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how i care for glioblastoma: 'jeannie was encased with love'
9 minute read
david finch’s wife jeannie passed away from glioblastoma 26 months after she was diagnosed.
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according to the brain tumour foundation of canada, glioblastoma or gbm is an aggressive type of malignant brain tumour that affects adults between the ages of 45 to 75, and is responsible for about three per cent of cancer cases in children. symptoms include headaches, memory decline, personality changes, and for some people, it could also manifest as seizures. due to the aggressive nature of the disease and the fact that many drugs can’t treat the tumour without impacting the rest of the brain, conventional treatment options, which include surgery, chemotherapy and radiation, may not be effective.
david finch’s wife jeannie passed away from glioblastoma 26 months after she was diagnosed. in an interview with healthing, finch opens up about the emotional aspects of caregiving and how he got through the days when he felt overwhelmed and on the brink of burnout. he also offers practical advice to other male caregivers who are supporting their partner through a terminal illness and how unsolicited advice can be more hurtful than helpful.
this interview has been edited for length and clarity.
how did you support jeannie?
i set my career aside for 26 months, from the time of her diagnosis to her death. gbm affects more men than women, so i was in a unique position because i didn’t know any men who had been caregivers to their wives. we knew through jeannie’s experience with breast cancer that there would be a lot of appointments, and i accompanied her to all those sessions. several days prior to those appointments, i would help jeannie prepare a list of questions — as the disease progressed, she found it more difficult to think straight.
once we’d go to speak to the doctor, jeannie had a list of questions to ask her oncologist, and when needed, i stepped in as her patient advocate. i know that when you are in an emotional situation, regardless of how intelligent you think you are, you miss about 80 per cent of the content. we recorded each session, which was helpful the few times our notes didn’t match. i also cooked for jeannie, and one day a week, i drove to her chemo appointments. she chose four other friends who could drive her and she selected them based on her idea of whether they would give her the space she needed on days when she didn’t want to engage in a conversation. they wisely learned that they had to be on time, and that if jeannie wasn’t chatty in the car, it was their cue to respect her need for a silent ride.
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what challenges did you face and how did you navigate those situations?
gbm is a death sentence, and although there are outliers, they are typically not living a good life — they experience heart attacks and other side effects. to live a long time with a debilitating disease is not a win. due to the fact that gbm is a death sentence and that the trajectory is unknown, we sought couples and individual counselling, and we also received counselling support through the hospital. we had a homecare nurse early on, and she encouraged me to get all the supplies that we were going to need, like a walker, a hospital bed, a wheelchair.
i ordered them and kept them in the garage. there were some people in our life who said that because i was making those plans and executing on them, that i was forcing the issue of jeannie’s death. i wasn’t. our daughter annie moved back in with us during the pandemic after she lost her job, and she and i took turns taking care of jeannie. people would offer to do our grocery shopping for us, but it wasn’t what we needed. it was a nice break for me to jump on my bike and throw on my backpack to go to the grocery store to get what we needed to get that day.
that sounds completely overwhelming.
about three months before the end, i came to a point where i said to myself, ‘i can’t do this anymore.’ i didn’t know how i was going to get through it, and i just kind of collapsed into the moment. as a caregiver, you feel guilty for taking care of yourself, but if you don’t do that, you feel angry at the person you’re taking care of or you feel resentful that this person is taking so much of your energy. if you have to choose about feeling a little bit guilty or resentful, just know that you can live with guilt. i had all the systems in place to take care of jeannie, but i would still balk at the idea of going on a bike ride or walking by the river.
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were you able to find ways to take care of yourself?
as a caregiver, you want to do everything for the person you love and sometimes, that means that you have to sacrifice certain things. but you can’t hold your breath for 26 months, so i had to read every day and take care of myself any way i could. our daughter annie would go birding in the morning, and i would do what i needed to do for myself in the afternoons.
in those early days, who did you turn to for support?
that first month was just triage. jeannie had surgery the week after a large tumour was discovered on her brain. we went over her will and all her life documents, and we had a minister write her funeral. we were in crisis management. two weeks after surgery, we got the diagnosis back — gbm was something none of us expected. during this time, we turned to the medical team and our own resources. a month after her surgery, jeannie went on a 10-day holiday with her sisters. that’s when i realized that i am going to lose my wife. when she returned, we needed our quiet time — to just lay in the hammock that summer. we shut down our house and put up a ‘do not disturb’ sign on our door. we asked everyone to stay away, and jeannie and i started our blogs to keep everyone informed.
