Two weeks ago today we made the very difficult decision to admit my father to hospice. While he had been declining slowly and we were watching and waiting, his health took a sudden turn for the worse the two weeks preceding our decision. Physically, he was having a harder time walking and at times would be totally immobile. My brother found him laying in the middle of the living room floor one morning, with no real idea of how he got there. Cognitively, his confusion was increasing and we realized that it was no longer safe for him to be alone.
I think we all hoped and believed we could keep Dad at home – his or ours. But one night at my home and I realized that we were not going to be able to provide the care that he needed. He was up multiple times during the night, which meant I was too. I was so worried that he would fall.. or wander off… or get hurt some other way… His confusion would be worse now that he wasn’t even in his own home. We didn’t have a solution for when we all went to work and we felt ill equipped to handle everything from mobility to hygiene to nighttime care. We couldn’t get him up the stairs and sleeping on the couch wasn’t a good long term option.
After consulting with my father’s primary doctor, his radiation oncologist, it was determined that hospice care was the best next step. I had an incorrect understanding of hospice, thinking it was inpatient care when it was not. Having someone come to the house periodically was not going to help us. I asked “what do we do the other 23 1/2 hours of the day?”
Hospice offered a 5-day respite program that we took advantage of while we formulated a longer term plan. I’m not sure Dad fully understood where he was or why he was there but it helped us to know he was safe. After four days in that program, Dad was transferred to a skilled nursing facility where he will likely live out the remainder of his days.
The experience has been completely heartbreaking. Watching cancer, and perhaps other disease, rob my father of his physical strength and his cognitive abilities has been so difficult. It it clear that the cancer is spreading in both his brain and his abdomen. He is now wheelchair bound and we wonder how much time he has left. One nurse mentioned “terminal agitation” which referred to the confusion and restlessness of those who are terminally ill; this is where we are at.
I am grateful that he still knows who we all are and he has moments of clarity, good mood, and nice conversation. I am grateful that he is in a facility that ensures he eats three meals a day, takes his medications correctly, and protects him from injury. He has more stimulation from activities and lots of people around, and we have found the staff to be friendly and caring. And I am grateful that my brothers and I have been on the same page on all of this.
It has been a series of difficult decisions, but we know that we have all made the best decision possible for Dad. We ask for your continued prayers and positive thoughts.