Dear Friend Whose Mum’s Terminally Ill

When my Mum was first diagnosed as terminally ill, I didn’t know anybody who had been through anything similar. Even now, I know very few, but unfortunately, I have a couple of friends whose Mums have recently been diagnosed as terminally ill. Even though my Mum died less than a year ago, I still feel like I’m not sure of the right thing to do or say, but here’s a stab at getting some words written down.

Dear friend,

I know you’re scared. Whether the terminal diagnosis was a few months ago and your Mum is doing relatively well, whether it was a few weeks ago and it’s looking like this week might be her last, or whether it’s somewhere in between, I know you’re scared. You don’t know what’s going to happen with this illness. You don’t know how long you’ve got left with your Mum. You have never lived a life without your Mum, so you can’t imagine what that might be like. It’s impossible. And while all of this is going on, while your entire world is crumbling and you want to scream and shout and tell everyone you see that your Mum is dying and it’s not fair, everyone else somehow carries on as normal.

First and foremost, a terminal diagnosis is crap. There are no two ways about it. Some people will try to tell you that it will enlighten you in some way, others will tell you that your Mum has “had a good life”, many people will try to find a good or a meaning out of the bad that is a terminal diagnosis. This might be helpful for you, I don’t know, but I know that I found it incredibly frustrating and it made me feel guilty for not feeling good about anything much at all. One day a friend turned to me and said: “it’s crap, isn’t it? It’s just crap”. I found that incredibly liberating because it is crap. Your Mum being terminally ill is crap. Your Mum dying is crap. And it’s absolutely okay to feel that way.

Take selfies. Go to cafés. Go on walks. Sit and watch TV together. Just spend time with each other. They’re memories you will treasure. All of your life you’ve been making memories with your Mum, but in making those memories, it’s unlikely to have ever entered your mind that your Mum might not be there to make more memories with in future. Now you know, though, so spend time with your Mum if you can.

You might have lots of visitors – don’t be afraid to ask people to leave. Having people around is lovely. Seeing people you’ve not seen in ages is great. Giving people the chance to see your Mum is a wonderful thing to do… but you’re their child. You (and your immediate family) are your Mum’s closest family members. You get first dibs. Allow yourself some time as a family, and if you want it, allow yourself some time alone with your Mum, just you and her.

Your Mum is going to change in front of your eyes. Sometimes in ways you might expect – perhaps she will lose her hair, or gain a new scar – but she will change in ways you won’t expect, too. She will look smaller than you’ve ever seen her, sleep for more hours than she’s awake, perhaps her skin will change colour. It’s horrible, it will make you cry and you might not want to cry in front of her – but it is okay to do so if you do want to. She knows she’s changing, she knows it’s horrible, she’s your Mum – let her give you a hug.

There will be emotions you can’t name. That doesn’t mean that it’s wrong to feel them. There are no right or wrong ways to feel, there are just feelings. Emotions are scary and can hurt, but even the most intense, most painful emotion will subside eventually. (Though eventually can feel like a very long time).

There will be nights when it feels like morning will never come. There will be nights when you don’t want morning to come because you’ve finally got through another day and you’re not sure you can do it all again tomorrow. You can do this, though. I can’t tell you how you do it, but you do. You get up again the next morning and you put a smile on your face, you cry in the bathroom, you drink a cup of tea, and you get on with your day.

You don’t have to have everything figured out. You don’t need to ask your Mum anything and everything you might ever want to ask her. People kept saying to me that I had time to ‘prepare’ and that I should ask my Mum everything I might ever want to know from her. I hardly knew what I would want to ask her an hour later, never mind a year or ten years later. I don’t know whether, when trying on a wedding dress, my first question will be “does my bum look big in this”, or “does this make me look ridiculously pale”. It’s too stressful to try and think of everything you might ever want to know – there’s no way to predict the future. You might have some things you know you will want your Mum’s help with (I asked my Mum for general wedding dress advice), but you really don’t have to have everything figured out – nobody does.

