself, so I had to press the basket hard against him. A little pee still got on the floor. Perhaps I should duct-tape his Depends onto him =8-0

Other than these moments, we’re having a good day just us two here in the house.

In preparation for getting myself a Real ID at the DMV when my license expires soon, I assembled my birth certificate, SS card, expired passport (presumably useless), and I always have my license in my wallet. I’ll need 2 letters. Probably harder than for most people–our utes are in DH’s name. I tried to change them a few years ago, but they didn’t want to as it would mess with their filing system. I don;t subscribe to anything physical (just things like the online NYTimes). Nobody sends me letters except for Christmas, and those are gone now. I hope someobody sends me a birthday card–normally I get online greetings!

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huh…without his meds this morning, he’s less stooped, his eyes open wider and looking me in the eye a lot (instead of rarely), and smiling more. He even winked at me, which was always an affectionate sign. (So much for zoloft making you happier-)

Gratitude for this! So glad for both of you. Especially when overall, the picture you paint is one of noticeably diminishing capacities.



heh. well, he spat out all meds last night.

Then he slept a few hours, got up to pee around midnight…and didn;t go back to sleepo till 4am (me neither-). Then he slept till 4:430, and up for the day =8-0

Aide can’t come today either. I think for the first time, I might’ve gone to bed with an aide here.

Anyhow, I have trouble locking one end of the hospital bed railing on the side he gets in & out of, so I had to leave one end down. So he got up. And peed on the floor once.

After breakfast (around 5:15am), I took him to the bathroom to pee and discovered a soaking Depends. While I went into the kitchen to dispose of it, he peed on my exercise wedge in the den.

He took all his morning pills, and is finally dozing off (I think). Unfortunately in the desk chair, not his recliner. But think I’ll grab a shower once he seems more deeply asleep. Anyway, it’s been nice having him stand and walk better.

This afternoon is the first visit by his regularly scheduled nurse. I need to inform her that hubby’s neurologist thinks it’s fine to switch from him to the hospice dr, that knowledge of PPA isn’t very important at this point, just ability to find drugs that make him more manageable for me (and aides). Also that will make getting meds for free easier if their doc is the prescriber. They probably have a deal with one of those mediator companies. (I can tell I’m tired–I fixed 9 typos in this paragraph alone-). Maybe they can give me pills in liquid or form ti stir into drinks. Our usual pharmacy compounds to order, but insurance doesn;t pay and it’s expensive.

Hope you can get a nap in today (((hugs)))

thx–dozed off briefly after snack.