Dad was clear that he wanted to die at home. He wanted to spend the remaining weeks and days of his life in the home he had known for 50 years.
At the beginning of November 2010, we found out that dad had advanced metastatic prostate cancer. My sister Julie, who had always been there for dad, both in proximity to where he lived and as an unending supportive force for him for decades, made arrangements for her older son to move into dad's home in order to help him out.
Dad's family doctor was a lovely and helpful man who initiated diagnostic radiological testing, along with the much needed narcotic prescriptions for dad's initial bouts of excruciating and unbearable pain.
Every challenging disease contains within it, its own suffering, limitations, and heartbreak. Comparative suffering between diseases seems to be an odd and pointless mental exercise, yet I clearly recall the thoughts I had more than 3 decades ago while I was in nursing school. I was in our lecture hall at St. Mary's hospital where we were learning about disease processes, and one particular afternoon upon learning about ALS and PBP I thought to myself: "this has got to be the worst disease on the planet". Fifteen years later, my mom developed PBP.
During a profound clinical experience as a student nurse, I recall helping care for a patient with metastatic bone cancer, and I thought to myself: "this has got to be the most painful disease on the planet". Thirty years later, dad was experiencing this disease. These were clear memories, and I found both coincidences to be a bit eerie to say the least. It's not that I don't have other memories of disease experiences during my nursing studies. I do. I just don't recall any being as crystal clear and as gut-wrenching as those I studied, that would eventually and coincidentally become diseases that my parents would experience. Weird.
Because dad chose to wait so long before a diagnosis could be established, he did not initially have the benefit of the services of an entire oncology and palliative care team in place to assist him with his progression toward death and relief of suffering.
He did, however, have three children who were on the same page when it came to respecting dad's choices regarding healthcare management, treatment or lack thereof, maximal assistance through the dying process, and any relief of suffering that was possible via any type of therapy.
All three of dad's children were there for the last 2 1/2 weeks of his life, making sure that his descent into death was as comfortable as possible.
When I arrived at dad's home from the other side of the country in the third week of November, it was very apparent that there was no way dad would be able to die at home without the knowledge, medications and treatments from competent oncology and palliative care personnel. When I saw him, it was clear that dad needed more than Percocet and Hydrocodone for his pain management, he needed more than room air for his intermittent dyspnea, and he would eventually need aids like a wheelchair, commode, hospital bed and an emergency kit, if he were to die at home.
Two days after I arrived, dad had an appointment to see the oncologist. "Huh?!?!" Dad could barely walk to the bathroom, he had severe episodic bouts of dyspnea, indescribable fatigue, and excruciating pain, where lying semi-flat was the only position that provided him a temporary measure of relief.
"Dad has to go to the oncology clinic today?!? I don't think so. Dad's not going anywhere." I was determined that there was going to be another way dad could get his needs met. By phone, I spoke with the nurse in the oncology palliative department and told her of dad's situation. She said that she couldn't do much about it because dad hadn't seen anyone in their department and they couldn't help him without seeing him first. I told her that if we attempted to bring dad to the clinic, I hoped that she would be prepared in the event that dad would likely collapse and need a hospital bed to lay semi-flat on, resulting in an even more likely hospital admission.
She talked to the oncologist and told me that the doctor would make a house call later that day to meet dad and offer him assistance.
To this day, oncologist Dr. Sims of Cambridge, Ontario, and her drive out to see dad on that wintery day to make that all important compassionate house call, remains in my top 20 life experiences that stimulate profound gratitude in me.
My brother Peter and his friend Craig were sitting on the long couch, while Dr. Sims sat on the short couch. Dad was lying semi-flat on his bed that my brother and I had brought into the living room from his bedroom the day before, in preparation to have more space in order to care for dad more easily. I sat on the end of dad's bed. Dr. Sims then proceeded to inquire about dad's medical history from me, and dad's present symptoms from him. I made it clear to her that not only was dad's pain tolerance extremely high, but he was a man who was stoic beyond belief. He wasn't a person to complain about his symptoms, and when he would start to complain of pain, he had already reached beyond maximum threshold.
We told her that dad wanted to die at home. Dr. Sims knew what that meant. Clearly, she was not only a compassionate oncologist, but an experienced one, and knew what dying with metastatic bone cancer entailed in terms of palliative care.
