An update on our family’s situation and my dad’s condition.
I last posted about my dad’s condition on January 23rd…at that time, he had been on the palliative care unit about a week and his condition had slightly improved by the mere fact that his kidneys did not appear to be in as immediate danger of failure as they were when the decision was made to move him from oncology to palliative care on on the 15th. At that time, we had been told he only had “days.” However, once he was moved to palliative care – and it looked like his condition was stabilizing, there was discussion among the care time for him to go home on hospice. This was not what he wanted and not what our family felt was in his best interest.
As his condition varied from day to day, the final word on discharge became “reevaluating on a daily basis” and it has not been addressed recently. As luck (?) would have it, the unit actually has cleared out significantly and there isn’t the need for beds that there was at the time so it hasn’t been brought up again.
In the two and half weeks since I last posted, there has been paradoxically enormous and yet little change. Physically, he is very weak. Although he was at times sitting up in a chair to eat and taking short trips to the shower, as of about a week ago, he hasn’t gotten out of bed. Some days he eats small amounts of food and some days he hardly eats anything. His pain is thankfully still under control with oxycodone, rather than morphine or stronger drugs, and his sleep is slightly better since they have worked out the right combination of prescriptions. There have been a couple of frightening days where he ran a high fever which caused significant concern, but each time, it was reduced with the help of medication – including one very trippy night on a steroid high!
Cognitively, some days he has long conversations about things which interest him – motorcycles, trucks, campers – and others he simply sleeps. There are periods of confusion where he cannot find the right words and gets frustrated and other times when he is unaware that the things he is saying are unclear to others.
The care he is receiving continues to be excellent, with a wonderful team of nurses that my parents have gotten to know quite well. The situation with the doctors is rather confusing – they are on a rotation with the fellows and attendings changing monthly and yet other doctors on the weekends so it seems we spend a few days explaining his history and condition each time they change physicians. The prognosis is always the same….no one knows how long or what to expect.
My mother is by his side…always. At the end of last week, they had to move to yet another room on the same unit due to construction that was happening on the wing where his room was located. It is more conveniently located close to the nurses station, but he doesn’t have his view from a wall of windows – there is only a small window facing other buildings and my mom does not have the extra bed the larger room had. Yet she stays, in a recliner by his bedside, exemplifying love, patience, strength, commitment and is the embodiment of the vow “in sickness and in health.”
Emotionally, we know he is ready to go and although we want him to be free of this disease that binds him, we still cannot being to fathom life without him. We don’t know what each day will bring. We just continue to pray, continue to talk, continue to love, and continue to, as Curtis Mayfield sings “keep on keeping on…”
-Karri Temple Brackett
February 9, 2020