end of life care

Submissions?

~ Naomi ~ Leave a comment

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

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

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

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

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

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

The First Days of Grief

~ Naomi ~ 3 Comments

Mum died on Friday.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mum Died Yesterday

~ Naomi ~ 11 Comments

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

~ Naomi ~ 2 Comments

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

~ Naomi ~ 1 Comment

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.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/terminal-cancer_b_8334510.html?utm_hp_ref=uk-universities-education

Baby Steps

~ Naomi ~ Leave a comment

This morning did not go as planned. I intended to get up early, go on a run, get back, shower, head to the college house to work for a few hours before heading home. What actually happened was that I woke up exhausted, went back to bed for a few hours, work up crying, feeling like somebody had literally drained all of the energy out of the bottom of my feet along with any joy or happiness I’ve ever had… and wanted to hide from the world. Every time I closed my eyes to go back to sleep I’d be greeted with a memory of Mum which only made me cry more.

It’s days like this where I need baby steps. I check my phone and it has a million messages and it’s so overwhelming I can’t look at it. One text I could cope with, six that I haven’t responded to and it feels like too much and I can’t open the folder. I really do appreciate people texting me, and as soon as I’ve had a few deep breathes and can access it, I love reading through the messages, but that’s how difficult things feel at the moment.

I head to my iPad where things are broken up a little more and spend half an hour or so browsing through the internet, then tackled my phone and turned to getting out of bed. I decided a run wasn’t happening today, then decided that actually we should prioritise eating over getting dressed or leaving the house, for now. So once that particular task was tackled I settled at my desk to begin the day.

It’s now half one and I’m still not dressed, but I’m on top of my inbox, I’ve sorted out some banking stuff that’s been bugging me (I’ve been too scared to check my bank because I’ve paid out a lot of stuff lately and had no idea if I’d been paid back etc.), I’ve done a few other bits and bobs, and they’re all achievements on a day like today.

The next step will be getting dressed, opening the curtains and making my bed. Yesterday I tackled the clearing of the desk and the hoovering, so at least my room feels safe and calm for now. Then I’ll try and do some printing for my dissertation. Soon I need to head to town; I’ve got a shopping list from Mum and then I’ll be meeting someone who can give me a lift home where I’ll spend a few hours before heading back here again tonight.

It’s exhausting this dying Mum business, but I need to try and keep up some normality, and I need to be with my Mum, so at the moment this is how it is.

Thinking Out Loud

~ Naomi ~ Leave a comment

Pretty much all summer long I’ve been itching to move back to university; I’ve complained about the mess in the house, the lack of independence, the lack of cashpoint within fifteen minutes of the house… pretty much everything. I’ve made a home for myself in York, and the house where I grew up doesn’t feel like home anymore.

Somebody asked me last week if each time I said goodbye to my Mum I thought about whether or not it would be our last. The very quick answer to that question would be ‘no’. When Mum was first diagnosed, I did for a while, but not anymore. Can you imagine living like that for 18 months?! You’d drive yourself insane. Furthermore, any time I say goodbye to anyone it could be the last time I see them. Accidents happen all the time and we never know what life might decide to spring upon us. (It’s morbid, I know, but still true).

I think I’m struggling to accept Mum’s declining health, and I’ve got to the stage where I’m just running away from it. If I’m not at home, then Mum’s health stays where I last left it. If I’m not seeing her every day, her disease is halted in time. Without seeing her condition change, I can pretend that it doesn’t.

When I’m at home, I can blame the loneliness and isolation I often feel on living in a tiny village and not being able to drive, which limits opportunities to meet with friends. But back at uni, I’m confronted with the truth that the lonely ache I feel is for the Mum that I grew up with, and that pit in my stomach only grows if I think about the number of friends I’ve lost since Mum became more ill.

I long to be able to walk through the door and see Mum chatting away whilst unloading the dishwasher, or cleaning up after baking a cake. I have dreams where I’m walking around Tesco with her. I wish that I could go clothes shopping with her, and walk around various shops all day arguing about socks, or something equally ridiculous, and having ‘lunch’ at a coffee shop (it feels like cheating to say hot chocolate and a piece of cake count as lunch, but it was our thing, so who cares?). But I can’t do or see these things anymore, and I never will again.

After a busy morning on my first day back at uni, I sat down for a moment, and I cried. Rather than the stupid, sniffly, ‘I’m not really crying’ crying, though, I let myself go and just cried properly. Mum might not be dead, but I’m grieving right now and I’ve been grieving for a long time – grieving for the life and the Mum I once knew. The boundless energy and busy nature of Mum as I knew her when I was growing up could not be more different to the shadow of her that sits, sleeps and watches TV for most of the day nowadays.

