How Parkinson’s dementia affected my father’s care and finances
As his family, we often needed information only his mind could provide
My father passed away in March after a long and challenging battle with Parkinson’s disease. His journey through this illness was marked by the gradual erosion of the man we once knew — a retired teacher in secondary school, renowned for his rare brilliance and innovative teaching methods, who simultaneously managed multiple demanding businesses with remarkable success.
The final chapter of his life was marred not only by physical Parkinson’s symptoms, but also by the onset of dementia. That compounded the pain and frustration for our family.
Our experience reflects the deep helplessness that loved ones of Parkinson’s patients often face as the disease progresses, especially if it progresses to dementia. The cruel reality of this condition is that it doesn’t just rob patients of their physical abilities; it can also strip away their memories, often leaving them unable to recall crucial details that could have significant implications for their physical decline and well-being.
That was the situation my family faced in the months leading to my father’s demise.
The literal costs of dementia
As his health declined, my father’s ability to remember key events and transactions deteriorated sharply. The man who once commanded respect for his sharp mind and unparalleled organizational skills began to forget important details that could’ve helped us navigate the financial burden of his mounting medical expenses.
His doctors, for example, recommended an expensive procedure, one that we knew would take a toll on us financially. Yet in his state of dementia, my father couldn’t recall the locations or even the existence of some of his valuable properties — assets that could’ve been sold to cover the costs of his care.
This realization was nothing short of heartbreaking. Knowing that my father had potential resources that could’ve eased our financial strain, yet was unable to remember them because of dementia, added a layer of sorrow to an already frustrating situation. It felt as if the key to his survival were locked away in his mind, inaccessible to both him and us.
Our family tried everything within our power to piece together the information my father could no longer provide. We searched through old records, contacted distant relatives, and revisited past conversations, all in an attempt to fill in the gaps left by his failing memory. This process was emotionally taxing; it felt as if we were racing against time, trying to salvage what we could before it was too late.
This experience underscored the cruelty of Parkinson’s disease — how it not only diminishes the body, but also cages the mind, leaving families to grapple with the consequences.
What I’ve learned
In reflecting on this journey, I’m reminded of the profound role that love played in our caregiving experience, as I discussed in a column titled “The ‘love factor’ plays a profound role in Parkinson’s caregiving.” The love we had for my father drove us to search tirelessly for solutions, to try to unlock the information he could no longer access. Yet as I explored in another column, “Hope after a deep loss: Reflections on a son’s journey with grief,” we experienced not just the grief of his passing, but also the gradual loss of the man he once was — a loss that began long before his death.
The experience has led me to think about the broader implications of dementia within the context of Parkinson’s disease. Families like ours are often left to navigate these challenges with little guidance or support. The healthcare system, while focused on managing the body, often falls short in addressing cognitive decline. There’s a pressing need for better resources and support networks to help families prepare for and manage the potential of a loved one’s dementia.
As I continue to process the loss of my father, I’m more determined than ever to turn my pain into a compassionate mission to help others facing similar challenges. The helplessness we felt in those final months shouldn’t be something that families have to endure alone.
Through my continued advocacy and support work, I hope to raise awareness of the complex needs of Parkinson’s patients and their families and to push for better systems of care that take into account the full spectrum of the disease’s impact.
I urge families facing Parkinson’s and dementia to have open and honest conversations about the future, to document important information early, and to seek out support networks that can provide guidance and assistance. While we cannot predict every twist and turn of the disease, we can strive to be as prepared as possible, holding on to the love that binds us even in the face of overwhelming challenges.
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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