Last Christmas, I gave you my heart

...and I won't ever get it back, but that's OK. We were brother and sister for five decades, nothing can change that, and your memory will always be with me.

Memory is a funny thing, though – yesterday I was inconsolable because I’d just idly wondered what we were doing this time last year, then realised that I’d got rid of my 2018 appointment diary and also yours. The reminder of all those medical and social service appointments; ears, eyes, skin, teeth, hands and feet and bumpsadaisy, there wasn’t a bit of you that didn’t have a problem and someone trying their best to fix it; the waiting in for wheelchair repair and every other repair under the sun; meetings with management of the awful care agency, always promising but never delivering; the council officer and police calls about the upstairs neighbour; the shopping and the schlepping and the fun things too, your lunches with Helen and Sophie and me and the cinema and your boys’ night out with Simon at the pub. 

I couldn’t bear the reminders of all the bad stuff; we’d already lived it for too long. But I’m sad to forget some of those little things, though maybe they never really leave but are always there in the close weave of our souls.

We went to two carol concerts, that I remember, about this time last year. Both of which we had to jump ship halfway through because you were so uncomfortable. Being in a confined, unfamiliar space was very hard for you to manage, even in the wheelchair that you said was your most comfortable place anywhere. We’d both stopped caring if people stared as you jerked and rocked and shuffled about, but now the Christmas spirit had arrived and people were kind. You loved the craic, the decorations and festive air, and you certainly enjoyed the mulled wine and snacks.

All this stays with me in my bank of treasured memories. We never imagined that you wouldn’t be doing the same thing with us this year, and I’m still getting used to you not being here. I wouldn't want to put the clock back and see you getting worse and more uncomfortable all the time, maybe not even wanting to or able to go out much. We have a lifetime of memories and good times to look back on, and you definitely quit while you were ahead. It's just a funny time for the ones you left behind. 

But don't worry. It’s Ok – just strange. 

When Life Gives you Lemons….

…well, given the changeable weather, I can’t decide whether to make a cold G&T or a hot toddy, but whatever, I’m determined to find a positive outcome to this latest curve-ball.

What else can you do? It’s the only way I can deal with a difficult situation, and what carers do in general. Life knocks you over – quite a lot - and you just have to dust yourself off and get up again.

This is a bit of a rant, but do hear me out as there is a positive reason for telling this sorry tale.

I wrote last year about our disappointment when Nick was expecting his new electric wheelchair and we waited in on the most glorious day, one of the first delightful days of that long hot summer. We were very excited because the old wheelchair had finally given up the ghost and wasn’t safe to use anymore. The NHS order the product then the delivery and fitting is carried out by a company called Ross Care.

We waited and we waited, but the wheelchair didn’t arrive. The delivery had been scheduled for 9am. I called Ross Care switchboard and was told the engineer was running late but would be with us by lunchtime.

I phoned several times during the course of that long, hot afternoon and kept being told someone would be with us shortly. At 4pm Nick went for his afternoon sleep and at 5pm I left, desperate for some fresh air and sunshine. Such a waste of a day.

When it did arrive, a couple of days later with no warning, there was no fitting as ordered as a matter of course by the OT at the wheelchair service, no contact with me as urgently requested, just bunged in the hall for Nick to trip over.

We were just pleased to have it at all, though it was a clunky old beast and the power pack was always a pain to dismantle when you wanted to fold the wheelchair up to go in the car. I complained to Ross Care about their poor service but never got a response.

Fast-forward a year to yesterday afternoon – another beautiful, warm sunny day after several weeks of really yukky weather. Last year’s wheelchair had started to fall apart and Nick has had a new once since the beginning of May. That took two no-shows and three afternoons of waiting in too, but we were glad to get it at last except that the battery was flat on the power-pack so the engineer took it away to test and said he’d order a replacement.

The call history on my phone tells a story as I see I had called Ross Care at least once a week for the next six weeks and several times on either side of my holiday, in an attempt to get the chair fully usable. Every time I rang, a receptionist would say that she’d look into it and call me back.

Returned calls to me from them? Ha. I’ll leave you to guess.

