dying

Funerals Are Weird

~ Naomi ~ Leave a comment

Mum’s funeral was last Friday. We chose to have a small service at the crematorium in the morning followed by a larger thanksgiving service at the church in the afternoon.

I’ve been to a few funerals before now. The first I ever went to was my Grandma’s. I was only eight and all I can remember is walking into a lamppost on the way there, and hiding upstairs when everyone came round to the house afterwards. The second was my step-granddad’s. I was 14 by this point and I remember being panicked about missing a maths lesson because it was close to my first GCSE exam. The third was the funeral for my friend’s Dad. I was 17, the church was full, she sang and her brother played the piano. It was beautiful.

On Friday morning, we stood outside the crematorium for about 10-15 minutes before we went in. It was cold and people arrived in small handfuls, there were around 30 family and close friends in total. We sat there as Mum was carried in silently by six of our friends. We opted for a simple wooden coffin; we’ve never placed a huge value on ‘things’ in our household. One aunt came up with the idea of having flowers near Mum’s coffin for people to place on top if they wanted to, which nearly everyone did. I didn’t, though – I placed a letter that I had written to Mum the night before and had folded into an origami crane. Initially, I didn’t really understand the purpose of the flowers, but I found it touching to watch each person place a flower on the coffin and say their goodbyes.

2015-11-15-1447618927-2125098-IMG_3563.JPG

At the afternoon thanksgiving service, Dad and I stood with the stewards to welcome people at the door. Hundreds of people came, which we had prepared for, and I had sort of assumed I wouldn’t recognise a lot of people there. I was surprised that I knew most of them – but then Mum’s been dying for months and we’ve had a lot of visitors in and out of the house over that time. There were a few people I didn’t recognise who clearly knew me, which was a little odd, but not unexpected. Generally, it was really lovely to see people, including some we hadn’t seen in a long time.

The service involved a couple of talks, a slideshow of memories of Mum, a short sermon, two hymns and some prayers. I found out quite a bit about Mum that I didn’t know, which was actually really nice – it’s always fun to hear about your parent’s early lives! I’d put together over 300 photos to roll at the start and end of the service, too (Mum was so ginger when she was younger!).

It was a strange event. There was quite a lot of laughter and tears. I didn’t feel able to cry through either service. I don’t really do public crying, and it felt almost like our family was hosting this event for others to publicly express their sorrow and grief. My brothers didn’t cry all day, either.

We stood at the door again after the service to say goodbye to people. Lots of people say ‘I’m sorry’, but I don’t really know why because they haven’t done anything wrong and it’s not their fault that Mum died. I’m really lucky that I had some fabulous friends around me checking I was okay – it’s quite exhausting seeing, talking to, and hugging that many people. Once we were home, Dad wondered out loud how many of them we will never see again.

So, the funeral is over, Mum is cremated, and the extended family have all gone home. For the first time in weeks, there are no visitors in the house (which is a big deal when you have two or three nearly every day for months on end), and the silence is allowed to settle. Everyone is moving on with their lives. A new palliative care consultant is taking Mum’s place in the office. Her book club will continue to meet, band will continue to practice and church will continue to have coffee mornings, all without Mum.

My life is on hold a bit at the moment, I’ve taken a leave of absence from university until January. Hopefully it will give me the time I need to get my head back on the ground, reignite my passion for learning and find my motivation to attend lectures. Uni feels like a bit of a strange place right now – as Dad said to me, I’ve never been at uni without a poorly Mum. I’d previously learned to ‘maybe’ in response to every social invitation, to keep my phone on me at all times and to check in with home daily. Getting out of that mindset is going to take some re-learning.

As each day goes by, there are more things I want to tell her, and it still isn’t sinking in that I can’t. I’m just sort of wandering around attempting to complete ‘to do’ lists, and sleeping a lot. People keep telling me to just take everything one day at a time, and that’s what I’m trying to do.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/funerals-are-weird_b_8569848.html

Slow Down, Your Mum Died Last Week

~ Naomi ~ 2 Comments

Mum had terminal cancer for 20 months, and the more ill she got, the more my life changed. I went from changing pretty much nothing in my life (other than implementing a little extra support), to dropping almost everything, attending lectures sporadically, accessing a lot of extra support, and going home every night to visit Mum and the rest of my family.

Perhaps naively, I assumed that once Mum died, things would go back to normal, whatever normal may be. That’s not exactly how things have gone, though.

