Introduction 

Watching my parent decline without understanding what was happening was like witnessing a slow-motion train wreck. I was powerless to stop it, and the guilt I carry is a constant reminder of my helplessness. Being in prison during that time only added to the weight of my regret, a heavy chain that binds me to the past. As I navigate this challenging journey, I want to share my story to help others understand dementia and its impact on mental health. 

The Diagnosis: A New Reality 

The diagnosis was a punch to the gut, a harsh reality that left me breathless. Dementia, a word that was once a distant threat, had become a stark reality. I felt like I was losing my parent, piece by piece, and the anguish was overwhelming. The months that followed were a blur of medical appointments, tests, and uncertainty. Every step forward felt like two steps back, and the frustration was suffocating. 

It took months of pleading with the NHS to run tests, but eventually, we received the diagnosis: dementia. It was a relief at first, finally understanding what was happening, but then the anguish set in as I wondered what lay ahead. My parent’s condition worsened rapidly, and they began refusing to walk, talk coherently, or care for themselves. At first, I was frustrated that they wouldn’t try to walk, not realising it was more of a mental block. Afterwards, I was consumed by guilt, wondering if I could have done something differently. 

Dementia can be a challenging condition to diagnose, and it’s often misunderstood. People may attribute symptoms to old age, confusion, or fantasy talk, especially if the person with dementia has a strong interest in something, like my parent’s obsession with watching television. It’s easy to laugh off their mistakes or dismiss their concerns, but beneath the surface, something more complex is happening. As a caregiver, it’s essential to be patient, understanding, and supportive, even when the person’s reality doesn’t align with our own. 

The Emotional Toll 

Caring for a loved one with dementia is like being in a war zone. Every day, I face a new challenge, a new battle to fight. The emotional toll is immense, with feelings of guilt, anxiety, and sadness. Watching my parent’s personality change, their memories fade, and their independence slip away has been heartbreaking. I’ve felt like I’m losing myself in the process, like I’m drowning in a sea of emotions. The lack of support from the NHS and adult social services has been a constant source of frustration, leaving me feeling isolated and overwhelmed. 

Finding Strength in Vulnerability 

Despite the challenges, I’ve found ways to cope with the emotional toll of caregiving. Cherishing moments like when their face lights up talking about their first meeting with my other parent, brings me joy amidst the sorrow. These moments are bittersweet, reminding me of what’s being lost, but they also give me strength to keep going. I’ve learned to prioritise my own mental health and seek support from loved ones, which has been crucial in navigating this journey. 

Reflections on Loss and Love 

Recently, I received a voicemail from our local GP informing me that my parent had been issued with an end-of-life diagnosis. I’ll never forget the feeling of devastation and shock that washed over me as I listened to the message. What hurt even more was the fact that it was delivered in such an impersonal way, without any opportunity for me to ask questions or receive support. I wish they had taken the time to speak with me directly, to offer some guidance and compassion during this difficult time. Instead, I was left to process the news alone, feeling overwhelmed and heartbroken. I’m trying to focus on making their remaining time as comfortable and meaningful as possible, but it’s hard to come to terms with the fact that our time is running out. 

A Newfound Appreciation for My Own Strength 

Throughout this journey, I’ve discovered a strength within myself that I didn’t know I had. Despite the guilt and blame I carry, I’ve remained strong and resilient. I’ve learned to acknowledge my emotions and seek support when needed, and I’m proud of the person I’ve become. This experience has taught me that I’m capable of more than I thought, and that gives me hope for the future. 

Conclusion 

My journey with dementia has been a rollercoaster of emotions, a wild ride that has left me breathless and bewildered. However, it has also taught me the importance of love, compassion, and understanding. As I navigate this challenging path, I want to encourage others to prioritise their mental health and seek support when needed. By sharing my story, I hope to raise awareness about dementia and its impact on mental health, and offer support to those who may be walking a similar path. 


written by Darren Parker

blogger @poemstellium