I kept calling, of course, because that’s what I do. So we were both delighted to secure an appointment at last, for this week, a fairly reasonable slot of 1 – 5 (some organisations require you to wait in all day) and a firm promise that the engineer would phone beforehand to make sure we were home.

Instead, I arrived just after 1 to find the newly assembled wheelchair blocking the small hallway so Nick had already got into a tangle with it when going to the loo.

No call. No fitting. The engineer had been in and out and gone by 12.45 and when I tried to move the wheelchair I couldn’t budge it because an electric wheelchair needs a key to turn it on and he hadn’t brought one.

More phoning. Thursday is Nick’s precious night out and I had awful visions of him not being able to go. The receptionist kept saying that she would “try to get hold of“ the engineer to ask him to come back and leave us a key, but after four hours of me phoning she had still not managed to contact him. Where was he? Scotland? Space? Or maybe just listening to loud music with his phone off. Maybe she just hadn’t bothered to call him at all. Who knows.

I made one last call – being friendly and polite throughout because it really doesn’t pay to piss off the receptionist - and asked her to put me through to a supervisor: someone with the clout to order an urgent delivery of the missing key and a proper fitting to make sure this time that all elements were in place and doing what they were supposed to. She promised to get someone to call me straight back.

Three days ago. Still waiting.

So – we did go out that night and had a beautiful drive out to the hills for a drink in a country pub. Nick had the simple solution that we would just take the power pack off and use the wheelchair as we have been anyway, manually so that it folds up in the boot of the car. Same as we’ve been doing for the last two months, then.

It’s a new month tomorrow and I will gear up again for more telephoning even as I think how bloody infuriatingly boring it is to have to do this over and over again.

And why am I telling you all this? Partly to share my frustration of course and have a good sound off to a captive audience, but more importantly, this: - I’m genuinely horrified that once again, organisations and different departments of the same organisation, are not communicating with each other, to the detriment of the service user they are working for. And that this seems to be completely normal.

In what world is it normal for a mobility specialist to deliver a wheelchair for an impaired person and not bother to check whether all the parts are there and working? To leave an impaired person stranded due to wilful neglect of the equipment that was meant to help them?

 

As far as I can see, the NHS wheelchair service (which has a waiting list longer than the coast-to-coast walk) issues an order for the product in good faith, with (both times we’ve experienced this) the understanding that the equipment provider will make sure it properly fits the client. And that it works, of course.

What actually happens is that the provider just sends out a delivery driver to each address, no nonsense with fitting or checking, boom, on to the next one. AND PEOPLE PUT UP WITH THIS. I talk about the Nick factor but really, this cannot be happening only to us.

There has been too much blank mystification whenever I have talked about fitting. Too much “Talk to the hand” when I phone to raise a concern. Too many failed attempts to contact their own delivery people, especially when a job has not been completed or gone wrong. Too much radio silence from top brass, whoever that is. My suspicion is that this happens to a lot of people, not just us. 

This isn’t right. It’s yet another example of the sickness at the heart of our social care system, the fact that organisations simply do not communicate effectively with each other or even inside their own departments. The whole system seems to be run a bit like Bletchley Park, fragmented and compartmentalised, sometimes with no clear lines of communication at all between the areas who you’d think would most need to talk to each other. What do we do about it? Especially when most of us are already on our knees as it is.

Well, I think the only thing to do is talk about it and make a fuss. Do NOT put up with bad communication and terrible service. We have to address this not just as aggrieved consumers but as problem solvers, the very people who can actually point out what needs to change. 

I think we have to see that we have power, as all consumers have power. 

I will continue to call Ross Care until Nick gets his wheelchair sorted, but (with my old community development head on) I'll also ask if we can talk constructively about improving their service. No company can be so arrogant that they don't want to do that, surely. Or am I being naive? 

Anyway, we'll find out. Things only change when enough people have had enough. 

Kensington Gore

We went back to the dietician today to check on Nick’s weight and blow me down, not only has he put back all the weight he’d lost before Christmas, he has gained another 20lbs. Actually, more. He weighs over 13 stone now, which is a good four stone heavier than I am. No wonder he is such a bugger to push in the wheelchair.

