June 9, 2023
6 Minutes

Collective Caregiving: Jenna’s Story

Maya Devincenzi Dil

My name is Jenna. In 2020, my mum was diagnosed with pancreatic cancer.

She and her husband, Erik, lived in the Spanish mountains in a little Dutch expat community. My siblings and I take after her as well. We’re all globetrotters living all over the world.

When she got sick, no family was living close by. We weren’t even in the same country.

So I did what I had to do. Or, we did. My husband Andy and I put our lives in Canada on hold and moved to Spain to become full-time caregivers. We didn’t know how long we’d be staying, nor how big our role would be – only that we wanted to help.

It’s funny, we didn’t even see ourselves as palliative caregivers at the time. I just thought of myself as looking after someone I love. But in retrospect, that’s what it was. We did the cooking, cleaning, staying on top of medications, driving to appointments, keeping the family informed… everything. We supported her as she came to terms with her illness, and comforted the family and friends who came to visit. We talked to mom’s nurses, read everything we could about her condition, learned which medications she needed and how to administer them, and researched her treatment options. It was exhausting and emotionally draining, and there was always more to do.

Luckily, I was never alone. Mom’s community was close knit and offered to help out when they could. They’d encourage us to go out for dinner alone, or go to the beach while they stayed with mom for the evening. Once, my brother flew out and ordered us to go on a road trip, so we could have a proper break. Even our family abroad were amazing. My sister sent care packages, and there was always someone phoning to check-in on us. Of course, my husband was my rock through it all. We were in the same boat, facing the same challenges together. And boy, did we face a lot of challenges.

We were constantly tired, stressed, and emotional. When my stepdad’s health started to decline, we felt like life was playing a cruel joke. He was frail, and his memory was shaky, so we were kind of caring for him too. He was later diagnosed with Alzheimer’s.

As for mom? She was amazing. She knew exactly what she wanted, what kind of care, who she wanted close by and who she wanted kept at arm’s length. She made it easy for us. Sometimes, almost too easy. Like when she wouldn’t let on that she was in pain because she didn’t want to burden us. She was also scared of going to the hospital. I remember her crying each time we’d have to take her in, worried it would be her last.

The language barrier didn’t help either. We struggled to communicate with the doctors in Spanish. But the oncologist was great and arranged for a translator to join our appointments.

There were so many ups and downs as a caregiver. But through them, I learned a lot.

I learned to step up, and when to step back. Like when mom decided to stop chemo and switch to home care. I wished she’d change her mind. But she knew what she wanted, so I stepped back. I could see how much that decision meant to her, to choose to spend her time in the home she loved, surrounded by the people she loved even more.

I learned to ask for help – and accept it. The Dutch community was so willing to chip in with responsibilities – picking up groceries, looking after mom for an afternoon, or inviting my stepdad out for a night. For Erik to be able to socialise and carry on going to his painting club… those were things we couldn’t help him with ourselves, so it meant a lot. Our family was always there to help as well, in any way they could. Letting us go on that road trip, giving me space to pour my heart out over the phone. I was glad I could ask for their support.

I learned to make my wellbeing a priority. It feels kind of ironic as a caregiver, but it’s really, really important. It doesn’t have to be anything crazy- I liked going for walks in the mornings and going for drives with Andy sometimes. It helped me recharge so I could be there for mom.

I learned to appreciate the little moments. And there were so many of them. Every evening at 5pm, mom would insist on doing happy hour. It became our little routine, where we’d talk, share some laughs and just enjoy each other’s company. Christmas was extra special that year. The whole family came to Spain and we spent all day preparing a feast on Christmas Eve. That same evening my brother shaved mom’s head. The chemo meant she didn’t have much hair left anyway, but that didn’t make it any easier. She was so nervous for everyone to see her. I wrapped her head in her favourite silky pink scarf, and she put on matching lipstick and a brave face. We walked downstairs arm in arm to the sweetest surprise. Someone had the brilliant idea to raid mom’s scarf drawer, and everyone was wearing turbans like her – even the little children! Mom was so happy she cried. It’s memories like these that I wouldn’t trade for anything.

Before we knew it, it had been four months. Mom had been stable for a while. She wasn’t getting better, but she wasn’t getting worse either. So Andy and I went home to start our lives again.

We never expected to be back so soon. In just a couple of weeks things had gone downhill. The transfer of caregiving responsibilities hadn’t worked out well. Mom’s friend had done her best, but the medication dosage was way off, and a lot of other mistakes happened. The inconsistencies in her care and the lack of information meant that the doctors couldn’t help mom as much as they wanted to. That’s still hard to think about.

In a way though, the timing was right. It was just before covid and before the travel restrictions came in. My siblings and I all flew out to be with her at the end and were lucky to have been able to do that. In her final days, Mom was mostly sleeping. We stayed at her bedside, holding her hands, talking to her, and playing her favourite old CDs. James Taylor, Harry Belafonte, John Denver…

After she passed, we tried to pick up our lives. I put my grief on the back-burner, but it seeps through sometimes. Losing someone when you’ve been their caregiver is different. Sometimes, I still wonder what could have been different. But mom wouldn’t want me to do that. So I look at it like this: I’m glad I was there to care for her when she needed me the most.

My kitchen clock is permanently set to 5pm, happy hour, and I smile every time I see it.

Written by Maya Devincenzi Dil

Leave a Reply

Your email address will not be published. Required fields are marked *