October 12, 2016 — My husband and I had always wanted my parents to live with us in their senior years. So, in 2001, we decided to add on a master suite and living room to our home for mom and dad, as they were in their late 70s. Unfortunately, mom had bladder cancer and dad suffered with Parkinson’s disease.

With the anticipation, both parents had a renewed excitement for life, especially dad. He was at the construction site nearly every day, even helping out as he could by overseeing and working in the yard.

When the day came for them to move in things were actually pretty good. Dad even had a little hope for the future and mom was starting a treatment for her bladder that had a good success rate.

We had such a wonderful time living together, though sadly, it was short-lived. After only two months, dad began having difficulty feeling his arms. We asked his neurologist and were told it was just a symptom of his condition and Parkinson’s drugs. We felt helpless because we were not sure what was going on and he was very worried and beginning to be extremely depressed again.

We tried to get answers from all of dad’s doctors, but for some reason no one could, or would, help us. Out of desperation one evening we went to the emergency room. He sat in a wheelchair for several hours, teary-eyed and frightened. Finally, we were told to take him home.

That night, my dad’s greatest fears were realized, and he had a massive stroke, leaving his right-side limp (his left hand had the Parkinson’s tremor) and making him unable to eat, drink, move, or talk. What haunts me even today is that if he had been in the hospital, they could have given him immediate attention and it may not have been as debilitating. That night at the hospital his Living Will was not followed and a feeding tube was inserted to keep him alive, so he, subsequently, lay in a bed nearly motionless for 17 months.

For eight of those months, he was in a care facility and my mother went to see him each and every day, a huge strain on her physically. One morning when she arrived, he was crying out loud, wailing. She struggled to calm him when one of the caregivers came in to tell her what had happened. Apparently, the fan was left on my dad all night, and no one ever came to cover him up. Of course, he wet himself and even though he cried for hours he could not get anyone’s attention. This picture torments me still as I see him shivering through the long hours of the night.

My husband and I decided right there that we would bring him home, and we were committed to his care. We also knew the daily drive for mom was getting too much as she had started chemotherapy.

For nine months Matthew, mom and I took care of dad in our home, along with a daily caregiver. We did all we could do to make him comfortable and had many experiences that were both rewarding and trying.

Dad’s only way of communicating was a gentle squeeze with his left hand (meaning “yes”). To share one example that meant a lot to me, dad was agitated when I was going to clean him. I came around the bed and took his “good” hand in mine. I said, “Dad, I know this is uncomfortable for you, but I want you to know it is an honor for me to do it.” He began to tear. “Dad,” I said looking into his eyes, “would you do it for me?” Suddenly, I felt his hand tighten around mine. He began squeezing very hard, actually moving my hand up and down as tears flowed onto his cheeks. That was the last he stressed over me cleaning him and I really felt it had brought him some peace.

There were also times when I didn’t act quite so “noble.” The caregiver had to leave early so it was up to me to set up dad’s liquid food for the night. I had done it before, but I was feeling rushed and when I turned the bottle over the weight flipped it out of my hands. Liquid splattered down the wall and carpet. I impatiently said, “dog gone it!”

I saw those eyes looking up at me, staring. I felt bad, there he was lying motionless, completely dependent on me – and yet, I am upset? But, before I could say I was sorry, his eyebrows lifted as they did when he smiled, though his mouth stayed flat. Up again they went, and for a second, I saw that old twinkle. All I could do was smile back. He didn’t know it, but he led me that day to a different place – well, maybe he did know.

Dad passed away on October 22, 2003, at 80 years of age. He was such a sweet, gentle man. I deeply cherished him in every way, and I’m so blessed he was my dad. As his caregiver, I realized more about what matters in life and believe the things we do to help others truly changes everything in the world.

Be blessed in those moments to cherish.

Jane