Marie Claire Article: My Life Was Perfect… Then My Mum Died

My life has always been set out in front of me. Nursery, primary school, secondary school, possible gap year, uni, have a job, get married, produce 2.5 children and buy some pets, then watch my children go through the same system I did while I excel in my job, bake cookies on weekends, and skip off into the sunset. A nice, neat, perfect little life.

I imagine that anyone else who has grown up in a middle class family will have had similar expectations. I know many people at my secondary school had a similar life plan – lots of students achieved 11 A*s at GCSE followed by 3 A*s at A-Level. BTechs weren’t even taught and the advice was generally to study the ‘better’ subjects; sciences and maths, avoiding the ‘doss’ subjects like Art or Product Design. Following a gap year, I trotted down the uni path like everyone else.

That was where things went a little ‘off-piste’. During my first year, my Mum was diagnosed with terminal cancer. Even though Mum was ill and I visited her in hospital and things, I carried on with my studies. The amount of pressure I felt to carry on as ‘normal’ was immense. The pressure didn’t come from anyone else – everyone completely understood that things wouldn’t be ‘normal’. Instead, the pressure came from myself. I needed to fulfil the perfect blueprint that I’d always believed defined success.

With second year complete, I hobbled into third year. Mum was ill. She was dying. But little old me needed to fill this mould, so I continued to head to lectures when I could. My attendance was more sporadic than I’d have liked, and I visited Mum every night, but I kept smiling, kept attempting to read, kept trying to work out what the heck a p-value was and why it was relevant.

Then Mum died. Four days later I walked into a statistics lecture and sat ready to learn. I tried to do the maths whilst replying to texts about funeral arrangements. I was happy and ‘normal’. People commented on how ‘strong’ and ‘brave’ I was. Well done to me, big gold star for completely ignoring grief and pretending to be absolutely fine.

A week or so later, my attendance was occasional at best. People were talking about having a break and postponing graduation. I didn’t know what to do. I needed to ignore everything in my life and follow the rules and the path that have always been set out for me. I had uni telling me to consider time off, my Dad telling me that maybe after the funeral it would all be better – that my dissertation might be a ‘good distraction’. All I wanted was my Mum.

I ended up sat in front of my GP and asked her what to do. She told to take time out. So that’s what I did. I agreed to take a Leave of Absence from October to January, then complete the first term the following year and postpone graduation.

This train to ‘perfect middle class life’ was still heading to the same destination but via a different route. People understood that I needed some time; Dad thought I could work on my dissertation still while I was off, it was all good.

Then it came to coming back, and I still wasn’t ready. I was trying to work out how to live life without my Mum. I was trying to get my head around returning to studying, despite not having the concentration to read even a few pages of a book. I was trying to compute how I’d get to lectures when some days I was struggling to leave my room, or even shower. My support team felt I would do myself a disservice if I returned to uni in January, both in terms of my health and my grades. So that was that, more time out, no uni until October. No lectures, no workshops, no essays to write, none of it.

Fastforward a few months, and the train to ‘perfect middle class life’ is now so far gone I can’t see it. Making the decision not to return was one of the hardest choices I’ve ever had to make. The pressure to be ‘perfect’ and ‘invincible’ is strong.

I feel like I should show the world that cancer took Mum but won’t take me. I feel that I should just ‘get on’ with life and build myself up, bit by bit, to create this ‘perfect’ life that has always been set out for me.

My fear of failure is something I fight against every single day. To look perfect, study perfectly and have the perfect social life. But sometimes, carrying on isn’t brave – breaking that ‘perfect’ mould is. It would have been easy to stay at uni and keep attempting to go to lectures. It would have been easy to cobble together some words and hand in sub-par work. It would have been easy to break myself in order to finish my degree ‘on time’.

Taking leave means that I’ve had to find a new place to live and find something to fill my days with. It means that I’m going to return to new classes with people I don’t know. Perhaps the hardest thing about it, though, is that I have to admit to myself and the world that I’m not okay. That life has got in the way of this path I’ve always thought I had to follow. I have to face up to not just my grief, but also to the effects of seeing Mum’s health slowly decline.

I have to admit I’m not ‘perfect’ and work on myself, and admitting to that is probably one of the hardest and bravest things I have ever had to do.

Read more about Marie Claire’s #BREAKFREE from Fear campaign.

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.

If You Make One New Year’s Resolution This Year: Make It to Talk About Death

Death is something we don’t routinely talk about.

Our understanding of death changes as we grow. As a child we’re fairly open about it. We have grand ideas of our loved ones (normally pets or worms) going to a ‘happy place’ or going on ‘holiday’. Death doesn’t seem particularly scary to us, it’s just a part of life.

As we grow, our understanding grows too. We begin to learn that death means our loved one is never coming back, and start to respond to that. Some of us might then believe in reincarnation. Others hold on to ideas of heaven or an afterlife. Whatever we believe, somewhere along the line most of us learn that death is not something that’s widely talked about, and it becomes something scary and unknown.

