Tag Archives: neurological

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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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…

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