Neuro clinic today. We are so lucky to be living in an area with an internationally renowned specialist team on the doorstep. I feel that Nick is a bit more…looked after. I like his consultant and immediately felt that Nick would have exemplary care from someone who really knows the subject and wants to do everything in his power to stop this illness in its tracks.
We arrive at the clinic on time for our appointment but there is a long wait to see the specialist. Nick is in his wheelchair but a nurse asks him to sit in a weighing seat so that they can keep track for their records; it’s important for someone with HD to keep their weight steady. It’s just a chair, wheeled, sturdy and green like some fancy sanatorium equipment, used on HD patients every day of the week I should think, but after about five minutes the nurse gives up.
“I’m sorry, he’s moving too much for me to be able to get a measurement”
Later on, the same thing happens with the blood tests. They work with HD patients every day but despite all their expertise, Nick’s jerks and spasms make it too difficult for the nurses to find a vein safely. Eventually they send us downstairs to the main phlebotomy clinic where I guess they have their methods for extreme cases…anyway, it is successful in the end.
Meanwhile, the consultant’s appointments are running late so having given up on the weighing, we are to sit and wait in the corridor. I wish we didn’t have to do this because I don’t want Nick to see the other patients.
While we are there, two women come in - are brought in – with their carers. Both in wheelchairs, both obviously with Huntington’s but in a very different form than Nick’s.
I can’t help scanning their symptoms. One looks a bit like our mum – thin, doll-faced, floppy, with the same child’s pudding bowl haircut that our mum had. Just twitching a little compared to Nick but – once you know what to look for – unmistakeably Huntington’s. She doesn’t speak, her carer talks to the nurses on her behalf.
The other – oh dear. Slumped in her chair, pushed by a young woman, perhaps her daughter, she wears a band t-shirt and glittery pumps. Someone has painted her nails and there's a sprinkle of blue and red stars tattooed on her wrist. She looks like someone who loved music, celebration, life. She looks like someone I might be friends with. Now her head droops onto her chest and just her feet and fingers move in small but relentless tics.
We carers clock each other but don’t speak; I want to but it feels a bit wrong, somehow. I expect they’re looking at us too because even though he’s talking and his speech is clear enough, no-one’s movements are as bad as Nick’s.
The thing with a progressive illness is that no-one gets better, only worse, so when you meet other sufferers there is that tacit awareness of their symptoms.
Nick has told me before that he doesn’t want to meet other people with HD because there is no solidarity; no-one wants to see someone else who’s further down the line and be confronted by what they themselves will become. And as a carer you don’t want to talk over anyone’s head as if they’re not there, can’t easily chat about them the way mothers with toddlers might do in a similar situation. I don’t know what other carers do in these circumstances, there is no manual for correct etiquette.
So we watch daft cat videos on his phone and I read clippings from the paper and pass the time that way, none of us looking at the other ones waiting.
On the way out, something amazing happens. Nick gets a call on his mobile from an old school friend, and he can’t hear in the echoing hospital foyer so I take the call and have a chat.
I’ve mentioned before that not everyone can cope with the way Nick is these days, and it is sometimes tough to be around him; he can’t hear well, he doesn’t always follow what is going on, he lurches around and spills drinks. Going out with him is a performance and you need to be very patient.
This old friend is evidently not at all fazed. These days he lives in London but still has family here and has visited Nick a few times when he’s in town. He says he remembers our mum with affection and how dignified she remained throughout her illness. As far as he is concerned, Nick’s physical symptoms are not going to stand in the way of such an old friendship, and he is keen to do what he can to organise a support network of other old friends who might be able to take Nick out and spend time with him. He’s phoning now to try to arrange a meeting for the next time he’s here, with some others of the old gang who are maybe not quite sure how to approach Nick in these new circumstances. They’re all up for it, though, so when might be a good time?
It honestly feels like an answer to my prayers – that Nick might somehow have a group of friends who accept and love him for who he is and will support him, even if just every now and then. One of them is even a dentist who will treat Nick’s dodgy teeth.
I’m so touched that he is making this effort from afar, and that for all the people who have fallen by the wayside or are just not sure how to cope or (like most of us) are simply too busy with their own complicated lives, there are one or two gems like Dave who just stay the distance.
Eight years ago today our dad died. I got the phone call early in the morning and went back to bed for the rest of the day like an invalid.
It was the first day of the autumn equinox and later that afternoon my brother sent a text saying he had been for a cycle ride and imagined that dad’s spirit was in each autumn leaf that was blowing in the breeze.
I still think those are beautiful words. He always had a gift for saying the right thing. But today when I remember that text and it is so close to my heart, at the same time I am thinking, wait a minute - my brother cycling?? Because these days Nick can barely walk let alone get on a bike.
