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Carers Centres

~ Naomi ~ Leave a comment

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.

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

Dear Mum.

~ Naomi ~ Leave a comment

Dear Mum.

I really, really miss you.

It’s so hard having to make decisions and not having you to run them by. I can guess what you’d say, but I don’t know. I can hear your voice in my head saying ‘be kind to yourself’, but translating that into real life decisions can be tricky.

There have been lots of decisions to make lately. Whether to put an obituary in the paper, which song to put with the video of your photos, whether to bother washing my hair or whether it can wait one more day… One of the harder ones is what to wear to your funeral. I should have seen that one coming really and asked for your help in advance. I’ve always been useless at that sort of stuff. I don’t want to wear black because that seems a bit morbid, but I need to be smart. I’ve ordered a few bits online, I’m hoping that they don’t all fit/I don’t like them all because if I do I’ll be skint. I’m afraid it’s probably going to be Primark shoes, your nemesis, but some things never change!

I’ve had to make a really difficult decision today – whether or not to take a Leave of Absence from uni. It’s been mentioned by people for a few weeks, but the time has come for the decision to be made. There is no right or wrong answer on this – keep going, work hard, attend all my lectures from now on and hope my head is in it enough to pass an exam and write a 5000 word essay in January, or take a break until January, do this term next year, graduate 6 months after my peers, and hope it was all worth it.

You’ve always been good at the academic stuff and I’m struggling to motivate myself to do it without you. You’ve always read through my essay, talked to me about my subject, debated with me, been interested in my work and helped me to come to new conclusions about things. I really needed you today to help me make this decision, but you’re not here.

Today I sat down to catch up on lectures and perhaps make a start on the research proposal which was due in yesterday. I spent 3 hours listlessly flicking through lecture slides with zero motivation or energy. I think that was my answer, so after discussing it with pretty much every man and his dog, I’m taking a break.

I miss you, Mum. I keep seeing things that remind me of you, or see something in a shop and think of buying it for you then realise you’re not there and it hits me again. I think of texting you, but you wouldn’t get it. I don’t want anything big, I just want to talk to you, I miss you. I just want a hug. Or to rest my head on your stomach while you stroke my hair and we chat about the day or something medical or something else. I just really, really, miss you.

Love you lots xxx

One Week Since Mum Died

~ Naomi ~ 1 Comment

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.

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.

Mum Is Dying

~ Naomi ~ Leave a comment

I haven’t written a proper blog in a little while. I haven’t really known where to start, to be honest. The words are all there in my head but trying to untangle them and form them into coherent sentences has proved difficult. I’ve sat down to write a few times, but each time I’ll write a paragraph, get distracted by something else and end up with a mess on a page that makes no sense to myself never mind an outsider.

Mum is dying.

This isn’t news to anyone who’s read my blog before, it’s not news to anyone in my life, particularly, I mean she’s been dying for 18 months… but now she’s actually dying. Her mobility has decreased, we’ve got district nurses coming into the house, daily. The zimmer frame has been discarded at one end of the room, and the wheelchair now transports her from bed to chair and back again, when she has enough strength for us to help her move from one position to another. Words don’t come as easily to her as they once did which is strange, because Mum’s always been such an intelligent, chatty, and funny person. She still cracks jokes now, using the last of her words to make us smile.

Each time I come home, I expect to walk into her being busy in the kitchen. I expect the kitchen to smell of some kind of cooking or baking. I expect Caro Emerald to be playing as she dances while filling the dishwasher. I expect the house to be full of energy and bustle; people rushing in and out, doing things and being busy.

Instead I came home yesterday to a quieter, calmer, house. I dropped my bags off and went into the lounge to be greeted by my brother sat at the end of Mum’s bed, calmly having a chat with her as she drifted in and out of sleep. Halfway through the conversation, she fumbled for the bed controls, dropping the remote, needing my brother to retrieve it for her before she could move the bed down to take the pressure off her bones, which now protrude from her skin in places that they didn’t used to.

I spent the afternoon talking to her, sometimes with her, as she lay there semi-conscious. I found out which Christmas cake she always bakes, and found the recipe book to go with it. I asked about which one we bake for my Granddad and where the list is of who we buy presents for. Christmas is coming soon, it will be upon us before we know it, and if Mum doesn’t have the strength to carry out our traditions then I’ll have to keep them up.

Before I left I gave her a hug. Hugs are adapted now, to allow her to stay lying down. I can still feel her warmth though and know that she is still my Mum. She urges me to continue with uni and asks about my dissertation. She’s proud of all three of us and I know that she loves us unconditionally and wants what’s best for us. She’s always attacked everything in her life with all the energy she has, and in doing so has set an example for us to work hard, do our best, and strive to reach our potential every step of the way, whatever life throw at us. Whenever I was struggling with school work, she would always say ‘Aim for the stars and you might hit the chimney top, aim for the chimney top you won’t clear the roof’, so that’s what I’m continuing to do in each area of my life.

I don’t know how long Mum has left. I know that she’s tired, that she’s been battling this illness for a long time and it’s not a nice position to be in. We’re lucky because we have an amazing network of friends around us who constantly offer lifts, food, hugs, and an ear. The number of texts and messages I receive, some from people I don’t even know, is a testament to how many lives Mum has reached and how loved she is.

Mum is peaceful and pain free at the moment, and that’s all I want for now. She is loved by so many. I wish that she could recover and bustle around the kitchen again, but I’m slowly accepting that life has changed now, and the Mum who was fit and healthy has gone. In her last few days, weeks, however long it is, I just want her to be pain free, peaceful and content, if that means that we have to keep laughing and talking around her as she sleeps, then that’s what we will do.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/mum-is-dying_b_8284316.html