Whether we’re scared or not, and whatever we believe, one of the few certainties in life is death; it’s going to happen to all of us at some point. In our house we’ve tended to be fairly open about it – Mum was a palliative medicine consultant, so to ignore it would’ve been to ignore Mum’s job almost entirely – but even if it’s not something you want to discuss around the dinner table, it’s something we need to talk about.

Let’s start with the medical bits. Would you wish to be resuscitated? Would you want tube feeding if you reached the stage where you couldn’t feed yourself? Would you want your child to look after you when you became immobile, or would you rather be in a nursing home?

Moving on, what about immediately after death? Would you like to be cremated of buried? Would you like a traditional funeral or something a bit different? You can’t answer these questions once you’re unconscious, or dead. The worst thing for your family would be to have a conversation with a doctor about whether to resuscitate you (if needs be) in the night, and for them to have absolutely no idea of what you would want. It’s worth thinking about these questions not just for you, but also in the context of your loved ones.

You could even chat to those closest to you about what they believe happens after death. Is the finality of death simply too much to think about, or is it important to consider it fully? Perhaps you believe that death isn’t the end, that reincarnation or an afterlife makes sense to you. I often find this conversations a lot less morbid than you’d think, and you can learn a lot about someone from their responses, and the reasons behind those responses.

There are lots of scary things in life, and I think death is one of them. But I can’t think of anything much scarier than being asked what my Dad or either of my brothers would want in this situation, and having absolutely no idea. It would destroy me.

I’m so lucky that Mum and Dad had these conversations, because in February when Mum slipped into a coma, Dad was able to tell the medical staff exactly what she wanted. When Mum died, Dad knew not to try heavy CPR to buy her a few more painful hours. Knowing what Mum wanted has saved out family so much suffering, and has given us some peace of mind.

So maybe death isn’t something you really want to think about at the start of the New Year (let’s face it, there are more fun things to think about). Perhaps you think you’re not old enough to discuss it. Maybe it’s not the most exciting of topics to chat about over a few pints, or maybe it is, but either way I challenge you to talk about it. I don’t mind how you do it, or when; it could be tomorrow or in three months’ time. Maybe it will be a short, sweet conversation, or perhaps it opens up discussions you didn’t realise you needed to have.

For more information on talking about death, check out Dying Matters, a charity who aim to help people talk more openly about death, dying and bereavement.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/new-years-resolution-talk-about-death_b_8895214.html?utm_hp_ref=uk

Submissions?

So, over the past few weeks I’ve been working on getting myself back and working out where on earth I am in life/the universe/everything (and also sleeping a lot).

Today I managed proper social contact, getting up on time, showering, clearing my desk and clearing my inboxes (not necessarily in that order), but today was definitely a ‘win’ day.

A few things have occurred to me recently and I wanted to get people’s opinions on them. I’ve had quite a lot of messages in recent times from people who have been/are in a similar situation to me. I’ve had all sorts of grand ideas and plans floating through my head, but the truth of it is, I’m not in the right head space to do any of that right at this moment.

One thing I was considering doing, is setting up a way for people to submit their stories (anonymously or not), and having a page on this blog where they’d all be held. Would anyone be up for that or interested in that?

Over time, once my degree is further/done and my head’s a little clearer, I potentially want to look at how we can promote conversations about terminal illness and about loved ones dying. I have a few ideas around it but they are literally just ideas at this stage and nothing more.

Anyway, I’ll leave it here, because I’ve got to head out and I’m sure this is long enough for today, but please let me know if submissions are something you’d be interested in reading and/or contributing 🙂

The First Days of Grief

Mum died on Friday.

She had a ‘good death’. Those in palliative medicine define a ‘good death’ as one where the dying person is symptom free, in the place they want to be, with the people they want to be with. Mum died symptom free, in our lounge, with Dad by her side.

Saying ‘Mum died’ might seem blunt to some, but that’s what happened. Mum worked in palliative medicine all of her life and as a family we’ve always spoken about death and end of life care openly and honestly, so it seems only appropriate that we continue that when discussing Mum’s death.

It’s been a few days since she died now, and everything’s a bit weird. Time seems to have become somewhat fluid and lost any sense of meaning. Hours can fly by and minutes can get stuck. It’s very strange.

You would think that after three years of cancer, and 20 months of terminal cancer, you might be somewhat prepared for the dying stage – but I don’t think anything prepares you for your Mum’s death.

When I got the call, I knew that Mum had died before Dad told me – why else would he be ringing me at 12:45 on a Friday? Everyone I then called for the rest of the day knew, too. Mum deteriorated rapidly in the two weeks before she died, so though hearing of her death still came as a shock to people, it wasn’t completely unexpected.

The rest of the day passed by in a blur of hugs, visitors, many cups of tea, phone calls, visits to people and cake. I am learning that tea and food, often in the form of cake or stew, are essentials in the ‘visiting a bereaved person’ tool kit… no complaints from our end!

Over the weekend, life was on pause. The distinction between day and night disappeared and I kept finding myself forgetting how to do basic things that I’ve known how to do since I was a toddler. I wasn’t really upset or sad, just didn’t really feel like doing much. Talking and other noises sounded very loud and I found myself being drawn to my room where I could control the sound and light levels.

