Becoming a Caregiver in My Twenties

November 22, 2024

Maddi Sidery (@memories_that_matter) became a caregiver at age 20 to her mother who was living with dementia. Sidery navigated caring for her loved one while managing university, career, friendships, and family dynamics. She currently works as a teacher in Australia, where she lives with her husband.

At age 20, my life changed forever. My younger brother, who was 16, and I had no idea that we were about to lose our freedom and the dreams we had. While our friends were exploring, traveling, and studying, we were just beginning a 10-year journey of caring for our mother who had just been diagnosed with early onset dementia.

I used to believe that early onset dementia described just the initial stages, or a milder form of dementia. That couldn’t be further from the truth. When my mum was diagnosed at 52, she was actually in the advanced stages of the disease. Early onset simply indicated that she was under 65.

Looking back, we realized that our caregiving began even before her official diagnosis. She had been misdiagnosed for years, making those earlier times particularly challenging. We had clung to the hope of a cure, but when her true condition was revealed, everything shifted. The prognosis meant that all our paths were now drastically different, leading us to a future without the mother we once knew and loved.

Mum was a single parent, and our family was small but close-knit. In the early days of caring for her, we had support, but dementia is a cruel disease that can either bring families together or tear them apart. Unfortunately, ours experienced the latter. By the time I was 24, I found myself navigating a complex world of lawyers and legalities alongside my 20-year-old brother. We had to advocate for our mum, who was now in a nursing home, and I ultimately took on the responsibility of full legal guardianship over her.

I had no idea what this role truly entailed; it felt like a full-time job. Because Mum was still young, we received government funding to provide extra support in the nursing home. It allowed us to hire carers who could take her out for the day, and these carers transformed both Mum’s life and mine. But managing this support involved countless meetings and paperwork. While I grappled with the overwhelming guilt of knowing she was in a nursing home, I found solace in the fact that compassionate individuals were there for her. With her old friends and family visiting less often, these carers became her new family, making a significant difference in her life. 

During this time, while taking on legal responsibilities for Mum, I also returned to university full-time and worked a demanding job. Looking back, I’m amazed I not only survived but never failed. I constantly advocated for Mum, attended meetings, visited her weekly, completed assignments, and managed my work. Despite experiencing numerous breakdowns, I learned valuable lessons on this journey that I can now share with others in similar situations.

We are often stronger and braver than we realize, and it’s only after emerging from our toughest moments that we can look back and say, “Wow, I can’t believe I got through that.” What I wish I had learned from the beginning of my caring journey is how useful “time boxing” can be in managing the responsibilities of being a young carer for my mum. Time boxing my life into different sections has been incredibly helpful in managing my responsibilities; by dedicating specific chunks of time to various aspects of my life, I could focus fully on one task without distractions. My main compartments included:

1. Time spent with Mum
2. Social
3. Time for myself
4. Legal guardianship responsibilities for Mum
5. University
6. Work

While these areas sometimes overlapped, this structured approach allowed me to get everything done while being fully present with her during our moments together. In those times, I experienced deep emotions — missing her and grieving her loss — but I also created cherished memories. Allocating time specifically for Mum not only strengthened our relationship but also helped me gain clarity on what truly mattered. 

When I was in my social block, I could focus on myself and nurture my relationships with friends and my husband. This time was crucial, and helped me avoid turning every conversation into a discussion about my mum and her illness. In my legal guardian mode, I dedicated myself fully to that role. I completed all my meetings, sent emails, and made calls, and once I moved on to the next block, I left that behind. 

It’s essential to carve out time just for yourself. I didn’t do this enough, but from experience, I know that if you don’t take care of yourself, you can’t care for anyone else. 

Having a visual timetable for my week and organizing my time into categories was incredibly helpful. I could see exactly what my week looked like and when I was focusing on different areas of my life. Sticking to these days helped me make future plans, and stick to deadlines. Having your days clearly blocked into categories really helped me feel like it was possible to get it all done. 

I used Microsoft OneNote to manage these categories. Each had its own folder, where I could create notes and to-do lists. This organization ensured that everything was in one place and easily accessible. The fact that OneNote syncs with your phone was a game-changer; I could check my folders and add important information even when I wasn’t at my computer and using this system made my life much easier.

Guilt often shadows caregivers of those with dementia, but ultimately, it serves no one. That nagging voice in your head telling you you’re not doing enough can be overwhelming. Time boxing can be a powerful tool in this regard. When you dedicate time to tasks unrelated to caregiving, try to keep guilt at bay.

Many unexpected events will arise on this journey, but having support and a structured plan can help you navigate them. With this approach, you’ll be better equipped to face challenges and provide the best care and support for your loved one. Embrace this strategy and remind yourself that you’re doing your best in an incredibly difficult situation.