Hospice is “designed to give supportive care to people in the final phase of a terminal illness and focus on comfort and quality of life, rather than cure.” Actual rules require that several doctors agree that the patient is in the final six months of life before they can enter hospice care. That is a very subjective agreement for doctors to reach although not in my case.
Six months is a long (and potentially) wonderful time.
This first week of transition has felt quite zoo-like or a bad, too long Saturday Night Live skit – not the oasis of calm I was seeking.
Why? I came home with an NG Tube connecting my stomach with external equipment that pumps anything that enters my stomach out. I can stop the pump to allow pills to enter the blood stream but the basic idea is that I need an exit plan for my stomach and my cancer has blocked that off. This requires that I am tethered much of the time to equipment. And the consequences of things not working are
- gross (stomach fluids on my lap) and b. it can make me feel yucky fast.
Of course, things went awry from day one and diagnosing the actual problem required an array of people, being paid by an array of sources – e.g. problem solving within health care bureaucracy. Yes, a very bad week. Since I couldn’t diagnose the problem, I defaulted to blaming everyone. In (almost) retrospect there are probably more praises to be sung.
Hospice problem solves. They may need pushing, they may need patient clarity, they may need time but they seem to persevere. Yesterday, they finally got OSHU, the discharging hospital, to release the equipment that only they could provide. Yesterday they brought in a man with 40 years experience with NG tubes to visit, explain the situation then get to work.
I am now informed, calm, and have a really new frame for understanding the revised role of the NG tube now that I am in hospice. And it includes eating and minimal reliance on the pump, a step towards normality. And my oasis of calm…?