I have returned from the Maritimes where I spent the past 3 weeks with my family. Sadly, my father passed away on March 20th at 9:55 am. My mother and I were by his side, along with some other family.
I arrived home at 6:30pm on Wednesday and he died about 40 hours later on Friday morning. When I arrived on Wednesday he was awake but not talking and they were giving him morphine. He knew me when I came in the room and followed me with his eyes. We sat vigil by his bedside for most of the next 40 hours, my mother and I and the extended family. It is hard watching someone die. He never said anything more and just looked around. His neurological disease prevented him from moving any more but he could still grasp our hands and raise his eyebrows. On Thursday he smiled at one of his good friends.
He suffered from a cerebellar disorder called olivopontocerebellar atrophy, which destroys the cerebellum. He was diagnosed in 1993 at the age of 43. He died 16 years later at the age of 58 (yes, my parents are very young - my mother was 18 when I was born!).
Over the years, he lost his balance first, and went from cane to walker to wheelchair. He lost fine motor skills and developed slurred and scanning speech. Later, he developed incontinence and tremors in the arms and then swallowing difficulties. For the past 18 months he has been in a nursing home since he required full-time care and could no longer walk, bathe himself, or get into and out of bed. He was unable to move in bed and could not even adjust his pillow. The disease destroyed the ability to coordinate movement and the most he could do was reach for things and really not feed himself very well.
In the last few years, he also had frontal lobe issues accompanying the cerebellar disorder, so he suffered from anger and disinhibition at times. Medications helped control his moods and minimize outbursts. In the last week of his life, he still knew Mom but would no longer eat. He always ate for Mom, if not the staff, but in the end, he would not even eat for her. His last full meal was about 10 days before his death, which Mom fed to him.
This was a horrible disease, but he persisted to go-go-go and never gave up. He was always positive and never languished in self-pity. But in the last few months, Mom could see that he had lost his will to live. We were just thankful that he did not lose his ability to swallow sooner as it would have meant years on a feeding tube, as the disease progressed and made him into a frozen body. Instead, he just stopped eating while he still had some movement. He stopped talking and in the last week seemed to shut down and begin to die.
Dad was a real character. We had a very tumultuous life as he was an alcoholic with a bad temper. But he was also a very peaceful, happy person at times. He was good-natured with many people and would give you the shirt off his back. He was a very hard worker and devoted to his career and hobbies (salmon fishing mostly, and cheering for the Toronto Maple Leafs). He was a big supporter of me and always was very proud of me. I got a strong work ethic from him and also a lot of humility. Dad was very happy with life and enjoyed living and did not seem to want for much. He was always happy with their house in the country and all they had and never seemed to want for anything.
In the last few years, as primary caregiver, my mother and he mended a lot of their earlier struggles and became good friends. My mother talks about the gift of illness, as it gave her an opportunity to have a new, loving relationship with my father that he had made difficult before.
He was a complicated person, and our relationships with him were complicated. I think it is often the case with an alcoholic parent. You love them and you hate them, and you see a side of them that others do not see. I have many fond memories and also many terrible ones. My heart pains because of the way he died, and because of what could have been, and because of all the goodness he possessed too. Dad loved to cook Sunday breakfast, fish salmon, work in the yard, watch hockey, and be outside. He was always tanned by May. He loved his chainsaw and the simple country life. He helped Mom make preserves and didn't mind helping around the house. Despite everything, he had many wonderful qualities and a great sense of humour. We were very close when I was a child and I followed him everywhere.
I will miss him terribly. It is still a shock. It is so strange to watch a death. One wonders what is really on the other side. In the last moments of his life, he looked away from us and towards the ceiling and seemed suddenly to become very peaceful. We asked him what he saw on the other side, we asked him if he saw his mother and father and brothers who had passed. I believe he did. I hope he is with them now in heaven.
And I also hope that my mother can heal and enjoy her life now. She has worked full-time and been sole caregiver for him for 16 years. In the last two years, she was at the nursing home several times a week and put her own life on hold for far too long. She was totally devoted to his care and advocacy. Caregiving is selfless and exhausting. I am so thankful she was there to give him a dignified life and death, to be his supporter in sickness and in health. She went far beyond the call of duty and is a wonderful, compassionate, and caring woman. She is a saint in my book. I only hope we all have such a blessed companion in our final days.
I think Mom is a bit lost now, and is struggling with her identity, as she is no longer needed full-time to care for another. I pray she will find peace and take back her life and enjoy what comes to her. I hope she is surrounded by beauty and peace and love forever. She has earned it.
I think both she and Dad were given the gift of each other. I was given the same gift. Sometimes I am not clear on the reasons, but know that my life has been very rich indeed.