And no wonder his shorts didn’t do up when we tried them on the other day to go out on our picnic in the nice bank holiday weather. I noticed he was getting a bit of a paunch but just thought it was the result of all the feeding up and that it was better for him to have a bit of extra weight on him – well, the feeding up has clearly done the trick a little too well, especially as Nick is now taking three different fairly heavy duty meds to calm his movements, and they are definitely working. His spasms are much less pronounced and he is sleeping a lot. I don’t really like this, the fact that he is on the super heavy-duty knock-out pills, just like Ma.

But given the choice between the motionless flat-out slumber I see him in now, and the awful constant jerking and flailing and inability to get comfortable anywhere, anytime, ever – I guess that’s the way it has to be. At least his sleep is peaceful. So he isn’t using up anything like as many calories by just being alive. 

We need to keep his weight stable, says the dietician, it’s always better for anyone with HD to have a bit of extra ballast, but that’s a lot of weight to gain in a short time and he needs to be healthy too.

So it’s back to semi skimmed milk instead of full fat, just banana with his porridge rather than cream and honey too, and although he’ll continue to have an extra tea time visit from the carers to make him a milkshake, he’ll just have that now and not the potato cakes or syrup pancakes to go with it. Job done. We have fattened him up like a prize bull. Now to put the brakes on a little.

Actually, I feel the same. After being so ill at Christmas and New Year, and then hurting my back and for two months not being able to exercise or walk for miles the way I normally would, I have gained weight too. I’ve not even been swimming as much. It has made me a bit depressed. I’m annoyed with myself for it, but at the same time, a slice of toast or two is sometimes the biggest comfort. 

Now summer is coming and my back is much better and I want to be able to wear my nice dresses again and fit into my jeans without having to undo the top button.

So we’ll both be watching our weight, which makes me smile really. For the first time in our long and colourful history, I will be my brother’s Diet Buddy.

We always like going to see the dietician as she’s in a health centre in a part of town we don’t have any other reason to go to, and the shops there remind us both of Consett. 

After leaving the clinic we went to the cool charity shop where Nick has always found new clothes, and bought him a pair of light trousers with a drawstring waist ( very handy) and to Poundland for a bucket and washing stuff so the carers can soak his clothes and bedding when he’s had an accident. Happening increasingly frequently although Nick is still either oblivious or not admitting it -  I can’t tell yet. Then we bought a load of food to make some calorie conscious meals to kick off his new regime. Semi skimmed milk, lower fat cheese and houmous, yoghurts… at the counter, paying, Nick suddenly barked at the cashier,

“Where is your toilet?”  Like a six year old, he’d sworn to me that he didn’t need to go when we were back at the health centre. Now suddenly he was desperate. The cashier looked blank. Not the sympathetic type.

Nick, I said, This is Poundland, not a public convenience! We’ll go back to the health centre and use the loo there. It's not far.

The kerbs in that area are not graded so not very good for pushing wheelchairs or prams. When that happens I might normally go round to the next chamfered kerb via the road, but this one is a dual carriageway ring road, the kind where the traffic never stops, so no. I braced myself to heave Nick up the last step onto the pavement, aware even more of his weight now that I knew exactly how heavy he was. It was the first time I had taken him out since I’d hurt my back, too.

I thought I could do it but, “I need the toilet, Sis!,” and he suddenly gave one of his unpredictable backward lurches and his arm flailed out, taking us both a bit off balance, and reader, I couldn’t hold on to him and the wheelchair tipped right over backwards, Nick landing with his legs in the air and his head in the road. I’d had a small bag of shopping over my shoulder and I must have dropped that as I tried to grab him to stop him going over, and all I could see was a smear of red on the black tarmac next to Nick’s head and I screamed.

“PLEASE! Can somebody help us!”

Two women in tabards came over from a café. Together we managed to right Nick and get him sitting up and then somehow, by the grace of God, manoeuvre him back into the chair, which now had a broken handle, one of the brakes snapped clean off by the force of his weight and strength.

“Are you all right, Nick?” I checked frantically for the source of the blood. Realising with relief that a bottle of tomato ketchup was smashed and dripping from my bag. Not blood, but good old Kensington Gore.

