Kittens on the internet

Funny, when I lived in Scotland there was an expression “mortalled”, to mean that someone was really drunk. It seemed like quite a sweet turn of phrase to me, without taking in any of the real implications; now the idea of getting mortalled makes me do a whole body shudder.

Yesterday I took Nick to the hospital to get his hearing aids repaired – a simple thing, but something about the miserable day, cold and bucketing with rain and having to splosh into a huge puddle just getting him out of the car, gave me the chills.

An emergency ambulance pulled up beside us and began to unload a scared, poorly woman on a stretcher. All around us were people hobbling, being wheeled, bandaged and scarred, pale smokers outside in dressing gowns and drips, everyone looking ill and, well, mortal.

Hospitals don’t usually affect me like this but it was like seeing the world through a different lens, a horrific one that I couldn’t shake off. How bloody fragile we are, that’s all I could see. And, for the first time, one day this will be me.

I’ve not been feeling very well this week, with stomach pains and back ache. Unusual for me. Something is not at all right. I’m generally strong as a Taurean ox and not given to imagining hideous illness every time I have a cold - although I did go through a childhood phase of acute hypochondria, thanks to obsessive reading of a Victorian medical encyclopaedia (quinsy, diptheria and palpitations in the space of a fortnight. My mum got rid of the book after she’d been about to call an ambulance then realized my “appendicitis” was on the wrong side. )

But this time, something is definitely not feeling right.

I’ve not been so well this year and apart from getting older, it doesn’t take much to guess why.  Tinnitus, weird Raynaud’s type frozen fingers, feeling exhausted and dizzy. The stress of the last few weeks with ongoing neighbour problems and the man upstairs physically threatening Nick, and our attempts to get some support, has affected us all. With each day that I beg for help and no-one calls back, the acid bores another hole in my stomach and no amount of meditation or lovely spring blossoms or kittens on the internet seems to soothe the anxiety away. 

And a friend died at the weekend – cancer. She was super-healthy, it just came out of the blue. It makes you stop and wonder.

It makes you face your own mortality.

What if there were really something wrong with me? But there can’t be. Who would look after Nick? There is Simon, and the carers who are gradually gaining confidence and my trust, and a handful of helpful friends and health professionals, but it’s me who pulls it all together.

I simply can’t afford to get ill. Trouble is, being a carer affects your health. Have you seen the statistics? They’re as scary as any Victorian medical manual.

But if kittens on the internet and walking in spring blossom help a bit, and taking Nick out to the countryside for a blast of nature and the heavenly hillsides, then that’s what I’ve got to do. I think perhaps it’s my quest in what is now my 60^th year  - to keep well, mentally and physically, because one of us can’t and the other one has got to.

Where the light gets in

The weather is beautiful, at long last! My flip flops have come out of hibernation and the coats and scarves have finally gone back in the cupboard after doing an in-out dance for weeks.

Nick sits indoors with his door into the communal garden shut and the curtains drawn. Every time I come in, I throw the windows open and let the air and the sunshine in. He says he doesn’t mind either way, but his hair is damp with sweat. HD trips your internal thermostat so it’s very easy to overheat, but he doesn’t notice.

We can wheel him in his chair right to the edge of the door looking out into the garden and it’s a good place to park for some fresh air and light, but really he just likes his habits and to sit facing the other way with his radio, newspaper and TV. 

Well – at least the TV and radio are working again and he can immerse himself in Netflix to his heart’s content. Science fiction, thrillers, science fiction thrillers, he can’t get enough and it’s all there at the fumble of a button.

He’s got to keep the sound down, though - we’ve had complaints again and the upstairs neighbour was making daily threats to Nick about the volume on his radio.

We got him some wireless headphones but he drops them, struggles with the tiny on/off switch or forgets to wear them altogether, so sometimes the radio does get turned up very loud. I was getting a bit scared as the carers reported that the neighbour was very angry, banging on the ceiling or coming downstairs  and shouting at Nick; on several occasions he’s tried to force his way in and they have had to prevent him. 

