Tag Archives: brain injury

The invisible patient

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The invisible patient

To the woman who grabbed her children closer to her and stared at him as he spoke too loudly in the coffee shop…I’m sad for you.

To the people who have shoved past us in the supermarket or shopping centre despite his obvious mobility limitations…I hope you’re always agile and active.

To the GP who talks about him, in front of him. Describing him like a test tube subject or experimental case study…he can hear you.

To the visitors who dwindled when he didn’t ‘get better’…we understand. It’s hard, he’s hard work but I promise that you’re missing out on laughter, joy and entertainment. You’ll always be welcome if you change your minds.

To the nurse who spoke directly to him, who asked his name, explained her treatment and demonstrated patience, kindness and humour on a busy night at an out of hours walk-in centre…thank you.

To the doctor who came out of his consultation room to meet him halfway up the corridor. Who shook his hand, waited as he got muddled with his responses and made sure to get to the bottom of all of his issues (breaking the rules about ‘one issue per visit’)…thank you.

To the carer who challenges him, who doesn’t spoonfeed him and mollycoddle him, who gives him the time and patience required to force him into action…thank you.

To the man at the supermarket who refused my offer to go ahead of us as we shuffled painfully slowly in on a busy day, telling us ‘you go first mate, I’m in no rush don’t you worry’…thank you.

To our family and friends, for the funny texts on the hardest days, for the paperwork, the doctor visits, the lifts, the Christmas gifts, the moving crew, the furniture, the understanding, the patience and the overwhelming love…thank you.

To our dad, some days (like today) drive us mad. You don’t mean to, you just require a lot more energy and patience than you ever did before. You get tired and forgetful, we get tired and grumpy, we snap and you (somehow) end up being the one to say sorry. You have a beautiful heart, a cheeky sense of humour and so much love for your friends and family. You’re doing better than you’ll ever know, and even when you’re driving us round the bend…thank you.

Things my dad has taught me

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Things my dad has taught me

So I’ve talked in the past about what we’ve learned along the way since my dad’s accident. But recently I’ve realised how much my dad himself has taught (and continues to teach) me. I thought I’d share a few of them, because after a bad meeting, or a traffic jam, or a family argument; it can feel like the end of the world but my dad has changed the way I look at life.

  1. Don’t sweat the small stuff

The amount of times I’ve visited my dad after a busy and stressful day, only to walk out an hour later calm and smiling and wondering what my problem was. The things that were driving me to distraction suddenly didn’t seem important when faced with his daily struggles to even remember when to eat, or to turn the lights on when it gets dark.

  1. Keep laughing

From the moment he got his speech back, my dad has continued to be silly. I’ve said before that he’s always been silly – and one of my biggest fears was that he’d lose this sense of fun. Thankfully it’s remained, and has been the source of a series of Facebook posts like the following:

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  1. Be compassionate

My dad has every reason to be a grumpy, selfish, inconsiderate old bugger. But he’s the opposite. He notices when I’m tired. Asks what’s up if I’m quiet. Tells me to send love/congratulations/best wishes (insert greeting here) to various family members when I tell him their news. He asks how my mum is, my sister, my brother, his friends and listens when I give him updates about them. He reminds me to look outside my bubble. No matter how hard things are, it’s not OK to forget about other people.

  1. Be honest

Due to his condition, my dad doesn’t have as many inhibitions anymore. That means that sometimes, what’s in his head comes out of his mouth. Often, he realises as soon as it’s been vocalised that it was inappropriate or rude, but not before. Now, I know that it’s socially polite to frame your criticism constructively, to smile and hold the door for someone even if they do shove past you without a backwards glance; or to sit out a boring conversation in order to avoid offence. I’m not suggesting we all start spewing out exactly what’s on our minds all the time – it would be chaos and we’d cause hurt.

However, wouldn’t it be great if we could just take a leaf out of my dad’s book – just to now and then stand up when someone is only talking about themselves and walk off without a word?! To tell someone they’re being loud and it’s bothering you.

