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Meet JenG...

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There is a theory that May is from the latin word mators meaning "elders" and so we celebrate our moms in May. With that in mind, read JenG 's story of caring for her mom until her passing this past December.

Hi there. My name is Jen. I was a caregiver for my mom, who was diagnosed with stage IV lung cancer at the ripe old age of 90.

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Surprising mom for her 90th birthday

She beat all the odds and lived another three years. The plan had been to care for her at home for as long as we could and then she’d go into hospice. As it turned out, we cared for her until the very end.  Mom lived in Montreal and one brother was five minutes away. I live outside of Regina and my other brother lives in Edmonton. We learned a lot over those years, and here’s a sampling.

Just because they say it, doesn’t make it true.

When Mom was first diagnosed, she had lost weight, she was experiencing some pain in her shoulder, and had fluid around her lungs. We all thought that she would die in six months. She got immunotherapy for a year or so and then moved on to a light chemo dose. 

Two and a half years later, all treatment was stopped because the cancer had spread to her brain. Her oncologist said she was an outlier: he had a 7-year-old patient who was not as well. When we asked him how long Mom had to live, he said he didn’t think she had, “even six months.” She died six months and three weeks later. She refused to be defined by others’ timelines.

Everything I read about how lung cancer progresses and what the palliative care team told us would happen led us to expect Mom to need oxygen due to trouble breathing, pain severe enough for opioid drugs, and a spread to the brain or the bones. It did spread to the brain, but she never needed oxygen and she only used strong drugs in the last week of her life. 

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Mom and I at a Rider game

Self care isn’t a buzz word.

I knew from all the reading I had done that self care was important. I heard it again and again: in podcasts, on the Cancer Connection forum, in books, online. It was everywhere; I just didn’t apply it to myself.  

Oh sure, I got out and walked every day. I learned about meditation and did that most every day. I read about Buddhism and tried to put those tenets into practice. I listened to podcasts to help me sleep. I listened to podcasts to distract me from worrying about Mom. But I also structured my life to care for her. 

I flew out to Montreal, once a month in between working sessions, to relieve my brother and take her to her appointments. Later when treatment stopped, I went out more often. My wife looked after our home and yard and pets while I looked after Mom. We chose not to have a garden last year. We didn’t go anywhere for a holiday except one weekend away in December to visit friends. I remember my wife saying how good it was to hear me laugh again.

Mom was very independent and resisted help of any kind. She was stubborn like that all her life. I mean, I learned from the best! The first time a care aide came to help Mom in the shower, I understood the power in respite. It was only for 30 minutes, but for those 30 minutes, Mom was someone else’s responsibility and that was a huge relief for me.

I’m currently dealing with caregiver burnout. It started before Mom died. I would wish for her death so I could get some rest. And I’m learning that for one thing, that’s a normal response; and for another, it’s a sign that I needed a break. During the last months of her life, I would be in Montreal for two weeks and then home for two, rinse and repeat. I worked when I was home, thinking it would distract me from brooding about Mom all day. And when I came home after Mom died, I thought the two-month break before work began again would be enough time to get all my emotional ducks in a row. I lasted three weeks at work, only working half my normal hours, before taking sick leave. I was plain worn out.

Your family might not be ready for this.

I wanted to give Mom a good death. I wanted to honour the strength and independence she had all her life by making sure her last years/months/days were full of dignity and respect and love. I’m not sure my brothers felt the same way. I pretty much bulldozed my ideas through them and insisted we do things my way.

One brother came along for the entire ride and the other dropped out after a family dispute. I thought he wasn’t a good enough caregiver. Maybe he just wasn’t the type of person who is good at being a caregiver. Not all of us are. There are lots of hurt feelings and residual anger. I’m not sure how it will all play out.

While Mom was offered a lot of support and resources through the palliative care teams, we were not. We focused on Mom’s care and we talked a lot as a family about what would be best for her. We never talked about what each of us needed or wanted or was interested in doing as far as her end-of-life care. How were we to know if we could do this if we had never done it before? Did we give each other the freedom to say I’m not sure I can?

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Mom at sunrise Dec 22 2021

Now what?

I don’t have any answers and I can’t wrap any of it up with a bow. It was the most difficult experience of my life. I did things for my mom that I never thought I would do. I don’t regret looking after her; I still think it was the right decision. But I had no idea the toll it would take on me or my family. 

The day before she died, it was just the two of us in her apartment. She was in her hospital bed, not able to eat or drink, drugged up to keep her pain-free, anxiety-free, and hallucination-free. She wasn’t talking and had had final FaceTime and in-person goodbyes earlier in the day. 

Her room was filled with flowers from loved ones, photos of family, soft lighting, and her favourite Christmas music played softly in the background. I moistened her lips and the inside of her mouth with a glycerin swab. She took a breath and struggled to speak. “Thank you.”

You’re welcome Mom. I love you. I miss you.

Thank you for sharing your mom with us and the wisdom you have gained along the way. It sounds like she had a life well lived and you honoured her throughout, while in treatment, and continue to do so.  




Comments

JenG‍ what an amazing account on your role as a caregiver. It brought tears to my eyes. One thing that resonated with me is that all people with a stake in caregiving may not see things the same way or be able to do what they believe is expected of them. It highlighted for me the importance of communication and perhaps some role definition so that everyone is comfortable. Your mom was lucky to have you by her side and advocating on her behalf.

I hope you continue to heal and that in time the grief will be replaced with all your beautiful memories of your mom.
  • Posted Fri 06 May 2022 08:49 PM EDT
JenG‍ This is a stunning post, and stunning story. Thank you for your eloquence and honesty, especially about the caregiver burnout. How are things now?
Love, love this: "I wanted to honour the strength and independence she had all her life by making sure her last years/months/days were full of dignity and respect and love.". Beautiful ❤️
  • Posted Fri 06 May 2022 01:34 AM EDT
It's a journey for sure! Things are looking up. I'm seeing a counsellor, the weather has improved so I can get outside more often, and I feel less 'of all the feels' all the time. That said, I still get overwhelmed and stressed when there's too much happening in my life. So I'm taking it slowly. Thanks for your kind words. :)
  • Posted Fri 06 May 2022 06:44 PM EDT
Caregiver burnout is real. Glad to hear you are recovering well.

I appreciated your frankness about death and family issues. It can be daunting to navigate.

Angus
  • Posted Wed 04 May 2022 04:31 AM EDT
JenG
Thank you for sharing the moments of your Mom's life and yours as a kind and loving caregiver.
It is most definitely time for your break as that is a healthy key to grieving and adjustment.
It was affirming to meet you!!
law1
  • Posted Tue 03 May 2022 10:50 PM EDT
JenG‍ Thank you for sharing your mom with us here. Such a real story of love, honesty and strength.

Beautiful photos of you and your mom. She must have been so happy and comforted to have you by her side ensuring she would have a good death and she did.

Helping others has helped me and we are so glad to have you with us to share your wisdom and experiences with us too.

Healing hugs❤️‍🩹

  • Posted Tue 03 May 2022 10:29 PM EDT

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