“I’m fine” – and he really did seem to be. As we’ve said before, he rolls like a paratrooper. But I felt horror and deep shame to have put him in that position, with his head in the road and cars whizzing past at 40 miles an hour. The bucket was broken,  I’d had it hanging by the handle onto the wheelchair. Our shopping was squished. My hands and knee were grazed where I'd tried to get between brother and hard ground as the chair tipped over. But Nick was fine. Not only that but he had managed not to wee himself, which is almost more than you could say about me under the circumstances.

Anyway, thank goodness we were right next to the health centre. Mission accomplished, toileted, wiped down and checked over, we drove back home and installed Nick in his chair with a drink while I unpacked the remains of the shopping. I made him some lunch. Omelette and mashed veg, followed by banana and ice cream. He yummed it all. 

He insisted that he felt fine and I went back later to check and make sure that he really was, and he was happily watching rugby on TV and asking me to hang up his new trousers. He was also looking forward to trying the low fat yoghurts we’d bought, miraculously unscathed after their adventure, and now washed clean of tomato ketchup and pumpkin soup.

The wonder of the decreased cognitive awareness and poor short-term memory!

Thank all our stars he was OK and no bones broken or any trauma as far as anyone could tell. 

But I was in a state of shock for the rest of the day. Once again, I see that I can't do some things on my own any longer and need to recognise that. But I'm not sure where we go from here. 

Going out. Hooking up.

This week we had the first meeting of a Sheffield support group for families affected by Huntington’s. When I say “we”, six people turned up and only three of us were actually local. And one of the six was Diana, our regional advisor, and another one was a man who we gradually realised had nothing to do with HD at all but had heard me talking on local radio earlier and just rocked up for a cup of tea and the craic.

But hey! You’ve got to start somewhere….

The Salvation Army had given us a cavernous room set out like a lecture theatre with a tea urn at one end and a flip chart at the other. We huddled together at the tea end and chatted, awkwardly at first. Why have we come here and what do we want out of a support group? And are we really in such a minority to want a support group at all?

I can see why people would not want to get involved. Huntington’s is like a tightrope that you walk along precariously, not daring to look down but keeping your eyes on the middle distance (maybe this is a terrible analogy as I have never walked a tightrope and don’t have the slightest intention of doing so.)

The tightrope is also like a perpetual conveyor belt taking you somewhere you don’t want to go. You know what is ahead but you can’t focus on it because you’ve got to stay upright in the here and now on this spot. So in any group of people with HD there is always going to be someone at the next stage along and it’s like seeing your future, not in a good way.

Nick had wanted to come, though, and I guess we’re at the “nothing to lose” stage – he knows he can’t pretend he’s not ill, he’s in a wheelchair and can’t stop moving and his hands and feet bash out of their own accord every few seconds. But this is how it is, and he’s come to terms with that and doesn’t want to hide any more. As a result, he doesn’t get half the stares and comments that he used to. Now, if anything, people are accepting and often gravitate towards him as someone interesting to talk to.

I took him to the theatre yesterday; he had really wanted to go, and I thought it would be a nice thing to do for us both. Which it was – but coloured by the phenomenal strain of sitting beside a person with HD who can’t keep still in their wheelchair, whose wheelchair is creaking and croaking like a ship in a high wind, and moving slowly forwards and downhill on the carpeted slope. I realised that I just hadn’t thought this through at all. He could not get comfortable. With every fidget and shudder the wheelchair would jolt forwards or sideways another few inches, and every few minutes his arm or a foot would lash out and I was terrified he was going to whack the woman on his left.

I was supposed to be on his left but he kept moving away, and so every few minutes I would yank the wheelchair back and vaguely into place. Hanging on to the handles and crossbar with both hands, as if in a hurricane now, it took all my strength. Never mind “Macbeth” on the stage, the real drama was happening right here.

I genuinely thought someone might complain, as happened with the autistic boy recently in the cinema, but everyone was so kind. The ushers were fantastically helpful and when Nick (to my amazement, as the first act finished with me sweating and spent as if it had been me on stage) said he was having a great time and wanted to stay, I asked if we might possibly sit in the box. They were so kind. Nick had to negotiate a couple of steps up there but it meant he had a choice of two seats, the wooden chair in the box or his wheelchair, and we were on our own and not barging into anyone, and the poor people who’d been behind us could have an unrestricted view.

