When I Became the Primary Caregiver of My Brother on the Autism Spectrum

Since my 20-year-old brother, John, was born, I’ve helped care for him. After John’s autism diagnosis, my participation in his caregiving increased. Over time, we created a close bond. We watch movies and TV, make up silly stories and have attended a variety of concerts. Eventually, I became John’s confidante, social etiquette coach and playmate. If John wanted to do something with me, I usually made time for him. But if I didn’t have time for him, I didn’t hesitate to say no. I knew if I didn’t have time for John, then someone else at home could spend time with him.

During the past few years, Mom and Dad’s work responsibilities increased. Since John and I are so close, I became John’s primary caregiver. My responsibilities also include helping John with his college classes. At first, this arrangement was beneficial to all. Then, I started to struggle between balancing John’s needs and wants with my own obligations, needs and wants. Saying no to John started to become more difficult due to the lack of time Mom and Dad could spend with John, if I was available.

Most of last year, Mom was ill. As the family prepared for Thanksgiving, Mom was diagnosed with cancer. Before we knew it, Mom was going into emergency surgery to remove a large cancerous tumor. With Dad focused on Mom’s care, I took over running and maintaining our household. This added responsibility took more attention and energy than I realized.

Every day had drastic changes. There was little structure or stability for John. With no guarantee of Mom’s outcome and John’s intense fear of death, John struggled to understand and cope with this situation. He reacted by isolating himself and having more meltdowns. As John’s caregiver, I felt like I’ve failed him. When he got a cut, I could put a bandage on it and tell him everything was going to be all right. But now, I couldn’t guarantee nor protect him from cancer’s stark reality.

Because of Mom’s cancer and treatment, I struggle to say no to John. He asks me to spend time with him when he feels the loneliest. By saying no, I feel as though I’m neglecting John emotionally, when he needs it the most. When I see the disappointment in John’s eyes, it feels like a knife twisting in my heart.

During this phase of caregiving, I’m learning to set reasonable boundaries for John and me. And sometimes I have to say no. Despite how bad I might feel saying no, I’ve learned three reasons why it’s OK to say no. One, I need to prioritize my obligations. Two, I have to care for myself. And three, finding a middle ground. Being a caregiver, it’s so easy to want to do everything at once. Yet, by adding more unneeded pressure, you wind up overwhelmed and stressed, and you end up being less productive. To help prioritize my obligations, I write a to-do list, ordered from most to least important. It helps me schedule my day.

A week after Mom’s surgery, I had my semester finals. After turning in my last final, my professor, knowing about Mom’s health, advised me, “Remember to take care of yourself.” As a caregiver, you spend so much time caring for others that it’s easy to put your needs last, or ignore them. There have been times I’ve neglected my needs, to exhaustion. This not only hurt me, but also made it also make it difficult for John to function through his day. If you can’t take time to care for yourself, and you become ill, how can you help those who depend on you?

With John’s input, I try to find a middle ground daily, between home obligations, self-care and fun time. Getting there is a daily challenge. With every day’s priorities changing at a moment’s notice, it’s hard to make a schedule. So the focus is put on finding stability through the middle ground. There are days where everything goes smoothly, with plenty of space for fun time. While other days are so rocky and stressful, and I feel like bed time couldn’t come sooner.  But we aim for realistic options for both of us.

Being John’s caregiver has greatly impacted my life. John’s influence can be seen in many aspects of my life, from my college major to my sense of humor, and even my career aspirations. It’s never been easy. At times it’s overwhelming. But most of all, it’s been an amazing, yet unpredictable adventure for both of us, with no sign of stopping any time soon. Nor do I ever want it to end.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.