Grief Doesn’t Wait For A Person To Die

Whilst walking to an appointment today, I was wondering why the ‘I need my mum [insert tears here]’ feelings had been stirring again over the last few days. Part of it is the state of my life right now. But then I realised that today marks four years since I found out that Mum had a terminal diagnosis.

One day. One conversation. One car journey. My life hasn’t been the same ever since.

‘Diagnosis day’ was a weird one. I was volunteering in Leeds (following a very early morning). Dad text me asking me where I was, which was weird, because I was at uni so he no longer ever needed to know where I was. He drove over, picked me up, and told me while he was driving. I looked out of the window. I didn’t want him to see me cry. We got home and didn’t talk about it. Mum and I took a selfie. I went back to uni later that afternoon.

My grief started that day.

It’s a difficult one to articulate. How can you grieve for a person who’s still there? How can you grieve for your old life, when nothing’s really changed (yet)? The only thing that’s changed is that you’ve received a new piece of information. Everything else is the same.

But you do start grieving. In and amongst all the oh-my-goodness-shock-confusion-trying-to-work-it-all-out, there’s grief. It’s been four years, but it’s something I’ve struggled to come to terms with. That is until I started listening to The Grief Cast podcast lately. Many episodes have people who describe their grief starting while their loved one was still alive. It’s helped me realise that it’s okay. It’s okay that my grief began that day. I’m not alone.

From the moment you find out that your loved one is dying, everything changes. I mean everything. The solid foundation of ‘Mum will always be there’ disappears from beneath your feet. You become more careless with money (can’t take it with you when you’re dead). Assignments feel pointless. Relationships develop new importance. Jobs can feel worthless. Sleep can go out of whack. Food can go a bit wonky. Every time your phone rings, you’re convinced that someone else you love is dying or has died. Your anxiety can skyrocket. You start crying at random objects. Everything changes.

You become a member of a club you never wanted to be in. Grief begins.

You grieve your old carefree life. You wish that the most important thing on your mind was still what to wear for a Friday night out. You begin to miss the person your loved one was, as you watch them fade away in front of your eyes. You watch your family change, too. Morphing into a different family from the one you grew up with, as everyone tries to work out how best to cope. You spend night after night mulling things over, crying, getting angry and bargaining with the unknown. Later on you begin to wish that your loved one would die. You can’t stand seeing them so unwell, and your life is on hold until the point of death. Then you feel guilty and angry at yourself for feeling that way. Grief is well and truly present.

We need to move away from the assumption that we can only grieve once a person is dead. We need to move away from the stereotype that grief is a whole load of crying for a while, then it’s finished and you move on. It’s damaging to have these stereotypes because it makes it so much harder when you do have to experience the reality of grief. It can also cause people to react to our grief in insensitive (and sometimes bizarre) ways.

Grief is ugly. Grief is painful. Grief is messy. Grief is unpredictable. Grief can come in waves. Grief can rear it’s ugly head unexpectedly. Grief doesn’t have a nice, neat, end point. Grief is a life-long experience that affects us from the moment it begins. And that beginning is the moment our life changes. Not necessarily the moment when person dies.

One of the couple of selfies I’ve found that we took that day.
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Can We Please Talk About Death?

My Mum died. I didn’t lose her – she was in the lounge. She didn’t pass anything, death isn’t an exam and what does ‘pass away’ even mean?! She died.

You can talk about her and mention her name without whispering it. It’s okay. I like talking about her. I like remembering her. I like hearing stories of her.

I’m sick of people treating grief like a broken eggshell. Talking about it will not cause your own parent to die. Death happens to everyone, so surely we need to work out a way to talk about it?

I posted the above on one of my social media channels the other day. I was really surprised by the response. So many bereaved children commented saying how much they agreed. They also included the awkwardness that comes when someone says ‘I’m sorry’. How do you respond to that? I always say ‘well it wasn’t your fault’, but that sounds callous. As does saying ‘well it was a long time ago’, or ‘it’s okay’.

Nobody knows how to talk about death. We resort to nonsensical euphemisms. Nobody knows how to talk about grief. People whisper. Or they blank words out of sentences. It’s awkward and uncomfortable. Death and grief seem to have become one of the biggest taboos in our society. It’s really quite odd, because death and grief happen to literally everyone, so of all the things which could be taboo, it’s a bit bizarre that death has become one of them.

Rio Ferdinand did a fantastic documentary the other week where he spoke about the death of his wife, and the grieving process that he continues to experience. He spoke about his worries for his children. He spoke about his resistance to therapy, and later his need for it. It was raw, open and honest. It was refreshing to see an honest account of grief on a national TV channel. We need more of it.

Grief is horrible and unpredictable. It will affect everyone differently, and different people will need different approaches when it comes to talking, or helping. But rather than projecting your idea of what constitutes ‘help’ onto another person – why not just ask them what they need, or what they would find helpful?

