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. 

How Come You Don’t Call Me Anymore

The thing I find hardest to watch happening to my brother is not the awful chorea - and Nick’s is really severe - not the coughing or the choking for breath or even the falling over. It’s the passivity. He still has strong views about some things, like wanting to watch the rugby on TV, or asking me to buy a particular kind of chocolate that he likes, or being very determined to send his children some birthday money. But mainly he seems content to have life happen to him.

Enviable in a way, maybe, for those of us who struggle constantly with shoulds and oughts and want to’s and what ifs – you could say that Nick has transcended all this and found his Buddha Nature.

It is infuriating beyond telling, though, that communication has ground to a halt. He keeps his mobile with him at all times and one of his tics is that he needs to have his phone and a little black cube clock always at his fingertips so he can reach out and touch them. He probably does this twenty times in the course of an hour – he just doesn’t actually look at the screen.

We have spent hours changing the ring tones, getting the buzzer as loud as possible, reminding him to check his phone every hour (and he knows what time it is because of the massive station clock on the wall and the radio programmes he listens to all day) but it’s no use. He has the phone near him as a comforting thing, but not actually a thing with a use.

“Nick, I’ve sent you three texts today. Didn’t you see them?”

“Not yet, no”

“Have you checked your phone at all today?

“I’m sorry. I forgot”

He has a specially adapted landline with a flashing light and an extra loud ring but he either doesn’t hear it or says he can’t get to it in time. If we put it too close by, he just knocks it over, so it has to be put out of immediate reach as he needs it to stay connected to the citywide alarm service.

This time last year he was still picking up the phone to call me, sending me texts or replying to mine, and generally in full communication although he was increasingly finding it hard to press the right buttons on the keypad. Texting must be really hard for him and I keep searching for a solution but the real problem is that he just seems to accept a world where he sits on his own all day and no-one gets in touch.

It is immensely frustrating on a practical level because he is effectively a prisoner. He can’t go out on his own anymore. If the carers don’t turn up for some reason (which they didn’t the other day and thankfully I popped in unexpectedly) then he just accepts it.

On busy days when I might not have time to visit, I just want to check in and say hello and see how he is, but it is one way. He doesn’t reply.

The trouble is, I’m not just fretting for no reason: the danger is real. He has accidents, drops things, smashes things and hurts himself. He’s not really safe to be left alone for long periods. How can I know he’s OK? The only time he gets in touch now is when he thinks he’s running out of wine.

At his request, I stopped hiding the week’s worth of wine and put it all in one place so he knows it is there and does not wake up panicking – but this means he has no reason to keep in contact. 

It’s as if he doesn’t care one way or another and I find it so upsetting. I know he does care and is delighted to have some company but it’s the apathy and closing-in of the illness that is horrible to be around and for all the changes we’ve been through, this is the hardest to bear.

As someone who’s known him all his life, watching him change like this feels painful all the way. I can’t get used to it and I don’t want to. But it’s the way it is and I must.

Sharp Dressed Man

 “Right! We’re off to town!”

I can’t stand the sight of Nick’s manky sweaters any longer. Everything is ripped and stained, with holes in odd places. And as for his socks…

The beautiful soft cashmere mix jumper he got for Christmas is unrecognisable after many dinners spilled down the front, elbows worn thin with scuffing, its rich chestnut colour strangely tie-dyed after the carers had thrown it into the washing machine with his blue socks, towels and sheets.

“Classic”, I think, “the one time they actually did the washing” because when the laundry basket is getting full they are supposed to stick a load in the machine in the morning, then take it out at lunchtime. But they don’t.

I have darned the elbows of some of the jumpers – one that belonged to our dad, for instance, that we both felt sentimental about – and sewn up the seams that were coming apart, because Huntington’s turns even the mildest mannered man into the Incredible Hulk, arms bursting out of sleeves with the flick of a muscle.

So Nick needs new clothes. I wouldn’t presume to go and buy them for him on my own. He still has some say in what he wants to look like, though this is sometimes random – he can be very clear that he wants to wear his leather jacket, but with old baggy chinos and a grey prison-issue style sweatshirt underneath. And red and white striped fluffy Christmas socks. And his alarm pendant round his neck.

I thought I would take him to M&S. I used to go shopping there with one of my Alzheimer’s clients and they were unfailingly courteous and kind to her, but Nick has other ideas.