To my utter amazement and eternal gratitude, the housing officer, the one I thought was so useless earlier in the year, has taken this on and had a word with Vic upstairs and given him a direct line number to ring. Whenever there’s a noise problem he’s to call that, not threaten a vulnerable person who is not completely responsible for his actions. We shall see…but at least it feels as if someone is actually listening to us and is trying to help.

The other amazing thing is that since I really kicked arse a month ago, the carers have stepped up and begun to operate in a – well, let’s not tempt fate and say seamless fashion, no, it’s hardly that. But they are doing all the things they were always supposed to do as part of their support plan, and other little helpful things (like do the recycling, put the wireless headphones on charge, etc) without being asked. They look professional and seem to be taking a pride in their work. I think it has something to do with the increased level of care they are giving Nick as his ability to feed or dress himself decreases. Suddenly they are Team Nick in a way they never were before when it was just very basic duties. 

They have even taken over the storage and collection of medications so I don’t have to think about that anymore. It has taken six painful months but I think we are actually establishing a level of understanding and trust.

It is such a help, because I can see very clearly that Nick’s health is deteriorating. He can’t focus, he is loath to get out of his chair unless it’s to the loo or into the kitchen to get more wine, his movements are significantly worse. Poor love, he just can’t keep still; it is sorrowful to see.

What’s to do? Except be thankful that I don’t feel I’m carrying all these different and complex issues completely on my own anymore, and that Nick has his Netflix and we can take him out in the sunshine.

Anniversary Reaction

It was my birthday this week. The floor is still covered in bits of pink tissue paper and there is an alarming amount of chocolate and gin on the premises. It’ll come in useful, I’m sure.

Birthdays always make me a bit emotional, amazed and deeply touched to be at the receiving end of so much love and attention (like this year, when I have neglected my friends and been grumpy with my family and it really doesn’t feel deserved). 

I’m a lucky girl.

I’m also aware of time passing and that Nick has now been in Sheffield for a year; he arrived at the beginning of May 2017 and gosh, how much has changed.

It has sometimes seemed that we’d unwittingly won a competition to demonstrate Murphy’s Law, that every possible thing that could go wrong, did go wrong. Benefits and social services stopped, messages lost in cyberspace and the simplest seeming thing lost in translation. Everything, as if he’d vanished like a Jason Bourne by just moving from County Durham to Yorkshire.

I’d spent the six weeks before he moved talking to the local authority, the Jobcentre, social services and telecom company to register a change of address. I’d sent Power of Attorney documents by recorded delivery, had long conversations with officers in various departments and was reassured that the transition would go fairly smoothly. But no. Ohhhhh no.

I started calling it the Nick factor. Even the chain of opticians he’d always used suddenly lost all his details and had no record of any previous service, though his old branch in the north east knew him so well that they’d pull up a seat, get him a drink and replace his glasses three pairs at a time for free because he broke them so often.

Hours on the phone, dozens of dead ends, sending more registered letters and patiently re-scanning documents; meanwhile panicking about money because suddenly he had no income and was ripping though his savings, and panicking about the scale of his drinking, constant chest-pulsing panic because I’d had no idea it was that bad. And at the same time trying to protect Nick from my dismay because only when he came to live here permanently did I understand how much worse his health had become.

And now here we are, and we’ve become acclimatised to the new normal. Nick is living in a lovely flat ten minutes away from us, he feels safe and has settled into a routine that suits him. His various benefits have finally been reinstated (though I say this knowing that PiP may be just around the corner), and with a little care we can manage.

His TV is working and he can watch Netflix to his heart’s content.

We have compromised on the wine so that it’s now a box of lower-alcohol Perry a day rather than the 12% Chardonnay, and, cross fingers, we have just about got his care provision working out at long last.

So we’ve come a long, long way. It’s best not to look back, though.

This time last year, Nick could walk to our house, just round the corner from his old flat, and even to the shop a couple of hundred yards down the road. He could converse by text, make a phone call and pick up the receiver when I rang. He could make himself something to eat and feed the cats. He can’t do any of these things now.

