Regaining Okay

Today, everyone I started uni with three years ago will hand in their final essays (and then probably go off and celebrate with a suitable amount of alcohol followed by a few days/weeks of sleep).

Taking leave from uni in October was the right thing to do. I have no doubt about that. Not going back in January was undoubtedly also the right decision at the time (albeit one which I had slightly less control over).

It doesn’t stop it being odd, though. Last week my Facebook was filled with dissertation hand-ins and this week it’s full of final hand-ins and celebrations. It feels like more than seven months since I was one of them (a living, breathing, highly caffeinated student). It feels like a lifetime ago. A lot has happened and changed in the past seven months, but it’s not just that. I really underestimated how much I was in the uni bubble, and I really underestimated how quickly I would fall out of it and feel so out of it.

Life is bringing more changes for me at the moment. I’m moving out of the place I’ve been living for five months this weekend. I’m starting a new job in the next few weeks. I’ve just finished the course I’m doing at Mind. Lots of things are changing. It’s all positive change but change nonetheless. I’ve come a long way in the past few months, but there is a long, long way still to go. I’m not working on trying to get the ‘old me’ back any more. Too much has happened and changed, and I’ve changed with it, but I’m still working on getting to a place where I have more good days than bad days, a few less ‘grief attacks’, and hopefully a lot less anxiety (something which continues to rudely interrupt my life no matter how much I tell it I’d really quite like it to disappear).

My friendships have changed, too. A lot of people who I expected to stick around haven’t, but that’s okay. It’s life. Some things some people have said or done I’ve not agreed with, but I’ve also learned to stand up to that, and I’ve learned it’s okay to leave people at a point in your life. Not everybody has to make it to your future. I’m learning to trust some of my closer friends more, and to go to them when I need them, something which is really hard to do when one of the people you always thought would be around and be there for you dies.

I don’t regret taking time out from uni. It was the right decision. It has given me space, allowed me some time to breathe, and enabled me to meet some wonderful people who I can now call my friends. I’ve really settled into a new volunteering role (which I’m hoping to keep up alongside my new job), and I would never have found it had I not arrived on their doorstep five months ago and basically spilled my life story to them and asked them if they could help me.

Even with knowing it was the right decision, it is weird seeing everyone finish and I imagine it will be weird come graduation, too. There is also a nagging voice in my head telling me I should have stuck it out and ‘just done it’ (fun little words pop up like ‘failure’ and ‘weak’). I’m trying to ignore it, though. I know that’s not the case. I’ve continued to live, continued to get up every day and do things even when they scare me, I’ve continued to work on regaining ‘okay’.

Campus Society Article: What it’s like caring for a terminally ill parent when you’re at university.

I remember the day Mum stopped being able to walk. I had to help her from her bed to her chair and wheel her to the bathroom. She could still wash herself at that point and once she’d finished I wheeled her back, found her medication and fixed her some lunch. I remember it so clearly because it was the last time I had some quality time alone with her.

I didn’t know that I was a carer until I’d been caring for over a year. Mum was diagnosed with terminal cancer during my second term of university. She died at the start of my final year.  I knew that none of my friends had a terminally ill parent, but that was about as far as my thinking went. It was only when I met someone from the charity York Carers who started asking me questions like “Do you worry about your Mum when you’re in lectures?” that I began to realise how different my student life was compared to my peers.

I didn’t think I was a carer because I still lived at university.  I hadn’t realised that a lot of things I did were things that my friends didn’t do. Like going home more a lot more often and checking in on my family every day. When going home, most of my friends would be waited on hand and foot, but even though I did still take my washing home (so much cheaper than on campus), I normally did it myself, and often ended up cleaning and cooking a fair bit too. I also didn’t appreciate the toll of emotionally supporting my family and worrying about not just Mum, but also about my Dad and brothers and how they were coping.

My caring responsibilities started slowly and increased steadily by the time Mum died, I hardly realised how far my life had shifted from that of a normal student. To begin with, it was just a matter of visiting home more often to see her. But over the course of Mum’s illness I’ve had to do many more things including visiting her in hospital, helping her drink, fetching her medication, and moving her around the house.

When she was in hospital, I occasionally missed lectures and in my second year I had to postpone my summer exam to give me enough time to catch up on all the work. I’m the eldest of three children, and the only girl, so I definitely felt some responsibility for managing the house while Dad was in hospital, transporting Mum’s family, or working.