  1. Forgive

OK, so maybe in his case it’s more often than not that he doesn’t remember, rather than that he forgives. But my dad doesn’t hold grudges. And when I do have to tell him off, or I snap because frankly, I’m human and sometimes my patience wears thin; he forgives me instantly. He’s the one who apologises – he gives me a hug – reaches over to touch my arm to get my attention and says he loves me. Nothing matters enough to overshadow our precious time together. I wish I could be more like him and remember what really matters in our brief time on this planet with the people we love.

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Joining it up – health, social and benefits support

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Joining it up – health, social and benefits support

So what I’m about to say will not come as a surprise to anyone, but coordinating care and finances for an injured or vulnerable loved one is an absolute bloody nightmare.

No one party speaks to another, except you, if you’re the lucky so-and-so coordinating it. “It can’t be that bad?!” I hear you cry. It is, I assure you.

In my recent and ongoing experience, there are a couple of public bodies which you’ll need to deal with if your loved one has suffered a health set-back or injury. In my dad’s case, these are the Department of Work and Pensions (DWP), the Office of the Public Guardian (OPG), and Her Majesty’s Revenue and Customs (HMRC).

Coordinated data protection

Understandably, one can’t just call up a government agency and expect to be told absolutely everything you want to know about another person. Some validation is required. This makes absolute sense to me – it’s important that only those authorised to discuss matters of benefits, taxes, health and social care, can do so.

However, I would like to know why these agencies can’t co-ordinate with one another in order to prevent the countless phone calls, explanatory letters and frustrated swearing sessions that inevitably ensue from repeating the same story until you want to vomit.

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For example, in order to coordinate my dad’s benefit claims, I had to write to the DWP to become his appointee – meaning that DWP staff can liaise with me so that I can manage his claim on his behalf. This I duly did and my appointee-ship was granted. Hoorah! I can discuss benefits to my heart’s content with them (please read with sarcastic tone).

Next up, the HMRC, who, (despite sending a letter addressed to my dad, to my personal home address), refused to discuss him with me until I sent a letter of authority from my dad permitting them to talk to me. When I queried how, if they had no record of me as appointee, they had my address on his file, they couldn’t answer except to say that ‘it must be on record somewhere’. Clearly data is being shared. Either own up to your boo-boo, or simplify it and let my appointee-ship cover all relevant government bodies.

As another example, we submitted Power of Attorney for my dad’s health and welfare. This in itself is a monster task but we did it, and, (five months later) it was granted. Within days I had a letter from the DWP stating that the OPG had notified them of a Power of Attorney in my name for my dad, and could I please send a solicitor-ratified copy as proof. Proof?! The bloody office who granted it just told you it’s official, can’t they send a bloody copy?!

A full time job

In summary, it would be awesome if the government had one central office for anyone needing to obtain appointee status for a loved one. That appointee status could be requested, granted and accessed by all government agencies saving countless frustrating hours of discussion.

This is just the tip of the iceberg though, there are also issues with securing funding for his accommodation (see my earlier post about finding said accommodation in the first place), with securing funding (from the same local authority) for engagement activities specific to his condition, with accessing banking, managing tax returns that were due during his hospitalised recovery, and more. It’s a full time job for a specialist secretary, and instead my family is handling it around our full time jobs, our families, and our lives. Don’t get me wrong, I don’t resent him for it and I’ll fight as hard as I need to, to make sure he gets everything he deserves and needs to be comfortable and happy.

It does make me wonder though, what happens to the people without families? Who fights for them?

One of the answers is, the third sector. With that in mind, I’m finishing with a personal plea. My brother is running the Virgin Money London Marathon this April for Headway, a charity which provides much-needed support to brain injury survivors and their families. They’re currently battling for funding so my dad can attend a regular activity group with other people in a similar situation. If you have a spare £5, it would be going to a really worthy cause: http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=DaveAndHeadway&faId=605137&isTeam=false

Dave marathon

 

Dear Daddy, happy anniversary

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Dear Daddy, happy anniversary

Dear Daddy,

This time a year ago all of our lives changed – yours the most. Thanks to a little too much John Smiths and a freak fall down the stairs, you changed. I’ve half written this post so many times over the last year. But I’ve had to stop because it just became so depressing. I can’t promise that this won’t be sad and angry, and confused, but I wanted to say to you (virtually) all the things that have gone through my head in the last 12 months.