Dad, as it happens, lived a full and loving life, travelling and smiling to the last. The Huntington's gene was on my mother's side of the family.
After she died he remarried and found a happiness he couldn't have dreamed of during all the long lonely years of looking after mum. He did this on his own, her sole and stalwart carer, while still managing somehow to hold down a full time job. He really played it down too, just getting on with it like the Yorkshireman he was, though I look back and wish that I had read between the lines of his cheerful communications, seen through all that perseverance and done a bit more to help.
When people read this and say things like, "you are so good to look after your brother like that", I just think of Dad and whatever I do for Nick doesn't even begin to come close.
Huntington's is one of those unpretty conditions that can quickly isolate everyone affected in their own different ways, and which inevitably involves not being able to do things for yourself, which inevitably involves care. Usually that care starts with the direct family - sometimes it's just too hard and not everyone can cope but most of us do what we can until the point where the illness becomes unmanageable.
It's just about love really isn't it? We do what we can and a lot of the time it's not much or not enough. I don't think you ever get it right. Dad did everything he could for mum but he was only human and I'm sure there were times he felt like strangling her, or just walking away. But he set me a fine example of how to live and how to keep on opening my heart and just do what is necessary.
So this is for carers everywhere, everyone looking after a family member or a friend. Raising a glass. It's what Dad would have wanted...
Once again, it seems to take a crisis to get things moving but the threat of eviction has galvanised all sorts of services into action and actually pulling together. What’s more, they have been calling me – yes, instead of the other way round!
We have many meetings lined up with different case workers. There is a sense that they’re all going the extra mile to help us and I’m so deeply grateful that I’m running out of ways to say Thank You.
Those lovely girls from Shelter have tweaked a few things on Nick’s application for social housing and now all we need to do is provide two forms of photo ID and a proof of address; they will even take the burden off me by collecting these from us and taking them in to the relevant department. I’m honestly bowled over by the fact that someone is prepared to do this for us and how much time and energy this will save me.
However, there is tricky stuff too. They need a complete picture of Nick’s financial situation and that’s where I feel as if I’m wading into deep, muddy waters.
Nick’s affairs are extremely complicated. He went bankrupt about twelve years ago, probably as an early manifestation of the illness; I can’t believe we didn’t spot this at the time but there were so many characteristic things about the onset of Huntington’s that I didn’t yet recognise. A lot of people seem to lose control of their finances around this period, making rash decisions, reckless investments and spending extravagantly. In Nick’s case, he set up about a dozen different bank accounts to try to manage his money, some of them joint accounts with a sleeping business partner who can no longer be located. There’s hardly any money in these accounts but I can’t close them without permission from this person and some of them seem to have occasional income from I’m not sure where. It looks as if they might even own some property together but Nick is hazy about the details. I am still trying to make sense of what is what.
My brother has always been the sensible, financially astute one, but he’s no longer able to deal with or explain his former decisions. He is certainly below the threshold though, as despite my frantic budgeting, his benefits have still not been fully reinstated and his savings are disappearing at a frightening rate.
Meanwhile, Acme are continuing to come three times a day although they’ve been clear that they don’t feel able to take Nick on long term as his needs become more complex. They don't - can't do a huge amount with the time they have but they've agreed to feed the cats and hang up the washing and all those little things that will just make everyone’s life easier, and so far they have been super-efficient and really, really nice. Their carers all seem to be beautiful black queenly women and after being so uncertain and worried I suddenly feel once again that he is in safe hands.
It is nevertheless a full time job for me to keep on track with the stuff of Nick’s life: the medical appointments, the housing and social services appointments, the forms to fill in, the bill paying, the moving money from one account to another so that he doesn't go overdrawn again, the radio to fix and the dicky telly to replace, the broken china to sweep up, the cleaning the loo and turning the mattress, the shopping, the cooking, the prepping, the ironing, the rationing of the wine, the outings, the entertainments calendar, the just being with him spending time, and the sheer elephantine enormity of keeping it all together. Even the best case-worker in the world can’t do all this for us.
Yesterday was quite a day. This is what it looked like. I don't expect anyone else to read this litany of worry and concern, I just need to record it.
1pm Arrive at Nick’s straight from work to find him only half dressed. He had somehow pulled all the middle buttons off his shirt during the course of the morning and it’s lying on the floor. He hasn’t had his breakfast yet, though the morning carers have been in - their last call as their service is now handing over to the new one, Acme. I make coffee and give him a banana to keep him going as we have two meetings arranged back-to-back this afternoon.
1.15 The Acme manager comes to do his assessment. He seems professional enough but I am increasingly angered by his lack of sensitivity towards Nick, his client. I’ve explained that Nick is hard of hearing so there are times when it will be useful for me to speak on his behalf but that he is quite compos mentis enough to discuss his own care requirements.