Perhaps the biggest area of my uni life being a carer impacted was my social life. I could never commit to anything too far in advance for fear of letting people down and when I was at uni I often spent time catching up on work instead of being out with my friends. To begin with my friends were amazing. I lived in halls and we’d often crash each other’s rooms. I remember one friend arriving in my room with chocolate fingers and a film one night when I was having a particularly bad day. But in second year, as we moved out of halls and I had to go home more often, it became harder to keep those friendships up. The more time I spent at home or in hospital, the more distant I felt from uni and my friends there. I drifted from them as their lives moved on and mine stayed stuck in cancer-land. It wasn’t their fault, and whenever I do contact them or see them around they’re really supportive and still invite me to things. It’s just how it was.

Other young adult carers have shared similar experiences. Through the power of Twitter, I found two other carers with stories a bit like mine. Maariyah, a first year student at the University of Portsmouth, has been caring for her Mum for years and like me didn’t realise she was a carer for a long time, “I didn’t actually realise I was a carer until I got older and realised my role” she told me. Jane, a master’s student, has been caring for her sister for most of her life and now cares for both of her parents, too. Both Maariyah and Jane live at home and travel into university for their lectures, which in itself gives them a very different university experience from their friends, but one I instantly
recognised.

Bethany, a first year student at the University of Bedfordshire, has cared for her Mum from a young age. She lives at uni too but, like I did, travels home often.

Both Jane and Bethany mentioned how difficult it could be to socialise. Having less time to see their friends might be an obvious one, but they also spoke about not wanting to cancel plans at short notice, letting their friends down, and Bethany said “because  of my caring role I don’t like to go out much and haven’t found the confidence to have a social life at uni.”

Thankfully, all three carers receive support from their local carers organisations and Jane is also supported by her personal tutor and a lecturer. Talking about her lecturer she says “she’s been a star, I honestly believe that without her I would’ve definitely dropped out of uni. She’s been my rock throughout the last few years, she’s always there for me both academically and personally.” These supports are lifelines. Helping carers to manage the various strains on their time and providing them with occasional light relief. I can relate to this, I’ve been incredibly well supported by both my academic supervisor and my college welfare team who have constantly gone out of their way to help me out. Once I discovered I was a carer and found York Carers, I began to receive support from them too which has been invaluable.

It is estimated that there are 290,369 carers in the UK aged 16-24 but the true number is unknown because so many young adult carers may not even recognise themselves to have a caring role. Out of those who identify themselves as a young adult carer, 25% won’t tell their college or university about their caring role. It isn’t quite clear why but often it can be because they don’t know the support that could be available to them, or they are worried about the reaction of their tutors. Under the Care Act, 2014, every carer is entitled to support to help them to carry on with their life. This includes the right for every carer to receive a carer’s assessment, assessing the needs of themselves and their family to make sure that they receive the support they deserve, such as help with the caring itself, assistance with travel costs, or enabling the carer to have some time away from their caring role so that they can do something else for a while.

Despite the difficulties caring can throw up, most of us wouldn’t want our responsibilities taken away. I got a sense of pride from caring, I love my families, and would rather care for them myself than have a relative stranger do it. Being a carer, I learned a lot. I learned about the issues facing a person with limited mobility, both in their house and when trying to get out and about. I discovered how non-wheelchair-friendly many places are and found a new appreciation for anyone wheelchair-bound. I learned how to support a disabled person around their home – and about the various gadgets available to help with that. I also learned things about myself, mainly that I’m more resilient than I ever thought possible.

Every carer needs support. There’s no reason that being a carer should stop you from attending university or college, if you want to. If you think you might be entitled to carer support, go to carers.org to find your nearest carers centre.

This article originally appeared on Dorms, the online magazine of Campus Society, check it out here.

Packing Up My University Year

On Sunday, I moved out of the flat I’ve called home for the last ten months to the house I grew up in but no longer call home. A year ago, I would never have imagined I’d feel so at home in York, or so out of place in the village where I’ve spent most of my life so far.

As I was packing up my life, I noticed a few things – like all of the cards from my 21st birthday. Each card represents a person who loves me and cares about me, someone who knows that I have good times and crappy times, and who stands by me through all of it.

I took down all the letters I had stuck on my wall. I write to a few of my friends and they write to me. We support each other through the ups and downs of life, share quotes and ideas, teach each other skills and coping strategies we’ve learned. We sometimes send pictures or little items to help and guide each other through each day. These people have taken the time to sit down and pen me a letter, and those letters have been on my wall all year.