I miss you. I spout the wise line that I’m grateful you survived, that we still have some version of you. And that is undoubtedly true. But it doesn’t mean that in my more selfish moments I don’t wish desperately for my original dad. You were my rock, my fount of solid, grounded wisdom when I was getting over-emotional, and most importantly, my best friend. While you still make me smile when I’m sad, and you still give the best hugs; the wisdom and the friendly texts are gone. Even a year later, I’ll be having a bad day, or I’ll have something funny to tell you and I’ll remember suddenly that the old you is gone. It’s like grief that never ends. It spins in a circle from heartbreak, to anger, to guilt that I dared to miss you when I still have you. Don’t misunderstand me, I am incredibly grateful that you’re still in my life. But I miss pre-accident-you so much sometimes it’s physically painful.

What if? What if you’d decided to just go home and sleep the day after the wedding? What if I’d thought more of it when you didn’t send me a ‘have a nice honeymoon’ text, and had checked on you? What if we’d asked you for dinner the night before honeymoon instead of our friends? As pointless as it is, I don’t think we’ll ever stop asking these questions. I know it’s childish but I wish so desperately for a Marty Mcfly car to go back to the day after the wedding and stick to you like glue.

Please stop worrying. We are where we are, and none of us see you as a burden. You’re our dad and we’re only doing the same you’d have done if one of us had suffered an injury. I know you and me are peas in a pod, and telling us not to worry is like telling us not to breathe, but please try. Goodness knows you’ve got enough to process as you continue to recover and adjust without worrying about us. We’re big enough, ugly enough, and well-supported enough to take care of ourselves. Please just be happy.

Thank you. Thank you for being so incredible. For being the ray of sunshine in my life every week. For reducing my over-dramatised life back to the simple and important. For loving us even though we’re imperfect, and can’t visit every day, and are sometimes tired or grumpy. Thank you for giving us the most beautiful childhood memories that we treasure and re-share with you even today. Thank you for being everything a dad should be. Thankyou for loving us all.

This could be a really sad anniversary for us all, but I’m not going to let that happen – having you here should be celebrated!

This year I’m in Jersey for my first wedding anniversary, so I’m going to head to the beach, run in the sea, and celebrate my dad. And I’m going to urge Dave and Tam to celebrate you in an equally silly and fun way. Whatever dark thoughts creep in sometimes, you’re here. You’re funny, and kind, and loving and cheeky and ours. We’re incredibly lucky. Happy anniversary Daddy – thanks for fighting.

Bomps xxxx

hilary and andy

Procuring a placement for AC aka finding a home for my Dad

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Procuring a placement for AC aka finding a home for my Dad

Yep that’s right ladies and gents, I’m back on my dad again. Switch off now if you’re not interested. Hopefully you are though, because he’s awesome.

So his discharge date should have been 8 May from neuro rehab, where he’s flourished – he can now eat, walk and have conversations with very little support. We’re incredibly grateful to all of the staff at West Kent Neuro Rehab Unit (The Knole Centre) in Sevenoaks. Personally, if it was appropriate, I’d hug them all, all of the time.

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However, they’ve done all they can for a man with substantial long term and permanent brain damage, so it’s time to free up the bed for someone else’s dad, mum or significant other. That was the plan anyway. Sadly, the social care system has failed my dad in meeting this aim. And so, three months past discharge date, my dad is still in rehab, where he’s understandably bored, fed up and increasingly agitated (the daily phone calls to me and my siblings have restarted).

