Our latest podcast features, Kristie, a young caregiver who set aside a significant part of her adolescence to become the sole caregiver for her mother, who was navigating schizophrenia and anorexia. The medical professionals, counselors, and groups from whom she sought assistance, however, never gave her the title of “caregiver.” As such, it took her years to think of herself in this way or discover the resources that search term could unlock. In addition to the insightful podcast with Kristie, she also shared her experience in this blog post.
Listen to the podcast here
What age did you start caregiving and what did it look like? (For example tasks or things you needed to do to support your mother). What barriers did you face as a young caregiver?
I became a caregiver when I was 16. My mom got really sick with anorexia nervosa and schizophrenia. I was in high school at the time and I was trying to navigate the mental health care system in B.C. It was really challenging. For the past eight years, I have mentally and emotionally supported my mother while attempting to fill the gaps in her life she couldn’t attend to anymore. For example, I would answer calls for her, try to help her eat, arrange visits from relatives, contact mental health support workers, monitor her during the day and night, cook and bring food to her in the hospital, and cover for her at work when she was too sick to go.
There is a lot of stigma with mental illness so it was really, really hard to access any care. My mom went seven years without getting any care at all. I would call the emergency mental health care service for people who refuse care like my mom. They came to our house a few times, and they would say, she’s not a harm to herself, so we can’t take her. Those years were really tough. I felt like I had lost my mom, I lost a lot of familial support, and I struggled to navigate growing up on my own. It was quite a lonely experience.
Caring for someone with mental health challenges is very different from caring for someone with physical illness. You’re not helping them get up and helping them take a shower. But the kind of care I give is important. I felt like an imposter for a long time. And now I don’t feel like one anymore.
In your opinion, what is different about being a young caregiving in comparison to an adult caregiver?
Existing resources are typically geared towards adult caregivers and often assume that these adults are middle-aged and either parents of children or adult children caring for elderly parents. However, my experience growing up as a young caregiver was different. I had to deal with neglect, essentially becoming my own parent and taking on the role of caring for my mom at an age when I wasn’t prepared, and I lacked the necessary support. When I encounter resources that don’t consider the unique positions young caregivers may have, I find it challenging because my emotions, struggles, and coping strategies differ from those of adults caring for children or elderly parents, and it adds immensely to feeling already isolated and unsupported.
Another significant challenge of being a young caregiver is the lack of financial means to access resources, particularly mental health resources, which can be quite expensive. During my teenage years, I had no income to afford private therapy or counseling. While there are some free resources available, they are often in short supply and have limited offerings. For instance, I recall calling a free mental health care line, but the wait times were exceptionally long (up to 8 hrs), and the capacity to provide assistance was limited.
Additionally, it’s difficult to connect with peers when facing the challenges of caregiving. It’s challenging to turn to teenage peers and expect them to understand and support you with what is essentially an adult-level problem in your life. This can lead to isolation as you feel disconnected from the typical concerns of your age group and struggle to fit in with your peers.
If you could wave a magic wand and have support for young caregivers (yourself included) what would it look like?
It would be wonderful to have accessible programs that don’t require financial resources. These resources should be tailored to the specific challenges faced by young caregivers, addressing emotions like anger, neglect, fear, and isolation. Connecting with fellow young caregivers would also provide much-needed support and combat the stigma surrounding this role, as it’s not often discussed.
Additionally, having a support service that periodically checks in, even if it’s just a simple text message to ask how you’re doing, can be incredibly valuable. It reminds you that you’re not alone and that others are aware of your situation. This type of support can alleviate some of the burdens of heavy responsibility that you get pushed into at a young age.
How has your caregiver role changed during the years?
My caregiving role has evolved significantly over time, largely due to changes in my mom’s health. For the first six years, starting when I was 16, my mom wasn’t accepting care, and my role involved providing passive support. Eventually, her deteriorating health led to her admission under the mental health act. During this time, I had just started medical school, and the backdrop was the COVID-19 pandemic. It was very stressful but for once, hopeful.
In the hospital, communication was challenging, and she even went on a hunger strike there. She was already very ill and had no weight to lose, which was extremely concerning. Much of my work during her inpatient stay involved liaising with healthcare professionals and collaborating on her care management. For example, we made a plan that I would bring her foods to the hospital that I knew she would eat. I wasn’t always their first point of contact probably because I seemed young and the first contact is usually a spouse at her age. It was hard to figure out what was going on sometimes and evidently led to more stress and anxiety.
Once she left the hospital, my role shifted to more active surveillance. She now has a care team that monitors her, and if she doesn’t adhere to her care plan, there’s a risk of readmission due to her medical history being on record. This added support has been really beneficial. I ensure she attends her appointments, takes her medication (especially critical for managing schizophrenia, as patients can be deceptive about it), maintains a relatively well-rounded diet, and engages with the external world, including contacting relatives and friends.
Were you identified as a young caregiver by healthcare providers or other support professionals?
I’ve been a young caregiver for eight years, and during that time, I’ve interacted with various healthcare professionals, but none of them have ever recognized me as a caregiver. In fact, no one has ever acknowledged me as a caregiver, including friends, family, and other peers.
I didn’t get involved with caregiver organizations until a year and a half ago, because I didn’t think I could call myself a caregiver. I’m still hesitant to describe myself as a caregiver with peers or those around me, but it has helped me have some peace of mind and given me some validation to the position I’m put in. It makes me feel like I am an important part of my mom’s health care and wellness.
Why is it important that you were identified as a young caregiver?
Growing up, I never had access to resources for caregiving. The advice I received was mostly centered around seeking individual therapy or joining support groups. However, I was never provided with caregiver-specific resources, which were essential because caregiving was what I was doing and where I needed support the most. Without being recognized as a caregiver, it’s challenging to discover these resources independently. You wouldn’t know what to search for online or what to ask for help with. I wasn’t even aware that such resources existed initially. As a result, I spent eight years without access to these invaluable tools, particularly during the toughest first five years of my caregiving journey. I also lacked the financial means to seek private assistance.
Moreover, there exists a conventional image of what a caregiver should be like in terms of age, appearance, and background. By not acknowledging young caregivers or others who don’t fit this stereotype as caregivers, we perpetuate these narrow definitions. This exclusion prevents a broader range of people from benefiting from caregiver programs and hinders progress. It’s crucial for society to recognize that caregivers come from diverse backgrounds and have various needs and challenges. Embracing this label can help a wide range of demographics access the support and resources they require.