Louise and Charlie: A story about love and grief
Personal Stories | September 24, 2021 | Louise Szabo
When Louise’s husband Charlie told her that he had started the process for a medically assisted death, she had no clue as to what he was referring. Once she understood what it was all about, she was not surprised that he managed his illness with strength and courage, never complaining about pain or discomfort. She wished she could have done more for him but it is in hindsight that she sees, through his eyes, she gave him the best care she could.
The year before his death, Louise wrote Charlie’s biography. He argued that he had no story to tell and even refused to be interviewed. She went ahead anyway. He pointed out so many mistakes in the first draft that she practically had to do a complete rewrite. In the end, he told her that she got it right. It is a wonderful legacy to their family – that was his story. This blog is for Louise, as part of her grieving journey. It comes from the heart, a reflection of their 57 years together.
Please tell us about Charlie
My husband Charlie came to Canada in 1957 as a refugee after participating in the Hungarian Revolution of 1956. The Red Cross paid for his passage by ship from France to Quebec City, and on arrival they gave him the five dollars he needed as an entry fee into Canada. They also paid his passage by train to Ottawa and a couple of weeks in a hotel room. He was penniless, had no job, knew no one and did not speak English. In 1995 he retired from the Canadian government from the department of Communication after a career as a tool and die maker. His major skill was in building satellite models, some of which are on display in the Canada Science and Technology Museum, and he was proud to be part of the team who designed and built the prototype of the Canadarm. He loved spending time at his cottage on Black Donald Lake, our small family, cooking – especially on his Green Egg barbecue – reading, fishing and me. We were married for 57 years.
How and when did Charlie die?
Charlie was diagnosed with bladder cancer in 2016. He also had serious liver disease and severe anemia. Unable to tolerate chemotherapy, he had several surgeries, radiation treatments and hyperbaric oxygen therapy. In October 2020, while in the hospital, he was told that the cancer had metastasized to his lungs, and he was put on palliative care. The minute he got this news he started the process for his final journey by applying for a medical assistance in dying (MAID).
On Saturday January 30th, 2021 Charlie became very ill. He could not get out of bed and the palliative care team told us he only had a few days to live. Still, Charlie insisted that we contact the MAID team. This was the way he wanted to go. He had seen too many people die in Hungary during WWII and as a Freedom Fighter, and he did not want to suffer and linger through a slow death.
Charlie was offered calming medication by the palliative care doctor. Quite aware that he had to be present in mind, he objected. He was afraid that he would not be alert enough to give his consent for MAID. This was his main worry. He wanted to go. He was desperate to go. Assured by the palliative doctor that the injections would only relax him, he reluctantly accepted it. At the mercy of those around him, whenever a nurse or doctor from the palliative care team came into the room, although by then he could barely speak, he managed to ask, “Are they from MAID?”
We had some difficulty reaching the MAID staff, but once we did, they responded immediately. On Monday, February 1st, we were lucky that Dr. Naik not only had at his disposal the medication needed but was available to come to our home. Doctor Naik arrived shortly after 6pm. By then the palliative team were gone and only our daughter Sandy and I were at home.
After quick introductions the first thing the doctor did was ask for Charlie’s consent for MAID. Charlie vigorously nodded a yes. The doctor inserted the needle in his arm, told us to take as long as we needed to say our final goodbyes and left the bedroom.
Saying goodbye was not easy. The final kiss was sweet, full of love and one I will always treasure. When Sandy went to give him a kiss on the cheek, he turned his head indicating that he wanted it on the mouth. At that moment he was completely aware, and I only wish he could have spoken to me. I lay my head on his shoulder told him once again that I loved him and put my arm across his chest. Silent tears flowed. I did not want Charlie to see me cry. I do not know if he was also crying. I did not look at him. I wish I had. We were ready and Sandy got the doctor.
Once again, the doctor asked for his consent and once again Charlie nodded his head. Because his vein was so fragile Charlie moaned in pain as the medication entered his arm. I hate to realize that in his final moment of awareness he was in pain. After only a few seconds he fell asleep. More medication was given to him and in what seemed to me to be less than a minute the doctor told us he was gone. It was fast, peaceful, and somewhat painless. It was a beautiful way to go. He died at home with the help of Dr. Viren Naik on February 1, 2021.
What feelings did you have after Charlie died?
I was numb. My feelings shut down. Sandy and I sat in the living room waiting for the undertaker to come and remove Charlie’s body. I once went into the bedroom to look at him and kissed his forehead. This was not my Charlie. His eyes were sunken in, his mouth slightly open and I did not want to dwell on what he looked like in death. This was not how I wanted to remember him.
What did you do to cope with your grief immediately after Charlie’s death?
I had a shot or two of brandy. When they came to get Charlie, they asked if we wanted to see them cover his face. We were okay with that. I kissed his forehead, they pulled the sheet over his face and wheeled him out of the apartment. After he left, we went to the bedroom to make the bed. The undertakers had already done this and on the pillow had placed a picture of Charlie and me. How could we not burst into tears? Sandy and I held onto each other and let the tears flow. It felt good.
