Spotlight on Sara

Sara Shearkhani was a caregiver to her husband after he was diagnosed with a brain tumour in 2012. She didn’t immediately self-identify as a caregiver, and once she recognized her role, she shared her experience in a widely-read Globe and Mail column. This led to a groundswell of public dialogue about family caregivers, and for Sara, it led to many new connections with caregivers from far and wide.

Her husband came through all the treatment and went back to living a life without a health crisis. For Sara, this meant she experienced a brief period of stability. However, in 2018, his cancer returned, and Sara found herself back in a caregiving role. Sara spoke to The Change Foundation about how being a caregiver a second time feels very different because of what she learned during her first time around.

By Pierre Lachaine, Manager, Strategic Communications

Who do you care for?

My husband, but don’t tell him I’m caring for him. He doesn’t believe that I’m his caregiver, and he’s kind of right. The experience this second time around is very different – it’s more emotional care, translation and research. Just being there for him.

The first time, I was involved more with care coordination and navigation. Back then, my husband was in complete denial, so I felt it was my responsibility to read and learn about his condition. That just ended up worrying me – finding out about life expectancy, things like that – but somebody had to do it. I also did a lot of advocacy on his behalf. I would diligently read all the notes provided by the healthcare professionals and if I found contradictions, for example, I would ask a lot of questions. I made sure he took his medications.

All those things combined made my journey really hard because, I felt, it led to his healthcare team hating me. 

Do you remember the first time you identified as a caregiver?

After I wrote down my story, which really helped me process everything that was going on, I did some research and I said “aha! I’m a caregiver!” But it’s funny because in my first language, we don’t have a word for family caregiver. I basically had to listen to others to define what a caregiver is and does. I realized I’d been a caregiver for two years at that point without even knowing.

How did that change your experience?

It gave me an identity. And it opened other doors for me. When you have the word for it, you can research it, and find out where you can get help.

Before I knew what a caregiver was, I was on my own. But then I realized that I was not alone and that as a caregiver I had rights, and I started standing up for my own needs, and not letting my husband’s needs to always come first.  

This created some tension because I started to realize I needed to carve out time to look after myself. During his treatment, my husband was the centre of attention. It was his journey and his journey alone, and the tension arose because I realized that I’m part of it as well. And it took me awhile to find a balance and to come to the realization that it was our journey.

Where did you turn for support?

A common consequence of caregiving is mental health issues. For me, it was depression, but for others it could be anxiety or stress or something completely different. The issue is that we tend to see caregiving in isolation. But we have other things in our lives. I was already depressed before my husband got sick for the first time. I had just arrived in this country, and had trouble integrating. I didn’t like my studies or my job. I was dealing with a lot of other things and I was depressed.

After realizing that I was a caregiver, I went to my family physician and he told me I could get support for depression, which was great – but there was a wait list! It took some time to get in, but once I was there it was really helpful, and it wasn’t specifically about caregiving which, again, speaks to how caregiving doesn’t happen in isolation. 

How were things different when your husband’s cancer returned last year?

I was in a very different place. I was kind of happy with where I was. I was back in school. I had started my PhD and I had a great supervisor. I had friends – the first time around I was very lonely. I had a network of support. I just wasn’t thinking about my husband’s cancer, and I was happy. I’d also planned everything in advance, in case this happened again. For example, I decided to be a part-time student because I didn’t want to have to drop out of school this time if the cancer returned.

Things were going great, and I’d accomplished some things in my studies and my life that were long overdue. Then my husband turned to me one day out of the blue, and said “the cancer is back.” I just couldn’t believe it. The only thing I was able to think was ‘but I am finally happy.’

But I convinced myself this time was going to be different.

I went back to my family physician and I told him what was happening, and I told him to check on me if he didn’t hear from me.

I told everyone. I told my supervisor. I told my family and his family. Last time we didn’t tell everyone what was happening and that was really hard.   

I thought I was handling it really well. And so was he. I didn’t need to worry so much about him taking care of himself, and I gave him much more autonomy than last time. We had the help and support of others who reminded me to take everything one day at a time, and that the best thing I could do for him was to just be there for him.  

The only tension at that point was that we were both dealing with it in different ways.

Then we found out that the tumour might still be growing.  I lost it. The depression returned. I didn’t know how to handle it. I withdrew. I stopped asking for help.

I regret that. Even though it turns out the tumour is not growing for now, I still haven’t been able to pull myself out of it.

In 2015, you partnered with The Change Foundation on a report, Shedding New Light: One Caregiver’s Journey. In that report, you mention the distinct role of family caregiving. How is your role different this time than last time?

I am an educated caregiver, and I have been able to reach a balance between my role as a caregiver and my role as a wife. The last time I wanted to do everything myself. I was the decision maker and didn’t want to let go of that. Now, I’m there for him as a wife.

I’m also different in the way that I ask for help. Last time I didn’t. I have a network of support in place, which is key.

When you look back on who you were in 2012, when you were first going through this. What would you like to say to yourself?

Care for yourself. Don’t delay your own dental appointments, your own doctors appointments. Caregiving has a big impact on mental health, and it’s really hard to admit that you’re depressed.

There are days where you don’t have any direct caregiving tasks, just your own appointments or lunch with a friend, but you’re too depressed to go. Try not to do that, which I need reminding of this time around too. You need to stop comparing your situation to the situation of the person you’re caring for. He has cancer – he has it worse. You still deserve to take care of yourself.

In 2018, The Change Foundation launched an annual survey to better understand the experience of family caregivers in Ontario. The results are summarized in our Spotlight on Ontario’s Caregivers report.

WHAT’S BEING SAID

Created in partnership with our #ChaningCARE teams, register to complete this 3-part eLearning module to learn through tips and examples how as healthcare providers you can help improve the experience of family caregivers. bit.ly/2U1Mlcs pic.twitter.com/lKzWKDPM4A