Ten Tips For Surviving Uni When Someone You Love Is Dying

Packing up your bedroom and going to uni is exciting and scary whether you’re going into your first year, or subsequent years. Packing up and heading off to uni and leaving behind a parent (or other family member) who is dying brings a whole host of new challenges and worries.

My brother and I have put our heads together to try to come up with some top tips for being at uni while a loved one is dying. We’re not experts on the subject, but we have a few ideas after going through it ourselves.

I learned of Mum’s terminal diagnosis midway through my first year, my brother learned of it during his final year of school and attended a different university from me for his first year, last year. Our advice won’t suit everyone and some things will vary between universities, but we hope that these tips give you a few ideas, make you feel less alone, and put your mind at rest a little.

  1. Let the relevant people know about your situation as soon as you can. This may include pastoral care networks, college/welfare/halls tutors, those in charge of mitigating circumstances, and your academic tutor. This way, if a situation arises where you need to use these resources, it will be much easier to access the support you need, and don’t be afraid of asking for help when you do need it.
  2. Apply for mitigating circumstances if you need them. Nobody will shout at you if you end up handing a piece of work in late because your loved one was in hospital – but you need to let them know why that piece of work is in late, rather than having them assume that you’re just a ‘typical student’.
  3. Find a friend or a neighbour and let them know what’s going on. Sometimes you may need someone to help you look out for your wellbeing. It might be that they pop in every now and again and make sure you’re eating and sleeping, or make sure you engage with the more social aspects of uni from time to time if that becomes a struggle for you. Even regular Nandos visits with certain friends can be a real lifesaver – sometimes it’s important to have things to look forward to.
  4. Go to your lectures. Sometimes your mind will be full and the last thing you’ll want to do is go to a lecture. Go anyway and try to take some notes. Your mind might not be with it in that moment, but later when you come back to the work it’s better to have some rubbish notes than no notes at all.
  5. Stay in touch with your family if you can. It might be through emails, letters, phone calls, or carrier pigeon. Dad used to write me weekly letters about family life and a bit about Mum. Nowadays we mainly communicate online or by text.
  6. Find your local carers centre. See if they have a young adult carers (YAC) group. Even if they don’t have a specific YAC group, see if the carers centre can help you out. They can often provide a chance to chat with others facing similar issues and it can be really helpful.
  7. Don’t be afraid to go home. Lots of people may tell you not to go home during the first term (or at least half term) of uni, but it’s okay to want to: Your loved ones condition can change, and you may well want to spend more time with them if you can. I know I certainly had to find a balance between the fierce desire to get away from home as fast as possible with wanting to spend time with Mum while I still could It’s not an easy balance, it takes time to work it out, and it often needs reassessing, but that’s okay.
  8. Have fun! Just because somebody at home is dying, it doesn’t mean you can’t go out, it doesn’t mean you can’t drink, it doesn’t mean you can’t join a sports team, get stuck into societies or become a volunteering whizz. Make the most of uni while you’re there, it passes faster than you’d think.
  9. Don’t struggle on alone. If your grades are dropping because you’re too upset to leave your room and go to lectures, tell someone. If you’re missing deadlines due to spending time in hospital, tell someone. If you’re beginning to feel that you can’t cope, let someone know, because there are options and there are things that can be done.
  10. Look for help online. If you’re struggling with offline help, try looking for some online support. Hope Support Services offer online counselling for those who have a terminal illness in the family. Carers UK have lots of information on their site, and Marie Curie have lots of information as well as a helpline you can call. There are loads of resources out there even if they can take some digging to find. Lots of services will be local to you, so have a quick google.