But time and time again the manager asks me things like “Does he use any walking aids?” “Can he go to the toilet on his own?” or “Can he feed himself?” without even looking at Nick, as if he is not even in the room. I make a bit of a joke of it at first, referring back to Nick, but start to lose my cool after a while.
“He’s right here” I say between slightly gritted teeth, “Why don’t you ask him?”
It's a classic case of "Does he take sugar?"
It's a classic case of "Does he take sugar?"
Acme do not want to feed the cats (“our girls will be scared”) will not have time to do more than give Nick his tablet at midday so he will have to get his own lunch – more preparation work for me, I think grimly – and although they have an hour allocated for domestic help, their care plan does not mention laundry so my request for them to set the washing machine going, let alone hang out the wet clothes, is met with a flat refusal. I will have to go back to the social worker about that, he says, only of course she’s away.
When he sees Nick’s bathroom and the state of the loo (let’s just say his aim is not always on target) he visibly recoils so I wonder if much proper cleaning will get done either. However – we don’t seem to have much choice right now. I need to find another care provider as soon as possible but in the meantime we had better all do our best to get on together.
2.30 Two lovely girls from Shelter come to see us to talk about help with re-housing. The landlord has been brilliant – much more tolerant than we could have expected given that Nick has wrecked the bathroom, caused two floods to the property below, nearly blown the whole street up several times before the gas was capped off, and generally been a liability. However the initial six month lease is now coming to an end and he has to think about the rest of his tenants, his insurance and – he’s very clear about this – Nick’s ongoing comfort and safety. It's really not an appropriate place for him to be living in. So he has asked Nick to leave.
I had filled in the forms for social and sheltered housing about a year ago, when Nick was still living in the north east. He is also on the “medical priority” list for properties with the kind of adaptations he needs, so in a way it helps that the landlord has issued an ultimatum. We were advised to talk to Shelter about getting help to speed things up. I thought that was for homeless people, says Nick. Well, yes – or those about to become homeless!
Anyway, the girls are kind and informative. They both bring Nick into the conversation and talk directly to him. One of them raises her eyebrows just a touch when Nick suddenly lurches out of his seat to pour himself another half pint glass of wine from his box, but she’s seen his case notes and evidently knows the score.
They’re going to see where we’re at with his registration and get back to us next week.
3.30 Nick starts to eat his lunch. I have made him one of his favourite things, a
cheese ploughman’s on some nice crusty bread, with salad. After a few bites and a lot of coughing he stands up and says he can’t eat it because he has a wobbly tooth and it’s too uncomfortable to bite anything. Since when? Just today. What about the banana? I ask, but he says that was quite soft. Of course, being Nick, he hadn’t thought to mention it until now. I have a look and it really is wobbly. I microwave some soup but he says he can’t eat at all, which is a disaster as he needs to eat. Damn! It’s been on my to-do list for weeks to get him to a dentist. Start phoning around and manage to get him an appointment for the end of the afternoon – in the meantime hang out his washing and try to get on with all the admin I was going to do today, including work out why one of his standing orders hasn’t been paid. Meanwhile Nick has an hour’s siesta.
4.45 Call on my mobile from the Acme manager. He doesn't feel he can take this case on as they can't do what is on the care plan, i.e give Nick a shower, without either the appropriate bath fixtures or specific guidance from the OT who assessed him. (As I had worried, there has been no proper handover) Therefore he is taking steps to hand the case back to the short term intervention team.
What does this mean? I quaver. Will anyone be coming to see him at all or what?
He thinks that I should talk to social services (I can't as it is almost 5pm and I'm about to get Nick up to take him to the dentist) because at the moment he doesn't think it will be his team who comes back this for the evening call. Then again it might be, it just depends on how soon the council pick up the request to take back the service. We'll just have to wait and see.
5.00 Off to the dentist. It turns out that Nick has not one but two wobbly teeth, his bottom front ones. His teeth are not in a great state at all and the dentist, who is extremely sympathetic and thorough in his explanations, says that it's often a problem with HD patients as it's so hard to brush their teeth properly. Sometimes they come loose through all the accidents and spasms too. But in the meantime two teeth need to come out - Nick has a local anaesthetic and bingo! they've gone before you can say, "Tom Sawyer". There's a lot of blood. The gums can't be stitched as they normally would because of the movements, but it's all packed with antiseptic gauze and luckily Nick seems to heal very quickly. His mouth is going to be sore though and he needs to stick to soft foods tonight. I buy ice cream on the way home and take him back to the flat for a rest.
Is anyone going to come tonight and if so, who? Later on I go back and meet the Acme manager again who has returned with a female carer. He's still not sure what's happening but his colleague will see us in the morning with more information. I feed the cats and make some dinner for Nick and hang out with him for a while, checking that he feels ok, that the bleeding has stopped and that he's not drinking much. "I'm just having two glasses, with water" he says, and once again I trust him. And once again I turn out to have been an idiot to believe him.
