I am a fixer. That’s what I do, it is who I am. I served in the Canadian Navy for 35 years and was married to the most wonderful woman. Our lives changed completely the day we got the news that my wife, Sam, was diagnosed with stage 4 metastatic cancer. We couldn’t believe it but the sympathy, with lack of hope in the eyes of our doctors and nurses, said enough. The helplessness I felt in that moment and throughout the whole journey was the worst part of it all.
Sam made me promise that I would keep her at home as long as possible. I was filled with sorrow watching my beautiful Sam’s health deteriorate quickly but I remained strong for my wonderful daughters. Like most of us are, I was ill prepared for my 4-month long caregiving journey. We don’t have the right training for this, and don’t receive any training. My caregiving roles included cooking, cleaning and groceries and that stuff was easy. Towards the end however, my roles made me feel almost like a doctor when I had to give her morphine shots. The cancer had reached her bones and was giving her unbearable pain. No matter how hard I tried, I just couldn’t get her pain under control. Watching Sam suffer was the most horrible experience.
The Personal Support Workers (PSW) that came into my home were so wonderful. They would come during the day and help with her care, and there was a PSW on-call until 10 P.M. We also had our daughters and many friends who were nurses who would come to the house to help.
However, it was the nights that I feared. The cancer had affected her thought process and it was as if she would become a different person at night. You never knew what to expect. She would wander in a confused state, speak to her late mother and I would stay awake to keep her from walking out of the home or trying to use the stairs. I put bells on the doors and baby guards on the stairs to protect her. I was in constant fear for her safety.
Her pain would also get worse. I felt like I was always chasing her pain but could never get it under control. I was often alone at night without the proper training and there was nowhere to call to get help. I asked the hospice if there was a number, I could call in palliative care to get advice at night and they said no. Emergency services would only tell me to get her in an ambulance. I needed to just get her through the crisis she was in, in the comfort of her home. If there is one thing I could ask for future caregivers, it is to have a resource they can call at night. I wasn’t sleeping well or eating well at all because I was so focused on taking care of Sam.
The emotional pain I was in, coupled with the physical exhaustion, made it the most terrible time I had ever faced in my life. The frustration would sometimes come out as anger and it wasn’t against her, it was at the situation. I wanted to stay with her every moment to make sure she was safe. Caregiving is 24/7, and you cannot do 24/7. I am so grateful for the PSWs , our friends and beautiful daughters who would stay with her so that I could get out and clear my head.
If I can give some advice, it would be to accept the help when it is offered. You cannot do it alone. You are so out of your comfort zone that you need all the help you can get. What also helped me was to stay organized. I made lists of who I could call, what needed to be done, and everything surrounding Sam’s care.
I fell even more in love with Sam during my caregiving journey. It is easy to lose track of the big picture during the day to day of caregiving. When things get hard remember why you are there. Remember how much you love them; just think of that love. Think of your vows: for better or worse, in sickness and in health. Don’t remember the bad stuff, remember the good.