You will find strength you never knew you had. Strength within yourself, strength within your friendships and strength within your family. You may lose friends, especially if you’re young when your Mum is dying because people get scared and they stop calling. But you will gain friends, too, and you will realise that some friends who you haven’t spoken to in years, are the best friends you could ever ask for.

Your faith will be shaken. Whether it is faith in a higher power, in nature, in science, in people, or simply in good, it will be shaken because there is no rhyme or reason as to why this is happening. Eventually you will find faith in the little things again; in the warmth of a cup of tea, the squishiness of a hug, the sun illuminating the orange of the leaves, or something completely different.

Do whatever you need to do. There is no rule book for this, no guide. If you want to go back to work then do it. If you want to move back to your family home, then do so. If you want to do a charity skydive, a head shave, or a fun run, then do it, celebrate it, get all of your friends and family involved. If you don’t, and you just want to sit, watch TV and get emotionally invested in fictional characters, then that is absolutely okay too.

Please remember that you are not alone. There are friends and family who are right there alongside you, but if you feel like you need help from elsewhere, there are charities like Marie Curie, Hope Support (for young people), and Carers Trust who have helplines, forums, and online chats. It’s also perfectly okay to book a GP appointment and talk things over.

I promise you that whatever you’re doing, you are doing okay. You’re living life trapped in a nightmare, but you’re still breathing in and out, still checking in on friends, cooking the occasional meal and drinking copious cups of tea. You might not think you’re doing ‘well enough’, but I promise you that you are doing just fine.

Take a deep breath, you’ve got this, and if you ever feel like you haven’t, I’m only a text away.

Lots of love,
Your friend (who doesn’t know exactly what it’s like for you but has been through something similar).

Featured: http://www.huffingtonpost.co.uk/naomibarrow/letter-terminally-ill-mum-cancer_b_12370816.html?utm_hp_ref=uk-universities-education&ir=UK+Universities+%26+Education
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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.

Carers Centres

Tonight I went to a York Carers Centre event. It was at a local Lush store; we went in, had a poke around, had the chance to make a bubble bar and face mask, got to chat to employees and buy things if we wanted. We were even given a £5 gift voucher!

One of the best things was, it was a chance to chat to people and chill out a bit, and to have a break from our caring roles. (Side note: to those of you who would comment that since Mum died, I’m no longer a carer – the carers centre support people for up to a year after their dependent has died). We spent 90 minutes just chilling, chatting, not having to worry too much or be looking after someone else.

I met a number of people tonight, all absolutely lovely people full of laughter and life, all with a caring role. You wouldn’t know that any of these people was a carer just by looking at them, or probably even by talking to them as it doesn’t usually enter conversation until someone asks ‘so who are you caring for’.

Each person I met had a different story, a different level of care they were giving, a different level to which is affected their lives. I met mothers who had children with physical, mental, or neurological disorders. Others had a nan they were caring for with dementia or cancer. Some had a parent they were caring for. The event was for those aged 16+ and I’d guess the age of those attending ranged from 16-70ish. Some were caring for more than one person. Some were in work, others studied, some were unable to work or study.

I got chatting to one girl and we were both talking about how we’d forgotten so many social skills that those our age possess. We can communicate with people, we’re not completely incompetent, we’re just not used to sitting in a coffee shop and talking for an hour without worrying about something else, for example. In fact, often, we haven’t had the brain space to even entertain these situations.

This is why events and activities like this are so important; because others who’re there ‘get it’. They understand that we might not know the latest pop. culture. They get that we might be tired or need our phones on us. We can joke about various aspects of our lives. We talk the same language. We can say something and know the other will understand and not look at us as if we’re from mars or something.

Carers centres and the work they do are so important, and we need to keep supporting them. If you’re a carer, and you think your local carers centre could help you, check out the carers.org website and see if there’s a centre near by.