Parkinson’s disease forced our family to say the quiet parts out loud
Once we started talking, we began to understand each other better
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Faith has always been at the center of my family’s life.
As I grew up, I saw my family face tough times, believing that God would help us through. Strength, prayer, perseverance, and trust in God were just part of our daily lives. So, when my uncle Brandon was diagnosed with Parkinson’s disease, we naturally relied on that same faith.
But admittedly, at times, beneath that faith, there was still trepidation.
I think we all understood what the Parkinson’s diagnosis meant, even if we didn’t say it out loud. We worried about how much time we’d have with him, how his movement might change, and how the disease could affect the energetic, outgoing person we loved. Still, most of us kept those fears to ourselves.
In some ways, it almost felt like saying those thoughts aloud meant we were losing faith. So instead, we stayed strong. Or at least, that’s how it looked on the outside.
Dealing differently with the situation
Over time, I noticed everyone handled the situation differently. Some people talked openly about their fears, while others stayed quiet and tried to keep things steady. Everyone was dealing with something, even if they showed it in different ways.
Looking back, I think we focused on staying positive and finding solutions because we didn’t want him to feel down. But caring for family can get emotionally complicated, especially when everyone is trying to protect each other.
As my uncle’s symptoms progressed and his mobility and coordination changed, responsibilities naturally grew. I often attended doctors’ appointments to help process medical information, explain terminology, and support however I could. I wanted to help make things easier for everyone involved.
At one point, I started helping my uncle with exercises to support his balance and movement. Through that, I learned something important: Even when you help out of love, caregiving can still cause emotional tension and misunderstandings in families.
That lesson stuck with me because it showed that Parkinson’s affects more than just the person who has it. It changes routines, emotions, how people talk to each other, and family relationships, too. Sometimes, even the people who try the hardest to help each other still have trouble saying how they really feel.
The spoken things
Eventually, our family realized we needed to talk more openly. One day, we finally sat down together and shared the worries, frustrations, fears, and feelings we had all been holding in for a long time. To be honest, it felt uncomfortable at first. We had spent so long trying to be strong for each other that talking about our fears felt strange.
But once we started, something changed. We began to understand each other better. Shocker, huh?
I realized that people show love and handle stress in different ways. Some need to talk about their fears, while others keep things inside and try to stay calm. Neither way is wrong. They’re just different ways of carrying the same feelings.
That talk also helped me see something else: You can have faith and still be honest. You can trust God and still admit you’re scared. You can stay hopeful and still admit you’re tired. And you can love someone deeply and still find it emotionally hard to care for them.
Looking back, one of the biggest lessons Parkinson’s taught our family is that communication is just as important as caregiving. Silence sometimes comes from love. People stay quiet because they want to protect each other, avoid causing worry, or hold onto hope. But I learned that families often support each other best when they create space for honesty, too.
Our journey was never perfect, and we didn’t become experts at sharing our feelings right away. But once we started talking more openly, it got easier to carry the emotional weight together instead of alone.
And in many ways, that openness became part of the caregiving itself.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
Duane Mac
Communication with all family members is important! What does one do, though, when the person with Parkinson’s diagnosis, is a caregiver of a spouse, who is in heart failure, has diabetes, and has metabolic syndrome? Add to that, other family members, some of whom are medical professionals, choose to be complacent, and offer only minimal support, if that? Oh, and then to add insult to injury, what if one’s primary care provider decides to give only Medicare Wellness check, minimal care, where they see the Parkinson’s patient for only 10 or 15 minutes, once a year?