This post had every intention of being posted in the month of October. Between school and family however, it was way delayed. Alas here it is. . .I will be posting far more frequently moving forward hopefully.
On Tuesday October 7, 2014 my dad was given less than six months to live. We had gathered as a family at the nursing home that day with my dad’s doctors and nurses to discuss this new stage as a result of dementia. Dementia had taken complete control of my father. Although there is still a tremendous amount to learn regarding dementia, including most especially its causes, what the medical community has been able to do very well is to identify certain benchmarks in dementia patients- from early stage indicators with memory cognition tests/MRIs to the point of needing constant care and supervision to what was now the final stage for my dad. That was the purpose of this meeting.
The doctor explained that this late stage is evidenced by significant weight reduction, non-stop talking with running speech fragments, as well as choking on food during meals. Dementia had overpowered his brain which essentially through a slow dehydration process will result in his death. It is important to understand that dehydration for a dementia patient is not like dehydration for a normal person. A normal person’s brain will purposefully fight dehydration by signaling the brain that it is thirsty; the same way one develops thirst after being out in the hot sun or participating in some physical activity. This was not the case will my father. There were no more signals in this sense, his body due to what was happening in his brain was shutting down. The doctor having seen many people like my father thought that my dad would have less than six months.
It became clear to us as a family that we wished to begin the process of making him comfortable and alleviate as much discomfort and suffering as possible. Therefore, we began shifting to hospice care. Hospice care we discovered that day (or at least I did) did not necessarily require my father to move anywhere, but rather we would be treating my father through the lens of minimizing his suffering and pain. I had thought falsely that hospice care meant moving to a separate location with other hospice patients, etc. That was not the case. All hospice care entails really is an acceptance of the dying process with profound dignity toward the patient in mind.
This by the way met perfectly with my father’s wishes, namely, he did not want any extraordinary steps to be taken in order to keep him alive. He was at peace with his life and himself. He always was most concerned not for himself but for others- that was my dad. In fact, before my father went to the nursing home and while he was in the hospital back in early May 2014 he had a rare moment of mental clarity when he told me- “Take care of Mom. . . I don’t want to be a burden to her.” My father in saying that had fought and won against dementia if just for a moment.
On Sunday October 26, 2014 my mom called me and said she thought I should come and meet her at the nursing home. My mom, who visited my dad every day received a call that Sunday morning from the nursing staff saying that they thought she should come as soon as possible. My dad’s time was near. Roughly three weeks from our initial meeting on October 7. At the time, my family was down at my in-laws house on Canandaigua Lake and I of course hopped in my car and headed up. When I got there my sister was there and my dad was in his bed- eyes shut, furled brow and labored breathing. I remember immediately thinking and saying to myself when entering the room and looking at him “so this is it, I am going watch my father die.” I was very nervous and anxious about the whole thing. It sounds obvious and stupid to say but there is such a finality about death. I mean I knew of course my dad was dying, that he was going to die but reality really sunk in at that moment. It’s like ‘Wow, this is happening’. That realization was overwhelming. I was not prepared for that. I was not prepared to be overwhelmed. But if there is one thing I learned in the death of my father it is that one is never fully prepared to have a loved one die, no matter what the circumstance. I knew this time would come, even before my dad was officially diagnosed- it didn’t matter. It was still so much more difficult than I ever could imagine.
My one younger brother from Chicago would fly in later that day and join us at the nursing home. I can remember getting on the phone with my older brother who was down in Orlando at the time with his family. They were due to come back to Rochester the next day- Monday. I remember speaking to him on the phone about how he was trying to get on an earlier flight to hopefully come home sooner but there was no such luck. He was concerned of course and rightfully so that my dad would pass before he got back home to Rochester. It was an emotional phone call. Fortunately, my dad decided the next world could wait, at least until my brother came back on Monday. That was a tremendous relief for us all.
As my immediate family was gathering and coping, there existed too, a need to make sure my day to day life was going to be in order as well. As the saying goes “life goes on.” Kind of bizarre really, but it is as if two trains are paralleling each other and you are on both- the one train is being in the room with my dying father and the other train is the other aspects of my life outside that room. I therefore for had to make arrangements for a substitute teacher for the next number of days (school administrators knew about my father’s condition and were wonderful in so many countless ways) and make sure lesson plans were taken care of for the immediate future.
By Sunday evening my wife had come up to join me, leaving our two children with my in-laws. Everyone had arrived besides my older brother. He would arrive the next day later morning/early afternoon. Sitting by my father we all took turns sitting next to him, holding his hand and then just talked- about anything and everything. A few of my family’s closest friends came up as well and with each new face came new tears. That said it was also rather beautiful.
In 2008 Drew Gilpin Faust published a book on death and the American Civil War entitled “This Republic of Suffering: Death and the American Civil War”. The book was groundbreaking for a number of reasons not the least of which it examined in great detail how Americans coped with the unimaginable amounts of death and destruction brought about by the war. Faust laid out very effectively how for mid-19th century Americans dying properly, or having a proper death was very important. To have a proper death was a big deal. Such a death involved being surrounded by loved ones, in one’s home if possible, etc. The Civil War did not make this possible for over 600,000 Americans. Such a fact weighed profoundly on family, relatives and friends that were left behind. After going through what I went through with my father I see now the importance of what Faust was writing about in her book- of being around and present for a loved one when they die, of saying good-bye, of just being there by their side. Looking back I could not imagine not being present while my dad passed away. I know I didn’t have that sentiment leading up to that Sunday morning phone call. I assumed in my own mind that my father would die peacefully in his sleep and we would get a phone call saying just that. Instead my dad had one final lesson for all of us. And I am glad he did.
My mom and sister had spent that Sunday night with my dad. My wife and I spent the night at my mom’s in case we needed to return in the middle of the night. Additionally, on Sunday night a Catholic priest gave my father his last rites. That was very important to me because I knew how devout my father was to his faith. The nursing home had a Chaplain that came in and said a prayer, which was very poignant, but I wanted, and my family as well wanted to make sure if my father could receive this holy sacrament that it would be possible. Fortunately it was for him. All part of given my dad his proper death.
On Monday Oct. 27, 2014 my dad passed away just before 9pm. I can remember too, a few of us were in the hallway of the nursing home discussing whether we wanted to pop out to get a bite to eat. The nurse approached us and said don’t go anywhere. And with that we all didn’t. Shortly thereafter dementia no longer controlled my dad. He passed away with all of us there- together by his side as a family. The only way my dad would have wanted it.