Supporting People as the Age
Becoming Guardian for My Brother Jimmy
Jimmy and Marie
For most of my life, my parents were the primary caregivers for my brother Jimmy. He is 58, just 12 months younger than me, has an intellectual disability, epilepsy, and obsessive-compulsive disorder (OCD). Jimmy loves to socialize and be out in his community. He takes great pride in working at a grocery store three days per week. When he’s at home, he usually has country music playing in his room. He also enjoys watching sports, and both current and classic TV shows. My dad, now 78, has been his main support since my mom passed away five years ago. As my dad ages, my role has shifted, and I navigated what it means to be my brother’s primary support person and eventually, his legal guardian. As an additional challenge, I live in San Diego, California, and my brother lives in a group home in St. Paul, Minnesota! It’s truly a journey of love and responsibility.
As I take on this new role, I’ve realized how important it is to have a strong support network. To achieve this, I rely on several key relationships. First and foremost are the DSPs and other staff at my brother’s group home. They are a vital part of his daily life and are basically my eyes and ears since I live across the country.
Over the years, my parents made sure I was involved in Jimmy’s life, but it was a different kind of involvement. I was the supportive sister who helped out occasionally, but not a decision-maker. My parents were always open about the fact that this dynamic would change, and his care would eventually become my responsibility. They kept me updated regarding his group home, social workers, and service providers, and my mom would share her long-term wishes for Jimmy. This planning was essential, and it helped me understand Jimmy’s sense of direction for the future.
My parents’ foresight in preparing me for this responsibility has been invaluable. They didn’t just tell me what I would need to do; they actively brought me into the process, teaching me about the systems and the people involved. Now, as my dad steps back, I can go forward with a deep understanding of Jimmy’s needs and the resources available to him.
Jim enjoys his work in the bakery at Cub Foods.
As I take on this new role, I’ve realized how important it is to have a strong support network. My primary goal for Jimmy is for him to continue living a safe, productive, and happy life, with as much autonomy and comfort as possible. To achieve this, I rely on several key relationships. First and foremost are the DSPs and other staff at my brother’s group home. They are a vital part of his daily life and are basically my eyes and ears since I live across the country. I work closely with his case worker and his job coach at the grocery store where he works. They help me navigate the complexities of his care plans and funding. I see them as essential partners in ensuring Jimmy receives the best possible support.
Here are a few specific things that have helped me: Ask questions and be present, create a binder and stay organized, build relationships with support staff, know everyone’s name, and be patient with yourself. It can be stressful and emotional, so I have learned to pace myself. I also visit on a regular basis.
Jim and Chet at Minnesota Twins game in front of the Kirby Pucket statue.
Here are a few other things I want the readers to know about my brother: Jimmy loves attending Minnesota Twins baseball and Minnesota Lynx basketball games. Most days he can be seen wearing one of his 32 Minnesota Twins shirts! He has played softball for his church team for over 20 years and played adaptive softball before that. He’s a good communicator and is fun to be with…he always knows how to make me laugh! I would not be the person I am without my brother, and it is my honor to be his guardian.