Thanks!
Apologies ahead of time but this one is gonna be kinda long...
Sigh, well as you prob remember we lost everything in the fire and then he was diagnosed with cancer and liver failure directly after (I don't remember if I told y'all the dx's or if I just told you he was sick). So it's kind of a country and western song. I've hated being stuck here at my parents and under normal circumstances we'd at least have found a place to rent but being forced back home and having his illness strike directly after did have one good side effect that my Mom keeps reminding me of whenever I talk about moving and that's that I have help here. With his health, he can be feeling great one day and on the next day be so sick that all he does is sleep but the worst is probably what I call the 'temporary alzhiemer's' that he can sometimes suffer from when his liver doesn't get rid of amonia levels fast enough or if his sodium and potassium levels get out of whack. We went through a very bad time last month where he was hallucinating, asking the same questions about his parents (who are gone), at times I was 2 people and at times he didn't know me and was just generally confused. The hardest part wasn't the physical stuff (that can be hard) but the mental stuff. That part just breaks me down. I mean it really is just like Alzhiemer's but it's of the type that until/unless it progresses to a point he will come back out of it with the right treatment so at least I have hope when it happens.
I'd asked hospice what could be done and they told me they couldn't do anything because they couldn't run the tests needed to determine such a complicated case. They told me they'd be there but unless I wanted to consider assisted living for him (which is a hard no from me) there was nothing they could do.
It got to the point where he was falling a lot (when amonia levels get high it not only effects the brain but it can also effect your ability to walk) and I knew that I couldn't do it alone. I was picking him up too much, sometimes having to struggle for 45mins or so to get him back up or on the bed and doing very stupid things like using my knee to keep him from falling all the way down and to go along with that his mind wasn't always there enough to help. He would awake and immediately want to go somewhere when I knew his platelet levels were too low for him to risk moving around much assuming he could get more than a step and he had already developed a hematoma on his spine. But I also knew that the hospital could get his levels down and that was the best chance we had. So I made the call to drop hospice so he could get treatment and I'm glad that I did. His doctor told us upon discharge that based on how he was when he came in that he thought he would be discharging to an assisted living or rehab facility but he improved immediately and has been doing well. He's a little fuzzy today but I'm fairly sure that's because he accidentally took two of one of his meds.
He is back in hospice now but our goal is to find out what if anything can be done for his liver. Is he even a viable candidate? When he first went in and was diagnosed they told me flat out they would not operate on his cancer. Several hospital visits later (including that initial one that lasted a month) and the hospitalist had his case reviewed recommended a tumor board (which is something they did to figure out how to operate him even though he is very high risk because his liver basically makes him a free bleeder). He's improved a lot since that first year but without a transplant his case is considered terminal. I wish we'd been able to find out all the answers back when he was on UT palliative care but the pandemic hit and closed a lot of doors and they advised us to move to hospice.
Now, it's trying to figure out how/what to do to get back in touch with his liver doc and find out some answers. He can see specialists while on hospice but the rules about what constitutes aggressive treatment can be weird. Once we do find out, he can wait on hospice for the transplant (assuming he qualifies). He's in his forties so I'm really hoping that we can make something happen.
. We appreciate your sacrifice