Unfortunately, we can’t give you a step-by-step guide for being at uni while someone you love is ill. Every person, every diagnosis, every uni and every course is different, so we wouldn’t even know where to begin. Enjoy uni: make mistakes, stay up too late, meet new people, discover the city, perhaps even do some work(?!)…who knows that the next year might bring. The most important thing to remember is that there is no ‘right’ way to cope with terminal illness; you need to work out what’s right for you. Stay strong, and best of luck.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/freshers-week-advice_b_8203948.html

Saturday Afternoon

It’s Saturday afternoon and my Mum, Dad and brother are sat downstairs watching TV. After a few days of rain and a lot of days of grey, summer seems to have returned. The sun is shining, the birds are singing, it’s hot, there’s a nice breeze flowing through and a hum of lawnmowers in the air.

A year ago Mum would have been out in the garden tending to the vegetable patch. If she wasn’t there, she’d have been at her friend’s, playing their saxophones, baking something in our kitchen, or sitting outside with a book and a cold drink. She might have been doing the weekly shop, changing all the sheets or de-cluttering the kitchen. Whatever it was, it would have involved being on her feet, being busy, and not stopping until this evening. We probably wouldn’t have been allowed to be sat down either.

In fact on a day like today, around this time, my Mum would probably have come in from the garden, wiped her muddy hands on her gardening trousers, told my brother it was a beautiful day outside and he should get off the computer and join her out there, and gone to get a drink before heading out again (most likely dragging my brother with her). The door to the garden would remain open all day and the house would feel light and airy.

Today, the door to the garden is firmly shut and three faces stare at the TV screen. The sound of dramatic music can be heard throughout the house. None of us have ventured anywhere near the vegetable patch, we haven’t heard the saxophone in months, Dad has done the weekly shop so there are different foods in the fridge from what we were used to, and the kitchen remains somewhat cluttered.

This frustrates me. I want to walk into the lounge and shake everybody and tell them to get up and get outside and shout about what a beautiful day it is. I want to kick-start our family into moving again. Into having lunch before 2pm and getting up before lunchtime. This is not who we are and it is not what we do; we are active and engaged and busy all of the time.

Mum might not be able to do much but surely she can at least take her book outside?! (I asked Dad about this and it would involve taking her chair outside and be as much effort for Mum as walking half a street and she can only probably walk one street so realistically this isn’t so possible). Dad isn’t cancer-ridden, so surely he can do stuff? But he wants to spend Mum’s waking hours with Mum, which I guess makes perfect sense.

As for my brother, he’s young, fit and healthy, he should be doing stuff with his summer. Starting projects he’ll never finish, visiting friends, pretending to do his summer homework. I’ve thought about it though, and in a year’s time, he probably won’t be able to sit and watch TV with Mum. In fact, he probably won’t be able to in a few months/weeks. So maybe it’s okay for him to sit there with her, and maybe it’s what he needs.

And me? I’m desperately resisting this way of life, terrified that once I fall in I’ll never get out. I’m spending my summer working, revising and project-ing. I’m running every morning to get me out of the house and just keep my body moving. I’m cleaning every surface I can see (or as my Dad calls it, ‘drinking bleach’) and throwing away anything ‘unnecessary’ in my life. I bake and bake and bake and then drag my poor brother into the kitchen to do some more baking. I’m going into overdrive; a whirlwind of uni work, housework and paid work, before crashing into bed each night, absolutely exhausted.

None of us know what we’re doing. We’re all swimming in a cancer-ridden life, hoping that we won’t regret each decision we make. We are all trying to cobble together lives of ‘spending time with Mum’ and ‘carrying on as normal’, but often it’s like trying to join two pieces together from two different jigsaws. Thinking about all of this leaves me feeling frustrated, angry and upset. So I’m going to go and put that energy into making my bathroom as clean as it’s ever been. I hope you all have lovely Saturdays wherever you are, and if you’re able to, please make sure you get outside and enjoy the sunshine, even if it’s just for five minutes.

 

Podcast

I recorded a podcast a few weeks ago with podium.me who work hard to share the voices of those under 25.

It’s now been published and you can find it here.

It’s basically just me having a chat with Beth, one of their journalists, about having a parent with terminal cancer.

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