Support, Community for Family Members Who Become Caregivers

November 29, 2021 Swedish Health Team

[4 MIN READ]

In this article:

  • Swedish Cancer Institute caregivers’ support group provides community and connection to loved ones supporting individuals with cancer.

  • A support group can offer valuable insight and guidance to those experiencing a shared story – and offer ways to cope while also validating emotions.

  • We can better support caregivers by being aware of what we say and offering help that’s truly helpful.

When Heather Grdinic’s husband was diagnosed with adult acute myeloid leukemia (AML), she felt insurmountable pressure to figure everything out.  

She wanted to support her husband as he received treatment as an inpatient at Swedish all while caring for her young son at home, who was recently diagnosed with cerebral palsy. These new responsibilities came on top of her already established, daily tasks like managing her own job and running a household – without a partner to help lighten the load.

Fortunately, one of the many people Heather met the day her husband received his diagnosis was Sylvia Farias,  a licensed oncology social worker at Swedish Cancer Institute. Sylvia has clear insights on the pressure family caregivers face, shaped by more than 20 years leading the caregiver support group at Swedish Cancer Institute.

“Loved ones operate in the shadows,” Sylvia says. “As healthcare providers, we tend to focus most of our attention on the patient receiving cancer treatment. Their loved ones – the ones who are providing the day-to-day care and support to the patient – are often overlooked.”

Sylvia continues. “They look ‘fine’ or say they are ‘fine,’ but loved ones often struggle in silence. It’s common for them to think that they aren’t doing ‘caregiving’ right or doing enough. They might even worry about something happening to their loved one on their watch.

One way Sylvia is working to support loved ones is by facilitating, via Zoom, the weekly Caregiver Support Group at Swedish Cancer Institute.  

Providing community for caregivers

Sylvia knows just how hard it can be for caregivers to acknowledge the challenges inherent in their role.

“People will say that they don’t need a group or to talk about their experience, but I tell them it’s not about needing something or how you’re coping with your situation,” she explains. “It’s about finding a community where you can talk about anything. It’s the opportunity to be in a very safe space where you can discuss many things, such as feelings that might be difficult to express to friends or family, like anger, sadness or guilt.”

That community is something Heather saw from the get-go.

“I remember attending my first caregiver group and just crying the entire time,” shares Heather. “I was at the beginning of this diagnosis and, from the very first session I went to I realized that this group was the community I needed.”

“Watching a loved one go through a cancer diagnosis and treatment is so big and overwhelming. There’s this feeling of aloneness, made even more isolating with the pandemic. The group connected me with people that were living the experience I was just starting out on and getting through it. That, by itself, was so encouraging,” she adds.

Heather continued attending group meetings. There, she was able to listen to and learn from others who had been through similar situations. She was also able to open up and share how she was feeling. The most valuable aspect of the group, though, was getting advice and insight from people who had lived what she was dealing with.

“As my husband started to get better, I started to fall apart,” Heather admits. “I spent so much energy keeping things going that it became very difficult for me to keep up with work and move forward in the way that I normally would.”

It was when Heather got honest about her struggles in the group that she received some very helpful advice.

“I asked the group if something was wrong with me. One member shared a story about how they took a leave of absence from work when their partner went into remission the first time,” she recalls. “I never thought that time off was something that I would need. But, when I heard that story, I realized that what I was experiencing was normal and it was something others had experienced, too. There was a legitimate reason why my brain was so overwhelmed and under-functioning.”

It was that sharing that inspired Heather to take a three-month leave of absence from her job. During that time, she was able to focus on herself: She made time to exercise and work on her mental health.

“I was a different person coming out of that leave,” Heather states.

Supporting family members who are caregivers 

Many times, when someone is supporting a loved one during cancer treatment, their own friends and family want to do whatever they can to make life a little easier and a little less stressful.

However, the best intentions can sometimes add more stress to a caregiver’s plate.

“Loved ones don’t have time to take a bubble bath, read a book or do ‘self-care,’” Sylvia states. “They can barely keep their head above water. What I’ve learned in the 21 plus years I’ve been doing this support group is that caregivers need to stay hydrated.

“When it comes to supporting the caregivers, you can acknowledge they are doing their best trying to meet their own needs. If you want to offer a suggestion, remind them to stay hydrated, or better yet, drop off bottles of water to their home so they can take them with them running errands,” she adds.

Sylvia offers other dos and don’ts of supporting caregivers – tips finely honed throughout her career.

Do say: “If you ever need a shoulder to cry on, I’ll just listen.”

Don’t say: “Take care of yourself.”

“Caregivers know that self-care is important. They don’t need to be reminded of another thing that they should be doing,” explains Sylvia. “Imagine the stress they might feel if several people say this to them.”

Do say: You are not alone. Know that I am thinking of you.

Don’t say: Everything is going to be okay.

“Caregivers understand that you are well-meaning, but the last comment is often not helpful,” Sylvia shares.

A simple, non-judgmental and reassuring statement that reminds caregivers that they are in your thoughts and prayers can go a long way in helping them solider through their journey.

Do say: How is your day going?

Don’t say: How are you doing?

It can be overwhelming to condense how someone is feeling when they are in the middle of caring for a loved one with cancer. Instead, simply ask how their day is going. You’ll likely get more insight into how you can help. And you’ll give them the option of talking about their loved ones’ illness or taking a break from the topic to chat about the latest neighborhood gossip or movie on Netflix.

Do say: I’m bringing dinner over on Tuesday and I’ll leave it on your front porch.

Don’t say: What can I bring you?

“Even a simple question like ‘What can I bring you?’ is overwhelming,” says Sylvia. “Instead, tell them you will leave a care package at the front door.”

The reality is that sometimes caregivers are worn out from a long day and just need a break from a revolving door of people.

And remember, when all else fails or you’re not sure what to say to a caregiver, a simple “I wish you weren’t going through this” can go a long way.

Need help? We’re here for you.

There’s no easy aspect of a cancer journey – whether you’re the patient, the caregiver or a friend or family member watching from the sidelines. The Swedish Cancer Institute offers support services for cancer patients and their loved ones. Please reach out to us at 1-855-XCANCER and ask about available resources.

You can also visit us online to learn more about the holistic care we’re providing patients and families affected by cancer

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Whether you require an in-person visit or want to consult with a doctor virtually, you have options. Swedish Virtual Care connects you face-to-face with a nurse practitioner who can review your symptoms, provide instruction and follow-up as needed. If you need to find a physician, caregiver or advanced care practitioner, you can use our provider directory.

Find out the latest updates on how we’re handling COVID-19.

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This information is not intended as a substitute for professional medical care. Always follow your healthcare professional's instructions.

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