Telling My 15-Year-Old Son His Mom Has Parkinson’s

August 15, 2024

Paul Kidwell is a communications and patient advocacy consultant, writer and is a caregiver to his wife who has been living with Parkinson’s disease for over 17 years.

When my wife was diagnosed with Parkinson’s over 17 years ago, one of the first things we spoke about was how to share this news with our then 15-year-old son. When a boy is 15 years old, the world expects two things from him: serious or silly — not too old to cast off their childish ways they’ve spent the last decade perfecting, and certainly not mature enough to be enshrined into adulthood. And so we debated how to tell him, the timing of that discussion, or whether to tell him at all. At the early stages of her illness the symptoms would be imperceptible and not very apparent to him, so maybe this disclosure could wait.

We thought it would make sense not to burden him with information he couldn’t process and let him enjoy high school and all those wonderful experiences. However, we also knew that there would never be a good or right time to share this with him — but that there should be a time. It was clear we had to tell him sooner rather than later.

Predictably, he was upset when I told him that his mom was sick, it was likely she would not get better, and that there was nothing he or I could do. I was touched by his love for his mother and for me when he offered his support. I told him that if his love was enough, Mom would never have gotten sick; I told him that if our love was all it took, she would be cured today.

As a father, it’s up to me to tell him what information I think he can understand and live with. It’s also my place to help him process the emotions I know will surface after our conversation, along with the many questions. 

So, here’s what I told him about Parkinson’s. It was straight out of Google. He’s a bright kid so I felt comfortable injecting a bit of scientific jargon that would give him a clear picture of the disease and its potential effect on his mother. I told him that he would likely see mom exhibiting tremors in her legs and from time-to-time having difficulty walking. I shared all this hoping he would understand, but knowing that he would just want to know if his mom would ever get better. I told him that was unlikely. This is when he began to cry.

I knew those eyes and could see beyond the tears and his obvious sadness that he was also scared; he was 15 after all, and as a teenager he was no match for the adult information I was asking him to digest. What I did not tell him was that she might also contract dementia which could affect her memory and how she acted. I didn’t share with him that at some point his mother might not remember his name or who he was. Nor did I tell him that Parkinson’s might also shorten her life. For now, that’s information I will keep to myself during those unspeakable nights when the thought of living without her makes me cry too. 

At 15, he had first dates, first dances, a first kiss, and his first heartbreak to look forward to, along with achievements in and out of the classroom to celebrate. So, I kept to myself the doubts I harbored as to whether I would be enough to care for his mom. He didn’t need to know what her life might become, and the type of help required. The burden of caregiving is an adult notion, and that conversation could wait. 

But perhaps the most important thing I tell this young man is that when he sees his mother in the grips of this punishing disease which may make her act differently, have difficulty walking or getting in and out of the car, or, in time, remembering things she once found familiar, this is not who she is, but rather her illness. 

To understand Parkinson’s as a disease is gaining only a small piece of what his mother goes through each day. I tell him that when he sees his mother in the grip of this horrible disease, it is only a temporary difficulty and momentary obstacle. I tell him not to look at this illness and what it has taken from her and from us. Like yesterday, it is only history and impossible to reclaim. And although she lost a part of her life, she will never be without our love. Of all the things I share with him, this is the most important; the one thing I want him to remember and hold close. 

I tell him that there is nothing more courageous than showing your love under these circumstances. Nothing more courageous than being there even though your heart breaks. I also wanted him to know that on the other side of heartbreak is wisdom, and at his age I wasn’t expecting him to be wise. I was only expecting him to be 15.