How are you coping with your grief now?
At the beginning I let the tears flow when they came. And they came often at unexpected times. I would cry at the grocery store, at the drugstore, during a walk, in the middle of the night, all day long. I had no control over them and that was okay with me. Now, my tears have slowed. Charlie has not been gone a long time, although at times it seems like forever. It is not his death that I mourn. With no quality of life, no health, no dignity in care, no enjoyment, he is much better off where he is. The grief is for me, my loss, my change of life, my problem in finding a focus, a new purpose. I felt lost. Not being a religious person, I found it difficult to capture his essence in the afterlife. I questioned it. I struggled with it. I needed him, needed to find a way to connect with him. I do talk to him, ask for his advice knowing that the answers are from my head and in my heart. I miss him. I find this difficult to write!
Was there any type of support that you found helpful after Charlie died?
I am so very grateful for my daughter Sandy who stayed with me from the Saturday when Charlie became seriously ill, until she left the following Thursday. We have always been close, but this brought us even closer. We can talk about anything, everything. We became more than mother and daughter. We became best of friends. Many people in our condo building sent cards and some phoned. Others brought me much welcomed prepared meals. I didn’t feel so alone knowing that so many cared and were there for me when Sandy went back home.
Was there any type of support that you found unhelpful after Charlie died?
One person called and mentioned something about him committing suicide. That word upset me. But then I realized that this person was not using the word in a negative way. It was his difficulty in expressing himself in English that had brought on the word. He agreed fully with MAID and told me that had it been him, he would have also chosen a medically assisted death.
Was there any support that you did not receive that you wish you had?
With COVID-19 in our midst, we were unable to properly celebrate his life. We decided that we would do so when we could give him a proper farewell at the cottage. The only acknowledgement for the moment would be the obituary in the Ottawa Citizen. Since COVID-19 prevented crowds from gathering I missed the hugs big time, and the spontaneous talk, maybe even more. My apartment door stayed closed. I could not invite all my close friends to come in. I could not engage in conversations about Charlie’s sickness, his death or his MAID provision simply because there was no one to talk to. It is now too late to do this. I don’t want to be a bore!
Did your feelings change as time passed?
I am calmer now. I still have my moments of crying and know that this is good for me. I sit alone in my apartment and miss the human contact and the ability to express my grief in words. I consider my grief as a very personal journey. Only I know how much we loved each other and what little things in my daily life remind me of him.
The day after he passed, I slept in the same spot where he had died. I imagined his arms around me, and I slept soundly. His presence is here yet I felt a bit out of touch with it.
I am ‘lucky’ that I can unload on my best friend Lorie who lost her husband a few years ago. She understands and we can relate and talk about it. She lives in Kingston so getting together, at that moment, was out of the question. If only we could have visited. Damn COVID!
I miss him. As days go by, I learn more about myself. A new me has emerged. One that is stronger and self-assured. One that I like and that would make Charlie proud. He is present in his absence. It surprises me. The tears don’t come as often. Still, I think of him every day and realize how much I was loved. I am grateful.
Is there anything you know now that you wish you knew in your earlier days of grief?
As I look back on the last moment of Charlie’s death I wonder if I would have been better to have looked him in the eyes instead of resting my head on his shoulder. Was a hug better than a look of love? At the time it was what I needed; I only wish I knew if this is what he needed. I cherish the memory of my hug and try not to dwell on ‘what if’. Sandy told me that he simply closed his eyes and fell asleep. Some people did not call, and I suspect they were afraid to disturb me. Maybe I should have phoned them. But then, how do you call someone only to burst out crying. Besides, there is so much to do at the beginning, and it gets so confusing especially when your mind and heart are in grieving mode.
Is there anything else you would like to share with us?
Charlie’s death was not pretty. Right before my eyes, from hour to hour, he physically changed. On Saturday he could talk, on Sunday he could barely speak, Monday his speech was gone. He could drink from a glass, then from a bent straw, then, and I wish we had known this sooner, we gave him water from a spoon. He could not turn over until the palliative care staff told us about putting a sheet under him to move him from side to side. After our first 24 hours as caregivers Sandy and I were exhausted, and I seriously considered putting him in a hospice. I am so glad I didn’t. We were taught helpful skills by the palliative care team and we managed to take care of him. With a pic line inserted in his stomach, we even gave him the calming injections. It was hard work and if it wasn’t for Sandy, I could not have done it.
I can spend the rest of my life knowing that at the end we did the best we could to make Charlie comfortable. Best of all, we were able to make his last wish come true. He died at home in his own bed with the help of MAID.
The plan was to deposit his ashes in the lake at the cottage. I cannot do it. Charlie was never fond of swimming, and I can almost feel his fear. Until I can join him in the lake, Charlie’s urn is on the dresser in my bedroom next to his picture. I take great comfort in having him near me. We were a team in life and will be again in the afterlife. Bound by love, I let my tears flow.