This is Hugh’s story as told by Katie Ryan…
My father lived with Parkinson’s disease for twenty years before he died and it progressed very slowly. He was diagnosed at the age I am now and died at seventy-two on a beautiful fall day in September when the sky was blue and the season had just begun to change. As I said, the progression of his disease was very slow and I first noticed something was wrong when I saw his hand just barely shaking. He wouldn’t tell me because he didn’t want anyone to know, but I asked my mother and she confessed the truth.
As a younger man, he was a marine and lived that kind of lifestyle throughout all of his adult years. I remember him being outdoorsy, very active and physical. He loved nothing more than being outside, tending to the few acres on which he lived with my mother. He always had little projects in the works—there was constantly something to do.
“When the dementia started to set in, none of us really noticed it.”
I knew of his disease long before anyone else found out. I still don’t know if my brother or sister figured it out on their own or if my father told them. The whole time, we never knew how long he’d make it. From the beginning, some doctors would say he had one year to live and others would say five. We didn’t know if the Parkinson’s would ultimately take his life before something else did. Slowly his body stopped working. He would lose his ability to walk fast or hold things. His ability to simply blink started to deteriorate as well as his sense of hearing. When the dementia started to set in, none of us really noticed it. We’d be sitting at the dinner table talking and he would say something completely unrelated. We thought it must be due to his hearing at first, but then he would say absurd things about my mother running a whorehouse or helicopters landing on the roof. It started getting very difficult and he eventually lost his ability to drive.
As his condition got worse, he could barely walk. He slowly lost his ability to speak as the dementia took over and my mother was the last one who could comprehend what he was trying to say. They had worked out a routine so she could get him wanted but he would still get frustrated at times and try to run away. We had to start hiding his car keys, and in retaliation, he would hide things from us. To this day, we still find things he hid around the house.
“All through his illness, she would still take him out for breakfast and other public places, but as his health got worse, the reactions from strangers would become increasingly hurtful.”
Of course, we didn’t know what we were getting into at first and looking back now I realize how helpful it was for he and my mother to be in a Parkinson’s support group. All through his illness, she would still take him out for breakfast and other public places, but as his health got worse, the reactions from strangers would become increasingly hurtful. Especially near the end, he was so feeble people were understandably shocked but it was uncomfortable nonetheless. In the support group, they could be social and accepted in a group that could understand what he was going through.
While she did have hospice workers helping now and then, my mother never considered putting my father in a home. She stuck by him and took care of him from beginning to end, even as it began to wear on her own emotional and physical health. The doctors would always say he had a few months left to live, and as he kept living, it became very exhausting for all of us. Although we were grateful for the extra time we had with him, his death also came with a sense of relief that, naturally, spurred a sense of guilt.
“The hospice workers came to remove his hospital bed and afterward nearly every trace of him was gone.”
Immediately after my father’s death, my mother began moving all of his things out of their room. She didn’t want to linger after all she had been through, so she cleaned. The hospice workers came to remove his hospital bed and afterward nearly every trace of him was gone. Of his things, my siblings and I all kept something to remember him—for me, it was a tie. His death affected all of us differently and became a sad, abstract experience for me living far away. But every now and then, his absence will strike me in the presence of a random memory. One time I set my glasses down on my nightstand and noticed they were resting on the lenses. My father always told me not to do that so I reached over to put them on their frames only to realize he instilled that habit within me. I remember him in those moments now, looking back on the things he taught me or the times I took for granted, and I know I’ll always miss him.