So three months ago we met with his case manager from the local social care team. He was a great guy, who’d taken the time prior to the meeting (with us and the team at the Knole Centre) to sit with my dad and better understand his needs and capacity for various daily tasks. He explained from the off that he was an interim but that as soon as the incumbent returned from long-term sick, she’d simply pick up his notes and the case would progress seamlessly. He was wrong.

The incumbent didn’t return – obviously we don’t blame her for that and I wish her well. Instead we were placed with a new care manager, who insisted she start the process from scratch again. We took a deep breath but decided that we weren’t that far down the road, so agreed a first meeting. Despite a very clear request that it take place on a date (I gave her a list) that one of the family could attend, she booked it on a day none of us could make it. Not a good start.

My mum (superhero extraordinaire) cleared her morning and squeezed in time to attend. It did not go well. The case manager made sweeping statements about my dad’s capacity (if you understand the Mental Capacity Act, you’ll know how wrong this is), despite having never met him. She was also rude, discourteous and refused to listen to members of my dad’s current rehab team.

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Nonetheless, we took it on the chin and concentrated on my dad. Eventually, a couple of weeks later, we received a list of three homes which ‘Purchasing’ (she regularly refers to this mystical team and to monies, and very rarely to my dad as an individual, human being) had approved for him. She also forwarded some kind of tender document, which made my dad sound like a waste disposal contract.

We hurriedly booked in a  Sunday when me, my siblings and my dad could all attend to visit the three homes. They were all dementia-focussed with an average age of 80 but since we didn’t understand the system, we naively assumed they had been deemed appropriate for his needs, and picked the one Daddy seemed happiest with, and that we felt was the most caring, understanding, clean, and supportive. They assessed him the following week, and gave me a call to explain that they were really unsure about taking my dad, who has significant social and engagement needs which simply wouldn’t be met in a home for older people with progressive dementias.

And so back to the drawing board. Where we argued, (over and over and over) that a dementia-focussed home simply wasn’t for Daddy. We were supported by a report from his current team, who agreed that he needed non-dementia-focussed residential care with regular social interaction.

To speed the process up, I researched local homes myself and sent them back to the case manager. None fit the bill, two because they’re ‘out of area’ (South East London instead of North Kent) – and there’s me thinking we lived in a country proud of its integrated, joined-up and patient centred approach. What a silly sausage.

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Eventually we and my dad’s consultant suggested a place in Ashford, It’s specifically for people with long term neurological conditions or damage as the effect of an acquired brain injury. It offers further rehabilitation if appropriate, interaction, activities and trips. We all had our reservations as its location would mean fewer family visits in the week, but hopefully the engagement programme would outweigh those….Nope, it doesn’t fit within ‘Purchasing’s’ funding bracket for ‘AC’. In fact, could we top it up by £700 a week? Errrrm, no.

And so, we’re hoping it’s third time lucky. We were given yet another list (this time only two homes) and local to my dad’s home town. One was a nursing care home, and therefore completely inappropriate. One was a dementia-focussed centre. However, a very kind care manager at one of these inappropriate homes suggested a local residential home. So we dropped in unannounced, at teatime, on a Friday night. Despite our bad timing, the manager on duty was kind, introduced herself to my dad, and answered our (well-practiced) questions. The age range of patients was still older but she noted that they have 2 or 3 gentlemen in my dad’s age bracket. The building was beautiful. Every patient we met was smiling, the staff all said hello. The rooms were clean. The grounds were gorgeous. It was local. My dad said he liked it best because “I felt comfortable in there, love”.

I don’t know what will happen next, and I’ve become too battle-weary to get my hopes up. Next week we’ll send off a request for funding for this home. They’ve definitely got a room that’s available for social care funding, and fits within my dad’s ‘price bracket’ (he’s worth about £440 per week, in case you wondered). To us though, he’s priceless and while I’m sorry he’s holding up a specialist rehab bed while we do battle with social services; I’m also not letting him budge until we find a place where he’s happy.

He’s not a contract, he’s not a number, and he’s not just some ‘thick’ brain damaged patient. He’s our Daddy and he has social care needs, yes; but more importantly he has a personality, a sense of humour, a huge heart, and a right to live in a friendly, fun, caring and supportive environment.