The only way we can start to break down the walls that death puts up, is to talk about it. The only way we can begin to ‘trial and error’ our way through the language surrounding death, is to begin to try, experience a few errors, and slowly work out the best way for these conversations to happen. Death and grief aren’t a big black hole that needs to be avoided at all costs. Talking to someone about it won’t make you fall in the hole and keep falling until you can’t get up.

Please ask your friends if they would like to talk about their dying family members. Please ask your friends and family if they would like to talk about their dead family members. It might be awkward and uncomfortable, especially to begin with, but death happens to all of us, and slowly, together, we can work out a way to talk about it in a more comfortable way.

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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 🙂

One Week Since Mum Died

Half past twelve today marked one week since Mum died.

It’s been a strange week. I both can’t believe it’s been a whole week since Mum died, and can’t believe it’s only been a week since Mum died. Time is weird.

As each day goes by, I am constantly amazed and humbled by people’s incredible kindness. Looking around my uni room I can see cards, letters, chocolates, flowers, and a teddy. I know that when I go home tomorrow there will be more flowers, cards and little gifts from people. I have received more hugs and offers of help than I can count. I have had texts, tweets, Facebook messages, emails, phone calls, visits, and comments on my blog. People are incredible.

I naively thought that when Mum died, life would go back to ‘normal’, but I don’t think I realised how far from ‘normal’ things had slipped. I’m slowly beginning to realise that I am going to need time, patience from both myself and others, and lots of hugs, to build myself back up again. My daily targets have gone from ‘attend all lectures, get all work in on time, do all reading and catch up on work I missed’, to ‘get up, shower, get dressed and eat something’, and as people keep telling me, that’s okay.

Some days feel like sludge. Today is a bit lighter than sludge, which is nice, but some days even breathing feels hard work, so it’s no wonder I can’t concentrate on the research proposal I need to do.

I hope that in time this will get easier, people assure me it will. Grief feels unpredictable right now, some days I feel more okay than others. People assure me that it’s okay to be like that, and for now I have to trust them because I’ve never been through this before, so that’s all I can do.

Mum has died, but I still know what she’d say in some situations, I still have our memories, I still have everything she’s taught me. I also have some fantastic friends and supports around me. Some lovely, wonderful, people who care about me and want what’s best for me. People who will let me cry to them and will listen. I’m so lucky to have these people. I’m so grateful.

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.

The Last Days of Life

Mum looks so small lying there in the big hospital bed in our lounge, surrounded by countless pillows and duvets to keep her frail frame from bruising on her mattress. Her skin has turned a shade that no foundation would ever match. Her hair is soft and greying – it never quite recovered from the chemo pumped through her body, destroying her hair, but apparently not the cancer. She rarely opens her eyes now, but still has some awareness of the conversations taking place around her. She has been peaceful most of the time, but now her lungs are fighting against her and her body tries to cough out something that doesn’t exist, rattling her from head to toe.

I wonder what it must be like for her 84-year-old father who’s fit enough to swim 40 lengths of the pool each week. Healthy enough to go on long, fast, country walks, to play table tennis and to carry all of his shopping uphill from Waitrose every few days. It’s so unnatural to watch your adult child fade away in front of your eyes and be able to do nothing but make sure that her blanket stays covering her legs. He sits by her side all day, every day, watching endless amounts of TV and doing crosswords in his newspaper.

How must it be for my Dad who’s bounced everything off my Mum for nearly 28 years? When they made those vows all those years ago, I bet they never imagined that ‘in sickness and in health’ would come to this. You can see their love through everything that he does. He cares for my Mum so sensitively. The strength he shows in holding the house together, managing visitors and medical staff, waking up next to Mum every day, preparing her medications and holding her hand, is unlike a strength I’ve seen anywhere before.

It must be strange for Mum. I can’t imagine knowing that I would never leave the house again, never go up to my bedroom again, or even into the kitchen again. She knows she’s dying, yet she receives visitors happily and joins in conversations when she can, however slurred her speech may be now. She faces the prospect of death with seemingly no fear, putting her faith in the religion she’s trusted all her life. I can’t imagine how it must feel to wonder which part of your body might fail on you next, to know that you might not live to the weekend and will never feel the sun on your skin again. Yet, she faces it with a dignity and grace that most of us can’t muster when faced with the prospect of a half-hour trip on a weird smelling bus, never mind much else.

I love my Mum with every little bit of my body; I know I do, because it hurts and aches at the moment. I want nothing more than for her to be up and about, never sitting down, like she has been for the majority of my life. There is a small part of me that still hasn’t given up hope on that one, the reality is, though, that I will never see my Mum stand unaided again, never mind run around the house, and she’s tired… we’re all tired. Despite that tiredness, though, every minute of conversation I have with her, every kiss she tries to give me, every time she opens her eyes for me, is special, because I don’t know how many more moments like that I’m going to get.

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