For one, I’d forgotten to factor in emotions. Emotions are often useful, but since Mum died the majority of the time they’ve been a nuisance. They’ve left me lying in bed on a morning trying to remember how to get dressed and what I’m doing that day. They’ve made it difficult to get to lectures or to engage in social commitments. Sometimes they make it hard to get to sleep, to write, to see people or to speak.

I keep getting really annoyed at myself for feeling unable to do things that I could do two or three years ago. I used to be super busy, incredibly active and fairly extroverted. I wouldn’t have a spare five minutes in the day – always on the go seeing someone or doing something. Some days at the moment, it’s an achievement to get up, showered, and dressed.

I hate letting my friends down. They’ve put up with so much over the past months and years when I’ve been unable to plan anything or had to cancel last minute. When I’ve fallen off the radar and stopped replying to texts and other messages, they’ve kept contacting me and inviting me to things. I want to see them all again and do fun things with them. I want to be going out on an evening, going on day trips, chilling at home and watching a film, all of the things people my age usually do. All of the things I used to do.

Since Mum got ill, I’ve had increased anxiety, too. It’s not surprising really when you’ve been through what we have over the past few years. I’ve had to adapt to Mum’s changing health and the changes that it has brought for my family. I’ve had times when any moment my phone could have rung telling me that Mum was in hospital again. When walking around the village, there was a period of time when I couldn’t leave the house without someone asking me how Mum was – all because people care, but nonetheless catching me off guard as I went about my daily life.

I’d half thought that when Mum died this would disappear, because I’d no longer be waiting on a call to hear about her health, and nobody in the village would ask me how she was because she’d be dead. It’s not quite worked out like that though, I still find myself getting anxious about things and it makes it incredibly difficult to do the things I’ve always done.

I’m getting frustrated. I feel like I shouldn’t be accessing the help I’ve needed before because Mum’s died now and I should just move on with my life. I feel like I should just be able to dive back into my degree, attend all my lectures and engage with them fully. I feel like I should be jumping back into my social life and my volunteer work and everything I did and was before Mum got diagnosed again.

Last week, I sat down with someone and was airing some of my frustrations, they looked at me and basically said “Naomi, your Mum died last week”. Mum died and my body is grieving. It’s why some days feel like sludge. It’s why I’m so tired all the time no matter how much I sleep. It’s frustrating and annoying but it’s how my life is.

I expected to feel a lot of things when Mum died. Low, sad, upset, angry, tearful, yep, but frustration was not something I expected to feel. I’m probably expecting too much too soon, in fact I expect nearly everyone around me would tell me that I’m expecting too much too soon and that I need to be kind to myself (as my Mum would say) and be patient with myself. I can see where they’re coming from and the more I try and do things and can’t, the more I realise that they’re right. I just so desperately want to be a ‘normal’ 21 year old again, and some days it can feel like that’s never going to happen.

We’re currently collecting for Yorkshire Cancer Research in Mum’s memory. If you would like to donate, please do so here.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/grief-bereavement_b_8463826.html

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

Hurt, Scared, Sad.

~ Naomi ~ Leave a comment

When I was younger, if I was hurting, my Mum or Dad would kiss it until it was better.

If I was scared, they would tell me why it wasn’t scary and leave a light on because it would stop things from feeling so terrifying. At nighttime I would hear The Archers theme tune play from their room as I fell asleep.

If I was sad they would wrap me up in their arms. I might cry and shake but they would hug me until the world settled, or until I was too exhausted to be upset any longer.
 
 
As I got a bit older, I learned that Mum and Dad couldn’t fix everything that hurt. But they could be there to listen when things went wrong, to be ranted at, to console, to hug and to hold.

If I was scared we’d talk it over, we’d work it out, we’d make it not feel so scary any more.

If I was sad I’d go to Mum and when she hugged me things would somehow seem better.
 
 
Late into my teens and life had changed a lot. I knew Mum and Dad couldn’t fix everything that hurt. But they could still stroke my hair. I could still lie on Mum’s stomach and she could tell me things would work out. We could watch something funny together and eat some chocolate and the world would seem brighter.

If I was scared at night, even at 17, I would go into their bedroom and crawl into their bed. Sometimes Dad stayed and sometimes he’d leave, but I’d sleep next to Mum until morning.