It seemed strange that people were being so nice to me, and to us. The offers of help, and ‘if I can do anything let me know’ came in thick and fast, we have an amazing bunch of family and friends around us. I didn’t feel like anything had changed, though, it felt like Mum was just at work, or in hospital or something, and like she’d come back at any point.

On Monday it hit me. I woke up feeling a little fragile, but was doing okay. I went to talk to someone in my college who’s been brilliant since Mum got diagnosed, she gave me a hug, I sat in her chair and began to talk to her, and I just broke. I cried for about forty minutes. My college administrator sat next to me with a hand on my knee, moving my hair from my face like my Mum used to, and I just cried. I stayed in her office for a further hour just sitting, staring, and sometimes talking before heading to the GP who’s another person who has been outstanding and gone above and beyond more times than I can count throughout Mum’s illness. The GP had rung me on Friday afternoon and arranged to see me on Monday. I ended up crying on her, too, she’s another one who gives brilliant hugs. She gave me the time I needed, and took the time to understand what was going on and how I was doing, focussing on the basics like eating and sleeping, with a plan to see her again on Friday.

Today I’m just tired. I’ve replied to some messages, watched TV, done a few jobs, and stayed under my blanket. I’m not particularly upset or sad today, just really, really tired.

It’s going to be a while before we develop a new normal as a family of four. My Mum was incredible and developing a life without her is going to be strange. I’m learning that there is no grief rule book, no pattern that everybody follows. Everybody is hit differently, and copes in a different way – and that’s okay.

I’ve been blogging about terminal cancer for a few months now, and that journey has now ended. My journey hasn’t ended, though, and neither has my family’s. I plan to continue to write about how things go, and how everything plays out, because I think it’s important. I will not be the only one to have ever gone through this, or who will ever go through this, and I think it’s important to be able to talk about it and write about it openly and honestly.

Mum was amazing. She achieved so much and touched so many people over her 53 years. I’ve written more about her on the donation page she requested we set up in her memory. The next days, weeks, months, and years are going to be tough. But we’re incredibly lucky to have a brilliant bunch of family, friends, and other supports around us, who will help us through.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/the-first-days-of-grief_b_8403720.html

Mum Died Yesterday

Ever since I started writing about Mum’s illness, part of my brain must have known that I would have to write this post at some point, but it doesn’t make it any easier to write.

At lunchtime yesterday, Mum passed away. It was very quick and Dad was by her side.

Dad rang me at uni. Even though I knew as soon as I saw his name on my phone screen, and even though I’d known this was coming, it doesn’t make it any less of a surprise. Mum seemed a little better the night before – if not better, at least the same as the previous night, a stark difference from the rest of the week where she seemed to deteriorate noticeably every 24 hours.

A week or so ago I arranged for someone to contact a list of people who needed to know, and thankfully the whole system worked seamlessly. Within 5/10 minutes I had two welfare tutors in my room until a family friend came to take me home. My college have been amazing.

Yesterday afternoon, I walked into the lounge to see Mum for the last time. She was lying asleep on the bed. I put my hands under the duvet, found her hand, and held it, stroking her fingers like I did the night before. Holding the hand that held mine for the last 21 years. It was still warm. I put my head on the duvet and cried. Before I left, I stroked her hair and kissed her forehead just like she used to do for me whenever I was upset. It was cold.

Everything feels in slow motion today. I’m trying to remember the steps that people take each day in order to function. I keep catching myself sitting, or standing, thinking of nothing – but I’m doing okay.

I’m lucky to have an incredible bunch of people around me who are offering hugs, wise words and hot orange squash. I miss my Mum. Normally when something this upsetting happens, it’s her who I’d go to.

It has been a long 3 years since Mum was first diagnosed with cancer, and an even longer 18 months since she was diagnosed as terminal. We now have a long road ahead of us dealing with the grief that comes with Mum’s passing, but there’s no rush, and in some small way we can at least take comfort in the fact that Mum is no longer hurting. It’s time to begin to develop a new normal as a family of four.

Mummyyy

R.I.P. Mum. 24/09/62-23/10/15

No Kiss Goodnight

This week, I feel like I’ve settled into more of a routine of going home each evening. We have an amazing family friend who is taking me home and bringing me back each night and honestly, I’m so grateful. It saves a lot of tackling public transport/walking to places etc. It’s tiring all this back and forth so she’s making the world of difference.

Each night I head in and Mum’s deteriorated further. It’s stopped hitting me so much, though, I’ve become used to seeing a smaller, weaker, mum. I’ve sort of become a bit immune to it as the week has gone on. I just feel very still and flat. There are the occasional things which trip me up and make me cry, but they’re unpredictable.

Mum didn’t even try and kiss me tonight. She’s lost any energy she had. She can’t even move herself within her bed. She’s got a driver in now, to try and manage her pain. When she tries to talk she says she’s tired, despite sleeping most of the day. I don’t know how long is left. I hope it’s not long, not because I don’t love her, but because we’ve already lost her. She wasn’t even hearing everything tonight. I don’t want her to be in pain. I don’t want her to suffer. I don’t want my family to have to suffer any more, because every day that this goes on is another day that they’re watching the shell of someone they love lie in a bed too big.