"Glioblastoma and Medical Assistance in Dying"
Excerpts Shared from the Blog of Authentic You
Editor's Note: Authentic You, a member of the Bridge C-14 community, has graciously shared access to her blog posts. Today we will share Part 1 of 2 of her story - a story of deep love and painful grief following the loss of her beloved partner in life. Part 2 of the blog series from Authentic You will be released soon!
There are 3 kinds of death. One that is unexpected, one that is expected to happen but you don’t know when it will happen, and then there is the kind you know the exact date. I knew the exact date my husband was going to die and for me it was the most traumatic of the three kinds. My husband died by Medical Assistance in Dying (MAiD) as a result of Glioblastoma Brain Cancer. He chose to end his life before the cancer ended it for him. Some people are hearing this for the first time.
My husband was diagnosed with Glioblastoma Brain Cancer in June 2020. The diagnosis came out of nowhere. We had no idea he was walking around with a tumor the size of a peach. He was rushed to emergency surgery after the scan revealed his tumor actually burst inside his brain. I will never forget that day. While he was in a coma recovering in the ICU, he had a massive MCA stroke. In the beginning, I was told several times he may die. He had infection after infection, fevers, and other issues but he held on. He went from coma to minimally conscious to conscious. It was a very long process that took 2.5 months. The doctor told me he would have less than 3 months to live and said that chemo or radiation was not an option for him due to his brain damage from the stroke. So, they told me to bring him home to die. Instead, I brought him home to live.
He required total care as he could not walk, had aphasia and apraxia of speech, was right side paralyzed, incontinent and could not read, write, or be left alone. I was beyond caregiver burn out by the 2nd month trying to navigate a very frustrating health care system. While adopting the motto of “Let Love Lead,” together we did the best we could to make it through the days. It was devastating to have our lives changed in the blink of an eye. I didn’t have much time to process anything being thrusted into caregiving and advocate mode. Our world became incredibly small and isolating. I found a private Personal Support Worker to come in and give me respite a few hours a week so I could shower and run to the pharmacy but many days, weeks I never left the house ...
... Despite the progress, in July 2021, 13 months after diagnosis, they said there was tumor growth and this aligned with some of his new symptoms he was having. They told me to prepare for the end of his life. Glioblastoma is a very aggressive and deadly cancer. My husband had always said if he was diagnosed with a terminal illness he wouldn’t want to suffer or live. We both supported the idea of Medical Assistance in Dying and talked about it in previous years. I knew that I had to ask him what his wishes were even though I wasn’t sure I was ready to hear the answer. I asked him if he wanted to die, he said yeah. I asked him if he wanted to me get the info on MAiD and he said yes. I waited a few days and then asked him again on video. I connected with the Dying with Dignity organization because I knew this wouldn’t be easy with his communication issues. They encouraged me to keep advocating. I learned very quickly that the text book assessments for MAiD do not include a policy or practice when it comes to patients with communication barriers to the extent that my husband had. It took collaboration from speech and language services, more thorough doctor assessments that included revisiting and reassessing, using visuals like picture cards that represented life and death ect. I had very little time in between phone calls, advocating and caring for him to even process that my husband may be dying soon ...
... When he was finally approved, I crumbled. I had anxiety and panic attacks. It felt like we were on death row. No one tells you about that. Everything I read or understood in the media about MAiD made it seem like it was a peaceful easy process from start to finish. This was not my experience. I cried a lot and had to shift through a lot of emotions and hide a lot of emotions leading up to the day while still assuming the role of primary caregiver to him. I had to make my way through the jungle of anticipatory grief that went back and forth from he will no longer suffer and feelings of “oh my God how am I going to live without him?
When we picked the day for MAiD which was 42 days after he was approved, I found myself obsessing over the calendar. I tried to normalize conversations in my house around death with him and began planning his celebration of life while he was still alive so he could see the ways I planned to honor and celebrate his life after he was gone. He also let me know things he would like and not like when it came to the celebration of life. This was rather cathartic but also mind boggling that I was able to do that looking back. As we neared the date, I asked if he was scared of dying, he said he was. I asked if he still wanted to do it and he said he did. I began to understand the emotions of someone with a terminal illness who could be both scared to die and still want to have MAiD. To not do it would mean he would decline, possibly have grand mal seizures, another coma, lose what little ability to talk he has left and more. He was already paralyzed on one side and the other side could go. I was told it’s not a very pretty way to die for Glioblastoma patients or for families to witness. He also didn’t want it made public before hand and I had to respect that. He wanted visitors to stop coming and I felt like I was carrying around a dark secret and it didn’t feel very good, but I knew that people would understand after the fact. I had to respect his wishes and honor his privacy. He said after he was gone, I could tell people when I was ready.
The day of the MAiD I remember feeling like I wanted to throw up while trying to have a normal day where I was present and grounded. I also knew that I had to hide my feelings because my husband is the kind of guy that if he felt he was doing something that was hurting you, he wouldn’t do it and I couldn’t get in the way of his decision. For me the saying I love you so much I would die for you, became I love you so much I will let you die, and that was incredibly hard for me. If you know me, you would know the depth of strength that took me. I deeply, deeply love my husband and he was my world ...
... I thought I would be ready to tell everyone he died by MAiD right after his celebration of life but I wasn’t. I told a few. The grief had cemented me to my bed for weeks and I needed professional help to navigate through the loss of my love. I began to discover that some people think if someone chooses MAiD, it is a less traumatic experience for loved ones, when that isn’t the case at all. It can definitely be very traumatic for loved ones and very stressful for patients. I am struggling immensely since he is gone. The desire for someone’s suffering to end is not an antidote for less grief. If anything, the love of wanting them to be free is a precursor for how painful the grief will be. I tried to cling to the deeper knowing that my husband had very strong opinions on quality of life. It meant everything to him. After 15 months of his quality of life being severely diminished, he is free but I am not. I found a support group through Bridge C-14 that is allowing me to work through the unique experiences of people like myself who have had a loved one die by Medical Assistance in Dying. I also have a therapist, an Occupational Therapist and another grief group. 4 times a week I am in some form of therapy to try and “recover” from this MAiD experience. I’m often asked what would have helped prior and I don’t know the answer. I had a therapist and did everything I could that I thought would help me navigate post death, only to find out nothing made me resilient. I fully supported my husband’s desire to end his life before the cancer ended his, but that does not mean it was any less devastating for me. Getting a diagnosis of Glioblastoma is devastating enough but adding in Medical Assistance in Dying, having to keep it secret and then having his last day and the experience be anything but beautiful is a lot for a person.
Our circumstances were unique. I hope if anything, our story can facilitate a conversation with the policy makers to revisit practices and create a more inclusive and seamless system. Most people can self advocate for MAiD. My husband depended on me to advocate for him. I hope in the future it will become easier for people with communication issues to be assessed and approved instead of this systematic panic of “oh no, how do we handle this one?” I was initially told my husband could not even be assessed and I pushed for it and said you cannot just dismiss him because of his disabilities. Again, this was incredibly difficult to advocate for my husband to die and I hope that in some way the heavy burden that this role I had to carry right to the end will change systematically for caregivers in the future. I don’t know how; I just know that my experience was much more difficult as a result of having to be an advocate and not just a wife like I really needed ...
... There are many things I wasn’t able to process throughout this experience being in the role of a caregiver/advocate. The mental and emotional toll it has taken on me has been extensive; something very few understand or ever will.