The following are excerpts from Jay Perry's book: 'My Dad Got Sick: Love & Insights From a Caregiver’s Unexpected Journey Through Cancer”
A special thank you to Jay Perry for allowing us to share these excerpts from his book.
On his father’s diagnosis:
“The doctors scheduled an appointment for us to meet with another specialist later in the day, so we had to wait a few more hours at the hospital. My mom wanted to be alone. I had no idea what was going through her head, but I can only assume that she was off crying. Her best friend of 40 years was going to be gone in nine months. I took my dad for a coffee. I can remember sitting at a table, him sipping on that hot coffee, and me trying to be as strong as possible. I was saying things like, “Don’t worry.. its just a number” and “We’ll figure this out” while holding back my arms from hugging and holding onto him because it might be the last time. I can’t even imagine what was going on in his head.
Later that night when my dad went to bed, my mom and I had that discussion nobody wants to have. “What are we going to do?,” she asked as tears filled her face. I tried to be as strong as possible, but I couldn’t really figure out what to say. The silence that filled the room was the loudest sound I had ever heard. We sat there staring at the ground until I told her that I wasn’t going to let him die.
Here is what I learned that day: There will be days full of good news, and days full of bad news. I am forever scarred by that cold day, but I’ve made sure to take the positive from it. In being told I had nine months to a year left with my dad, I promised myself that I would spend as much time as I could with him. If doctors had said that he had about ten years left, would I have made the best of that time? Probably not. My mindset would have be one of, oh, he’ll still be here tomorrow. I urge you: please, do everything you can with your loved one today. You will regret it if you don’t.”
On a physical act of caregiving:
“My dad’s legs got so bad that he couldn’t safely shower himself anymore. We got him a bath chair to sit on, and every morning, I would be in there helping him clean up. I never thought I would one day be bathing my dad. If it was five years earlier, even the thought of it would have probably made me queasy. But this was the man who made sure I was spotless as a baby. My father, who had bathed me numerous times as a toddler, now needed my help and I wasn’t going to back down from that task. It’s interesting how the cycle of life works. It was also the first time I had ever shaved someone else. My dad hated any sort of facial hair, which is surprising because he used to rock the best moustache. I didn’t know how to shave someone else’s face. What if I cut him? I was nervous but I put that aside to make him feel happy.”
On his father’s physical decline:
“It was struggle after struggle until the afternoon of January 20, 2015. I had to step out for a quick meeting but he assured me he was safe sitting in this chair and basically forced me to go. I then got a call from my mom saying she came home for lunch and didn’t have the strength to get my dad up from the chair and was wondering when I would be home. This call quickly escalated to her calling am ambulance because my dad’s legs had gotten so bad. My mom told me that while they were waiting for help, he leaned over to her and said, “I think I’m dying.” I think right then and there, he had accepted what was to come next. It would be his last time in our home. And even though it’s been two and a half years since that day, I just got choked up writing it.
I met them at the hospital and spent as many hours as I could there over the next few weeks. I even remember bringing my dad his favorite chips and watching the Super Bowl with him.
My dad was in the care of trained professionals. Some might say my job was done, but I knew being a caregiver was more than just doing specific things. It was about being there. It was about being beside him, so he wasn’t alone. Nobody should be alone while fighting for their life and I still live with regret thinking about those nights my dad spent by himself in the hospital. I should have never listened to the visiting hours. I should have been there right beside him. There was a chair and my dad. That’s all I needed. Getting over this is something I have to continue to work on.”
On death and loss:
“This was my first time dealing with the death of a loved one right in front of me. My prior experiences with death came from what movies told me it would be like. Time and time again, films depict somebody fighting a terminal illness via an Oscar worthy scene; a scene where the patient offers his/ her one last piece of advice before they pass. Ninety-nine percent of the time that advice has to do with family. Either the loved one will tell the ill person, “It’s okay to go, I’ll take care of everyone’, or the ill person will urge their loved one to spend more time with his or her family before closing their eyes and fading away.
I wish I would tell you that I had this Hollywood moment with my dad. But I didn’t. Maybe I’m bitter because I had hoped it would happen, but I’m learning that carving up expectations based on the movies you watch might lead you to disappointment if they don’t occur. Moves do tell some truths about death and dying, but it’s quite different when you’re actually living through it. There was no Hollywood ending for me. There was no Oscar worthy scene. I never got it, but what I did get was 32 years of Oscar worthy moments with my dad. I feel so lucky that I got that much time with him. You would maybe say that that my Hollywood ending was a silent film but one that will replay in my mind over and over.”
On taking care of your own mental health:
“I easily went into a depression and my anxiety skyrocketed. I started to ignore some of the closest people around me. My relationship at the time was struggling and I definitely wasn’t myself. It took many months but I pushed through. I had written a few pages of this book soon after his death but I stopped for a long time. I wasn’t in the right frame of mind and I needed some help. I thought I was always sick. I found myself going to the doctor and hospital over and over. Thinking every pain I had was cancer. I mean, why should it be right? Seeing how many people were in the chemo clinic every time got me to believe that it’s not if you’ll be diagnosed with cancer, but when. It was really baffling to see how many people were sick. And even though my dad was gone, I was still fighting that disease- “The Caregivers Disease’.
I had burnt myself out by focusing on taking care of too many people and forgetting to take care of myself. My stress levels were at an all time high and I knowingly wasn’t much fun to be around. I had to take time to work on myself as you will have to do as well. They say, ‘Time heals all wounds’, but the same people also say, ‘The customer is always right’. Both are sayings we know to be complete B.S. Sure, time might heal a physical ailment, but the emotional scares that become buried deep into your mind after witnessing a loved one suffer will never completely heal. You just find ways to cope with it.”
On advice for others:
“This was intended to be short. I wanted it to be finished in one sitting and I hope you were able to accomplish that. If you don’t agree with some of the methods I used in the book, that’s perfectly fine. Try to come up with your own. Research, research and research. But most importantly, spend time. Time is the overarching theme in my words for a reason. We aren’t all doctors, we aren’t all healers, but the one thing we all have in common, is that we have the powerful ability to love. Promise that you will not only spend the time, but love the time you spend with the person who needs it most right now. Because depending on your definition, you can be witness to unimaginable daily miracles.
I wish you all the best on this journey.”