We won’t rest (literally in most of our cases) until we see him settled somewhere, waving goodbye after we visit, with a huge smile on his face. And after that, we’ll write a reeeeeeeeeally comprehensive complaint…

Facing the challenge: A brave, new dad

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Facing the challenge: A brave, new dad

Unsurprisingly, this post is about my dad. I don’t mean to sound like a broken record, but he’s pretty much front and centre every day. In previous posts, I’ve focussed on my Grandma, my mum, and my siblings but there’s very little about my dad. So I figured it was high time. I’m only sorry that his accident and injuries are the catalyst.

My dad is my best friend. I know that it’s easy to see relationships through the rosy perspective of hindsight when something traumatic happens, but my dad genuinely is my best mate. Always has been. Before his recent accident I’d talk to him every day – he’d send me texts about the Dartford Crossing traffic (always handy to have a cabbie as your dad), ring me about our friends at the pub or to share some family gossip, and check up on me if he knew I had a big presentation, or if I was feeling poorly.  He’d also send stupid jokes, let me know what he was up to and text me goodnight. Rarely a day went by without hearing from him. So the accident hasn’t really taken my father away from me in the traditional sense, it’s taken my right arm.

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It’s been two months but every day I have a forgetful moment and see or hear something I want to share, pick up the phone then remember he isn’t on the other end. I talk a good talk about being de-sensitised to his condition, about being open-minded when I visit and knowing that I might not always get the best version of Daddy. But honestly, when I walk in and see him yammering away about nonsense, it’s heartbreaking. A teeny tiny part of me will always be about six years old, desperately hopeful that everything will have magically fixed itself overnight. Unfortunately, six year old me is always disappointed.

Google Translate, for Dads

It’s like someone removed one of the circuit boards in his incredibly intelligent head. The words are there but in the wrong context and the wrong order. We’ve all become expert translators. Half-baked sentences like “Get some fish, get some chips, get one chips and some chips. Then you can come back” translate to “I’m hungry – sort it out”. The other day, he was really agitated – very upset and tearful and repeatedly begging me to help him. I stroked his hair, held his hand and told him “You’re my best mate. I’m not going to let anything happen to you”. He replied with “You’re my one, always”. Maybe I’m naive, but I took that as a declaration of our status as bessie mates. No friendship bracelets or blood oaths needed.

He’s started swearing, with no concern for the consequences – something really out of character for our mild-mannered dad. We’ve had to learn to laugh. What else can you do when he (loudly) declares that a passing nurse or doctor is an “Arsehole!” but sheepishly apologise and giggle? Today I asked him what hurt, “My head and my arse!” he shouted in response. Thanks for that, Daddy.

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Some moments he’s clearly lucid, he tells us what hurts and asks us to help him. You’d imagine that these were the best moments, when we get a smidgen of Daddy back. But weirdly, they’re actually the hardest. What do you say to your neurologically confused dad when his eyes well up and he asks you to help him, as if he’s a toddler? It’s hard to celebrate his recovery when he asks you what year it is and tells you he’s “mixed and muddled” when you give him the answer. Or when he seems more aware of his surroundings and shouts that he wants to go home for the duration of your two hour visit.

Not just a patient

But that’s now, and my dad hasn’t always been a brain injury patient. He has, however, always been crazy. My parents split up when I was about 4 or 5. They did it pretty amicably and are good friends, so I’ve never struggled with seeing him or staying in contact. Our weekends with him as kids were hilarious.

We had midnight feasts when he woke us up with a pile of chocolate (I’m sure it wasn’t actually midnight) and we all tucked in together. He let us draw on his ridiculously un-ticklish feet just because we thought it would be funny. He taught all three of us to puddle jump – wellies not always required, much to our mothers’ annoyance. He once went to his pretty swanky gym with multi-coloured toenails because my baby sister asked if she could paint them and he’d forgotten. When I was about 11 and just getting to the ‘how embarrassing’ stage of adolescence, we went to Disneyland Paris. He and my then 7 year old brother decided to impersonate orang-utans walking into the park, in public, loudly.

