Living in the shadow of dementia

Written for Quench student mag

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.

“Despite these early signs, the official diagnosis ended up acting as a relentless and stubborn struggle for my parents”

 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, as well as 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.

“How awful is it when you are forced to sit there idly whilst you watch your parent struggling to string together a sentence?”

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.

Christmas shopping on a budget

Halloween gone, bonfire night over with, we are truly in the season of all things red, gold and snowy white. All major shops have their jolly yuletide displays firmly in place and it appears impossible to escape the frosty grips of Christmas. It’s about time to start thinking of presents. As a student relying on a student loan, this annual exchange of gifts could not come at a worse time of year. The vacant and dusty desert between the September loan drop and the January installment never felt so long and punishing. The basic necessity of food and alcohol is becoming a struggle, let alone a whole hoard of presents for your family and friends which you know they deserve. However, the truth is, if you put in time and effort and make it look pretty, no one will care or even consider the price you paid. Equally, if you’re a student like me, your family won’t be expecting you to spend much and will appreciate the thought. My main issue and downfall is that buying presents and treating my family to gifts which are personal is my favourite part of the holiday, so there is a few tricks that I use to keep down the costs.

  1. Charity shopping
Dorothy house is a hospice local to my home in Bath.

Back home I have a part time job working in a chain of charity shops around my local area. This has opened my eyes completely to the amazing bargains you can find there. A mint condition limited edition vinyl, brand-new books and pristine clothes from high end brands including Burberry, Levi’s, DKNY and Armani. The best thing about these finds is that they often come at a fraction of the price in which they were originally bought. Equally, in buying these, you are able to contribute to worthy causes which help millions of people. Similarly, if the charity is on a smaller scale, like Dorothy House Hospice, the donations are key to help it continue to support the many patients who need their urgent care. Not only does charity shopping carry all these benefits, it’s completely environmentally friendly. It allows you to turn away from fast fashion to look favourably on recycling clothes, reducing all the ails of quick and unethical production.

The list of why to charity to shop is endless and there are so many shops located around the country, it would be crazy not to give it a go

2. Edible gifts

Delia’s cakes recipe includes icing names which add a personal touch

A personal favourite gift of mine has always been a personalised gingerbread recipe taken from Delia’s cakes (above). Making this for all my friends would prove to be a successful way to include everyone at a minimum price but with maximum effort. It meant that my gift was well received due to the clear time and thought I had put into it. Other cakes and biscuits can achieve the same effect and who doesn’t enjoy a treat at Christmas?

3. Framed photos

I have found a framed photo can be an extremely thoughtful gift due to the personal aspect of it. The idea of a friend or family member wanting you to own a specially printed photo of the two of you together can be heart warming and very flattering. Boots offer an online printing service in which you can select photos to be printed and delivered directly to your door for as cheap as 10p per photo. Then all you need to buy is a photo frame. Many shops offer decent prices for pretty and good quality frames. Easy!