Last week my brother was taken to the ER with severe speech aphasia, mental confusion, and an inability to walk. His brain tumors were back big time and there was nothing more the doctors could do. So they put him on dexamethazone to relieve the brain swelling and sent him to hospice. We were told to expect 1-2 weeks. However.... the dex has relieved his symptoms considerably. He is awake and alert and keeps wanting to get out of bed alone (his walking is still very unstable so that is a fall hazard). He can talk again and walk (with assistance). He is eating well, and is happy to receive visitors in his hospice room. Amazing!! He is an incredible fighter!!
He is now considered too healthy for hospice and they want to move him out, which puts the family in a bind. He wants to go home, of course, but he still needs continuous nursing care and our family can't afford a 24/7 private duty nurse. We are now trying to find a local nursing home, but so far there are no open beds. And while the dex has relieved his symptoms, he is not getting any cancer treatments so this reprieve is temporary. How long will it be before he has to go back to hospice? A few weeks? A few months? Nobody knows.
Two weeks ago my brother and our whole family were excited and optimistic because he finally started ipi treatments. Maybe--just maybe-- ipi would work for him. Last week we were in despair because he collapsed and his prognosis was dire. Now we're happy that he is so much better, but also feeling guilty because he badly wants to go home but we can't afford the skilled nursing care he needs. On the other hand, hospice is not a good place for him medically because the complexity of his case is outside of their experience. They specialize in pain management and emotional support; they are not used to handling patients as active as my brother and don't know how to titrate his dexamethazone, for example. So this causes the family concern, too.
When all this started 6 months ago, I expected a long, slow decline that would eventually end in a quiet and hopefully peaceful passing. I never expected all of these physical and emotional ups and downs. I never anticipated that my brother would not ask anyone for help (like asking his friends for a ride when he couldn't drive) or that he would refuse any outside help that was offered (like at-home hospice offering him a home health aide). That left the ball squarely in my court, which I didn't expect. I didn't appreciate the constant emotional tightrope we have to walk between maintaining a positive mental attitude to encourage his recovery while simultaneously being realistic about his prognosis. Every time he suffers another medical crisis, I have to ask myself, "Do I take another medical leave from work so I can be there "at the end", or do I hang tough and see if he bounces back once again?" That is an awful dilemma to have to face time and again.
I suspect that everybody who is dealing with any type of terminal cancer, especially melanoma, goes through these same things. I just wish I had been better prepared for the mental, emotional, and financial upheavals we're going through. Unfortunately, most of the people on the MPIP forum don't want to hear any bad news. They want upbeat, optimistic reports, for which I don't blame them. They also are not all that interested in the caregivers' perspective-- if you aren't walking the walk don't talk the talk. And I understand that, too. And I know that no matter how confused and exhausted I feel, my brother has it much worse. But, oh, what a difficult road this is to travel for those of us who love and care for the patients!!