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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Dad: Picking Up Where We Left Off?

I was in a well-known hardware shop last week and I saw a girl who was probably about 3 or 4, being pushed around on one of those trolleys you only get in big hardware shops (they’re sort of like a platform with a handle, rather than your standard shopping trolley) by her Dad. It prompted such a clear memory of doing the same with my Dad… only instead of it being one child it would normally have been two or three. Saturday or Sunday afternoons, being pushed on one of these trolleys by my Dad, feeling like I was on Aladdin’s carpet. Everything was right in the world, I was safe with my Dad buying something exciting like wood and then we’d go home and have tea, have a bath, and go to bed listening to The Archers play on the radio in the next room.

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My relationship with my Dad has got buried somewhere in Mum’s illness and death. It got put on pause on February 8th 2014 when he text me to find out where I was (I was living at uni at the time), came and picked me up, and told me in the car that my Mum’s cancer had returned and that there was no cure. I don’t know how he ever found the words to tell me, and then to tell Mum’s’ family and friends, but he did.

Mum became ill for the first time when I was 18. Dad brought my brothers and me into the kitchen and told us about Mum’s cancer. He told us Mum had caught it early and that we shouldn’t be overly worried. We cried and hugged each other, but we were calm. I went to work that afternoon. Mum bounced back from cancer round one, and wasn’t diagnosed with terminal cancer until around 9 months later.

Once Mum was diagnosed as terminal, Dad would drive me backwards and forwards to uni, clocking up miles and miles, allowing me to continue my education as well as spending valuable time with Mum. It was Dad who learned all the biology behind Mum’s condition, Dad who learned how to care for her at every step, and Dad who became fluent in doctor-speak. It was Dad who managed all of the visitors coming in and out of our house, Dad who spent hours every day on the phone to people updating them on Mum’s condition, Dad who slept downstairs next to Mum, there for her night and day. It was Dad who was next to Mum when she died, Dad who really was there ‘til death do us part’, Dad who had to ring the GP, the coroner, and anyone else you ring when someone dies. It was Dad who rang me when Mum died, Dad who spoke to me as my world fell apart in a university stairwell, Dad who gave me a hug when I walked through the door later that day.

It’s Dad who’s left in a big house, in a small village, with three offspring and no wife.

When Mum was ill, Dad and I spoke about it a lot. At the beginning of Mum’s illness, Dad asked me to explain a few bits or bobs using my A-Level biology knowledge. As Mum’s illness progressed, Dad and I would spend half an hour in the car together between uni and home at least twice a week, which was a lot of time for talking. We would talk about Mum’s symptoms, her level of care, sometimes about what life would be like without her. We rarely talked about things that weren’t in some way related to Mum.

Mum and Dad had so many plans and so much they were looking forward to, together. Without Mum, Dad’s lost more than his ‘other half’: he’s lost his best friend, partner in crime, and confidante. They had plans to travel, to do charity work, perhaps to foster after we’d all grown up and moved out. They had other plans, ideas, hopes and dreams that I know nothing about.

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As for Dad and me, I’ve got to learn to become a daughter again. Our relationship paused two years ago, and in that time I’ve changed in so many ways and so has he. I’ve had to grow up quickly in a lot of ways, but in other ways I’ve got stuck in time. I’ve also not moved away from home in the same way as many of my peers. I’ve moved away from home physically, but I’ve got very used to going backwards and forwards on a regular basis and contacting my family multiple times a day; something which the majority of my peers definitely do not do.

Dad and I have had to start navigating this whole Dad-daughter-motherless-grief thing. He’s my Dad… but I don’t have a Mum anymore, so to some extent he’s been plonked in the role of Mum-and-Dad combined. Things I used to go to Mum for, I now either have to find a close female friend, or go to Dad. He’s got to do things he didn’t used to take sole responsibility for like remember what we have for birthday teas, or buy the odd bit of clothing.

