January 23rd -30th
I got an early morning call. My Dad, who had been bouncing back and forth from Extended Care and the Hospital for the past few months was back in the hospital and not expected to last much longer.
I booked a flight right away and was at the Hospital in St. Louis that evening.
My Mother and Sister were in the room with Dad. He was propped somewhat upright in the hospital bed. Dad was receiving intravenous antibiotics. He was moaning in his throat, almost growling. Dad did not respond to questions. Despite his moaning, he did not appear to be in pain. Perhaps he was mourning his impending end. Dad looked pretty bad off. He did not respond to questions. I was glad that I came. I thought that his end was near.
The next morning, the crisis seemed to have passed. Each time that Dad went back and forth from the hospital it took something out of him. Each time there seemed to be less of him. Dad can no longer walk or feed himself. A good day now is when Dad answers yes or no to simple questions.
Dad returned to the Extended Care facility. We informed Extended Care that Dad would no longer be taking his cancer drugs. They asked if his oncologist approved this change. We said that this was our decision. None-the-less, Extended Care called Dad’s oncologist. Fortunately, Mom had already discussed this possibility with Dad’s doctor, so he supported our decision. Extended Care should not have tried to end-run our decision.
My Mother, Sister and I had talked about what measures to take as Dad’s health declined. We talked about DNR, no ventilators, no feeding tubes, etc. We had not envisioned the series of events that left Dad such a pale shadow of who he was. We told Extended Care that Dad should not return to the Hospital.
Dad believed that this life was all and enough. This made his experience of life, the quality of his relationships, of supreme importance. I use the word “believed” because conversation with Dad is no longer possible. I am not sure what he is experiencing now.
I stayed for a week and Dad had some good days and some bad days. Every day I went back and forth visiting Dad and spending time with my Mother and Sister. It is always interesting driving around the area where I grew up. A place so familiar – yet so changed. I tuned Mom’s car radio to the rock station that I listened to back in high school – KSHE 95 – now a classic rock station. Iron Man, by Black Sabbath, was playing. It’s funny how you can see your current thoughts reflected in the things that you encounter…
I am Iron Man!
Has he lost his mind?
Can he see or is he blind?
Can he walk at all?
Or if he moves will he fall?
Is he alive or dead?
Has he thoughts within his head?
We’ll just pass him then
Why should we even care?
Nobody wants him
He just stares at the world…
I returned to my life in North Carolina but I was on emotional hold. I was scheduled to return to St. Louis in about a week to simply be with Dad and be there for Mom and my Sister.
February 5th – 9th
My next trip to St. Louis found Dad in about the same shape at the Extended Care facility. I helped sometimes by feeding Dad – though sometimes he was not interested in food. Feeding Dad was difficult because it was hard to see him in such a helpless state. Yet it was profound. Caring for someone who had always cared for me. I was privileged to see the example of loving kindness displayed by my Mom in her interactions with Dad.
Dad’s brother came for a visit while I was in St. Louis. Although only two years younger than Dad, my Uncle was in good physical and mental shape. He drove to St. Louis from Indianapolis. It was good to catch up with him. I remember visiting my Grandfather Best with my Uncle at a Nursing Home in Indianapolis shortly before he died. Grandfather was unresponsive, confined to bed and being fed through a tube in his nose. My Uncle spoke to my Grandfather as if he could understand what was happening around him. I was impressed by my Uncle’s concern and loving dedication.
Before I left St. Louis, we met with a Social worker at Extended Care and got Dad enrolled in Hospice Care. This did not require that he move to a different facility, but he would begin receiving a different type of care. The focus would be on making him comfortable rather than any sort of treatment.
I left St. Louis for North Carolina wondering how much longer Dad could last. At this point it would be a relief when he died. Dad was no longer a participant in his life.
February 14th
Duke University was closed due to the severe weather so I am at home snowbound.
Mom called at around 11:00 AM to tell me that Dad died earlier this morning. She got a call from Extended Care that he was fading fast. She drove over and was able to hold his hand when he died.
I will be traveling back to St. Louis along with my family on Thursday. Dad’s Memorial service will be on Saturday at the Ethical Society of St. Louis. Other family members will be coming in from New York, Santa Fe, Indianapolis, Chicago, Lincoln, and elsewhere. I have much to process and I suspect that it will take some time.
Death is an unavoidable part of life. When it comes at the end of a long life, it is not a tragedy, but it still saddens me as I remember my Dad.
Stephen Randall Best October 3, 1926 – February 14, 2014
Joy McConnell says
Randy, I have been thinking of your father and your family. I can picture all of you in my mind’s eye and in my heart. I am glad that you got to spend so much time with him at the end. These transition times are very important. I hope you were able to have some important conversation with your dad in these last months and years. I have loved and respected your parents for a long time and enjoyed working with your mother when I was on staff. Your dad and I sometimes disagreed but I always respected him very much. I am sending love to all of you and hoping for a beautiful memorial service.
Last weekend I officiated at the memorial service for Fred Simms, Jackie Simms’ husband, whom we called good friends for more than 35 years. So that process is immediate and close as I think of your father and all that he contributed to life — reason, energy, intelligent problem solving, social betterment. I remember his dreams of co-housing to solve some social problems. I will be thinking of you all with love and care Saturday as I fly to Portland for my seminar..
Dilip Barman says
Randy, please accept my condolences. Thank you so much for so openly sharing your thoughts on this very personal transition. The positives I see are your family’s attitudes about death, and your own preparedness, as much as anybody can have, for this eventuality near the end. We’re with you. Love, Dilip
Laurie Jacobvitz says
I had a very similar experience with my Mom who died October of 2012. We too made the decisions to not do procedures to prolong her life since she could no longer talk for herself and was clearly in a lot of pain and was not going to improve. At some point we decided no more hospitals.
She was at Extended Care (I am not sure if it is the same place) and I was not pleased with the care she got there. It was hard for the nurses to keep track of what was happening with her because there were so many of them.
Going back and forth between St. Louis and California and deciding when and whether to go was very painful.
The finality of death is emotionally very difficult. Grief is a process.
I agree with Vicki that hospice is an important piece. Palliative care is so important.
My love goes out to you and your family.
Julia Jewett says
Randy, Will and I are holding you in mind and heart
Vicki Guilfoil says
Randy, this is very much like what it was like with my Mom; the only difference was we only had her for 4-1/2 months after her diagnosis, and she was at home. The one thing I wonder, however, is why Hospice care is put off to the end? Another discussion for another time. But I am glad you had the time to spend with your dad, who, at some level, knew you were there even when unable to respond. Death may be unavoidable, but it always comes too soon. I would have given anything to have had even a few more weeks with my mom; I know you feel the same about your dad albeit a dad who was lucid and free from pain.
Thank you for sharing via your blog. My condolences and hugs to you in this difficult period, my friend.
Jack van Dijk says
Randy, my condolences, my thoughts are with you.