The night before I left for uni this week, I said goodbye to Mum. She hugged me, but she is so weak and small now that it wasn’t like the hugs I’ve grown up with. I knew her arms were around me, but I barely felt it. The following morning I said goodbye again, and we had a perfectly ‘normal’ conversation, but she was still in bed (to be fair, it was half eight on a Saturday morning, but healthy Mum would have been up and about an hour or two before then).

These days I’ve gotten pretty good at fielding responses to Mum’s illness – I diplomatically answer everyone around me and aim to be positive and busy the majority of the time. When someone tells me that Mum’s illness isn’t fair, I shrug my shoulders and respond that life’s not fair. But I am angry. This disease is taking her life and our future with her and I can’t understand why it chose her. This cancer is not just taking her life, but it is affecting our family in ways that I’d never have imagined.

Anger is an important part of grief, but it’s not an emotion I find easy to cope with, especially when a lot of my anger these days is actually directed at cancer itself. I feel like this anger is useless, and won’t get me anywhere. I could let it sit and fester in me, but that would just destroy me. I have to turn it into something useful. So I channel it into the positive things I do everyday: I keep volunteering, keep campaigning, and keep trying to make the world a better place.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/terminal-cancer_b_8149226.html

I Miss Our House Being Noisy

~ Naomi ~ 1 Comment

I’m privileged enough to have had a wonderfully happy house throughout my childhood and upbringing. It’s almost always been filled with activity, music, laughter and conversation. Barely a weekend would go by when we didn’t either have someone over, or visit someone’s house, and seeing friends of my brothers or parents who I didn’t know, sat in our kitchen or lounge, was an everyday occurrence. Mum played her saxophone (or foghorn, depending who you asked), Dad would play the piano, as would my brother, my other brother, my Mum and I would dance around the kitchen to Caro Emerald whilst baking and cooking. It was certainly never quiet.

Even a year ago, you’d never have known that Mum had terminal cancer. As a palliative medicine consultant, she was working pretty much full time with people who were at the end of their lives. She didn’t look like a cancer patient. She was on hormone treatment at the time, and her hair had grown back from the chemo she’d had during her first bout of cancer just 18 months before. We’d both get up on a morning while the male members of our family were still asleep, have breakfast, chat, and head our separate ways to work. On evenings we’d both return; tired but still keeping up with any household chores that hadn’t been attended to during the day (or asking other members of our family to do them). At weekends, we’d visit people or have people over. The house would be filled with laughter and chatter.

Not anymore. When I get up on a morning now, everyone is still asleep. I get up in silence, creep around the house getting ready for my run before returning, showering, and getting ready for work as quietly as possible. I walk through the door on an evening now and I see and hear nobody. It’s silent. Sometimes I’ll get a “hello” from my brother who’s revising in the office, welcoming me home, but that’s about it. I’ll walk through the house towards the bottom of the stairs and there’s no music coming from the lounge (which is now my parent’s second bedroom, from when Mum couldn’t get upstairs). I normally pop my head into the living room to greet Mum who will be sat in her chair watching TV; she doesn’t always hear me come in. Dad’s often sat in there, too. Upstairs will be my other brother, headphones on, watching something or listening to music. He used to spend his evenings on the computer in the living room, talking to us all, and I’m not sure when that changed – though I think that’s probably a teenager thing and may well be the most normal thing around here at the moment.

It feels like Mum is fading into her chair. I know that the whole dying-and-coming-back-to-life thing was clearly going to affect her, and you’re never quite sure how that will translate. But Mum’s always been so active and so sociable. People do come round to see her, but my brother and I can’t remember the last time she left our house/garden. Also, for someone who’s always been early to bed, early to rise (and told us off if we’ve been to bed late and got up late!), she now sleeps for around 15 hours a day; going to bed really late and getting up around midday most days.

I suppose change isn’t uncommon for someone with a terminal disease, but I underestimated the extent to which it would affect our family and our house. Mum getting up late means everyone else gets up late. The lack of Mum tidying up means nobody really tidies up. Her being less active means we’re all less active. Being at home feels like wading through treacle, everything just slows down. It feels harder to revise, harder to get up on a morning, harder to get dressed. Everything feels slow and drawn out.

Even though I’m not a superfan of Harry Potter, the best way I can think to describe it is like there’s a ‘Dementor’ living with us. Entering the house, I feel smothered and devoid of energy; filled with an overwhelming sense that something is wrong. I feel uneasy, unsure, anxious and depressed. The last couple of days, all I’ve felt like doing is crying.