There are times when it’s been really, really hard. Dad has never shied away from challenging me and my decisions, and as much as I love that and respect it, it can be hard when we disagree on something and I don’t have another parent to run to. Without another parent to mediate, it can then take a little while longer than it might have done to resolve anything like that. Admittedly, at times, I’ve felt like I’ve had to be a ‘Mum’ to my brothers. My Dad told me when Mum died that we should never let anyone tell us what Mum ‘would have wanted’, and that I was not my Mum, and I was not my brother’s Mum. But that can be hard; I remember things Mum did for me, like buying my favourite foods during revision periods, and I want to do the same for my brothers (this particular one resulted in a few kilos of milk bottle sweets arriving at my Dad’s house).

Working out how we all relate to each other as a family is just one more difficulty in the mountain of change that occurs when someone dies. I know that we will get there and I’m really glad we’re close enough to work through these things together.

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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

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.

Carers Are Hidden Heroes

Carers Are Hidden Heroes

At the moment, there seem to be a lot of days and weeks dedicated to raising awareness of various issues (or celebrating donuts), encouraging people to share their stories and tag their friends. But how much awareness can be raised before it all fizzles into a blur of “share this”, “read that” and “use this obscure hashtag please”?

This week is carers week. I think it’s important to highlight this because carers are amazing. They are hidden heroes who care for loved ones day and night, often without a break or a holiday away from these responsibilities.

There are almost seven million carers in the UK of all ages, genders and ethnicities and that number is rising: at some point in their life, three in five people are likely to be a carer. Currently, about 700,000 of these carers are young people – children and teenagers who are caring for a parent, sibling or someone else every single day. Though many of these children wouldn’t wish to lose this responsibility entirely, because they love the person they’re caring for, it can mean that they lose aspects of their childhood; time that should be spent playing with friends or being a kid is spent instead shouldering more responsibility than any adult could reasonably ask of a child.

You can’t tell that someone is a carer by looking. They often go unnoticed, quietly getting on with things. Many might not even recognise themselves as carers, so their friends and family are almost certainly not going to pick up on it. Despite the lack of recognition, they carry on every single day; administering medication, completing personal care, cooking, washing, cleaning, and more. All of these things would cost a fortune if a care worker had to be employed to do them, but carers do them every day with no regular wage (apart from potentially some carer’s allowance). Unlike a paid worker, there’s no annual leave, no bank holidays, and no TOIL. Carers save our country huge amounts of money by simply loving and caring for a family member or friend.

My Dad is a carer – he cares for Mum. We’re lucky in that Mum is relatively independent at the moment, she can do most things herself. But she still needs help here and there, and that’s where Dad comes in. Sometimes I imagine Mum finds it difficult to accept this help, because she’s always been incredibly independent – imagine how frustrating it must be to realise that the simple things you’ve done yourself for your whole life, the smaller things you really take for granted, you now can’t do without help.

I wouldn’t class myself as a carer; I’m at university, so the only person I’m really looking after is me. I do worry about Mum, I keep in touch with everyone at home as best I can, and I’m forever waiting for the dreaded phone call, but I don’t have any regular caring responsibilities.

When I’m home I try to help where I can: walk behind Mum when she’s walking up the stairs, help her to reach things, cook and clean, other bits and bobs like that. But I don’t see it as an ‘extra’ or ‘caring’ responsibility; I see it as part of family life. I imagine many people who are carers feel the same and that is why they so often go unnoticed.

Keep your eyes open this week (and beyond). If you know someone who is a carer, or you think someone you know might be a carer, make contact with them. It’s hard to maintain friendships when your life revolves around medication charts and routine meal times. Invite them round for coffee, or go round to theirs. Ring them for a chat, drop them a Facebook message. Don’t go overboard by any means, just initiate contact. It doesn’t cost anything but will mean the world to someone who is tirelessly caring for someone they love.

Carers are incredible, they really are. They are hidden, hardworking and humble. Please try and notice them this week. Please reach out to them. If anyone deserves an hour of your time, it’s them.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/carers-week_b_7536544.html