The ushers settled Nick in his new seat while I went back to get our coats and make my apologies, and by the time I got back to him, a woman who’d been right behind us was next to him in the box engaging him in deep conversation. I had thought she’d be really pissed off but she was sweetness itself, telling him about the restoration of the theatre and asking him how he was enjoying the play. Afterwards we had several people smiling and chatting to him almost as if we really were VIPs emerging from the Royal box.

So, I’m glad we did it. I have an ache all down my side and bruised hands and arms from the holding on for dear life, but Nick had a fabulous afternoon and actually so did I, but don’t ask me to do it again any time soon.

It’s the Nick factor though – continual small crises (and sometimes big ones) combined with an unusual charm that seems to draw people in. There is rarely a day without incident (he went to the theatre with one hearing aid as the other one had broken for the third time in a week, what with his flinging it across the table when he takes them out. He has already snapped the robotic arm for the remote control that was replaced yet again two days ago. And at nine o clock last night as I was lying blissfully in a steaming hot bath at home, I got a call on the batphone saying that he had broken his aerial (how???) and couldn’t watch TV.

This is Huntington’s. This is our daily reality, and there are variations on the theme for everyone, but it’s why I feel the need for a support group – just to tell someone, just to have someone else say, yes I know what that’s like. There was someone there at the meeting on Tuesday who didn’t have that with anyone else, and I so felt for him.

So we decided that we would keep meeting, even if it’s just three women and a dog for the time being, and knowing that a lot of people don’t want to be involved because they’re only stepping on to the ladder up to the tightrope and really don’t want to have to face these problems just yet.

We’re going to do some fun stuff. Food seems to be the main theme for the moment, and being around animals, and maybe (God help us) some singing of songs. It’s like the first tentative going-on-a-date where you just need an activity alongside the real business of getting to know each other. 

Get in touch if you want to join us, or if you already belong to a group and have any tips. Just please don’t suggest the theatre – although, having said that, panto season is coming up and perhaps that’s one place where audience participation and a comedy wheelchair will be actively encouraged.  

Retrograde something

If your life is in any way affected by HD you won’t be surprised to hear that the dramas continued yesterday, and coming from an entirely unexpected source. Apparently it’s planetary.

I have a long working day on a Monday so I’m out all day and pretty much helpless if anything goes wrong. Late morning I got a text from Nick.

“They have just taken my wheelchair away Sis”

Eh??? I texted him back.

“Nick. What do you mean? Who is “they”??”

No answer.

Eventually another series of painfully spelled out texts tells me that “they” had rung the buzzer and he had let them in, despite specific instructions not to after Sunday’s incident with Vic.

Whoever it was had simply told him they had come to collect the wheelchair, and Nick let them take it away. He doesn’t question anything and it wouldn’t occur to him to put up any resistance. Like taking candy from a baby. It makes me wince.

I put on my Sherlock deerstalker and got on the phone to the most likely suspects: the hospital mobility service who had issued the electric wheelchair in the first place, the local distributor who provide and service the equipment, and the Red Cross.

They all had Nick on file but all confirmed that they had not made any collections from that address, there was no reason why they would try to get it back, and that anyway they would never do that without prior consent or arrangement. Everyone was very helpful but adamant that it was nothing to do with them.

Finally at home that evening, I discovered that the mystery collector had taken the chair but left behind the cushion and half of the power pack, so it would be a fat lot of good to anyone.

Did the person have a uniform? Or any I. D.? asked my son later. Nick wasn’t sure. He didn’t think so. Oh dear. 

The only possible conclusion was that he had been scammed.  He is so vulnerable. You never know who is watching, and we have already established that there are some nutters in the building. Horrible, unsettling thought.

Cut to today, and I suddenly had a wild but inspired guess. I called the big Red Cross warehouse in the back end of Rotherham. Just in case. What do you know, it turned out that they had it. Combination of a clerical error suggesting that the loan we’d had months ago and returned in August, was still outstanding, and an over-enthusiastic but dim volunteer who had taken it upon themselves to round it up. I was too grateful to make a fuss.

One of their lovely, kind regular drivers phoned me to say that he was dropping it off and had left it outside Nick’s front door and all was well.

