Moving towards the light

img_20160728_125627In late 2014, I got a call from a lady who had heard from her former neighbour that I did house calls. The lady told me that her husband had suffered a stroke about a year and half ago, and was bedridden since then. He was due to for a doctor’s visit, and a new prescription for his medication. She wanted to know whether I would be willing to come and give him a check up and write a prescription. Thus began a journey with a patient that ended last week with his peaceful passing away at home, in his own bed, surrounded by his family. For me, the death of this patient marked a significant milepost on my own journey from darkness to light that  began about 10 years ago, after my own father died…

In 2005 when my father was given a diagnosis of stage 4 lung cancer, the words death and dying were avoided like the plague by the doctors who looked after him. They spoke of inoperable tumours, chemotherapy and radiation regimes. Pain was managed with ever increasing doses of drugs, and the side effects of the treatment were treated with more drugs. He was encouraged to “fight” the cancer by embarking on treatment that would not change the inevitable outcome of his disease: death. When he was too weak to keep fighting, these same doctors retreated into the background. None of them did house calls, and none had any words of support or encouragement for the unavoidable path that my father faced. All they did was offer more drugs, and back away, leaving us alone, sad and uncertain of what to do next.

When he was diagnosed, I had decided that it was more important that I be his daughter, and not his doctor. As his daughter, I set out to try and fill the very large void left by the very specialised doctors who treated the cancer instead of caring for the man. I had nothing to go on but my own admittedly limited experience of looking after dying patients, and my strongly held belief that good medicine must involve more than treating physical symptoms with a slashing, burning and poisoning.  My plan for coping with the situation was to find a way to hold my father’s hand for as long as I could through his last journey, in much the same way he must have held my hand for the first steps at the beginning of  my own journey in this world.

In my search for guidance, I acquired a copy of Elisabeth Kubler Ross’ book  “On Death and Dying”. From this source,  I learned that dying folks want to be able to talk to their doctors about death and dying; a conversation that my father’s doctors clearly had no intention of having. So I started the conversations, by sharing stories of my first experiences with dying patients as an intern. I wrote him letters when I could not speak the words and told him it was chicken soup for the soul, when he was in too much pain from the treatment to be able to eat. I kept him company in the dark hours between midnight and daylight, sometimes in person, and sometimes by cell phone. I snuck him Dove chocolates when my mother wasn’t looking. When he was travelling the last few miles, and did not seem to be aware of who or what was around him in this world, I sat on the floor beside his couch, shut my eyes and willed him to move towards the light….even as our world was about to become a little darker as his light was leaving us. When he drew his last breath,  my sister, my mother and I were there to witness it. Initially, the overwhelming relief I felt for his final release from suffering helped to dull the pain and sorrow of his death.

Later, it was hard to look in the eye of a dying patient, especially one in pain, without seeing my father. I decided to manage my sorrow by using my experience with my father to make the natural process of dying be something that celebrated the life and wishes of the patient and the family. I started by offering the option of home visits, and then by addressing the elephant in the room through initiating a discussion on what death and dying meant to my patient, and also to the family. It was hard to bring it up at first, but with repetition it got easier. The relief  and gratitude of  both patient and the family when I opened the discussion on death and dying was a powerful motivator to keep doing it. I took the approach of asking how they wanted to take the journey, since not taking the journey was not an option. I attended seminars and conferences on palliative care, and managing the dying patient so I could learn the best ways to help these patients. With each encounter, where I succeeded in helping others to find their way through this final transition, the burden of my own sadness lessened a little, and I felt that I had put my pain to good use.

Then came the elderly gentleman that I was asked to see in 2014. He was to, paraphrase J. K.  Rowling, the patient that lived. On my first visit to him, I learned from his family that his doctors at the time did not expect him to survive the stroke that left him bedridden. He had defied the odds by living 18 months by the time I first met him, and he continued to defy the odds for another 2 years.  After a rough patch in September 2016, I had a frank discussion with his wife and daughters about how they wanted to approach the last journey when the time came. By Christmas 2016, he had picked up enough to be  part of the family festivities propped up in a chair in the living room. Shortly afterwards, things took a downward turn, and in a matter of days it was clear he was dying. Thanks to the marvels of modern communication, his two daughters and I were in daily communication through Whatsapp. Once we realised that it was the last leg of the race, apart from a sedative, there was no need for any other drugs.  Now having 10 years of experience in dealing with death and dying, I was able to help daughters (through long Whatsapp messages)  with suggestions  that provided solace for the spirit, when there was nothing more we could do for the body. Things like getting the priest,  not forcing him to eat and drink, playing his favourite music, sitting around his bed to reminisce over shared family history, and to say their goodbyes. These are the things that I found bring some measure of peace as everyone waits for the inevitable moment. Finally within hours of the arrival of the last daughter from abroad, I got a call close to midnight, to say he had stopped breathing. It was over.

When I arrived at the house in the morning the sight of his daughters and wife with eyes red and swollen  from tears and lack of sleep brought back memories of my own experience 10 years ago.  The day bed with the pillows and blankets in disarray bore witness to the vigil kept till that last breath was drawn and reminded me of  similar scene from my own parents’ house. As I hugged each of them, my eyes too were full of tears as I sensed not just the loss but the amount of love in the room. I learned to my surprise that my “wise words” of advice via Whatsapp had been shared by the daughters in Jamaica, with the daughters abroad. The words had brought them comfort, and helped to direct their actions, and they were grateful. As I gazed at my patient’s family gathered around, and, at a scene so similar to the one I was part of 10 years ago, I realised I had reached a significant milepost in my own journey. I felt a lightness of heart that I knew could not have found its way there without my having first experienced the pain of loss. With love and compassion, both given and received, my own grief had loosened its hold, and I too had moved closer to the light of inner peace.

 

 

 

 

 

 

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