I’ve spent a lot of my life as a caregiver. It was emotionally draining and full of challenges and heartache. It saddens me that my parents are gone. And now that my brother Robert is gone, I miss him terribly. There were so many challenges in trying to help them with medical issues and day to day living. But I also felt honored to be able to do that, and I would do it all over again a hundred times over.
My father passed away in 2000. Before he died, I was his caretaker. I was a single mom at that time, and I was caring for my two daughters, working about 60 to 70 hours a week, and then tending to my father immediately upon getting off work. I was doing his laundry, taking him to the doctor, shopping for him, cleaning his house, pretty much just everything. Looking back, I don’t know how I did it. Being younger probably helped. There were a lot of difficult days. Often, he wasn’t receiving the level of care he should have. I had to advocate for him every step of the way…My mother died a few years ago. She had COPD and severe back problems from a life of farming and house cleaning. I had to advocate for her to get the pain medication she needed. For both of them, it was just one thing after another, and that’s very common when you’re taking care of someone at the end of their life. That’s one thing you don’t realize until you’re in the middle of it all.
In a way, maybe helping with my mother and father prepared me for what I went through with my brother Robert. I was his caretaker for close to ten years, if not longer. He started having hip pain and back pain when he was a teenager. By his twenties, he was in a wheelchair. He was diagnosed with ankylosing spondylitis, but the doctors in our area at that time didn’t know much about the disease or how to treat it. And he also had mental health issues, and the stigma might have made doctors kind of give up on him. He didn’t get the treatment he needed. He went to about twenty sessions of physical therapy, but he really needed more help. Over the years, his physical health really deteriorated. By the time he passed away this September, his legs were drawn up and his chin was pressed into his knees. His stomach was impinged, and he could only eat a very small amount at a time. He lost so much weight and his muscle atrophy got worse and worse.
There are so many cracks in the healthcare system. And I know it sounds like I’m being a negative person, but I’m being 100% honest about it. Robert lived in a rural, small town in Eastern Kentucky, and he didn’t have rheumatologists or big hospitals very close by. Insurance difficulties meant he couldn’t get home health aides. Robert had pressure wounds on his bottom from the wheelchair and sitting, and it was a fight to get a trained nurse to tend to those wounds. The caseworker he had wasn’t very warm or compassionate. I had to speak up for him on so many occasions, and even though I always spoke calmly and respectfully, sometimes the doctors or other medical staff got angry or were dismissive. It leaves you at the point where you ask, “Do I advocate and make these people mad? Or do I not advocate and keep them on my side but then know that if I don’t speak up, my brother will continue to suffer?
But there were some good people and programs out there. We used a great program called Mom’s Meals that would deliver food to him. There was a woman I knew who worked in the pharmacy in Robert’s town, and she would go out of her way to make sure he had his medication. She was so sincere and caring. There was a place called Sugar Camp. They offered services to the elderly and the handicapped. The workers there were wonderful. One man there took the time to visit my brother and help him. He even came to my brother’s funeral, which meant so much to me. My younger sister Madeline helped me when Robert went off his mental health medications during COVID. She helped him get back on his medications.
Still, a lot of the responsibility fell on me. And I lived about an hour and a half away from Robert, so it was a long drive to go down there every week. Even when I wasn’t there, I still tried to help him from afar. Being a caregiver from a distance is really time consuming, because you spend your whole entire day just trying to advocate from afar. And that’s kind of rough because it seems like there are so many days where you just don’t get enough accomplished. I’m moving right now, and I found these notebooks I kept when I was taking care of him, and the pages were filled. Talking to doctors and Medicare and social workers, visiting him and helping him to wash his hair, face, back, and feet, helping him to eat and clean up the home…It was overwhelming.
I have to say, though, Robert was very independent. He lived alone until right before he passed. Even suffering from spondylitis and other health problems, he was always determined to figure out how to try to do things himself. And he never gave up hope. He had the most drive I’ve ever seen, and so much energy. Before his health really deteriorated, he was gardening and taking care of his cat and even rearranging the furniture in his living room. I’d tell him to stop because I worried that he would hurt himself. But he didn’t like to be still. And it was a learning experience, helping him but also knowing he liked to do some things for himself.
As a caregiver, I ended up putting myself on the back burner for so long. Even now that my brother has passed, I still struggle to make it a priority to take care of myself. But I know it’s important. I’ve seen a counselor and a psychiatrist, and it’s helpful to have someone to talk to and to help with depression and grief. And to remind me to take care of myself, to love myself.
People need support, whether they are living with a disease or supporting a loved one who is. Honestly, I’m so grateful to have found the Spondylitis Association. I wish I could have found you all years ago. I know my brother would be honored to have known that there was a foundation that supported people fighting with what he fought his whole life.
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