I worried at first that it was laziness, now that he had us running around after him, but I don’t think that’s the real reason, which is simply that he just can’t.

When someone you love has a long-term illness it’s like a living bereavement. You grieve every day for all that has been lost and the pity of it all. You miss that person even while they’re alive. Obviously you don’t sit about wailing like a Victorian widow, you get on with the here and now and enjoy the time you have and find new ways to be together, but it is a fine art.

There are daily stresses and troubles, more than I can count, and every time I think we have come through a particularly bad patch of turbulence and can relax, something else happens. When you care for someone with HD I don't think you ever really relax. But here we are, a year on, and if this tumultuous year has taught me anything, it's that there is no point looking back to the way things used to be, and definitely no point trying to anticipate the future. Better to just try to be here now. It's my birthday week, licence to drink fizz and eat chocolate and the presence is my present. 

Is there a Handyman in the House?

I saw a cartoon once that showed a fridge chatting to a washing machine.

“Our guarantee runs out next week. Then we can have some fun!”

It still makes me smile – it’s just a rueful one. Domestic appliances are tricky at the best of times but factor in the effects of HD and you are looking at a constant list of repairs and replacements. Hearing aids. Glasses. Phone. Chairs. Tables. Bed. Toilet seat. Handles. Lamps. Cooker knobs. Fridge door, and one by one, all the shelves.

The TV has not been working properly for a month and after two replacement remote controls and almost daily calls to the manufacturer’s helpline, we’re beginning to think it is something to do with the old HD super-strength involved in Nick just switching it on and off. Now the washing machine has conked, although Nick has never used it and I suspect the carers who have suddenly become aware of its existence.

Terrific! Another hour spent on hold trying to book a repair! Just what the doctor didn’t order.  

When I think of the one thing that would improve the quality of Nick’s life, the absolute one thing, it’s not more friends or hearing implants or even the return of his missing cat.

No. It would be a live-in handyman who could fix anything. This handyman would have a pocket full of Allen keys and spanners and turn his handy hands to whatever needs sorting. Oh how worth his weight in gold he would be (though maybe it could be a she, even nicer) I’m kind of imagining a granddad character though, a granddad that Nick and I never had but who in my fantasy would live in cryogenic suspension in Nick’s broom cupboard until required again. Everything would be in its place, with silhouette outlines of all the different tools drawn on the wall. Our handyman would whistle, drink cups of strong tea with three sugars and smell pleasantly of sawdust and Werther’s originals, like a character invented by John Shuttleworth.

In his spare moments in the broom cupboard he’d whittle a bird box and fashion miniature animals out of leftover putty. And he could fix EVERYTHING, cheerfully and on the spot. Nick would never have to sit helplessly waiting for someone who could get things working again, it would just magically get done. 

I’ve fallen a little bit in love with my vision of this handyman, but in the meantime there is Sheffield council repairs service, superglue and Yellow Pages.

I also have a new idea for a clinical trial. Combine it with white goods testing and pay people with HD to use the appliances for a week or two. Manufacturers would soon learn about the toughness or endurance of their products! Maybe I could take this idea to Lord Sugar. You’ve got to admit, it’s a winner.

Letting Go

I have no illusion about being in control. You know those annoying gerunds that you see on the side of vans – Veolia, local authorities and the like: “Working in Partnership” “Bringing service with a smile” and all that guff.

Sometimes I think my strapline could be  “Running two households, badly.”

Being a carer depends on quite a degree of control, though. It’s the opposite of care-less. So much of the time the other person’s needs come first so you’ve got to have the self-control to deal with that. If they are complex needs then you have to be super in control, a puppet master juggling many different strings just to keep the show going, never mind any fancy tricks.

When you’re looking after someone’s life – their health and dental appointments, their care provision, their finances, their shopping, their domestic maintenance and their social requirements, their dirty fingernails and their hearing aid batteries - all those myriad tiny but necessary things - then you need at least the illusion of control. You have to try to keep a tight grip so that things get done.

