September 10, 2013

Being A Burden

He woke up often at night, scared. He would call out to me. I would sit with him and tell him jokes to ease his anxiety.

It was hard to get him to eat anything. He was picky and had problems chewing. He would choke easily and drool a lot. Eating was always a big mess. He did better with liquids, but I had to give him a straw and watch him carefully to make sure he didn't choke.

He had problems going to the bathroom by himself. I helped him pull his pants down and he'd sit on the toilet for what seemed like hours sometimes. He would later tell me it was difficult to coordinate and relax his muscles to do what they needed to do.

His balance was not good, so we had the help of a physiotherapist and OT. He didn't really like it, but eventually he did the exercises and got some confidence. I remember him walking with the aid of a support harness and the OT hanging on tightly to help keep him up. He still tired easily and fell often, sometimes hitting his head quite badly.

His speech was slurred and hard to understand, so we got him speech therapy. Again, he didn't always want to cooperate, but we all pushed him and supported him in his efforts.

Otherwise he spent most of his day quiet in front of the TV. Or sometimes he listened to music and closed his eyes. It was hard to get him to interact with me. And sometimes when he did, he was verbally abusive. He was very controlling about the way things should be in his room.

He was a challenge and a lot of work, but I love him and I never gave up on him.

I'm talking about my father before he died from Parkison's. I was his caregiver.

He never wanted to be considered a burden. That was his fear. I never considered him a burden, even if at times he did not make the process easy and he certainly wasn't always nice. He abused me verbally my whole life, up until just before he died.

I never once thought of killing him.

Do not tell me caring for someone with special needs is a burden. Do not tell me my father was a burden to society.

Do not tell me caring for my Autistic son is a burden. Do not tell me my son is a burden to society.

Do not tell me either of these situations makes it understandable to murder either of these people, no matter how abusive or difficult things get.

This was written for Flash Blog for Isabelle Stapleton

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