Discovering the role of support networks in Parkinson’s care

Recordings of his late father's phone calls were eye-opening for this columnist

Chukwuemeka Uchebuakor avatar

by Chukwuemeka Uchebuakor |

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Every time I enter the password on my laptop to begin writing a column, I’m hit with a powerful wave of emotions. There’s a sense of fulfillment — a chance to reflect on my late father’s life, to honor his memory. But alongside that fulfillment, there’s an undeniable pang of regret, a voice inside that asks, what could I have done differently? What could I have done to extend his life?

Striking a balance between these emotions has been an ongoing challenge. However, after my father’s passing almost a year ago following a long battle with Parkinson’s disease, I discovered another dimension of care that I hadn’t fully appreciated during his lifetime: telecare and the often overlooked role of support networks.

My father, a man of strict discipline, instilled in us a deep respect — an African value that shaped how we interacted with him throughout his life. This reverence made it difficult for me to even think about accessing his personal belongings, such as his mobile phone, after his death.

When he passed, our family decided that I’d take on the responsibility of managing his phone, responding to calls from people who had his number, as it was the only way they could send their condolences.

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The value of communal support

At first, I wasn’t eager to shoulder this responsibility. The fear and respect I had for him lingered after he was gone. His phone felt like a forbidden object, a symbol of authority I’d been taught to avoid. But soon, I found a strange comfort in hearing the recordings of his voice on calls before his demise. He’d enabled the phone’s auto-record feature, so all of his calls had been recorded. As I listened to them, the voices of family and friends filled the space with familiar warmth and gave me a connection to him that brought a little peace.

What I hadn’t fully grasped during his illness, however, was the depth of care and support he’d received, especially in his final years. Through his phone, I discovered how many distant relatives and friends had reached out to him, offering words of encouragement, emotional support, and love. Even though I wasn’t there for those moments, the recordings revealed how much joy the calls brought him. I often found myself smiling as I listened to his laughter — something so rare in his later years. Those fleeting moments of lightness seemed to uplift his spirit, even if just for a brief time.

Some friends didn’t stop at offering emotional support; they also gave practical help. A few, expressing regret that they couldn’t visit, reassured him of their care and even contributed financially, which alleviated some of the overwhelming financial burden of his medical needs. These gestures became a lifeline, filling gaps we hadn’t fully anticipated.

This experience truly illuminated the essential role of community in caregiving, especially in the context of Parkinson’s disease. While much of the focus is often on managing physical symptoms and medical care, emotional and social support are just as critical. Some of these calls came from people who hadn’t seen my father in years, but their genuine concern and care were palpable. It served as a powerful reminder of the strength of human connection, even when physical proximity isn’t possible.

Growing up in the Igbo culture in Nigeria, I’ve always understood the value of communal support. But this experience deepened my understanding of just how vital it is for families to cultivate and maintain those networks. When caregiving becomes isolating, the emotional backing of friends, family, and even acquaintances can be an immense source of strength.

Though I didn’t witness in real time the impact of these calls, hearing them made me realize just how important it is for families to reach out, especially during challenging times.

In reflecting on my father’s journey, I’ve come to appreciate that caregiving isn’t just about addressing physical needs. It’s also about offering emotional comfort. Those brief moments of connection — a phone call, a shared memory, a simple expression of care — are often the threads that hold us together in the toughest of times. The support my father received from his network played a crucial role in his well-being, and in the face of so many challenges, it’s something I’ll always cherish and be deeply grateful for.

As I continue to honor my father’s memory, I urge everyone to extend that same emotional support to loved ones, particularly those battling Parkinson’s and similar illnesses. Whether it’s a phone call, a video chat, or even just a thoughtful message, your words and presence can offer immeasurable comfort. Distance is not a barrier to making a difference. It’s the emotional connection that matters.

Just as telecare helped sustain my father’s journey, your care, your outreach, can bring much-needed solace to someone you love. Remember, though, to be patient with the patient, especially when the symptoms have degenerated into significant physical decline and dementia.


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.

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