The four walls of that flat have seen so much over the last 10 months. Back in September, they saw me rush off before the first week of uni as Mum entered hospital again. They will have seen me crying late at night as I wondered if she was okay. They will have seen a repeat of that in November.

December, and they saw me getting excited for Winter Ball, trying on a new dress, learning to do my make-up. Eventually coming in far too late with a smile on my face because it had been such a good night. They will have seen a few times like this, times when I’ve been a ‘normal’ 20/21-year old – going out with my friends, coming in too late and sorting out the mess of make-up and shoes the next morning.

In February, they will have seen me disappear for a week as I went back to my parents’ house because Mum was deteriorating rapidly. They will have seen me curled up on my bed, sobbing into my teddies after that first night, because Mum was dying and there was nothing I could do. Sitting, staring at screens the following morning, jumping on every phone call. They will have seen me a week later, my world changed forever as Mum went into a coma and, for a few days, looked as if she might die. I am still so grateful for all that ensured she didn’t, but am still regularly plagued by flashbacks of those days.

In March, they will have seen me both surprised and delighted at the number of cards and messages I received for my birthday (once I’d got home from working on a residential!). They’ll have seen me read each one individually and arrange and rearrange them on my shelf. They’ll also have seen me become upset as I went to bed, realising that Mum would probably never see another birthday of mine.

In May, they will hardly have seen me. I spent most of my days working on my essays, determined to get the grades I knew I could achieve. Determined to prove wrong those people who suggested I should take a year out. Setting my heart on achieving good grades, partly for myself, and partly just in case they are the last grades of mine that Mum will ever see.

It’s now July and I’m moving out for two months. My rent is up and doesn’t re-start until September. The walls will see me take each card off my shelves with care. Prising each photograph off my noticeboard, releasing each letter from its place on my wall. Standing confused, staring at those five odd socks wondering quite where their partners have gone.

This year, York has become my home and I don’t want to leave. Mum may be ill, but while I’m in York, that fades from my mind slightly. This year I’ve made new friends, strengthened existing friendships and become distant from others. I have continued old volunteering projects and signed up to new ones, taking so many amazing opportunities which have come my way. I have grown in confidence in my job and been rewarded with increased responsibility. I have learned more about my degree subject, written assignments on interesting topics, and dragged myself through essays on not-so-interesting ones. I have chatted to my MP about getting young people voting, been part of BBC’s election coverage, brought a mental health awareness campaign to campus, raised over £400 for cancer research and started this blog.

All day as I pack up and contemplate returning to my parents’ house, one wonderful quote from my favourite wise bear, Winnie-The-Pooh, sticks in my mind: ‘How lucky I am to have something that makes saying goodbye so hard’.

2015-07-21-1437472066-5828629-IMG_2556-thumb

Featured: http://www.huffingtonpost.co.uk/naomibarrow/packing-up-my-university-year_b_7838694.html?utm_hp_ref=uk

A Rainy Sunday Afternoon

It’s finally the summer holidays (woohoo!) and while ‘summer’ is a fairly loose definition for these particular holidays, the long break tends to be welcomed by students and teachers/lecturers alike.

Today is a rainy, July, Sunday. Some might say a normal British summer day! I don’t know what you’d be doing on a day like this during the holidays but I’d usually be curled up in a blanket, watching ‘Breakfast at Tiffany’s’ and photo/video editing, knitting, crocheting or something similarly creative. I might even be working on my dissertation if I was feeling noble. Either that or I’d be baking with my brother, singing and dancing around the kitchen. I might be wasting my day on the ‘Sims’, ‘Monopoly’, or ‘Just Dance’. Basically, I would probably be doing something fun, mindless and comforting, something not too taxing; generally just chilling – the exact thing that summers are made for.

Instead, I actually let myself have a bit of a lie in for once, went on a run as I do every morning, then settled down to work. To revise for the exam I have in a few weeks.

I was joined there by my brother who is stuck behind a desk doing essays and revision. We’re both behind these desks pretty much whenever we’re not at work (or out somewhere else). For me, that means working four days a week and spending my evenings and weekends revising for my upcoming exam. My brother works three days a week and does his uni work the rest of the time. Both of us have had our education affected by Mum’s illness this year. I won’t say any more about my brother, because that’s his prerogative, but I’ll tell you a bit about how it’s affected me.

I was keeping on top of all my uni work until February, when Mum almost died. Even when I had to go home from time to time, when Mum went into hospital, I would come back and work hard to catch up with anything I’d missed, even if that meant missing social occasions or staying up late sometimes.

