Yesterday I finally got the courage to delete the pictures on my phone of my husband when he was dying. One where he lay, skin and bones, with his mouth open as if he was dead. Several of the foot that went black. Why on earth would I have such pictures on my phone? Because, COVID.
I first noticed that my husband, John ate very little, didn’t walk the dog very far, and slept a lot in August of 2020. I pointed this out to him and he said it was because at 76, he was getting old. In the family tradition, he said to me, “I’m fine.” To understand how alarming this statement was to me, my mother-in-law on her death bed kept saying, “I’m fine, love. I’m fine.”
I phoned the doctor and due to COVID, she wanted to have a phone visit. Despite having stage two diabetes, we had not physically visited our family doctor since around February 2020, just before the pandemic hit. We would tell her our weight and do our own blood pressure. For many months, we could not even go to the lab for our regular blood tests. I insisted she see him in person.
I took John to the doctor but I was not allowed in with him. The waiting room was closed. So I sat in a chair by the elevator in the eerily quiet Boardwalk medical building. John said the doctor didn’t seem too worried. As the child of parents who died of cancer and the retired director of HopeSpring Cancer Centre, I knew something was wrong. I phoned the doctor and insisted John should have a CT scan. She said fine but because of COVID, he would not be able to get an appointment until January 2021. This was early September 2020.
That evening I visited a friend and by chance, she had another friend visiting her who has gone through many fights with cancer. I burst into tears and told them my fears. The cancer survivor agreed and said I must insist on a CT scan as soon as possible, even if it was in London or Toronto. My friend’s husband suggested the States, but we realized the border was closed, due to COVID.
I knew John would be dead if we waited until January for a CT scan. This was not an idle fear. My neighbour’s daughter-in-law waited until January 2021 for a scan after many visits to her doctor saying “It’s not my diet, something is seriously wrong”. She has stage 4 colon cancer. This mother of two adorable kids and a lovely husband is now struggling with many chemos and surgery for something that should have been caught much earlier.
We managed a CT scan in Cambridge. I was able to go with John to the scan. In a surreal waiting room, a man told us that any vaccine would be dangerous because the government is putting nano technology in it to follow our every move. I asked him if he had a cell phone. He did. I pointed out the government could already follow him if they chose (probably not) through his phone. That went nowhere.
In October, the results of the scan came back. John went for his first visit to the cancer centre. I sat in our car in the Grand River Hospital parking lot and listened over the phone as the oncologist told him he had stage four esophageal cancer and 6 months to a year to live. I heard him crying. I held my phone and cried too.
Over the next few months, he visited the cancer centre for more CT scans, chemo and radiation. I would drop him at the door and he would go in. As he became weaker in early 2021, he would head in with a walker and finally, in a wheel chair. At the end, when he could no longer dress himself, normally I would have gone in as his primary caregiver and helped him. Instead, very kind nurses, volunteers, and PSWs helped him. He was a chatty man and by the end, they would call him by name. At the end of his chemo and radiation, when there was nothing more to be done, the cancer staff called me into the waiting room and he rang the gong (usually reserved for people who are cured or in remission). By that time he was very thin and obviously dying.
In March 2021, my daughter, a PSW who works at a local nursing home, came to help me look after her Dad. At the same time, she separated from her husband and she and my two grandchildren came to live with me. With also a year and a half of nursing school, she was a life saver.
Eventually, we had a masked nurse come once a week to see John at home. We also wore masks but at the end they said John didn’t have to. With all the people coming into the house, we managed to get him double vaxxed. The thought that he could get COVID in his state was horrifying. A PSW eventually came once a week to bath John, to give Bronwyn a break. We had no problem getting a hospital bed and other equipment. He declined quickly.
We were told that he could go to hospice and that we could visit. My daughter had been through months of lockdown with her nursing home residents where relatives could not visit. We did not trust that the hospice would not suddenly go the same way and he would die alone.
Bronwyn and I took care of him at home. It was hard but with my daughter, he had no bed sores or rashes, and someone was always there to see to him. My older daughter would come one or twice a week for a cheerful visit with him. At the end, all of us, including my grandchildren were present when he passed away.
Now my grandson, with mild autism, will hold up his mug and we will say, “Cheers to Pa!” Then he will say, “We saw Pa’s body go by.” (Wrapped in tartan blanket and out of the house to the hearse). I will say, “It was very sad.” Then the two children will talk about happier times with Pa.
The pictures on my phone? His palliative care doctor once said to me over the phone, “What do you think of Doctor So-and-So, his radiologist. Doesn’t he have a nice beard”.
I said, “I have never met him.” I didn’t say, “I have never seen you either.”
All the consultations went through the palliative care nurse who reported on John’s condition. The doctor did talk to me over the phone. I had to send the doctor photos of what John looked like and what was happening with his foot. Because, COVID.
Everyone watch the blog on Nov 11 about my visit to Bob Durham’s grave and the remarkable people tracking down the missing of WW2 and looking after their graves!
I love your honesty! you take people into that room which is private and yet so public and brings mortality close in a way that “us”. thank you for that! i have no doubt John was feeling grateful for you.
I have a question about your blog concerning Robert Durham.
I’m a WW2 researcher and we found his unknown grave.
Dan actually read this first Jane ( I missed it in the flurry of FB scrolling too quickly). He thought it was well written and gave insight into the difficult journey you all went through. May all your wonderful memories of John aka as Pa give you peace.
The COVID/Cancer combination is a truly horrific spot to be in for both the patient and the family. I am sorry about the journey you, John and your family experienced. Hugs and best wishes for your continued healing.
Thanks so much. It isn’t just the filling of the ICUs , it is also the repercussions for others who are sick with other conditions.
Hey Jane , Jackie Crebolder Kleinknecht here, sorry to hear of John’s passing.
Hi Jackie! I hope you have been having a good life.