For the last month I have been managing hospice care for a friend. Caring for a person dying from stage 4 cancer is a task that you have to go through yourself in order to understand just how hard it is. Fortunately we had a mutual friend that provided financial help during my friends passing. While my friend died peacefully in his sleep on November 14, 2016 our benefactor died a horrible, senseless, and violent death at the hands of a mob six days earlier. For me both deaths will be forever intertwined in my mind.
This is an Open Thread / Coffee Hour and all topics of conversation are welcome. What is for dinner? How have you been? If you are new to Street Prophets please introduce yourself beyond the fold in a comment. This is an Open Thread / Coffee Hour and all topics of conversation are welcome. Jump the fold for a description of my experience helping a dying friend.
John Wilson Mowell the third was my friend’s name and his nickname was “Jay.” I learned of his illness about 8 months ago when I had to move out of my home due to a large rent increase. I asked him if I could crash on his couch while I found a new place. Without hesitation my friend invited me to stay with him. I was only expecting to stay at his house for a few weeks. But, one thing led to another and I ended up being his care giver through hospice to the end.
What I did not know was that he just finished up his first round of chemotherapy and it had been a disaster for him. Jay qualified for assistance through Medicare and Medi-Cal. And it was these government agencies that paid for his excellent care at a Cancer Care Center in Berkeley. When I arrived he was just starting immunotherapy and he was hopeful.
My days became filled with: giving pills exactly on time; preparing breakfast, lunch, and dinners; driving to doctor’s appointments and infusion sessions. And, toward the end it was managing pain medication and keeping him clean. What little free time I had between bed checks on my friend I visited Daily Kos and watched science fiction movies on YouTube. To pass the time Jay and I would talk about the events and the surprises of the 2016 general election campaign.
To be honest I think both Jay and I were both in denial about his potential death from cancer. The only consistent positive influence we had was the support we received from the professional medical staff supporting us. Starting with our cancer doctor, and continuing with the nursing staff, followed by the social workers. Even the incidental professionals were terrific such as the radiation therapy staff, emergency room staff, and the PET scan staff.
A few months ago Jay was unable to find the strength to visit the cancer care center and became home bound. This was due to weakness and the pain of movement. The scans showed multiple cancer spots in the back, bones, and soft tissue. The pain was becoming terrible for him and just rolling over to change the bedding and other soiled items was becoming difficult for me. Toward the end I would have to pre-medicate with morphine in order to move him for cleaning.
What kept Jay continuing to fight to live was his love of working the front table at the Great Bay Area Crystal Fair, his love of discussing all things political, and his fascination with alternative theories promoted by George Noory on Coast to Coast AM. To this end I spent hours in conversation with him debunking many of the non-mainstream ideas presented on Coast to Coast.
Jay was devastated by the language and bad actions of the Republicans during the election and I spent time each day relaying summaries of articles from Daily Kos describing events to him. All he could do is shake his head in disgust. We both were convinced all of Trumps bad behavior would result in him not being elected. I think we were both in denial of even the possibility Trump being just as we were both in denial about his death.
Toward the end morphine was our best friend. A few days before his passing with his last ounce of strength he demanded of me that I help him get out bed and “go home” or “get out of here.” I was not sure how to proceed. The hospice team had given me a “kit” and I had a number of drugs that I could have administered that would curb “violent” or “agitated” behavior. I elected to delay him for a while but he persisted. I finally gave into his demand and with my help he was only able to lift 5 inches off the bed. It was with last desperate action that caused more pain on his face than I had ever seen that caused him to finally realize he was dying. I gave him another dose of morphine and he rested for a few hours.
Later, I heard the whistle call me into his bedroom. I had given him a whistle a few months earlier to call me because he lost the ability to yell and talking was becoming difficult. This visit was somehow more somber. I held his hand and he asked me if he was dying. I looked him in the eye and said yes you are dying and I love you. Finally, he gave me the key to his strong box and some instructions to take care of his 70+ year old roommate. This was his last conscious act.
It was the denial that stopped him from pre-planning and getting all the paperwork in order for his orderly passing. He only signed his medical power of attorney over to me after a bad week of problems with internal bleeding and a bout of hypoglycemia landed him in the emergency room. In the hospital they had him hooked up everywhere and stuck tubes into to both ends and his medical port. After that experience he told me he did not want to be a vegetable on life support. And, signed the forms. To be clear about forms I want to say the medical support staff was very direct throughout the process to push him to “get his affairs in order.”
I suspect his hearing on the radio the election results could have been the final nail in his coffin. Because after hearing the results he did not turn on the radio or ask about politics. Our interaction became very direct after the election. Do you need water? Are you comfortable? Are you in pain? Are you hungry? Are you clean? He could only nod or whisper yes or no.
I had been monitoring his calorie intake and reporting it daily to my support team. But I did not connect the dots. During the last four weeks he had tapered off eating. It was only the last week he refused all food and only took water. I guess I will never know if it was the lack of food that killed him or the cancer. Either way thanks to the morphine we kept the pain level down to a reasonable level. And, he passed in his sleep 6 days after the election.
We were totally dependent on the government for his care and comfort. And with the Republican and Alt-Right takeover of the United States government I am fearful that such care will not be available for those who are reading this. That is why I stated above that my friend and benefactor died at the same time.
What is missing from from the Republican ideology is compassion, human love, and dedication to diversity of life. I can not imagine how hard dying will be under Republican rule. All I know is it will be far worse for everyone.
It is a small thing but you do not know the relief I felt when the county public health nurse shipped me a large box of adult briefs and disposable pads a few months ago. At every turn without question the government provided everything we needed. The experience for me was the summation of a thousand small acts of kindness and offers of hope provided by our government. And now the Republicans are going to kill the program.
In closing when the supervising nurse came over to certify the death and help us with the cremation arrangements I requested we perform a simple nondenominational prayer. We held hands, the nurse, Jay’s roommate, and my self. I lead the prayer by giving thanks to the support Medicare and Medi-Cal gave us and thanks for all the personal support we received from all the professional staff.
Regards,
Jonathan (linkage)