Life on the Caregiving Path

In 2004, my husband Marty and I made a life-changing decision to include my brother Jimmy in our lives on a deeper level. We share a home together and I am Jimmy’s full time caregiver. The support and understanding that my husband has is immense. I am so thankful everyday for Marty and his willingness to be a part of this life-sharing role that we live 24/7.

Jimmy is nearly 46 years old and has developmental disabilities. He does not have the verbal skills to speak like a typical person. However, he does vocalize with his own personal language made up of unique sounds, gestures and some sign language. There are many obstacles that Jimmy faces. Communication is one of the most difficult challenges. We have always had a strong connection as siblings and we accept each other as is. With a great deal of prompting, gentle reminders, encouragement and praise we get through the day. There are some tough days when it’s very difficult to stay focused and “keep it all together” due to stress, lack of sleep and the weight of my responsibilities. My patience is tested regularly. The fact that Jimmy is so resilient and quick to forgive and that he does not have the ability to hold a grudge amazes me. He has a wonderful sense of humor and a contagiously funny laugh. He understands so much and thrives on being included in everything we do. Those positive aspects help us to keep going.

Jimmy will always need a great deal of care. I try not to think too far ahead by staying in the moment and dealing with things as they come. He may not be able to say the words “thank you” or “I love you” but he shows it in the way he gives a hug and a kiss on the cheek or the way he will show me a smile and say “Sa Sa” (meaning sister) as he takes my face in his hands. He is a gentle soul and a sensitive man. He reminds me that no one and nothing is perfect but that we have tremendous and immeasurable value. Although there is always room for improvement in our attitude and behavior it helps to look at life like we are amazing and unique works in progress. I admire my brother so very much because he doesn’t have inhibitions about being himself. Although Jimmy has many limitations and lack of independence he is a cheerful guy who knows he is loved. I believe we must never give up on each other no matter how tough things get. I believe in the profound importance of caring for those who cannot do so for themselves. I believe in caregiving and the positive effects it has on my brother and our family life. I believe in being there for Jimmy with outstretched hands and open arms. I believe in sharing a few daily laughs to lighten the load and making it a point to show my love for my brother every day. Caring for Jimmy is the best way that I know how to do just that.