I’ve been involved with the TRC for almost 10 years, but it took my father getting sick and passing away for me to fully understand the power and importance of respite. I witnessed first-hand the love and attention that family members give, the sacrifices they make and the beautiful chaos that comes with caregiving. What had been just a theory became real to me. It gave me newfound respect for caregivers and for the incredible work done by the TRC.
It also took watching my father, an incredibly proud and independent man, lose his ability to care for himself to understand the emotional toll that being cared for takes on the person receiving care. It really takes sacrifice and
understanding from both caregiver and care reciever. It wasn’t easy for my dad to let others take care of him. It can be hard for someone to understand and be empathetic about the sacrifices a caregiver is making to provide care–but it’s because the person needing care is losing so much.
My dad had been diagnosed with silicosis, a progressive lung disease, many years ago. It was caused by working in a fiberglass factory for more than 40 years. He did incredibly well with it until the last 2-3 years of his life. As a progressive disease silicosis always gets worse, so eventually he crossed a line and couldn’t live without being on an oxygen machine. During the last year of his life he had a massive respiratory failure and had to have a tracheotomy. He had to learn to talk with a valve and get oxygen through his trachea.
My two sisters and I rearranged our lives to take care of him…each in the ways we were able. My oldest sister lived out of town and had four children in school. She used all of her family medical leave and vacation to make trips down to provide respite for my sister and me. And to be with dad.
My younger sister and her daughter, who lived across the street from my dad, became his primary caregivers. They were there morning and night to clean dad’s trachea and care for him and my step-mom who has her own health problems. I would come and care for them on Friday, Saturday and Sunday for 5-6 hours a day so that they could have a little break.
At one point we had a paid caregiver coming in to take care of dad and my step-mom Monday through Friday. Having respite and someone to take care of their medical needs gave us all an incredible gift — time to just be together as a family. Having respite from taking care of his physical/medical needs gave us more time to just talk and be together. Respite gave me my dad back for a short time before he continued his journey.
The TRC says that respite is the gift of time. I know what that means now. It’s a gift that is priceless for families. A gift I’ll treasure forever.
– John Hood, TRC Marketing Committee