11/27/2025
National Family Caregivers Month reminds us how essential caregivers are- and how important it is that their stories are heard. Ellen’s reflection on caring for her son Brendan shows both the beauty and the challenges of this role.
"My name is Ellen and I am a caregiver for my son Brendan. Brendan is 31 years old and has a diagnosis of ID and Autism Spectrum. He lives at home with my husband Tom and me. Brendan attends a day program and has a very active social life. He is involved with The Friendship Circle, Band Together Pittsburgh, The Woodlands, Special Olympics, and Best Buddies. He is verbal, but sometimes his articulation is poor and he can be difficult to understand.
He requires supervision at all times and is not independent in the bathroom and other self-care areas. He cannot read. For the most part, he is extremely happy and has a great life. Providing this great life can be overwhelming and exhausting. It comes at a high price—it affects my husband’s and my social life, marital life, and family life. We often feel isolated and that no one, including our own families, really understands. It can be very lonely.
My biggest fear is what his life will be like when we are no longer here to maintain this lifestyle for him. It is the one thing that keeps me up at night. I try not to dwell on it; I try to take one day at a time. But as my husband and I grow older, it becomes harder and harder to do. But as hard as being his caregiver is, it is also very rewarding, and I know no one will love him and care for him like I do.
Right now, things are going well. We have some great staff to help keep Brendan out and about, which gives me much-needed breaks. But all that often changes in the blink of an eye. I hope that the future will change things for the better. I hope caregivers will receive the recognition they deserve. I hope that the system will change for finding Brendan a home for when I can no longer be his primary caregiver.
But in the meantime, Tom and I will continue to find fun and meaningful ways to enjoy our family time—we bike and kayak. Thanks to the help of our older son and daughter-in-law, last year we took a trip of a lifetime as a family to Italy and France. I will continue to take it one day at a time and stay positive about our future." - Ellen Clancy