So that was Monday’s drama. Meanwhile, the key safe is still on its last legs but a replacement will be fixed next week (naturally it turns out to be a discontinued model but some kind soul at the fitters has searched in their cellar and found a spare), the bedroom radiator is still hanging off the wall and the repairers have not got back to us yet, and Nick has found the hearing aid he lost on Sunday but lost the other one and it has not turned up yet. Which means that he hardly hear a thing and has been turning the TV up, and although he has finally understood to keep the volume low, I fear that it will just inflame Vic to the point of no return. He was at it again last night, threatening the carers and my husband and banging on the ceiling, and the housing officer has not even acknowledged my messages let alone respond. The police have been in touch but explained that they’ve had a really difficult weekend with bonfire and firework activity so we won’t see them til later this evening. All we can do right now is keep calm and carry on, as usual. Well, after a fashion.

Just another day in Carersville

Someone asked me the other day what exactly my role as a carer for Nick involved, and I muttered something about project management and admin. 

It is hard to explain all the things you do, often a lot of them at once, so I generally don’t even try. Other carers understand, and the rest is probably like trying to explain the minute complexities of your job, or how you manage a dog and a pram and two kids every day on your morning school run. You just get on with it and do it, that’s all.

Some days are relatively incident free, many not. There are constant issues and freak-outs and crises, but it seems to come in cycles. If you can bear to read it, I’d like to tell you about the last 24 hours.

Yesterday, I dropped round to Nick early because I’d done him some shopping the night before and had a bag of groceries and his bank card. Two carers were there, feeding him his porridge, sitting in the gloaming with the curtains closed. Nick was sitting at a strange angle with the castors of his chair unlocked, so with every laborious mouthful he skidded a little further away from the table, and the spoon. The carers were surprised when I mentioned it, but to position him in his chair and lock the castors has only been in the effing care plan since April and I keep coming in after they’ve gone and finding him shooting across the room. Not to mention the porridge all down his jumper.

Meanwhile the cream for his very cracked fingers had arrived. I’d had two long chats with the District Nurse and then the GP about this because Nick has developed some nasty sore looking fissures in his fingertips. Some of them were bleeding, though he says it isn’t sore and he hadn’t noticed. But the nurse and GP agreed it needed some attention – she’s prescribed a cream that the carers can apply twice a day.  I asked these two how it was going. They both looked blank. It turns out that they have been putting the cream on his bottom. His fingers look as sore and gnarly as ever but he’s got a bum like a baby.

Choose your battles, I said to myself between gritted teeth, unpacked the groceries and made a memo to call the DN on Monday.

“Have a nice lunch, Nick, and see you later”

On Saturdays he goes out for lunch with a PA. Just once a week. We had a lovely Welsh lady who used to come, tiny but strong. She didn’t make a squeak about the heavy wheelchair, but since she has left to look after a sick husband, none of the other carers from her agency will touch it. Nick has had different people every week, they come once and then disappear, and I feel increasingly frustrated because it is so important for him to have an outing and some company that isn’t me or Simon. 

He looks forwards to his Saturdays - and it is such  a godsend for me too, to have a break on a Saturday afternoon when I can go for a swim and just unwind and not be worrying about him. But lately it’s not been going well.

Last week he finally saw someone who seemed to be up for staying the distance and we were expecting her again. Nick had been thinking about where he’d like to go. We’ve agreed with the agency that while the weather is still OK, the PA will take him locally in the electric wheelchair to one of the many coffee shops and cafes around here, just minutes away. No worries about the cumbersome chair or getting in and out of the car.

It was a glorious autumn day and I was going to wander into town and have a bit of a Tiki tour, as our NZ rellies say, on the way. Charity shops, maybe see what’s in the market at my favourite fruit & veg stall, just stroll at leisure for once, then meet a friend for a coffee. I was literally picking up my keys when the phone rang…

“It’s Margaret” – one of the PAs who’s previously been to Nick and then said she couldn’t cope. Not the one from last week, after all. 

Margaret was in a flap. She’d been trying to open the key safe for the last 45 minutes and it was jammed. With four care calls a day to Nick, it gets a lot of welly. She couldn’t get in to the building to Nick and of course he doesn’t hear the buzzer or answer his phone. I said I’d be right over.

