Greetings all,
It has been a long-time since I've posted updates on my father who is now in at a hospice care facility in last days of his bladder cancer, I wanted to give an update on his cancer journey to share what I've learned, some concerns I have regarding his care, opinions and find some understanding.
My father has been at an in-patient 20-bed hospice care facility for an amazing 45 days, he was at a university hospital for 7 days, so 52 days immobile in bed. He was give 3 days to live when the bladder cancer infection started.
One of my concerns with hospice care is that on more than one occasion we've been asked to find another facility for my father because he wasn't "actively dying". His physical ability to fight the cancer at the end I guess is somewhat unusual and I got the impression they didn't know what to do with him because he wasn't moving along the curve fast enough. My concern to share for others is to understand the business of hospitals and hospice care and insurance. Earlier when we were at the university hospital once treatment options were ended we were "encouraged" to find a facility to care for him. My concern to share with other family caregivers that we failed to spend the time ahead of this final stage to research nearby care facilities or hospice choices BEFORE being faced with urgent need. It was emotionally stressful to find a place appropriate for his care and private rooms are rare to find.
I need to explain that his wound from the bladder cancer tumor located on his colon was severe. His wound care required professional and constant care, far too severe for any of family to care for him at home hospice, to take him home simply was not an option. I don't know if his progression of surface breaking infections, abscesses, is typical of bladder cancer or not. As well all his vital organs are in good condition and his young age of 64 has helped his ability to deal with the open wounds. A week ago another tumor site down the pelvis opened another wound.
I don't want to scare or shock, but we were not at all prepared to witness the extent to which the tumors as they fully progressed could literally rip apart the lower part of his body, yet leave the kidneys, lungs, heart, etc untouched. His cancer wound care is equivalent to that of severe burn victims - I can share more on that on another post as there was a last ditch option for surgery that was not pursued as the cure sounded much worse and would not have prolonged life much more than a month.
Another concern to share is when to stop antibiotics which help fight the cancer infections. Unknowingly we may have prolonged things by keeping the antibiotic IV going for 2 weeks, after the emotional goodbyes, my dad agreed with request of doctors at hospice to end the antibiotic treatment, but the infection appeared to slow or stop by that time, with the wound kept sterile nothing happened other than the continual slow growth of the tumors.
Despite our inability to care for our dad at home, he has never been alone from family. For 52 days so far we have been trading shifts with overnight stays at hospice and visits everyday from his brothers and sister and friends and relatives. I consider ourselves very fortunate to have found a rare in-patient hospice facility (only 2 in the state) with a private room and although sometimes exhausting we've been able to keep him in constant company to help with nursing staff and fulfill any request from dad as we can.
I guess I'm searching for a sense from others if we done things right or wrong some discussion or understanding that may be of value to others. There's an impression that his time in hospice given the severity of his wounds has been extraordinary. However, I don't want to give the impression that the vital organs aren't under severe stress which they are, it is more of a slow motion gradual process for the organs as his metabolism is overcome to deal with the open wounds.
Charles