and then you began allowing visitors?
yes, but some individuals were inappropriate with their length of visits. one sunday, we had three groups of people, and while i asked them not to stay for more than an hour, they stayed for 10 hours. when people visit a patient who has terminal cancer, in that first hour, they’re still in shock that the person is going to die, the second hour they may spend listening to the patient talk about what it means to them, and in the third hour, they want to obsess about their own issues. this is why when jeannie was diagnosed with gbm, we had a strict ‘no phone calls, no emails, no texts and no visitors’ policy. in the fall of that year, every couple of months, we invited our close circle of friends to join us at a local pub. some nights, we had 50 people there, and jeannie would stand the whole night and talk to everyone who came to see her. we kept the pub nights going for more than a year or until covid hit.
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has caregiving impacted you financially?
gbm is treated with surgery, and with chemo and radiation. in some provinces, the chemo is not covered, but fortunately, in alberta, it is. on the medical side, almost everything was covered for jeannie. i paused work for the most part to support jeannie through treatment and because we wanted to live our life together to the fullest — we had that wake-up call 20 years earlier, when jeannie was diagnosed with breast cancer.
“jeannie died at home, where she wanted to be. we had windows open, so she could see and hear the birds outside, and in her final days, jeannie was encased in love,” says her husband, david.
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she had long-term disability insurance through her work and that lasted for much of the 26 months, and i had some writing projects on the go i was working on. we always spent less money than we made, and we were always putting money away in investments. jeannie and i were both missionary kids and grew up poor, so we were smart about how we managed our earnings and we paid off our house 20 years ago. we didn’t have to dip into our savings during the illness and the health-care aide who supported us for five months was paid for by the alberta government. at the very end, when jeannie couldn’t get out of bed anymore, we had overnight nursing, which was also covered.
what was helpful (or unhelpful) in your caregiving experience?
the most helpful thing for me was to find people who have been through a similar experience. i didn’t find any men, but i made friends with women whose husbands had died from gbm, including a woman who lives across the street. we would just go for a walk and talk about what i was going through. reading about end-of-life ideas and books (being mortal was a particular favourite because it provides many examples of people making choices between a longer life or a quality of life). on the flip side, i would say that what was least helpful to me as a caregiver was unsolicited advice — one individual suggested that jeannie and i go to china and pay $40,000 to someone who could completely eradicate this disease. that statement really showed the awkwardness of their own fears.
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what’s your advice to other male caregivers?
get a health captain. as a caregiver, you need someone to help you manage everything. right from the beginning, figure out ways to take breaks and do self-care. seek out one of the counselling men’s support groups and even better, find a man who has been through something similar. if you’re so inclined, read — there are lots of great books out there.
how did you manage the grief?
there is nothing you can do before the person dies that can prepare you for the grief you experience after the person dies. several times, i considered shutting myself down emotionally to my own pain, thinking that i could deal with it after jeannie dies, and then i realized that i have my grandson, my daughter and other members of my family who are going to need me when jeannie dies. i wanted to be present to the things that hurt me, and i expressed what i was feeling in writing and art. it was my way of acknowledging those emotions and moving on.
tell us something else that you have learned from being a caregiver.
caregiving is a marathon and not a sprint. it’s going to take as long as it takes and you have to find joys in every day. it’s an emotional roller-coaster and the emotions will take you everywhere. after the person dies, everybody walks away because life goes on. and unless they’ve been through a similar experience, most people don’t realize that the caregiver needs support after their loved one dies. the caregiver experience is like any other significant life transition — it changes you and there is no going back. nothing can prepare you for it, but it’s more precious than anything you can imagine.
what do you remember most about jeannie’s final days?
jeannie slipped from us slowly and gently and this kind of dying process is similar to 100 little deaths. i helped our grandson john process her illness and manage grief before and after her death. because death is scary, we medicalize it and stick it in institutions, but jeannie died at home, where she wanted to be. we had windows open, so she could see and hear the birds outside, and in her final days, jeannie was encased in love.
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maja begovic is a toronto-based writer.
do you have a caregiving story to tell? send a note to info@healthing.ca and we’ll be in touch.
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