I opened the doors with my key and we went in to Nick. I could see that Margaret was not keen on taking Nick out, “there isn’t time now” she said, “I’ll just do him a ready meal from the freezer and we’ll stay here.”

Oh no you won’t! I thought. Apart from having spent almost an hour fiddling with the key safe before phoning me – time that Nick has to pay for – he looks forward so much to his outings. He sits in the same place day in, day out, can’t leave the flat without someone taking him, and it is just not fair on him for her to take the easy option.

“How long have you got left”? I say, looking her in the eye.

An hour.

Great! I’ll get the ramp out if you help him on with his shoes, you’ve got plenty of time to go to Hagglers Corner, it’s five minutes away. 

I don’t know where it is she says. I explain, and draw a little map. Nick knows, in theory, where it is, we go often and we went there for lunch just a couple of days ago, but in the heat of the moment his cognitive difficulties get in the way and he’ll forget.

What about the key? She says. Ah, yes, indeed, what about the key. I have a bright idea. You take mine, lock up and put the key through the letterbox when you go, and I’ll stay here to call the emergency key safe people and I’ll use the back door key. (Bonus of having had the locks changed in the summer)

Excellent. I wave them off.

Call the key safe people. Our offices are now closed until Monday. Whaaat? At this point my lip starts to quiver and I start feeling a bit wobbly. My trip into town has receded into the same distant place as my eye test and new glasses and haircut and all the other things I never seem to get time to do, and I text my friend to say I might have to call it off. My friends are used to this. Sometimes it feels like an excuse. I promise you it’s not, in fact even the best of them has no idea how many emergencies and curveballs we actually have. It’s endless. And the crazy thing is, it still takes me by surprise because it is impossible to anticipate. When I saved the emergency call-out number for the key safe company, could I have known that it was office hours only? or that this would happen on a Saturday afternoon? Could I have known that Nick would pull two radiators off his wall? And, Nope, still not fixed. Must chase again. 

Meanwhile, I call the care providers and we agree that later Simon and I will make Nick his dinner, feed him, give him his tablets and get him ready for bed, and they will cancel their call for tonight. They’ll wait to hear from us in the morning before trying to get in to the property to do Nick’s early morning medications.

I’m writing this now having been up since 7am waiting to hear from the Adult Social Care services who are going to fit a temporary keysafe for the carers to use.

I have the spare key, and the arrangement was that I’d get a call around 7.45 and I’ll take the key down to Nick’s to use with the temp keysafe until the other one can be fixed. It’s getting on for 9.30 now – he needs his meds, I’m beginning to fret, better just get down there to him I guess. Except the contact number the repair team will use is my landline…maybe they have already done the job, fixed it, and no-one had told me?

Oh. My husband has just stumbled downstairs blearily holding his mobile. I’ve been waiting by the phone for two hours, carrying landline and mobile to the kitchen and bathroom with me just in case, and for some reason they’ve called him.

If I could just wave a magic wand to make life easier for carers and the people they care for, it would be for clearer communication procedures. So, so often I am waiting by the phone, ringing up, waiting on hold (I know I go on about this a lot but it is such a big part of the problem), chasing chasing chasing, only to find that the issue has been passed to another department who have not got my contact details and are trying to get hold of Nick on the landline that he will tell me later was ringing but that he will never answer. There have been several occasions when the case has been closed because Nick has not replied to messages and no-one has got in touch with me. And then we have to start all over again. Or, the issue has actually been dealt with but again, no-one has told me. It happens all the time and makes me feel utterly powerless. And scared for Nick, because if someone comes into the flat, say to measure the bathroom door, he doesn’t really understand who they are or what they are doing but he lets them get on with it anyway.

                                                

***********

And there’s more.

I got to Nick’s to meet the ASC team with the new keysafe, only to find the old one open on the wall, and Nick’s regular carers in the flat feeding him his porridge. It must have taken some strength, but they had managed to get it working. Then the ASC social workers arrived, had a look and said they would fit the temporary one anyway, just in case. Carers left, and the two women were outside, I had the kettle on to make Nick a coffee while crawling around on the floor looking for his lost hearing aid, when there was loud knocking at the front door. At first I thought it was the social workers coming to say they’d finished, but no, it was Vic. Bright red face to match his t shirt, towering over me in the doorway, calling me a C***.

