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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Illness vs Death

People don’t realise that has horrible as Mum dying was, it’s her illness which is having such a huge effect on me at the moment.

It was seeing her slurring and seeing things on the walls, unable to eat or walk, and then getting lost in Leeds in the dark on a Friday night because I was so upset I didn’t look where I was going and before I knew it I was stuck somewhere not-so-safe. Before that I was so confident at being out and about but now if I’m out in the dark I am so anxious and it’s only made worse by noise.

It was seeing the woman I’ve always seen as so strong, capable and ‘big’ unable to even reach up to her face to scratch her cheek… having to feed her water through a sponge and wipe her face for her. Then seeing other women, who I’ve always seen as role models, crying. Leaving the room and crying. Turning away and crying. Breaking down unable to speak. Having to remain strong for them, because they needed it.

The last stages of her illness were hard, really hard… but it was the sudden deterioration 8 months prior to that which really changed everything. It was so sudden and so unexpected.

I miss my Mum a huge amount, and there is a lot to come to terms with, but it’s the illness I’m struggling to get past. I get images in my head and I can see them in front of me when I’m watching TV or walking in the street or whatever and they won’t go away. Sometimes it feels like I’m back there. I haven’t slept in my bedroom at Dad’s house since that week.

I don’t know how to deal with it or where to go with it. There are no answers or solutions. I don’t even remember it all properly (yet?) but it’s just always there.

10271626_747664941922103_6494238436515259520_nIt was seeing the woman I’ve always seen as so strong, capable and ‘big’ unable to even reach up to her face to scratch her cheek…

It’s Horrible Feeling Ill, and Worse When You Can’t Even Text Your Mum.

This weekend, I haven’t been all that well. This isn’t unheard of or anything – throughout Mum’s illness, I had a couple of periods where I fell ill. Whether it be a standard bug going round, leaving me bedbound and anti-food for a few days, an exciting late-night A&E trip with an asthma attack, or something else, I’ve become somewhat of an expert at developing odd symptoms over the past couple of years.

Whenever I was ill, I either told Mum afterwards (in the case of something short like an asthma attack), or told her but refused to let her visit. Mum’s immune system was often compromised over the course of her illness; aggressive chemotherapy does that to a person. I made sure never to do anything which could put her at risk of catching something. And even if I was ill with something that wasn’t contagious, I didn’t want to put her through the stress of seeing me ill.

This was so hard. All you want when you’re feeling rubbish is for your Mum to give you a hug and remind you there are better days ahead. To hold you together when it feels like things are falling apart… to stroke your hair, or bring you a drink, and remind you that it won’t last forever.

So keeping Mum away wasn’t ideal, but I would text her to update her on how I was doing. She was generally pretty unsympathetic, actually, unless I actually felt like I was dying (I think it’s probably a symptom of being a palliative medicine consultant). Maybe unsympathetic isn’t the right word, maybe matter-of-fact would be closer to the mark… but she would always reply, usually with kind words, happy thoughts, and often something to make me smile or laugh.

This weekend I’ve pretty much been restricted to my bed with headachey, dizzy, blergh-ness. I’ve felt pretty low in myself; I hate not being able to get out of the house, or even being able to get up and do stuff. I’ve been too exhausted to even go downstairs the majority of the time. Having wifi in bed has been a bit of a lifesaver to be honest because at least I’ve had a bit of contact with the outside world.

On Friday night I started crying because I felt so rubbish and all I wanted was Mum. I’m really lucky to have some amazing women in my life who frequently fill in as ‘stand-in Mum’ when a situation calls for it. But I think being ill is one of those times where you just want your ‘real’ Mum and no-one can fill that role, however amazing they may be and however much they might want to or try to.

I’ve stopped talking about Mum as much generally. I don’t think people want to keep hearing about it, and after a time you run out of things to say or words to explain what you’re going through. There are only so many times you can say ‘I’m hurting and it’s crap’, before even I get bored of hearing myself say it. I’m running out of words and losing the ability to express how I’m feeling, because more often than not I simply don’t know.

I know, though, that when I’m ill, all I want is Mum, and the only thing that sucks more than her not being there in person, is not even having her at the end of the phone.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/feeling-ill-when-you-cant-text-your-mum_b_9241860.html

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.

Dear Humans of Facebook

Dear Humans of Facebook.

Tonight, I noticed that my blog from last week had spiked in Facebook likes. I decided to try and find out why, so I could thank whoever had shared it.

I found the post on a Facebook page with almost 300k likes. It’s an American page and is not a charity or organisation I’ve come across before other than briefly on Twitter, but they clearly do some great work.

They’d posted it as a recommended read, and initially when I saw it, I was delighted! There are over 1200 likes and over 250 shares. I then began to read the comments, of which there were about 40. There are some people who were clearly hurt by my blog, or by life, who were angry with me, or cancer, or life (or all three) and they responded by writing their feelings (which they’re completely entitled to do) on this post.

I’m going to be honest, some of those comments really hurt me. They made me cry. They made me question myself and my writing.

Since then, I’ve had a wonderful army of friends and family message me. Some of them have responded to some of these comments, most of them have just made me laugh and cheered me up. I’ve also reasoned with the ratio of negative to positive responses. I’m fine now and I guess whenever you post things on the internet, you open yourself to criticism, but I’d like to take the time to respond to some of the sentiments expressed, because I will feel more at peace with myself once I’ve done that.

To the people telling me I’m selfish

I can totally see where you’re coming from and this is something I worry about every day. Am I being selfish? Should I give up everything I’m doing and go to stay with Mum? Should I leave uni, quit my jobs and just go home?