"You're sure you want to do this?" Dr. Sims asked, looking directly at me. I knew the question was meant for all three of us: myself, Peter, who was sitting across from me, and Julie, who would have been there had she not been working her evening shift.
"Hospice care in Cambridge here is excellent", she added.
I had no doubt, that hospice was a Godsend to so many who were in dad's position.
"Yes, we're sure", I told her as I looked at my brother. My eyes redirected back to her, "Dad wants to be at home".
Dr. Sims then turned to my dad and said to him, "You must have done something right in your life".
Always the modest man, dad replied, "Oh, I don't know about that. I'm very proud of all three of my kids".
During that meeting, Peter and I both affirmed out loud that dad did a lot of things right in his life. A lot.
Dr. Sims then proceeded to order all of the things we needed: Hydromorphone, Lorazepam, Fentanyl patches, Decadron, Lactulose, Bisacodyl, Rabeprazole, an emergency drug kit (complete with drugs, syringes and needles), respiratory services for oxygen, occupational services for aids like a wheelchair, hospital bed, air mattress, commode and hospital table, and nursing staff that would come in every few days for half an hour to assess that dad's needs were being met.
We were now on the road home, well-equipped with tools that would help see dad achieve as much freedom from suffering as was possible.
The implementation of comprehensive conventional palliative care was a major turning point in dad's care. Thank you Dr. Sims!
Alternative and complementary therapies are thought to be bogus by anti-CAM MDs for any and all types of conditions, and yet these therapies are anything but bogus, and do provide relief and comfort for those who are dying. They did for my dying father.
Julie was involved with prayer for dad, which included the assistance of her mentors from her church. We played cassette tapes of beautiful Serbian music that dad always enjoyed listening to. While Morphine and Decadron were complete winners as far as palliative drugs go for relieving pain, the Lorazepam did nothing for his moments of fear and anxiety, and the homeopathic remedy, Arsenicum Album was much more useful and effective. Julie and I took turns gently massaging his painful muscles.
One therapy that I used on dad, engendered a peculiar facial expression from him. I started doing therapeutic touch on him (a practice I do rarely and only on my family members).
"What are you doing?" he asked me with a crinkled face that had skepticism written all over it.
"It's called therapeutic touch, and it can help ease the pain in some people. You're my first guinea pig".
He weakly laughed through the pain he was experiencing. Whether it was the frequent dosing of morphine, the placebo effect, or something else, each time I would do therapeutic touch on dad, he would drift off into a peaceful sleep within the few minutes after I had begun. I didn't care what was helping. I was just grateful that something was.
There is no doubt in my mind today, that the combination of conventional and complementary therapies that dad received, created the most beautiful death experience I had ever witnessed in my life.
I had seen many, many people die. In nursing homes, in emergency departments, in ICUs, on general medical floors. Lots of people. I remember sitting with an elderly woman who was a DNR (do not resuscitate) in ICU and I was the only one around. She had no family. I held her hand until her cardiac monitor flat-lined, and I thought, "Gee, how sad it must be for some people to die alone".
Dad had all of those who loved him, surrounding him during his final weeks. He experienced maximal comfort, joy, love, laughter, peace and contentment. It was both a time of the celebration of love, and the remembering of sweet sad sorrows of years gone by. Everyone came to share with him, in a toast to his life; new and old friends who were dear and loyal to him, friends of his children that had also come to love him, and the old friends back in the old country who he had forged bonds of tungsten with.
There were the daily visits with his 6 grandchildren who would surround his bed, loading heaps upon heaps of love onto him, but never being able to match that amount of love flowing back to them from their grandpa. His 3 other grandchildren were not able to be by his side, so they sent their love to deda from California and British Columbia through the cyberspace waves of Skype. He was even able to Skype with family members in Denmark and in Serbia. Thank God for modern technology!
Everyone who had ever met dad, liked him, loved him, respected him, or all of the above. His parents, his siblings, his wife, his children, the spouses of his children, his grandchildren, his old friends, his new friends, his co-workers, his neighbours, acquaintances, strangers. Everyone.
Dad definitely did something right in his life. A lot of things.