Some mornings I’d feel so sad that facing the day felt too hard and Mum would come in, give me a hug and lay my clothes out for me. She’d go downstairs and make me a bowl of cornflakes with chopped up nuts while I got dressed. She’d help me go from sad to school-ready in the space of forty minutes. A hug and a ‘see you tonight’ giving me the strength to face anything that life threw at me.
 
 
Tonight I’m sad, I’m scared and I’m hurting. I can’t crawl into Mum and Dad’s bed because that bed no longer exists. Mum’s hospital bed resides in the lounge alongside Dad’s tower of mattresses. Her hugs no longer hold the strength they once did. Nobody can tell me it will be okay because it won’t be. We will develop a new okay, in time, but we will never go back to the okay I’ve known all my life. Nights aren’t as scary as they once were, but have become long and lonely. I listen to Radio 4 short stories until I become exhausted enough to sleep. Mum can’t make me breakfast – it’s my turn now to get her food and drink when she needs it, and I like doing that. It feels right, and at least I can do something. I tried watching something funny tonight, but a cancer thing came on in the middle and made me cry. I tried eating chocolate but it doesn’t taste right and I’m not hungry at all. I sit, wrapped in a blanket which feels like a hug, stuck to my chair. If I don’t move for a while then time stands still and I can just about breathe. It’s okay, it’s okay, it’s okay.

 

Mum is Very Poorly Now

~ Naomi ~ 5 Comments

Mum is very poorly now. I went home today and she’s much like she was in February the day before she went into a coma. At that point we thought she only had hours to live, but it’s been six months since then. Looking back on it, we think it was chemo that caused the sudden dip. This time, there seems to be no obvious, reversible cause, just disease progression. Mum’s bloods are all way out. She’s very sleepy and largely immobile, but thankfully not in any pain.

It’s been a weird weekend – I slept from Friday night until Sunday morning (a mixture of illness and exhaustion I think), then went home for the majority of today. Mum has deteriorated so quickly since I last saw her a week or so ago. It’s not particularly distressing, just very sad. On the plus side, I did manage to find out which Christmas cake we make, which Christmas cake we make for my granddad, and where the list of people we buy presents for it. I even found out which mincemeat recipe we use and I don’t even like mincemeat.

I don’t know what you’re supposed to asked your Mum when you might not be able to ask her something tomorrow, or the day after. I don’t know what you’re supposed to say. I know that even when she’s asleep she likes hearing us around her talking and laughing. I know that she can still show a bit of a smile. I know that she still likes weak juice through a straw. I know that she’s still warm enough to hold. I know that she still cares about us and loves us deeply.

This week I’m going to try and manage uni alongside going home most nights. Attempting to maintain some normality in an abnormal situation. I don’t know how it’s going to go… we’ll see.

I don’t really know what else there is to say. I guess death is all a part of life. I’m going to try and sleep before I have to face tomorrow.

Not Like The Movies

~ Naomi ~ Leave a comment

Nobody tells you that terminal cancer is not like in the movies.

You can’t put your life on hold and all gather around the sick person. It doesn’t work like that. You have to carry on with life, living each day as well as you can. Never able to fully forget or let go; your hand permanently attached to your phone, waiting for the next text or phone call.

Nobody mentions that cancer isn’t linear. You can spend a weekend with an unresponsive parent; coming to terms with saying goodbye… and then they come back to life. Nobody can tell you how long they’ve got left. You always have to be prepared.

Nobody warns you that you will lose friends. Because transitioning between real life and hospital life becomes too hard. Hospital feels clinical and safe and moving back out into the world is overwhelming. They don’t warn you that you will be so tired from traveling back and forth, from holding yourself together and being there for everyone else that you forget to reply to texts. Friends become strangers.

Nobody talks about how traumatic it is. The nights spent curled up, crying, wondering if life will ever settle again. They don’t talk about how the dying person tries to leave you with bits of them. How they plan 30 years into your future whilst you’re struggling to accept the now. They don’t talk about what happens after death; when the person is gone and you have to develop a new normal.

Nobody can ever understand what it’s like, unless they’ve been through it. How your whole life can be on hold but also moving so fast. How you learn to play a part, act out a role, paint the right picture. They can never understand how much it physically and emotionally hurts, or how your whole body can cry.

Nobody warns you that it’s not like the movies. You can’t switch off when you start crying. You can’t pause it when it gets too difficult. There are no balloons, no presents from big companies, no meetings with famous people. There is just you, your family, your friends, and your loved one attempting to make some sense of a situation which has no meaning. Working together to find some peace, acceptance, and the courage to keep going.