This morning I reflect on how my caregiving journey taught me resilience.
We had to be able to adapt and troubleshoot life with ALS. Learning to adapt to mobility changes and how to manage being safe in the house. Physical therapy to keep his body moving and without spasms and rigidity. When will he give up driving or will a doctor take that away. Introducing PSW’s into our home. Allowing a stranger to do his personal care. Therapy sessions for speech and swallowing. Maintaining speech as long as we could. Eating food and the decision to have a feeding tube when safety became an issue.
These are the physical changes and demands. How do you emotionally adapt to our personal reality. Our realities are different I am fighting to stay healthy and strong to support myself and our children through caregiving and the knowing I am going to watch my best friend and husband die. I am going to have to move forward without him. He had to come to terms with every change and loss brought him closer to saying goodbye to his wife and children. Also the fact he could not verbally express what he wanted or needed to say.
I became his voice and greatest supporter. I made sure he made all his decisions. ALS would not take away his dignity. He had two wishes when he went to LTC to shower everyday and no sweat pants allowed. He really hated looking sick and not put together. He didn’t care if he had to get up early for a shower. The nurses were great they carried out this wish as long as they could. He wore his cotton pleated pants and t-shirts with collars. Not a pair of track pants to be had. It makes me smile thinking about this.
Understanding in time that his anger and outbursts were his only way to have control in his life. These were usually times of change in his symptoms and he was entering a new stage of his disease. He would work through it and the spark in his eye and smile would return.
Even when pneumonia came to him and he sat and made the decision no more medication he was finishing his time with us. He showed us so much courage and resilience. He had his own ideas of how this was going to be. He had been in bed for a few days with pneumonia. He had me get him up showered, dressed, hair combed. His appearance was so important. A trait he got from his mom.
He wanted me to walk him through the LTC hallways so the nurses, doctors, staff and residents could see him. In his own way his final good-bye. Back to his room. He told me the names of people he wanted to see. I made phone calls and people came in to say hello knowing this was his goodbye. He had double pneumonia now and was being medicated to stop the feeling of suffocation. He sat proudly in his chair, and that is where he took his last breath. He died on his own terms, his own way and nothing unsaid.
Everyone that knew him continues to this day to pull strength and resilience to change because of what he taught us.