Good Morning poppets! My apologies for falling off the face of the planet but I needed a moment.
So, updated update:
My father-in-law is on Day 43 of Hospice. He declined suddenly about a week ago and while we should have been prepared for that, we were not.
It started as him having grand hallucinations, seeing dead people and places we can’t see. But he's been really happy and relaxed so that was the overall goal. His episodes of consciousness are fewer and further between. He did not recognize his "girlfriend" the social worker earlier this week. He did not rouse for his advocate whom he adores or the Hospice nurse yesterday.
There has been So Much Discussion about the hallucinations, after becoming frustrated I said "We need to choose a lane: do we want him hallucinating and happy or lucid and miserable?" And also, we don't need to wonder what caused them. At this point, it just doesn't matter and he's happy and relaxed, which was the goal. He's "seen" his wife and his siblings, he's happy. He's said he's ready to go.
In what seems counterintuitive, he’s fallen twice since last Thursday, three times in a week total. They’re putting precautions in now to prevent that. But originally they said they couldn't so Hospice took this as a teachable moment and they're putting them into place now. We added "If we have to move him to a different facility, then we might need to." which is usually a motivator for change. Sadly. It is thought that it’s the hallucinations causing him to fall as he’s too weak to sit up or stand on his own. But the hallucinations are keeping him happy and pain free so it’s a sad trade-off. Also, it won't be long when this won't be an issue.
Meanwhile, we don’t know what damage is happening with each fall as he can’t report if anything is wrong. It's jarring because a persons default reaction is to "Run blood tests! get an xray! Take him to the ER" but we're past that point now. Anything that happens now, just...happens.
Hospice is working with the facility to medicate him more consistently so he doesn't get agitated or upset. He was spilling milk and the aide told him to stop then tried to help and he kicked at her. Yeah. So they have been Encouraged with a capital E to be consistent with his meds. However, I don't think it's negligence, I think they genuinely love him and are struggling with the process. The decline was so swift, it caught the staff off guard as well.
Also, though, when this is all said and done, we're going to request that staff gain training on the Hospice process as they seem surprised at things they shouldn't be. (taking him off his regular meds, hallucinations, questioning the sudden decline while on Hospice)
Oh, let's talk about that for a minute too. He was put on methadone, which is a regular thing when a person enters hospice. It is like a weighted blanket in pill form, it soothes the body and the brain and takes it out of the Fight or Flight Mode. It addresses not only physical pain but existential pain. Once his body acclimated to that dose - and it took a few adjustments - his body relaxed, his brain calmed and he's exactly where we want him to be: cozy in bed, sleeping, not in pain and not scared or sad.
So, if you're in this situation ever, don't freak out if they want to put your loved one on Methadone. It's a good tool to use. Remember the goal is always that the person is calm, not scared, and comfortable.
With all those developments, he's eating very occasionally not only because it seems he’s lost that ability, as in he thinks he’s already eaten or simply lost the motor skills to eat, it's a sign of the body preparing itself for the next step. He’s drinking very little, probably for the same reasons. He told the siblings he ate almost everything off a clearly visible fully loaded dinner plate almost two weeks ago, an example of hallucinations that can occur. He's declined his favorite things like ice cream and pizza.
The hospice nurse reported that he's markedly declined each visit that she's seen him and he's in the middle stages of death now. With all of these things happening, it’s a relay race to death…will it be a blood pressure drop? Will it be starvation? Will it be a brain or internal bleed from a fall? Or will it be a wild card event that None of Us Will See Coming. Charts and graphs and stats indicate it’s within two weeks. But the body is a weird thing, it could be tomorrow or March.
I did accidentally make one of the nurses cry. When they reporting about being agitated and that he'd kicked at an aide. I explained that this was very uncharacteristic for him and it's hard to witness. I gave an example of "He was such a good dad. I was on bedrest for sixty days with a broken leg and he came over every single day to check on me and bring me things. That's the kind of dad he was."
Because unfortunately, skilled nursing staff only see our loved ones as these broken, aging out individuals. They don't know the person they were before. It's important to share details, have photographs, and talk about how they used to be. Not only to humanize your loved one as a patient but to give things to talk about or mention between the staff and your loved one.
Meanwhile, I've gotten out the checklist of things to do once this finishes. I'm almost done with his obituary. I'm trying to gather photos but I'm finding that to be Too Big of a task right now.
So, that's where we are. This is the last parent for me, I will be an orphan after this concludes. And that feels unmooring. I hate this timeline.
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