That was my first instinct, yes, but I’ve spoken about it with my family and we don’t believe it’s the right thing to do. We need normality. We don’t know how long Mum has left and when she was first re-diagnosed it could well have been years. I can’t spend years by her side – firstly, we’d kill each other, secondly, what good would that possibly do?! Mum is completely on board with this, one of the first things she said upon waking from the coma she was in was to tell my brother and I to go back to uni. Heck, she carried on working herself until she was in a coma. Furthermore, how are we supposed to afford to live without working? I think we’d struggle.

With regards to my writing about how I can’t plan or I can’t do certain things I might want to do, I’m not writing this to complain. I don’t feel a sense of injustice about it at all and I’m in no way angry or resentful of my Mum for being the reason I can’t do these things, I’m simply trying to explain to those who’ve not been in this situation how it impacts each area of my life.

To the people telling me I’m whining

You will find I don’t do whining. I do getting on with life. Some people actively try and get me to talk about things related to Mum and I actively don’t, unless it involves sorting something out or trying to understand something, because I’m a very solution-focused person and I don’t see the point in whinging or whining. I blog because it’s a lonely situation to be in and others are in that lonely situation to, and I have had messages from people thanking me for helping them feel less alone. I blog because there is so little out there for young adults who have parents with a terminal diagnosis, and I want to use my voice to change that. I blog because I find it cathartic.

To the person who told me I can’t spell

I’m English. We use ‘s’ rather than ‘z’ when writing the word organise. I’m sorry if that offends you too much to read my blog.

To everyone who referred to me as a caregiver

Yes, I am classed as a ‘Young Adult Carer’ according to the local carers charity, something which I’m still coming to terms with. But please remember that first and foremost, I am a daughter of an amazing woman who is dying in front of my eyes due to a really crappy disease. I am hurting, I am coping, I am trying to come to terms with things.

To everyone who told me I’m not dying

Firstly, you know nothing about my life so you don’t actually know that. That aside, I’m not dying, but my Mum is. Someone who I’ve known all my life. I’d argue that a part of me is dying because she’s been such a huge influence on me and yes, some of her will live on through me, but equally some of me will almost go with her.

To the people who told me to ‘get my priorities straight’

Mum is my #1 priority. Everything in my life is organised around that. Next week I’m working on a residential – but the staff are aware of my situation and there is a backup staff member in case I have to go home. My supervisor at uni is aware of my situation and when necessary I go home rather than staying at uni. I have missed lectures and I have had to use mitigating circumstances. I’ve had to move an exam to summer, and therefore revise all summer, because I missed some of uni to stay with Mum. I have lost touch with friends because I’ve been home rather than going out and socialising on weekends. I’ve missed their birthdays, their concerts, their celebrations and it’s amazing any of them have stuck by me to be honest! My Mum is my priority but I also have a life to live.

To the person who said they hope my Mum uses her strength to smother me while I sleep

Did you actually read what you wrote? (Also I sleep upstairs when at home and Mum can’t currently use the stairs so hopefully I’m safe for now!)

To the people who said I see my Mum’s illness as a nuisance

Yup, that’s cancer for you! It is a damn inconvenience and a pain the backside for all involved.

To the people who said I need a reality check

Every single time I see my Mum disappearing into her armchair, every time I see her knitting baby cardigans for the grandchildren she’ll never meet, every time I see the ice cream tub of medication in the bathroom, the hospital bed in the lounge, the ‘get well soon’ cards all around the house… I get a reality check. I have seen my Mum almost die and come back to life. I have fed her when she couldn’t move her arms, wiped her face when she could hardly speak, talked with her when she was seeing a dinosaur on the wall. I’ve had a lot of reality.

To the people who said ‘I’m making it all about me’

I’m writing from my point of view. I can’t write from my Mum’s point for view (or my Dad’s or my brothers). I write personally from the heart about how I’m experiencing the ups and downs of this situation. Please refer to the response about whining for why I write this blog.

To those who say they hope Mum never reads my blog

She reads whatever I post. We chat about it, we chat about a lot of things as a family. When I’m unsure about something I ask her before posting it, and I asked her before starting this blog.

To those who ask me to think how my Mum is feeling…

…having brought me up for years

My Mum is proud of me. My Mum is incredible and I hope that some of that is reflected within myself. My Mum loves spending time with me and I love spending time with her. I help around the house as much as a possibly can when I’m home (and frequently do things when I’m not, whether it be supporting other members of my family or buying suncream).

…when she doesn’t have long left

My Mum has a strong Christian faith and is incredibly peaceful. I admire her faith and her strength so much, I think it’s amazing.

Finally, to everyone who asked what it’s like being me (normally in a slightly less polite way!)

It’s damn hard a lot of the time, but also wonderfully brilliant at times because I have a loving, caring, family and some wonderful friends. I am so grateful to have so many people around me who care for me so deeply, and I never take that for granted. I am lucky that I have had time with my Mum to learn more about her, to develop our relationship, to ask her questions. Yes, I struggle and I suffer. I frequently wake through the night with thoughts, worries and flashbacks. I cry often. I get stressed. I don’t want to do into things any further then that because I select what I choose to publish online. I can assure you, though, that I am both deeply hurting, and deeply grateful for the situation I’m currently in.

I’m sorry this is so long, but I wanted to address as many points as possible. Thank you to anyone and everyone who has read it through. Thank you to all those who’ve sent me such lovely and heart-warming messages and comments. Thank you to everyone who continues to support me and thank you to everybody who has shared my writing.