You’re not just a puppeteer, you're a circus acrobat on a tightrope, defying gravity to stand on one leg and spin plates from a pole balanced on your nose, and what could possibly go wrong? 

It looks so precarious, but without missing a beat you catch another plate and keep on spinning.

Such skills! The audience applaud (although most of them are looking the other way because there is no spotlight on this tightrope and there are many entertaining things happening at their eye level.) 

The ones who do see it say "I don't know how she does it," and then go off for an ice cream.

There is little glamour in this circus act, and it can feel like a full time job, indeed can actually be one – just not a paid role in the traditional sense.

However skilled you are, that level of co-ordination has a limited life span. You can’t let yourself slip up, and if you do, it just means extra work to repair the damage. You’re bound to wobble, drop a plate or two, you’re only human; but dropped plates cost time and energy to replace. 

With every fall from grace this makes me more determined to keep better control, and with each new grit of the teeth I get more and more tense.

When I get tense I get cross and narky and can’t see any source of daylight and no end to the troubles ahead. It’s really rubbish for everyone, especially for my poor long suffering family and not much fun for Nick.

My counsellor tells me that control can only go so far, is only ever temporary and I must learn to let go. But how?

I think I used to be a fun person, light hearted and up for spontaneous jollies. Where is the room for that now though? How do I get everything done that needs to be done and still have space in my brain for carefree amusement? Not without careful planning, anyway. 

I know how pathetic that sounds, but the other night I went out to see a film, knowing that Nick was safe and the carers would be coming in soon to organise his dinner – but somehow they made a mistake with another cancellation and didn’t come. So he had no dinner and no medications and no-one to help him get undressed and into bed. I didn’t discover this til the next day when I found the food I’d labelled and left out for him untouched on the counter, the blister pack of tablets intact, and Nick perfectly chipper but wearing the same shirt he’d had on the day before and had probably gone to bed in.

Meanwhile the Red Cross have brought a wheeled bathroom chair that won’t actually fit in the flat. We weren't expecting it. Presumably Nick will use it to sit under the shower when the wet room is finally installed, only we haven’t got a date for that or any idea whether it will be weeks or months. 

I don’t know what to do with this chair or why they have brought it now without any warning, or who to ask for advice. At the moment the only place we can put it is under the communal stairs outside and hope that no-one makes off with it.

While I'm wrestling with this, Nick tells me that he has had an urgent text from his bank asking him to contact them immediately about his account which is in arrears. I did his online banking a couple of days ago and paid all the bills and there was money left in his account so that's worrying. 

Can I delegate the responsibility of dealing with any of this? I don't see how. Nothing in my brother's life seems to be straightforward and even trying to explain the various complexities makes my head start spinning like those circus plates. 

So it is not easy to think about letting go. Allowing a few plates to drop? Perhaps. Standing back for just a day? I'm up for it, but the endless to do list will still be there waiting. 

I want to know how other carers manage. Or are they just like me, madly juggling just to keep the whole shebang from cascading into total chaos?  

There are many things to be thankful for and oh so many things to laugh about if you have a black sense of humour.

But something’s got to give.

Bad Thoughts

What has happened to my life?

There is no time for me anymore and if I do get a break, I'm too exhausted to know what to do with it

Am I even allowed a life of my own?

I’m not coping

I’m lonely and so, so tired

Why can’t anyone see how much we’re struggling?

Why do all the services rely on me to sort it all out?

There is no-one to help

There is no-one else who can do this though

Whatever I do, it’s not enough but I am broken just trying to keep on top of things

It can’t carry on like this, but I can't see any end to it
I can't do enough to make it all right for him, I am failing him

I feel so guilty

Sometimes I hate Nick and I wish he wasn't there 

I am a horrible person to have these thoughts 
Shut up and keep going.

Firefighting

The mornings are fresh and light now and if the weather is not exactly warm, trees are budding and flowers blossoming. Nature’s sap is rising and it’s heartening to see Spring on its way but I’m feeling so tired.

My heart is yearning for travel and new places. The thought of a holiday brings tears to my eyes. I want to organise some kind of break – for me and my boys but also for Nick, just to breathe some new air, but we are so busy fire-fighting to stay in one place that it is hard to plan ahead.

