An open heart and a will to love...
I heard someone say that nothing can really prepare you to deal with death and dying and the way I was brought up certainly did not lead me to believe otherwise!
I remember when I was a child, my grandmother (who lived with us and I’m sure meant well) used to make me kneel down to pray at bedtime. It was always the same prayer:
"Help me Lord to live well and die well. I may only have a few moments to live and I may not wake up in the bed where I fell asleep tonight...."
Night after night, I promised myself that I was not going to die… simply because I was not going to sleep! Well, so much for that plan!!!
However, I can recall spending many sleepless and horrifying hours (in my child’s mind, it seemed like hours!) worrying about my safety and the safety of my family.
Throughout my childhood, I was terrified of death and that fear followed me for most of my adult life.
But then, life has a wicked sense of humour and when I applied for a job in Psychology at the Moncton Hospital, I was offered one in Oncology. As many in my family had suffered with cancer, I knew too well what the outcome of the illness often was.
In retrospect, in spite of my studies and life experiences, I did not feel that I was prepared for the task that was awaiting me. Still, I accepted the challenge and went into the experience with a good heart and the best of intentions.
I remember well the first time I met him.
I had received a referral after he had been diagnosed with terminal cancer. He was a man in his sixties, very friendly, very articulate and, on that day, surprisingly very calm.
He talked about his cancer. He talked about his family, his wife, his children, his grandchildren and it was obvious, right from the start, that his family meant the world to him. He had a very good understanding of his illness and knew that his life expectancy was to be much shorter than he had expected.
He was very saddened and worried however, about the pain and suffering his death would cause to those he loved the most.
His wife, who was also present on that first day, seemed more distraught than he was. She felt that he was“giving up on life” as a few days after hearing about his poor prognosis he had started to give some of his personal belongings away. He was very rational, very practical: “I rather do it now, while I still feel good!”
Over the next few months, I met with him several times as an inpatient and also at the Oncology clinic when he came in for his chemotherapy treatments.
One day, I got a message saying that he had been hospitalized the night before and that he had presented himself to the nurse station very early that morning, asking to meet with me. As I had many appointments that day, I didn’t get the message until much later in the afternoon.
When I visited him, he told me that he had a decision to make. He had been very sick over the last few weeks from the treatments and, as those treatments were given only a way to prolong his life, he was thinking about stopping them and letting nature take its course. However, he stated that before making his decision, he wanted to know what I thought.
Somehow, I managed to remain calm and professional. His next treatment was scheduled in a little less than two weeks and I advised him to put that decision aside for the time being. I proposed that he’d wait and speak to his oncologist first (as he was scheduled to meet him the following week) about the possibility of lowering the dosage of his medications, which could possibly reduce the side effects and bring more quality to his life. When I left the room, he was feeling better emotionally and seemingly resting more comfortably.
I, however, was a total wreck! Who was I to be given so much trust? Who was I to be part of a decision making process over matter of life and death? I was only a human being, only trying to do my best… and I certainly didn’t have all the answers. Back in my office, I remember feeling so sad for him. I was also feeling so helpless. Mostly, I remember thinking that he deserved better than what I could offer!
The next day, the very last thing I wanted to do was to visit him! I was afraid of his questions. I was especially afraid I would not have the answers… But I went anyway! And I visited again the following day prior to his discharge home.
Over the next few months his illness continued to progress and he was hospitalized many more times. When his oncologist decided there was nothing else to be done, when the treatments stopped, as he was waiting to die, I knew that I could not and would not abandon him.
It was not always emotionally easy, but I visited him as much as I could. I would listen to him as he talked about his life, his accomplishments, his regrets, what made him happy, what made him sad… He talked about what he hoped for in his final days. He talked about faith and about life after death.
As his physical condition continued to deteriorate, there was so much he could have complained about but he never did! He was so courageous, so inspiring.
His main concern was for his family and his greatest wish was that they would be all right after he was gone. He would lie in bed and try to foresee the future problems they could meet along the way! Then, from his hospital bed, he would try to find solutions. At his request, I met with his wife and daughter several times.
One day, as I came in to his room (looking for his wife who I wanted to meet privately), I found him to be very sleepy. Just before I left his room with his wife, he held my hand and said “Thank you”. I knew that he was thankful that I was caring for his (equally courageous and inspiring) wife. Then he added: “I’d like to talk to you when you have time” and it was agreed that I would come back in the afternoon.
However, when I returned, he was sleeping and I would not wake him. I told his wife, who was at his bedside, that I would be back in the morning. Again, the next morning, I found him sleeping.
That afternoon, when I returned, the whole family had gathered in the hall in front of his door. At that moment, I knew that he had just passed. His wife led me to his bed and as I had done several times before, I held his hand. I then said goodbye to a special person, someone I had grown to love and respect over the last year.
As I walked back to my office, I tried hard not to make eye contact with anyone. The last thing I wanted to do was to start crying in front of colleagues or patients. (What kind of professional does that???).
By the time I reached my office and closed the door behind me, the tears were falling heavily. I felt sad and I felt so guilty for not waking him up! Through tears, I kept saying that I was sorry! He may have had something important to tell me, to ask me, and now I would never know what it was! I felt as though, in the end, I had abandoned him!
All of sudden, a feeling of peace came over me and the tears stopped all at once. I was startled as I realized that I couldn’t have shed another tear if I had tried. In that moment, I knew for sure that he had come back to console me as I had done for him so many times during the last year of his life.
In this journey through life, we all have lessons to learn and fears to conquer and because of him, and of all the other people I have cared for in the last six years, I am not as fearful of death as I used to be.
I am learning huge lessons in love, forgiveness and surrender.
Along the way, I have learned that we, caregivers, don’t need to have all the answers. We can help in so many ways. With our presence, our empaty and our kind gestures we can show we care and make a real difference in their life, at a time when they are at their most true and vulnerable self.
I have learned that it’s okey to love and it’s okey to cry with them and for them. I have learned that the hand that I hold is also holding mine as we walk together toward the same destination.
Most of all, through this amazing journey, I have learned that nothing can prepare you to deal with death and dying… except an open heart and a will to love.
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