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how i care for pancreatic cancer: 'we cherished the time we were given'
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"my mom was a single mom, and she did everything for me and my sister," kim (left) says about her mother (right). supplied
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at the end of their life, people usually require round-the-clock care, and those who choose to die at home overwhelmingly rely on the support of their loved ones, according to a report by the canadian cancer society. while some patients receive ongoing palliative care at home, not everyone is supported in the same way — in fact, there is evidence that suggests that those who live in rural areas or disadvantaged neighbourhoods receive less services and have poorer outcomes. when compared to an in-patient setting, home-based palliative care has been shown to relieve pain and other symptoms for patients, improve their physical health and well-being, and extend their life.
kim (her last name has been withheld for privacy reasons) is an advocate for home-based palliative care. her mom, who passed away from pancreatic cancer, lived well past the initial prognosis, and her doctor believes that palliative therapy and the care she received at home while being surrounded by family, made a difference. in an interview with healthing, kim, who was part of the sandwich generation, revealed how she made it work and what she wished she had done differently.
this interview has been edited for length and clarity.
how did your caregiving journey begin?
in the fall of 2021, my mom started experiencing stomach issues. her family doctor ordered a ct scan, and after a couple of days, when those results came in, the family doctor called and told my mom to go to the er right away. on our way to the hospital, we read the electronic copy of the ct report, began googling, and very quickly, we knew that this was serious. at the hospital, my mom was diagnosed with stage iv pancreatic cancer. this is pretty typical for pancreatic cancer. there are no signs or symptoms until it’s quite advanced, and in fact, it’s often referred to as “the silent killer.” my mom’s prognosis was grim — she was given three months to live. we met with an oncologist who offered her palliative chemotherapy with the goal of relieving some of the symptoms and extending her life.
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why did you decide on home-based palliative care?
my mom was a single mom, and she did everything for me and my sister. there was no way that i was going to let her be alone in the last few months of her life, so she moved in with me and my daughter. i think that sometimes, people are afraid, or they worry that they’re not going to have the resources or the support to care for a loved one at home, but i was determined to find whatever resources i needed in order to care for my mom at home. having been through the pandemic and watching families be cut off from loved ones throughout lockdowns, we didn’t want to let that happen — we were going to do whatever we had to do to keep her at home with us.
who did you turn to for support in those early days?
my mom’s diagnosis came as a real shock. but right away, we were connected with the palliative and with the oncology teams at the hospital and those two teams came together in such a beautiful way. they told us that this was going to be very difficult, but that they were going to support us every step of the way. it made a big difference for our family.
your mom ended up living with pancreatic cancer well past the initial prognosis.
my mom lived with pancreatic cancer for 11 months. the palliative chemotherapy she received clearly made a difference and so did the care she received at home. her doctor believes that she lived longer than expected because of her outlook on life, our collective attitude, and because she was surrounded by family.
what made caregiving at home more manageable for you?
homecare was provided and covered by the provincial government — we had personal support workers, occupational therapists, and nursing care on an ongoing basis — and as my mom became more ill, those support services increased. the other thing that was so important and why i’ve become such an advocate of home-based palliative care is that i was still able to be a mom to my kids, i was able to help my daughter with homework, and i was surrounded by my neighbours and friends who also supported us.
kim recalls seeing a tiny flower peeking through the concrete while on a walk with her mother, reminding her that you can persist through the tough times. getty
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did your mom have to go to the hospital to receive some of the support services?
no. everything was done at home — even her palliative doctor came to our house. her medication was shipped through a specialized pharmacy as well as the iv and the supplies needed, for the most part it wasn’t something we had to pay for, it was all available to us. i don’t know that everyone has those options, but everyone should because the outcomes are so different. towards the end of my mom’s illness, we did supplement a little bit with nursing care, but it was a small fraction of her total care.
that said, i worry about equity and access to care and services. we are a white, middle-class family living in downtown toronto, and we had excellent care. i sometimes wonder if i would have had the same experience if my skin colour was different, if i was in a different location, or if i had less education or a lower socio-economic status? i hope and wish that everyone has the same access to services because it’s what makes the biggest difference for families.
did you ever feel the financial impact of caregiving?
caring for my mom impacted me financially in other ways. it impacted my income and even if i were to have utilized the compassionate care benefits, they are not enough to make ends meet for a lot of families. i also learned that as soon as the person dies, the caregiver benefits provided by the federal government end the next day — i don’t know how caregivers can go back to work right away, i was not able to do that. the year of caring for my mom took such a toll on me. during this time, i didn’t have a full income. the cost of living and caring for an additional person in my home also hit me financially. towards the end, the stress levels prevented me from cooking and so we ordered in a lot. my mom also wanted to go on a trip, and while i didn’t have money for that, we went anyway because that’s what you do when someone is dying. it becomes more important.
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what were your biggest challenges?
we utilized a volunteer service through a hospital palliative care program, and we had a volunteer who came to spend time with my mom for about three hours a week. what became a challenge is that i wasn’t able to leave her by herself, so i didn’t have respite. it’s so important for caregivers to have some relief, to take time for themselves. if i had more money, i would have been able to hire someone to help with respite. while the person who is going through the illness has options in terms of support programs, there’s not a lot of support for caregivers. as part of the sandwich generation, i was working, caring for my daughter and my mom.
as a caregiver, what was helpful to you?
the palliative care services were very helpful as well as the hospital palliative team. i could call their clinic and have a doctor answer my questions 24/7. this was especially helpful when things became more challenging for my mom. the volunteer service was also wonderful. but through it all, i struggled with the fact that my mom was dying, that i was losing my best friend and my main support. that role still hasn’t been replaced in my life and never will be. i’m still healing from everything. i lost my mom, and the caregiving experience has left me feeling empty — physically and emotionally. i recently joined a grief support group to help me with healing and recovery.
is there something you wish you had done differently?
my mom, my sister and i were very intentional. we cherished the time we were given, and we made beautiful memories together. there was nothing left unsaid, there are no regrets.
what advice do you have for other caregivers?
i would have loved to have been more intentional about taking more time for myself while caring for my mom. as a caregiver, it’s important to put your oxygen mask on first. the other thing i would recommend is that caregivers find out what support services are available to their loved one — this could make caregiving at home more manageable.
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the other thing is that when you’re caring for someone who is dying, there is a lot about death that comes up. it’s important that the person you’re caring for continues to live each day to the fullest. and that you as a caregiver do the same thing. you can laugh, watch a funny movie together, have friends over to play a game and live in the midst of it all. right up until the end, my mom and i would walk outside. she would bring her oxygen tank and we would look at the moon and the stars in the evening and we would sometimes bring my young niece along with us. she would tell her, “look at that star — that’s the star nana is going to watch you from.” she would tell my daughter, “if you see a cardinal, it is me.”
a month before she died, we went on a road trip to her hometown in huntsville, ontario, and a week before her passing, at her request, we ordered chicken nuggets, a cheeseburger, milkshake and a sundae from mcdonald’s, and my mom and my daughter enjoyed a feast in our living room. four days before she passed away, we watched the sunset from my car.
i’ll never forget the tiny flower we saw on one of our walks together — it was peeking through the concrete, and it struck me that you can persist through the tough times. we didn’t forget to live, and we truly found beauty in every moment.
maja begovic is a toronto-based writer.
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