I need to renew Nick’s Blue Badge this week and drive thirty miles to pick up a temporary loaned wheelchair from the Red Cross. He urgently needs a new one as the wheelchair I got him when he first arrived in Sheffield is literally falling apart. He used to go out on a Saturday with a carer from my old agency but the wheelchair is so heavy and unwieldy, with a footplate that can suddenly swing out of place, and Nick is so prone to tipping backwards, that she slipped a disc using it and was off work for a month. 

We discovered that it was not strictly legal for a carer to use equipment that hadn’t been serviced, so even if she felt able to return, she is not insured and simply couldn’t do it any more.

We could just buy another one but we’ve been advised not to do this by the neuro service as Nick’s needs are so particular that they say he needs to be assessed by a multi-agency team. He’s on the waiting list for an assessment but that’s a long, long list. So for now we’re struggling on with the old warhorse, it hasn’t fallen apart just yet and it is a lifeline for him to be able to go out.

Meanwhile, I'm pleading for another service review with Social Services and the care company because a new support plan was drawn up at the end of February to reflect Nick’s changing condition and his increased difficulty with eating.

Carers are supposed to come at a **Time Critical** 8pm every night to administer meds, get him changed into night wear and prepare a hot meal, then stay with Nick while he eats it. 

I see him every day and Simon or I will go in every other evening and often do the dinner ourselves so we can all have a meal together, but we can't be there every single night so we try to work around the carers. 

They’re not coming at 8pm though: since the time critical plan was issued, they have been coming without exception between 6.30 and 7pm. We’ve almost made a game of it, popping in at my old time of “just after the Archers” and more often than not the carers will have been and gone and Nick will already be in his pyjamas. 

It’s too early for him to eat, so of course they are not staying with him – and even if they do stay in the flat while he eats, we have usually found them in the kitchen next door looking at their phones.

When I challenged one of them about this, she apologised for being late! 

It is still very hard to communicate with most of the carers and I have still not figured out how much they do understand. One of them comes from the Ivory Coast so I've been attempting to speak with him in French but my French is probably as iffy as his English so it's kind of desperate measures. One day, I think, I will write a sitcom about all this and it will be ten times darker than anything Jo Brand has yet to come up with. 

She also said that they hadn't even known anything about staying with Nick while he ate, and this was news to her.

We had a review last week for the social worker, two members of the neuro team and the care company manager to see how the new regime was going. I was so relieved to think we could discuss Nick's care needs and iron out these problems together, ensuring a smoothly running joined up service that kept him looked after and safe. Just one little fly in the ointment - the care manager didn’t turn up. Even though the meeting had been booked in since February. 

Now we have to arrange another one, trying to find a time that everyone can do, and apart from the pain in the arseness of that, it is extremely stressful for Nick.

And me. As a battle-weary sister exhausted from constant chasing and complaining for every little thing, it was a wonderful thing to hear the social worker tear strips off the care company for the manager’s rudeness in not turning up to the meeting or even letting anyone know he wasn’t coming. She was really furious at him for wasting everyone else's time, and rightly so. 

Welcome to my world, I thought. But also - thank you so much for taking this on. I am so unused to someone else doing that, and it strikes me that this is what family carers do - we take on so much of the fighting to be heard or taken seriously as a service user, so much of the legwork, the chasing up and all the in-between stuff that somehow doesn't happen otherwise. 

She and the neuro team physio both grimaced when I said, Don't Social Services and the NHS teams automatically communicate to each other about service users? Especially the ones with complex needs? 

I had naively thought that they would. But both their services are totally overstretched and their case loads ridiculous, so apparently not. We are lucky to have this support but it is in no way joined up, and the pulling it all together and being in touch with everybody is, it seems, my job. 

The overall co-ordination and the fire-fighting is down to the person's family, and they all say Nick is lucky to have me. 

No wonder I'm tired. You have to be fit to do this job. Pass me my imaginary length of rope and my fire-fighter's helmet, I'm going in.