What did you call me?

You heard, you f***ing stupid C***

What’s the problem, Vic?  
I've had enough of this f***ng muppet and his noise. 
(But there was no noise in the flat. I took Nick's radio away six weeks ago and the TV wasn't on. The only sound was the kettle boiling. And Vic shouting.)
What noise, Vic? 
He moves closer, right into my space. 

F*** off! I’m not F**ing talkjng to you, you f***ing muppet C***

And so on. There wasn’t any reasoning with him and the sheer force of his rage was scary. He kept swearing, jabbing his fingers an inch from my eyes. 

Look Vic, I said, we’ll talk when you’ve calmed down

“I don’t want to talk to you or your f***ing family, I’ve had enough of your f***ing family and that F***ing muppet in there, he’s making me mentally ill, I’m having him…”

…at which point I tried to close the door, but he was stronger and pushed it open. That’s when I got really scared. He was so close, I could feel his breath on my face and smell his sweat, and he is a big man, a big and very angry man. His rage was something you could almost see, pulsating like an electrical current. I genuinely thought he was going to hit me.

I could feel what his fist would be like when it smashed into my face, and was steeling myself in the doorway, trying to stand my ground, with Nick helpless in his chair just a few feet away. If he was going to have Nick, he would have to get to me first.

I told him I was going to call the police and he swore some more but gradually backed off and went back upstairs. Then I locked the door and phoned 101. The social workers had been outside, trying in vain to attach the temporary keysafe to the railings, I don’t know why they couldn’t do it but they couldn’t, and they had heard the shouting. Talking to them I realised I was shaking and just started to cry out of sheer shock. They will log it at once but where does that information go? Nothing has changed since the smashed door in August, and this is just getting out of hand.

So now I’m waiting for a call back from the police. Nick is oblivious. I explained to him what was happening – the key safe, why the two women were there, Vic having a go (I don’t want to scare him but he needed to know why I was upset and calling the police) but all he was really bothered about was whether he has any Mars Bars left in the cupboard and if not could I get him some more. And some tinned fruit.

It’s still only just past midday.

Techno Techno Techno Techno

Oh praise be for technology and the wonders of the twenty first century!

I might curse them some of the time and feel like a Luddite, or those dim-witted peasants in “Jabberwocky”, but this week the gods of Techno have smiled on us.

A woman from the Sensory Impairment service came to see us; just as I’d suspected, she’s one of three part time workers covering the whole of the city for every aspect of hearing or sight loss. She says it used to be a team of sixteen.

I’d already identified them as the people we needed to talk to but couldn’t get through on the phone. The housing officer told me he’d made a direct referral, but he blinking well hadn’t as she had never heard of him or had had any such thing, it was my persistent phone calls, culminating in an out of hours wail to Adult Social Care, that did the job.

But she finally came, and immediately sussed out the problem and within half an hour has ordered a hearing loop system for Nick’s room so that he can have his TV and radio as loud as he likes with his hearing aids as headphones and no bother to the neighbours. Geeenee-yuss.

It’ll take a couple of weeks, maybe three, but she estimates it will be with him by the end of the month. You can’t imagine the relief. I’m going to tell the man upstairs the good news and ask him to hold his nerve just a wee bit longer, and cross all my bits for a bit of a lull in the turf wars.

And today we’re getting Nick’s new electric wheelchair delivered, all courtesy of our wonderful NHS and the Red Cross. He won’t be able to use the controls himself, it’s the kind that someone else has to operate because his movements are too erratic. But it will make life a lot easier, I think, and give Nick a bit of gravitas; we’ve been joking that he looks like some kind of veteran in his current one, on loan from the Red Cross and with their giant logo on the back as if he’s just been air-lifted from some hideous war zone. Though what am I saying – every day with Huntington’s is a hideous war zone, neighbour problems or no.

The new chair has got a power pack and everything and as Simon says, will make it a whole lot easier to push Nick uphill to the pub. 

So it's been a positive week so far, and Nick always did love a gadget. Just like that stupid song by 2unlimited, I feel like singing, There’s no limits!

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.