I don’t feel able to write a positive post this week. I feel quite low – it’s tiring trying to stay on top of everything, and some mornings I just do not want to get out of bed. When I’m at home, I do my best to stay busy, to clean, tidy and bake when I’m not revising, and to spend time with my family as much as I can. At work I throw all the energy and love I have at the kids I look after. I’m incredibly lucky to have friends who are organising things with me so I have stuff to look forward to, because that’s something I sorely need right now. I’m thankful for all those people who are looking out for me, and recognise more than ever how precious and comforting small and normal things, from my brothers making fun of me to the constant struggle to locate the garage key, can be in the midst of all of this.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/i-miss-our-house-being-noisy_b_7935278.html

Podcast

~ Naomi ~ Leave a comment

I recorded a podcast a few weeks ago with podium.me who work hard to share the voices of those under 25.

It’s now been published and you can find it here.

It’s basically just me having a chat with Beth, one of their journalists, about having a parent with terminal cancer.

Hope Is a Special but Fragile Thing

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I actively avoid thinking about the future most of the time. Part of this is because it sends me into a blinding panic of attempting to work out how I will ever get a job and afford a house and a cat (yes, it’s an essential item) and change lightbulbs and work out how to pay bills and all that terrifying “adult” stuff. I reckon these are fairly common worries for people my age… but the main reason I avoid thinking about the future is because Mum won’t be there, and why would I want to imagine or think about a life without my Mum?

This complete mental block about the future has been making life a little difficult lately. I can think a couple of days ahead, and I can put things in my diary a couple of weeks in advance if I know I’ll be able to cancel if I have to, but that’s about it. Try to imagine what it’s like to be unable to think about the future. Firm summer holiday plans are out of the question, and anything further than that is impossible: vague plans for Christmas, career or promotion ideas, dreams of living in another part of the country… Thinking about these things is a luxury that, for now, I don’t have.

It makes it hard to make good decisions daily. Only when you stop thinking about the future do you realise how much keeping it in mind affects your daily decisions. Eating healthily, exercising daily, going to bed on time, revising for an exam; in making all of these decisions, we factor in the future. If I knew I had no future beyond today, I’d probably stay up late and eat a tonne of chocolate… I definitely wouldn’t bother revising.

On Saturday, I went down to London for a session with Team v – a programme which takes 100 young people from around the country and works with them over nine months to lead three social action campaigns. I have been on the Team v programme since August 2012 (just before Mum was diagnosed the first time), starting out as a leader, and eventually graduating to be a senior mentor. This programme is the only thing which has been a constant in my life since Mum’s original diagnosis. The circumstances of my education, job, friends and family have all changed, but this has always been there and the people I have met through it are amazing.

Unfortunately, the programme is coming to an end this summer, the funding is ending. For me, and many others, this is a huge loss. In the same way that I don’t think about a future without Mum, I’ve been trying not to think of a future without Team v.

I’ve had times in the past three years when I’ve felt completely hopeless. Mum’s been ill and things have seemed dark, but because of Team v, I have stood up and spoken to a room of 100 young people excited about changing the world… it has lifted me up, and given me hope. When Mum was in hospital in February, I got a surprise bunch of flowers and a card from my Team v family, showing me that even though my friends are scattered around the country, they care about me, they’re there for me, and they understand. We have a strong bond spanning the length and breadth of the country, and despite the programme ending, that will always remain.

This Saturday, we were consolidating what we’d learned over the years we’ve been involved in the programme. We did activities which involved thinking about our own personal strengths, and speaking about the strengths and personal qualities of others. The first part of this is immensely difficult for me – like many of us, I can easily see positive qualities in others, but I struggle to see or articulate my own.

I left the day absolutely exhausted, but happy. I’m going to miss this programme so much, it’s made an incredible difference to my life (something I will write more about on my personal blog sometime over the next few weeks). But even though there will be no more leaders coming through Team v, no physical office space, and no staff working on it, it’s not disappearing completely. It will always be in my heart and in the hearts of those who’ve been involved in it. I will never forget the things I’ve learned or the people I’ve met through it. Furthermore, there are around 350 young people around the country who’ve been through the programme and who are going to continue to make a difference in their communities, and that gives me hope.

Being back with these people on Saturday gave me hope for the future for the first time in a very long time. It reminded me that though it may be a life without my Mum, there is a life waiting for me. Whatever happens outside of me, I am still me and I can still achieve amazing things. Hope and gratitude are so fragile, but so important. I am grateful for the brilliant people around me who lift me up, inspire me to hope for the future, and be the best version of myself that I can be.

TeamvMentorsDressUp

Some of the Team v mentors, never missing the opportunity to dress up or take a selfie.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/cancer-hope_b_7736224.html