Gratitude. Dad was overflowing with sincere thanks to everyone who came to visit him or care for him. He took all of their hands in both of his own, shook them gently, and to each he would say, "Thanks, thanks a lot, thanks a lot for coming". It didn't matter who they were. The respiratory tech, the nurses, all of the visitors. Everyone. Even though the words of thanks were always the same, each utterance of gratitude from him was like I had never heard the words multiple times before, because each time he spoke them, it was with the deepest, most authentic, heartfelt sincerity I had ever heard. Dad was a man who lived his entire life in gratitude, the difference in the last 2 1/2 weeks, was that the gratitude coming from him was ramped up to a phenomenal intensity.
Along with gratitude, there was so much humour and laughter in dad's small house while he was dying, one would think that there was a major party going on, and not the dying experience of an 84 year old man with mets to his bones and lungs.
Dad always had a good sense of humour, but during his last few weeks, as with his gratitude, his humour also ramped up. I was either laughing at his jokes or helping him with basic care. There really wasn't any time for sadness it seemed, during those last 2 1/2 weeks.
Dad was a very independent fellow and accepted the loss of his ability to care for himself with grace and humour. When dad's appetite bottomed out to zip, and we asked him if he thought he could eat some breakfast, he jokingly replied, "I'll have 6 eggs and 6 bacon". When I asked dad to please ring the bell when he was finished on the toilet, and to please not walk out of the bathroom without my help in case he fell and broke his fragile bones, knowing that I was his relentless watchdog, he slyly said to me, "There's only one door. How can I get out with you there? Maybe I'll go out through the window".
Dad was constantly thirsty because of the meds he was on, and everyone took turns every 5 - 10 minutes or so, holding a bottle of water with a straw to his mouth so he could drink. When he could no longer get out of bed, he needed assistance to use a urinal to void. One time dad was intensely thirsty and at the same time needed to void, so with one hand I held a water bottle with a straw to his mouth, and with the other hand I positioned the urinal so he could void. He looked at me with tired but mischievous eyes and said, "Are you sure you're giving me the right bottle to drink from?"
Through all of his pain and all of his loss of independence, he still thought of others before himself. While on the phone, he shed tears for the plight and suffering of his dear friend who was struggling with caring for her bedridden husband. He shed tears for his old friends whose parents died tragically during WWII when recounting the stories of years gone by with them.
He never shed one tear for himself. Not ever. He was always thinking about how he could be of help to others even in the last 2 weeks of his life. Julie was shoveling snow off of dad's driveway one day, and he said to me while now completely bedridden, "I wish I could go out and help her". He was serious and he meant it.
"Dad, I think she is doing a good job on her own".
Dad was determined to live to December 1st. Why? So that his children could benefit the most from his pension inheritance and dying before then would mean for him, that his children would not benefit maximally. Who thinks like this? A man who places the needs of all those he loves before his own, even when he is dying.
Peter used his phone to videotape dad talking about the many aspects of his life, from the days back in the old country to his experiences in Canada. Peter also videotaped dad's story about why dad wanted to make it to December 1st. My brother did this for the sake of posterity and titled these 52 short clip video segments, "Conversations With Dad".
One of the most joyful moments I witnessed during dad's final days, was a visit from his old friend, Mr. Stevo Kangrga. The plum brandy was flowing, noses and cheeks were flushed red, the Serbian Skype lines were open, and the laughter was contagious. Thank you slivovitz! Thank you Decadron! Thank you God!
Toward the end, dad's feet became swollen like big water balloons. He wasn't uncomfortable, he just didn't like the looks of them and asked me if we could do anything about this problem.
"I'm afraid not dad. That's a sign that your kidneys are shutting down and that's part of the dying process". He then gave me his all too familiar shrug of acceptance.
Dad was coherent and conscious up until 24 hours before he died, which was at 2:30 p.m. on December 9, 2010. Julie, her son Jordan, and I - each one of us held dad close as he exhaled his last breath.
I have been blessed twice over. Firstly, to have had a dad like this and to have shared him with my siblings. Secondly, to have had the privilege with others, of caring for him during his final weeks, where I was able to bare witness to peace, love and joy in their finest states.
His, was a beautiful death and he got his wish. Dad died at home.