Tag Archives: father

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.

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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…

My dad’s cooler than your dad

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My dad’s cooler than your dad

So it’s Father’s Day, which means millions of insta-filtered images of Daddies and their not so little ones all over your Facebook feed (no judgement here – I’m the queen of the sentimental social media post).

fathers-dayGiven the year my family has had, I appreciate my blog has been already been pretty father-focussed. Nevertheless, I need to let you know something very important.

My dad is cooler than your dad.

I’m sure yours is lovely. I’m sure his hugs are warm, his jokes embarrassing and his taste in 70s rock music hilarious. But mine wins. He’s weird and funny and thoughtful and has a heart the size of the universe. He wears his pants on his head during video calls and pretends he can’t hear me when I put his hearing aids in. He’s useless with remembering dates but knows the names of every pet he’s come into contact with. He has the most enormous blue eyes you’ve ever seen and hardly any teeth. We’ve had exactly one argument in my whole life and it was over a boy who wasn’t good enough for me (Daddy was right). I’ve been to Cyprus, Corsica, Los Angeles, York, Orlando, France, Butlins and Dymchurch with him. Before the accident, since the accident and every day until I’m old and grey I’ll thank my lucky stars for him. Here’s why:

1) He went to the very first Isle of Wight Festival during his kaftan-and-long-hair-phase, with no worldly belongings and jumped the fence to get in and watch Jimi Hendrix.

2) He once poured a whole bowl of popcorn over my cousin’s head during a sleepover. No reason. He just thought it would be funny.

3) Even after his accident, and despite the fact I’m a 30 year old woman, he still tells my husband and mum to take care of me when we leave after visiting.

4) When he was a baby, my Granny left him in his pram outside a shop (it was the olden days….aka the 50s). A gypsy woman stopped by and told my Granny that my dad was beautiful and had “eyes like poached eggs”. Granny was always weirdly proud of this story, rest her soul.

5) He went to a posh boarding school and features on a hard-to-find recording of Alleluia with the choir.

6) Once he went to New York in the winter and took only boat shoes and no socks. Suffice to say he had to winter-fy himself when he arrived to 2 feet of snow.

7) His middle names are Miles and Wade…and he hates them.

8) He rarely calls people by their actual names. I’m Bomps, my brother is Diddy, my sister is Tam-Tam and one of my school friends when I was about 13 was always Furry Feet, due to a pair of fuzzy shoes she owned.

9) When my sister was a baby he’d grab her wellies, take her outside and go puddle jumping.

10) He is genuinely my very best friend in the world. Even now he gives me insightful advice, the best hugs, makes me cry with laughter and is always there when I need him.

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So to summarise…my dad is totally cooler than your dad. We win.

#Thisgirlcan have a wobble and survive

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#Thisgirlcan have a wobble and survive

So it’s been a long while since I last blogged. Let’s face it, if I carry on like this, my dream of being a renowned and respected writer isn’t even going to make it off the starting blocks. To explain, (and perhaps grovel a little) let me go back about two months.

If you’ve read this blog before, you’ll know that my dad had a serious accident last year. To be honest, aside from working, eating and sleeping; he’s pretty much been my life for the last eight months. He’s doing well – he’s been in neuro rehab for nearly three months and he’s made huge progress. He’s eating normally, the PEG tube is due to be removed, and while his mobility and conversation is not quite normal, it’s miles better than it was.

Good news gone bad

Back in February, when we got the news that my dad finally had a rehab place at a fab facility, I was over the moon. Then only a couple of days later, I was signed off work for 3 weeks with stress.

The best way I can explain it is that for six months my in-brain Google had over 50 tabs open and I was frantically clicking between them, day-in, day-out. This crazy mental kinetic energy was keeping me going. Until the good news we’d all been waiting for, when some of those tabs closed down and I was forced to *gasp* relax a little. That’s right ladies and gents, I got signed off with stress because I finally had time to relax.

Stress is…crying over what to cook for dinner

Being stressed wasn’t fun. It was a guilt-ridden, anxious and tearful period when I was forced to face the reality that I’m not an actual superhero. Thankfully I’d recognised that something wasn’t right relatively early on. It was during a crying fit when I exclaimed to my (bemused and concerned husband) that

“I can’t even decide what to cook for dinner tomorrow and lists no longer make sense to me!”

But it wasn’t all bad. It gave me some much needed time to take care of myself. I joined (and enjoyed) some gym classes, ate better, slept, read some books, let my family and friends fuss over me and stopped trying to be everything for everyone.

It also gave me time to think. For the eight months since my wedding not once had I thought “What do I want?”. I’d got married, gone on honeymoon and come back to a reality where my injured dad and my worried family was my world. My life had been on hold so I sat down and considered what I’d like to do with it.

A brave new list

I started a list:

  1. Get a new job
  2. Visit my friends in America
  3. Get fit
  4. Enjoy being married

I’m in the process of all of the first three (and I’m really chuffed to tell you that I’ve already secured a new job – I start in June. Exciting!).

Enjoying being married is perhaps the most important. My husband has been amazing. He hasn’t judged, moaned or questioned what I went through. We’ve made time for each other. He knows now that when I seem to be taking non-stop phone calls, booking trips out and running around like a blue-arsed fly, it’s time to remove my phone, turn off the TV and cuddle.

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Telling the world

One of the main reasons for my delay in publishing this post has been fear. Fear of being turned down or frowned upon in a new job for having been stressed. Fear of sounding like a total victim when there are thousands of people out there struggling to manage the most debilitating of mental health conditions every day. Fear of publicly admitting to struggling when life got tough.

But I recently realised something. I’m not afraid. I’m proud. To slightly misappropriate the recent fitness campaign #thisgirlcan kickbox like a good’un. #thisgirlcan face the hardest year of her life, stick two fingers up and start afresh. #thisgirlcan talk about stress, depression and anxiety and not feel like she has to whisper ashamedly.

And #thisgirlcan (and most importantly will) be a better person for it.

A celebratory after-gym shot. Because #thisgirlcan

A celebratory after-gym shot. Because #thisgirlcan