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.