When Mum went into hospital and became unresponsive, I missed a few days of uni. I tried really hard to stay on top of things, and even came back for lectures when I could (home isn’t too far from uni), but I did miss a few lectures.

Now, statistics has never been my strong point. It’s not my favourite subject and if I could just see where the numbers come from, it might help, but I’ve been working hard at it all year, doing the reading, attending the lectures, spending hours after each class trying to understand the material. Standard student stuff, but it just takes me much longer for stats than my other modules!

I tried so hard to catch up on everything when I got back to uni, but I was still coming home at weekends to see Mum and the rest of my family. I was still worrying about my other family members which made it hard to concentrate on my studies. I still spent time updating friends and family on Mum’s condition and talking to various people about how we were all doing. All of these things gave me less time to catch up on everything I’d missed.

A few weeks on and we were approaching exam season. Stats builds on previous week’s work, so as soon as I missed one week, the next lecture became harder to understand and I got more and more behind. In the end, I made the decision to apply for mitigating circumstances and postpone the exam until summer. I still had all of the essays and work for my other three modules in on time, but I just knew there was no way I’d be able to learn all the content I needed to for stats before the exam.

So that brings us back to this rainy Sunday afternoon. Sat, reading a heavy statistics book, attempting to understand multiple regression. Mum asleep in the lounge, Dad watching the Tour De France, one brother baking and the other working in the same room as me.

I can’t wait for the evening of the 12th August when anyone who happens to be in York is welcome to celebrate with me for my first guilt-free night off in months and months!

Making Difficult Decisions

University is about more than just a degree. It’s about making friends, trying new things, and becoming independent. Personally, I love it. It’s given me a chance to escape from my teeny-tiny village (you can’t walk down the street without every man and his dog knowing about it the next day), and brought some fantastic opportunities. A major part of it for me has been about moving away from home. I’d taken a gap year prior to uni where I stayed at home working for various charities, and as much as I enjoyed it, I was looking forward to spreading my wings and having a chance to indulge in some self-discovery.

Despite some homesickness, I only went home a few times during the first term of my first year. By Christmas, I was more than ready for some TLC and a break from washing up but going into second term, I was determined to be more independent, go home less, and rely on my parents less. Then Mum was diagnosed, and that changed.

Half of me desperately wants to be a ‘normal’ student. To abandon my parents, make stupid mistakes and stay up too late most nights. I want to join my friends on nights out, spend weekends exploring the city and forget about my life back home.

The other half of me is different. At the time of diagnosis, Mum had somewhere between four weeks and four years to live (I know in movies they always have a definite length, but that’s not how it is in real life). My friends will probably have their parents waiting for them when they graduate. They can forget their Mum’s birthday, lob some flowers in their general direction a week later, and hope that makes up for it. If they get pregnant, they can reach for their Mum every time something freaks them out. Once their family has grown, they can visit with the grandchildren, using their parents as free babysitters (it’s cheeky, but it’s allowed, right?).

But for me it’s different. Mum probably won’t still be here when I graduate. She will probably die whilst I’m still at uni. I have to cram twenty or thirty years of visits into twenty or thirty days/weeks/months. I have to ask all my questions now; predict what I might want to know in years to come. Each birthday might be Mum’s last, so rather than forget it I want to make it special.

Should I continue to be as independent as possible and stay away from home, or should I return most weekends and spend time with my Mum? Should I spend my evenings binging on TV shows with my friends until 2am or making memories with my family? Will I regret not spending more time with Mum when she dies… or will I regret not spending more time at uni when I graduate?

There is no right or wrong answer to this. There isn’t a guidebook. There’s nobody to tell you what to do. Uni is different from school where you come home and see your Mum each night. It’s not like work where you’re home evenings and weekends (and even if you have your own house you can probably drive and visit your parents). University is an all-encompassing bubble and (for most) a once in a lifetime experience.

Every day I question my decisions and most nights I worry about whether I’m getting it ‘right’. Currently, I spend most of my time at uni, but speak to Mum on a regular basis. I go to her when I need advice or have a stupid question, and being able to do that is so wonderfully special. When I see her I cherish those moments and we take tonnes of photos.

Nothing is permanent in life and I’m lucky to have the chance to prepare for my Mum’s death where many don’t. That doesn’t make it any easier, but it’s something I have to be thankful for. Every day we all have to make decisions; some are bigger than others. I just hope I’m making the ‘right’ ones.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/terminal-cancer-planning_b_7467058.html