Being a student carer is challenging, but you’re not alone

Photo by Sue Zeng on Unsplash

Written for The Uni Bubble

Ever since my dad was made redundant from his job in 2013, everything changed for my family. My mum had to start working full time and my brother and I had to step in with helping around the house. It wasn’t until 2018 when he was fully diagnosed with ‘dementia with neurodegenerative disease’, but it was long before that when we knew there was something seriously wrong.

Early onset dementia refers to a person who is diagnosed with dementia under the age of 65. It’s a very difficult disease to diagnose because there is so little known about it, and it can be a lot less black and white than the different varieties seen in the elderly. Equally, everyone’s experiences can vary so drastically as there’s no set timeline and each person’s progression is completely unique.

Receiving a diagnosis ended up being an uphill struggle for my parents as the consultants kept on pushing to diagnose my dad with depression due to its ability to cause memory loss in hard working individuals. After he had to stop driving, he received a diagnosis of ‘cognitive impairment with a functional component’. These long, vague words gave my father no springboard to achieve government or charity support, so we were left to our own devices. When we finally received the necessary diagnosis, containing that all important ‘d’ word, doors were opened for us. Support groups were available and memory enhancing drugs were on offer, but we had already learnt how to manage on our own.

When I left for university for the first time back in 2018, things were a lot different to how they are now. My dream had always been to go to university and study English literature and there was no way my mum would have considered asking me to stay at home to help out. She always wanted me to have as many opportunities as anyone else and to reach my full potential.

This wasn’t a problem as, in 2018, his condition was steady, and he was living a relatively busy life. With his weekly volunteering at a local national trust site and his attendance at fully equipped support groups, his brain was being frequently stimulated. My brother wasn’t working, so he was able to stay at home to keep my dad company when my mum was at work, offering priceless support. We are a very close family so, operating as a team came relatively naturally to us and we were all happy with our lives.

A local charity called YAC (young adult carers) were also a great help to me and my brother. He received frequent support from them, and we often went along to group activities where we were able to socialise with other young carers. If you’re a young carer, I would definitely recommend looking into what local support there is for you because, there’s nothing that compares to being able to speak to someone in a similar situation, especially a situation as unique a situation as mine and my brother’s.

During the first year and a half of living away from home, I didn’t consider the situation at home too intensely as I was wrapped up in my own bubble. My family were doing well at the time and I kept in regular contact and visited as often as possible. Even though I was away from home, both my mum and I found our phone calls a massive help as we could support each other from afar. Not many people can relate to our struggles or offer any valuable advice. So, for me and my mum, having each other to talk to and confide in helped to keep ourselves sane and level-headed.

The hardest thing about coming home was noticing the changes in my dad. It’s difficult to comprehend what it feels like to wonder whether the next time you see your father, he will remember who you are. His brain was getting foggier, short term memory getting worse, long term memory more confused and his every day movement was getting slower and slower. He was always really happy to see me, which was very reassuring, but with a degenerative disease like dementia, it would always make me leave wondering, what will happen next time?

The entire lockdown and coronavirus debacle significantly sped the disease up further than we could have anticipated. The lack of brain stimulation from any outside sources mixed with the confusion of the pandemic really took its toll. For someone with dementia, a whole new experience can be really challenging. The idea of social distancing and mask wearing was absolutely mind blowing for him, he just couldn’t wrap his head around it. It often made him angry and upset when we needed to be firm with him about staying away from people, he just thought we were being unreasonable.

Due to our inability to leave the house, the months spent at home were intense and I was given a whole new insight into my family’s lives. Where I would usually come home for a short period of time, I was faced with the constant reality that my family face. My mum balances work and care for my dad extremely well, but I could see that it was starting to take its toll on her mental and physical health. My brother was continuously keeping one eye out for my dad, so he was finding it harder to relax and enjoy himself. After the months I was there, I was fully brought up to speed in what I needed to do and how I could help everyone. I had been able to lift a few weights and allow everyone to relax a bit better.

I felt very guilty when I left after lockdown. After being at home for so long, I had been fully moulded into the family lifestyle and, in leaving, I felt like I was ripping myself away, leaving raw edges. I was excited to go back to uni, study and see my friends, but I didn’t want to say goodbye to my family.  The bond between us had grown so much stronger, and I wanted to be home, where they needed me. But, I had to go back to return to in person teaching and live out my last year.

I kept the family skype calls up, but unfortunately, I couldn’t visit due to the intensifying COVID situation, which made things slightly harder. I needed to put my studies first and remember that it was okay to do so. I made the choice to go to uni and I needed to commit to that. My mum wanted me to be out there living my life and having fun, so there was no need to wallow and miss being at home.

I’ve made the decision to stay at home next year, gain a qualification via distance learning, get a part time job and be there for my family. You never know how things will change, especially when it comes to a degenerative disease like dementia, so I don’t want to take my chances and be away for another year. Being a student carer is hard, but it’s important to look for what support is on offer. You never know who is there to help.

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.