But it didn’t end when we outgrew childhood. I moved in with my dad after university, the first time we’d lived together full-time since the divorce. It lasted 18 months before I left to live with my now-husband. It was great.

He’s a night-time cabbie and I work 9-5 so most of the time we were ships in the night. But that didn’t stunt his creative imagination. I’d wake up to a packed lunch, smile at his thoughtfulness until lunchtime when I tucked in and found Post-it notes inside my sarnies. Messages like “Your turn to make lunch tomorrow” and “Yum, yum in my tum” are slightly embarrassing to retrieve in front of your colleagues at your first grown-up job. I even got home one day to find he’d sellotaped my sister’s giant Winnie the Pooh toy into the driving seat of my car (parked on the main road), strapped a Fruit Shoot to its hand and stuck a Post-it on the window that read “Don’t drink and drive kids!”. Weirdo.

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The road is long

All this reminiscing makes me smile, but it also makes me horrendously sad. I didn’t think there was such a thing as ‘past crying’ sad, but I am. I feel a bit like one of those pieces of Ikea furniture that’s missing something vital – it does its job but it’ll always be a bit wobbly. But I’m not a victim, nor am I a martyr.

I’m not the only one struggling and my siblings and our family and friends are all getting used to our post-accident reality too. We’ll keep muddling through and once Daddy gets a long-term rehab place at an appropriate facility, I feel hopeful we’ll see some more progress. Despite this though, he’ll be changed – the accident was a huge deal and will undoubtedly leave permanent physical, neurological and emotional scars.

But he’ll be here, with us and that’s the thing to hold onto. Awful, horrible things take people’s loved ones every day – war, disease, violent crime and freak accidents. This isn’t easy, and we’d be idiots to pretend otherwise, but Daddy is conscious, stable, he’s made tremendous progress in only 2 months, and he’s capable of telling us he loves us. We’re selfish to demand any more of him.

For my part, I’m trying to accept that this is as good as he gets. That way, any progress is a gift. And in the meantime, if you’re reading this in a few months, or a few years: Daddy, you’re my one too, always.

 

 

The development of perspective

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The development of perspective

So it’s been a while (2 months to be exact) and there’s no point me apologising for the lack of posts. We got married on 25 August and life just got away from me. The wedding was awesome, everything we wanted and we had a fab day. It’s everything since that’s been less than rosy (my husband, however, is most definitely awesome. Being married is great).

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Two days after our wedding, my dad had an accident and fell down the stairs. He fractured his skull and suffered bruising and swelling to his skull. He was in a coma for two weeks. He’s since started to wake up and speak, although his lucid and sensible moments are few and far between, and he’s not the man he was before. We’re hopeful this could change, but at present life feels like driving down a really foggy road. Your lights help you see immediately in front of you, but everything beyond that is a mystery.

Driving in the fog

Little Miss Organised has a bad time

For me, our situation is hard because I plan everything months in advance. I’m a list maker and an organiser so when I can’t get answers it freaks me out. And even for my slightly less organised brother and sister, it’s a crappy situation, to put it mildly.

The list of emotions we’re all experiencing is endless. We feel guilty for enjoying life, sad that he might never get back to ‘normal’, optimistic when he makes the tiniest bit of progress and pessimistic when he has a tired day. We’re angry that this happened at a time when life seemed to be great, and frustrated with the to-ing and fro-ing as various people manage his recovery.

I can’t speak for my siblings, but if I dwell on the negative feelings I’d never get out of bed. Instead I want to share what I’m learning from this horrible situation:

1) My siblings are pretty awesome

Every family member, in any given family, has their natural role. I’m the organiser. Often to the others’ annoyance, I’m always trying to book them for family meals and gatherings, months ahead of time.

