I was extremely worried when my husband first told me he knew something was wrong with him. He was a musician, and one night at a gig, he couldn’t play his guitar. His fingers had frozen. We started trying to find a doctor, but deep down, we knew what it was. His mother had Parkinson’s disease, and we just knew.
Once we got the official diagnosis back in 2004, all I felt was fear. That fear took over and never went away. It’s really difficult to wrap your head around. What will the future hold? Could I possibly be the woman married to someone with Parkinson’s disease? Could I be the caregiver? Would I be strong enough? Would I be selfless enough? That was one of my main fears. In fact, I have that fear now more than ever.
At the time, there wasn’t much information out there about medication and treatment, but I tried to educate myself as much as I could. We started to go to support groups to learn what to expect, but that was extremely depressing for my husband. He was in good shape at the time, and the people in the support groups weren’t. My husband said to me, “I don’t want to go anymore. I don’t want to get depressed. I’m not anything like them.” So we stopped going.
I feel very lucky about how my husband approached his diagnosis. He was depressed for a very short time but ultimately decided to take life by the horns and enjoy every moment. His work used to be very important to him, but after his diagnosis, his family came first. That was huge. He really started to appreciate us. His positivity was inspiring.
We were blessed with a lot of great years, but the last few have been challenging. His dyskinesia is very bad now. He falls a lot. Helping him can be frustrating because he hates being helped. He’ll take that out on me. If I try to help him around in his wheelchair and I’m not perfect, he’ll yell at me. It pisses me off, so I use humor. I’ll make a joke. But I am anxious. I’m nervous I’m not going to do a good job. I feel that a lot.
I also have to make all the decisions now, and that part is very hard. My husband used to make the decisions, but he can’t anymore. He was diagnosed with Parkinson’s disease dementia in 2017. One of the more difficult things is knowing what I can let him do and what I can’t. What do I take away? He bought a car recently without my permission, so do I take away his credit card? I don’t want to take away his pride or what makes him happy, but on the same hand, I want to protect him.
I try not to think about the emotions. They’re there; I’m just not expressing them. I know that it’s affecting me physically. My blood pressure is higher and I’m heavier. I don’t take care of myself the way I used to. I’m in a mode of putting out fires for other people. I put them out one by one. If I’m left with any time for myself, I’ll go for a walk or a swim. I would like someone to help me figure out coping mechanisms, but I don’t need people to tell me to take time for myself. I know I need to do that, it’s a matter of finding that time.
If you’re reading this and your loved one has recently been diagnosed with Parkinson’s, try not to think or worry about the future of the disease. That’s the best thing you can do for yourself and your loved one. Enjoy every second you have and make as many plans as you can for the now.
I’m sad I won’t have a “happy ever after,” and I also feel very guilty for not having the patience to help my mother-in-law when she was alive and living with the condition. So little was known back then. Those are my only regrets, although I feel like I may have more regrets in the future, as my husband’s condition worsens.
I think it’s amazing that we had so many years and got to do the things we did. We went on incredible vacations, and we now have such wonderful memories as a family. I’m grateful for those memories.
Abbe Aroshas was born and raised in Rockaway, New York. She graduated as the salutatorian of her high school class and attended Brandies University where she received her undergraduate degree. She continued her studies at Columbia University and obtained a doctorate in dentistry. She has three daughters, and now lives in Boca Raton, Florida with her husband, Isaac and their dachshund, Smokey Moe.