Thursday came and we told the attending physician about our decision to begin comfort care at the hospital. As the doctor spoke with us, the nurses began removing my father’s off his IVs. I found this to be extremely disrespectful. This was a major decisions, and we didn’t have the change to be with my father as he transitioned from treatment to comfort care.
It was also at this time that the physician told us that my father’s time at the hospital was limited as he was technically “stable”. Stable meaning, anything the hospital was providing, we could be providing at home. This was new to us, so we were faced with immediately having to prepare for home hospice.
As if the last few days weren’t a whirlwind already, things seemed to move in hyper-speed. My heart and mind were struggling to catch up, and my logic was trying to make sure my father was receiving appropriate care.
We continued to care for my father that day by being with him, talking with him, holding his hand, and providing people with one on one time with him. He continued to recognize people, make requests, and answer questions. His personality would appear in flashes, like when he stubbornly replied “Como que no” (similar to “Like hell it won’t”) when he was told his hospital ID bracelet couldn’t tear, as he tried to take it off. “I want to go to Juarez” or “I want some coffee” were gifts to us. His “awake” times were brief, yet felt very rich.
That night most of us could not sleep. I found myself tossing and turning, and waking frequently throughout the night. “Did we make the right decision?”
For myself, I wrestled with so many questions and doubt in our decision to end treatment. He was slowly getting better, but his inability to swallow meant invasive treatments that we all knew my father wouldn’t want. I just couldn’t accept that there was no other way. I was willing to let my father go if that was where he was headed, but I I also didn’t want to cause my father any unnecessary harm, and most importantly, I wanted to do right by my father.
It was early Friday morning when one of my sister’s sent us a text from the hospital, “Dad ate some food this morning…”
What the hell??? I stood in my father’s living room with my two other sisters as we scrambled to try and understand what was happening. we all reached out to physicians we knew to get some perspective.
When we arrived at the hospital we met with my father’s health care team to go over my father’s condition and options. The staff was noticeably frustrated with us, but we held firm with having our doubts and concerns addressed.
By the end of our conversation, it was clear that there was not much more that could be done with the health care team in the room. They we not going to understand us, and why it was so incredibly hard to make this decision. It was beyond the “difficult decision” regarding a parent. We just found out 11 days ago that my father had dementia, and now we are faced with end of life. Excuse me, but, it is a lot to take in, and leaves a lot of room for doubt, and denial.
From this point on, we slowly came to terms that my father was dying. Home hospice was arranged, and my nieces and nephews prepared my father’s home for his arrival. He could come home on Sunday, so we had two more hospital nights left before my father could go home. My father was expressing a desire to go home, and his rapid decline left me worried that he wouldn’t make it to Sunday.