When my dad had his fall, I was on honeymoon. The roles had to shift. My brother has been an absolute legend. At a time when his heart felt like it had split open, he called the family together. He updated everybody. He  took time off work to sit with my dad and will him awake. He took care of our baby sister (she’s 17 but she’ll always be our baby). And that’s the next thing.

My sister loves fashion, nails, beauty and shopping. If you didn’t know her, you’d assume she was your typical self-obsessed teenager. But she’s not. As soon as she knew I’d been told about our dad, I got a series of messages through about how I shouldn’t worry. How I was doing the right thing by seeing out our honeymoon. How Daddy was going to beat this and wake up ASAP. I knew she was broken too, and that her natural role was to let us look after her. But she decided her grown-up sister could do with some looking after too.

In short, my siblings are incredible. I’ve underestimated them for far too long. I’m so so proud of them – prouder than any qualification, job or achievement will ever make me. If I could wrap them in bubble wrap (pointless because my brother would just pop it all), I would. I wish I had the power to protect them from the unfair, entirely pointless crap. But I can’t. They’ve been so brave and as a family, we’re not good at telling each other the emotional stuff. So I hope this is enough. I love you both more than Daddy loves Maltesers.

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2) People can surprise you

Just when you’ve given up faith in anything good, and decided there’s no point being happy, someone you don’t even know all that well will make you smile. After my dad’s accident, I knew people would be sympathetic, but I didn’t expect such kindness. My in-laws dropped food round on our first weekend home because they knew hospital visiting would take up our time. My work colleagues bought me cards, biscuits and took time out to listen to me cry and rant. And I got cards, Facebook messages and texts from people I haven’t heard from in years, just sending their love.

People aren’t always after something. Contrary to what you see on Twitter, or read in the papers; there are still good people out there.

3) Perspective is relative

I thought I had perspective. While I’ve had a relatively comfortable life, my road’s not always been smooth. I thought I was good at putting everyday worries and rants into perspective against the bigger, nastier things my friends and family were going through.Turns out I wasn’t.

It’s a learning curve but I’m learning to make the best of life as we now know it. Yes my dad is currently in need of some pretty comprehensive neurological rehab. But he’s still my dad, and he loves us, and he’s here. Yes the three of us are constantly shattered and struggling to juggle work, life and hospital. But we have each other as well as a huge network of family and extended family and friends. We’re incredibly lucky on that front.

4) Family is whoever turns up when things are shit

Half the people who visited my dad in ITU and since aren’t technically related to him. My mum (his first wife), my step mum (his second wife), our friend Lacie (his pretend daughter – running joke), our cousins, and a stream of friends have spent time chatting and listening to his (generally) gibberish.

It doesn’t matter that he’s no longer married to my mum or step mum. And while they were (of course) there for their kids (aka us), they were also just there because they love my dad. He’s one of their best friends and they wanted to help take care of him. Family isn’t as straightforward as ‘people who live in the same house’. It’s whoever is there for the bad times.

5) No-one’s expecting a superhero

Don’t get me wrong, I love superheroes. Massive Marvel fan (I went to a Marvel themed party as Emma Frost while my now-husband went as Beast. It was awesome). But it’s unrealistic to be tough, brave and happy 24/7, even on a good day. So on the bad days, no-one expects it.

When I’ve had days when I knew tears were coming, I’ve tried to stop them. And they came out anyway. So now, if I’m sad, I pop out of the office for a walk. I ask one of my friends if they’ve got 5 minutes to listen. I ask for help and a hug. It’s easy to feel like a burden, like life has moved on for everyone else. And absolutely, you still have to move along and try to enjoy life – go to work, see friends, make plans. But when things feel difficult, people are there for you. They want to help. Don’t be brave and pretend you’re fine. You’ll do more damage in the long run.

So to sum up, things are pretty crap. But my family is one-of-a-kind, we’ve discovered some amazing people, and we’re surrounded by a beautiful mishmash of slightly odd but gorgeously loveable individuals. If good thoughts and well wishes had healing power, Daddy wouldn’t just be better – he’d be marathon fit.

Our family