June is upon us, and with that, comes the holiday of Father’s Day. This is around the time where us kids start to stress over what perfect holiday gift to give to Dad. Maybe it’ll be a tie that never truly excites him. Or maybe some new golf balls. Tickets to any sporting event is usually a good, safe choice.
These ideas won’t really work anymore for my father as he suffers from late stage dementia (corticobasal degeneration). He can barely move his body, and cannot speak or communicate. When we are out, I notice people staring at him, and likely see him as incompetent or as a pity case. He’s not. He’s still in there, and is probably mortified when he sees how people look at him. He would probably love to shout, “You got it all wrong. You don’t know anything about me!”
And then late one night, I came up with the perfect Father’s Day present. On behalf of my father, I will act as his mouthpiece, and write what I know he is thinking. This letter should be shared with anyone who interacts with him.
This is what I wrote:
“Hi. My name is Joe. For about four years, I have not been able to speak. Can you even comprehend how long that is? Try it doing it for 24 hours straight and see if it drives you mad. Imagine not having needs met, because you can’t let anyone know. Imagine not agreeing with something, but are unable to protest.
Did you know that I speak fluently in English, Spanish, Greek and Hebrew?, I love education. I was a science teacher for many years before I retired. After retirement, I had to keep myself busy. I could never sit still, like I do these days. I even took courses at a local college and received straight A’s.
Did you know that I love American and Jewish history? I regularly lectured at my local synagogue, and at a museum in New York City on various topics. Did you know that I love to read?Every night, after I washed the dishes (while singing along to doo-wop songs on my radio), I would sit at the kitchen table and read for hours at a time. You probably can’t imagine this, as I now sit a most of the day in front of the TV. I hate TV. I used to tell my kids it was an “idiot box.”
Did you know that I can understand you? When you can’t speak, people, even my family, tend to talk around me—or about me when I am sitting right there. It makes me feel even more helpless. Look at me in the eye and talk to me. I will listen.
Did you know that I have a great sense of humor? I gave my family plenty of entertainment throughout their lives. Sometimes they would cringe at the stuff I did, but most of the time, they laughed. We laughed a lot as a family.
Did you know that I love playing sports and exercising?I used to tire out my kids and grandchildren when they were young.You can’t tell now as my arm muscles are constricted, and my legs are barely able to move
Did you know that I was meticulous when it came to my physical appearance? I would not leave the house if my shirt was unclean, creased, or if a strand of hair was out of place. I lived in a house with my wife and three daughters, and I was the one who would take the longest to get ready. Eating has gotten difficult for me, so you can imagine how it depresses me that usually have food around my mouth and clothes after I finish a meal. My clothes don’t fit the way that they used, to as I have lost muscle tone and weight. So when you look at me at a restaurant or out in public, please know that this is humiliating for me, as I know that I am not the put together man I once was.
After reading this so far, you are probably wondering how I wake up each morning. When I was first diagnosed with this incurable illness, I did not want to live, despite my strong faith in God. I certainly did not want to burden my family, especially my wife, who is my primary caregiver
I told my wife that I couldn’t go on.
But my wife told me that she and the kids still needed me. She also wanted me to enjoy our expanding family. I had one grandchild when I was diagnosed, and another one along the way. Now, I have five grandchildren and have watched them grow. My youngest grandchild is 6 months old. I even held him at his bris this past December. My grandchildren visit and speak to me all the time. It kills me that I can’t speak back to them, teach them, or horse around with them like I used to.But all of their hugs, kisses and homemade cards makes it alright.
For my birthday this past May, we all went away to the Poconos, even though I am under home hospice care. I spent an entire weekend with the family that my wife and I created. My wife, children, son-in-laws, and grandchildren went around the table and told me how I impacted their lives and how terrific I am. I cried. My family is what makes me choose to live. I would have been very angry if I missed out on these last eight years, even in this capacity. They have made all of the pain, embarrassment and frustration that I endure , worth it.
So the next time you see me, remember all that I am and all that I have. You will no longer look at me as a pity case. You will look at me in awe, admiration and envy.
Sincerely,
Joe”
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