Features Invisible Illnesses

Invisible Illnesses I: Living in the Shadow of Dementia

Words by Sasha Nugara

Illustration by Amelia Field / @amelialfield

Dementia is such a complex disorder and despite it not being labelled as a mental illness, the effects it has on mental health are undeniable. Whilst my dad’s disease has forced him into a never-ending bout of depression, it has dropped my entire family into a whirlpool of sleepless nights and constant worry.  Although many people are aware of dementia and its unquestionable negativity, you can’t honestly comprehend its effects until you live under its shadow and watch someone deteriorate daily. No two experiences are the same when it comes to dementia, its uniqueness and unpredictability means you cannot compare anyone’s journey.

My personal experience with my father’s dementia can be pinpointed to begin the day he got made redundant from his job in 2013. The issues with his mind were persistent enough to affect his ability to work and stay focused and competitive in a corporate environment. Despite these early signs, the official diagnosis ended up acting as a relentless and stubborn struggle for my parents. There is so little known about the causes of early onset dementia and it is a lot less black and white than the different varieties seen in the elderly, so there were many forces acting against a diagnosis. In 2014 the consultants were pushing for a conclusion of depression due to its ability to cause memory loss in hardworking individuals. This must have been very serious depression for it to cause such significant memory loss… My dad was forced to stop driving and they took away his license due to the concerning behaviour he exhibited on the road. Surely this is a serious cause for concern in a man of 55? In a correspondence between consultants my dad was described as a ’55-year-old gent’ with an ‘8 year history of cognitive decline’, later followed by a diagnosis of cognitive impairment with functional component. All these long, vague words forced my father into a diagnosis which gave nothing to go on, no springboard for help. The D word was vital to access resources and medication to help him. In 2018, the diagnosis finally came in – Dementia with neurodegenerative disease. Finally, the doors opened up for him and my family. Support groups were available and memory enhancing drugs were on offer. But this 10-year struggle and the reluctance to diagnose came with possibly irreversible consequences and a whole hoard of what ifs. What if he had access to medication earlier? Would the decline have been slower? Less aggressive? What if he had been able to receive better support earlier? Ultimately, pondering on these thoughts can only add to the pain and the healthiest thing to do is to put the 10 year struggle behind us, focus on the now and, most importantly, the future. 

The issue is, the present is bleak enough before adding the future into the equation. The whole coronavirus and lockdown debacle has sped up the neurodegenerative disease more than we could have predicted. The activities my dad had been participating in were all cancelled, and he was suddenly stuck at home 24/7. The lack of brain stimulation took its toll and wore down his mind, making it apparent early on that if he didn’t keep busy, the depression he faces would increase significantly and his energy would be drained. He started to sleep most of the day, complaining about the pain in his head and body, worsened by his inability to properly voice these pains. It makes us all sad when he can’t get his words out. How awful is it when you are forced to sit there idly whilst you watch your parent struggling to string together a sentence? One of the things that has kept him going his whole life was his running. My mum always used to tell me that as soon as they went on holiday, he would be out mapping the route he was going to do later that day. Nothing could beat the high that running gave him. But now, the depression has sucked every bit of energy out of his body, including the energy in his legs that would have carried him over those roads. At the hands of dementia and depression he is unable to do one of the few things he absolutely loves. 

Dementia can leave someone as a mere outline of their former selves. I will never know what my dad was like when he was well, but my mum does a good job of describing him. He is an amazingly kind person and the repercussions of his hard work means he is still looking after us now. The most important thing to remember when talking to someone with dementia is that they are still remarkable people and to remember all the achievements and things they did with their life. My dad’s name is Tony Nugara and it will never be forgotten. 

css.php