“I want to go to Boyes” – which was his default shop back in the northeast for practically everything that isn’t food. It’s one of those slightly old fashioned stores that seem to stock anything from shampoo to bras, from licorice comfits to weedkiller, fishing tackle to crayons and cool stationery, all under the one roof. We used to take the kids there for colouring books and sweets when they were little and we all loved it. And I always made a beeline to Boyes when I visited Nick, for their amazing supply of coloured lacy tights.  I’m not sure about the men’s clothes though.

I don’t even think there is one in Sheffield (oh, just did a search and what do you know, there is! Way on the other side of town though)

Anywhere else you’d like to try, Nick?

“Peacock’s” he says.

There was a branch of Peacock’s in Consett that was just stumbling distance from his house there and increasingly as far as he could walk. I know there’s one in town, on a pedestrian precinct with easy wheelchair access, so we’ll go there. Great. Though suddenly the film Rain Man pops into my mind with the Dustin Hoffman character insisting that he gets his pants from K-Mart.

Nick used to wear handmade suits with peacock lining and had a silk tie and matching socks for every day of the week and two for Sunday. Handkerchiefs too, peeping out of his breast pocket, sometimes in a contrasting colour. He liked cuff links and those elasticy things that hold up your shirt sleeves. Off duty, he still looked sharp and always had smart shoes that he kept in shape with a shoe tree. (I’ve never had a shoe tree in my life) 

He always wore aftershave balm and cologne and smelled good.

He still wears cologne but it’s what the carers help him spray on after his strip wash in the morning, and he can’t do up a button any more, let alone a cufflink.

I still iron his shirts though, and press his trousers. Increasingly, I think he just chooses the first thing on the pile when the carers ask him in the morning what he wants to wear (he says they do and I hope this is true) so I try to make sure that at least it is reputable. The carers don’t seem to notice his holey socks though, but maybe because they seem to wear out almost on contact – that Hulk thing again.

Anyway, we’re going shopping.

How do you have a Social Life?

It amazes me that I still get invited to things or have any friends left but miraculously it seems I do – even if quite a few of them are at a similar stage of life where they are looking after someone, worrying about an aged parent or coping with a troubled teenager, sometimes both of those at once.

When you have that going on in your life, you really need some kick-back time away from your caring duties. Leave the house, go out, see other people, talk about completely different things.

It’s very easy as a carer to feel you’ve lost your identity and to forget who you are, because so much of your head-space is taken up by the person you’re looking after. Especially when they have an illness like Huntington's that affects body, mind and every possible function. 

It's hard to sustain this level of care and dedication without recharging your batteries; you absolutely have to find time to come back to yourself, but it’s also important to be social and meet people as the person you always were, not just as a carer. You need to be able to break your routine and get some physical distance from your cares. Go for a walk, see a movie, have a dance, drink a few drinks, think about something else, laugh without feeling guilty, just lose a few degrees of your endless feeling of responsibility. 

It helps so much to have friends, “people who like you even though they know you “. 
The nourishment  from an afternoon out with a friend or meeting up with a few of the right people can sustain me for days, weeks afterwards. 

The trouble is, though I long to see friends and got to parties and have all those different conversations and so I make plans and put it all in my diary, so often when the time actually comes, something happens with Nick and I have to cancel. That has happened a few times, especially at the weekend when he might have a few more wines than normal and falls over or hits his head. Times when I am all dressed up and ready to go, except that I daren't leave him. 

Or – more difficult to be upfront about as not everyone gets it – I am just too tired.

It’s invariably the worst timing, just when there’s a fabulous party that I’ve been looking forward to for ages – but what d’you know, it’s at the end of a long day or a run of long days with meetings and health appointments and washing and shopping and cooking and cleaning and wiping up the spillage and all my energy feels as if it’s been sucked out with a vacuum cleaner. It seems so weedy but I can’t be the only one who feels like this?

And I feel teenagey, not sure that I want to go anywhere unfamiliar or talk to anyone new or have to account for myself as me. I miss the buzzy high from new conversations and emerging friendships but I’m exhausted and dull and have nothing to offer. If I ever had any sparkle it’s all come off in the wash long since. Since taking on this role it feels as if I’ve lost all my social confidence. And even with the friends I don't have to try too hard with, there are times when it is just all too difficult. 

I don’t want to stop making plans or trying to see people, it is so important, but it is impossible to guarantee whether come the day I’ll be able to leave the house. It's maddening but it seems to be all part of the new way of life where I'm as responsible for another adult person as I am for myself. 

I want to know what other carers do and how they cope. 

So – carers - tell me. How do you have a Social Life?