Cunningham-Ramos AML & Stroke after TBI Journey

After some back and forth of Hospice considering whether or not to discharge Kim, Medicare has approved for Kim to continue to be under Hospice care. As mentioned in prior posts, Medicare pays Hospice very well to keep Kim under their care. I have considered pulling him out of hospice and engaging his doctors on a limited basis. However, since medical intervention does not make sense and he’s doing well without it, I continue to keep him under hospice care.

Kim has gone beyond all expectations and I’m told it is because of the great care he gets at home. However, since my last post, he has declined significantly and is now unable to get out of bed as he used to. In particular, the last 2 weeks he’s declined to a point that I’m unable to easily change him or care for all his needs without a significant effort on both his and my part. This is when aids are not around which is typically in the afternoons, evenings, and most weekends.

I’ve changed the caregivers’ schedules and added more hours but I end up spending a lot of time training new people, being called by them, and monitoring Kim when he is with health aids.

Needless to say I am exhausted and concerned about not staying healthy. Given all of this, and the fact that he’s stable and could really live a long time, I have decided to look for better options for both of us.