…as David Bowie so poignantly wondered.
This morning when I went in to see Nick I thought he was dead. He was lying so still, flat out and barely breathing, it was difficult to rouse him. Of course he had drunk a whole box of wine after I’d left him around half ten last night, despite strict instructions not to have any more and his promises that he wouldn’t.
He’d had two teeth out yesterday and the dentist had told him he’d need to be very careful with alcohol afterwards. He was tired when I left him and like a twit, I thought that he would.
Anyway, I wrote a big fat rant about what happened yesterday with the new carers but this is tomorrow, baby, as another old glam rocker once sang. They’re all coming out of the woodwork today.
Acme arrived while I was trying to wake Nick up and as discomfited as I’d been by the manager yesterday, meeting his partner today (the West African voice I’d heard on the phone) felt like a huge reassurance. Well, sort of. He was kind, approachable, intelligent, helped Nick out of bed and sussed out his needs almost at once. I would be more than happy to leave Nick in his care, or any team that he was managing.
Unfortunately he may or may not be coming back as Acme are not happy with the care plan they have been given by the social worker, who has bogged off on holiday. I’m not casting any aspersions on social workers, God knows I’m married to one and know exactly how hard it is.
But they say they can’t legally carry out the things in the care plan she made, which is totally inadequate for Nick’s needs in some parts and specifies things - like showering him – that can’t actually be done because the bathroom doesn’t have the right adaptations. He’s currently having a wash sitting on the edge of his bed and we’ve been waiting six weeks now for the specialised OT team to provide either some more specialised bathing equipment, or the go-ahead to help him have a shower again. Today for some reason he hasn’t even got hot water and we have to boil a kettle for the strip wash. It’s all profoundly dispiriting.
T says that Acme has told the council they can’t work like this and want to hand the case back until they can sort out some proper support with bathing. He is sorry, but he needs to protect Nick and not condone a contract that is plainly not serving his needs. He’s waiting to hear what they say.
We don’t know whether the council will agree to reinstate the Short Term Intervention service or who will be coming in at lunchtime.
Nick is still bleary and befuddled and doesn't seem to be quite sure what is happening despite our joint attempts to keep him in the loop.
I want to run away and hide. I can’t though. So I make yet another coffee and start cleaning instead.
The phone rang at quarter to eight on Friday morning. A man was asking for me in a deep baritone voice, West African by the sound of it, maybe Senegalese.
He was from Acme*, my brother’s new care company, starting today he said, but no-one was answering the door.
Erm, you WHAT, I said, although I had heard him perfectly clearly. I knew that the short-term intervention care service couldn’t go on indefinitely and that the social worker was keen to move us on to a more long-term arrangement with another provider. We had chosen a company with a really good reputation for working with Huntington’s patients but knew they hadn’t got any spaces for us yet. So in the meantime we’d been waiting for the default agency to get in touch to do their assessment of Nick’s specific needs and take it from there.
What I was not expecting was an overnight change of provider without any kind of handover or prior evaluation. No-one would be that unprofessional, surely?
So I was a bit shocked.
“We haven’t had any notice that the current service would be finishing and no-one from a new provider has come to see Nick – obviously you can’t start a whole new package of care provision for a vulnerable person without even doing an assessment.”
Oh, it happens all the time, he said cheerfully.
I told him that I wasn’t going to let him in without any kind of authorisation and that he’d have to get his manager to call me. Then I called the short-term team’s out of hours service (it was still only 8am) and tried to find out what was going on. They had no end date on file for their service with Nick, knew nothing about Acme starting and said their own carers were going in as usual that morning.
I got really worried then at the idea of this new company just rocking up unannounced and trying to do their own care at the same time as the current ones – overlapping services is a real no-no for obvious reasons especially if medications are involved, especially when this lot hadn’t even met him yet.
The out of hours advisor said she would investigate and get someone to call me back later but in the meantime to rest assured that their service was continuing as normal for the time being.
But on the way to work the call came to say that yes, in fact their service was passing over to Acme, due to my concerns they would hold it over the weekend as normal but that Acme would start on Monday lunchtime and do the assessment alongside their first visit to Nick. Apparently the social worker had authorised this and signed it off. What? Without any kind of handover or prior assessment?
“I need to speak to her immediately!” I said.
“Yes, that’s what I tried to do”, said the very nice duty manager, “but she’s on holiday now until the end of the month.”
This does not bode well. It is double plus un-good. Am I being precious because it’s my brother and I want him to have a VIP service? Or am I just expecting things to be done in a professional manner?
*not their real name. Might be giving the real one in due course - we’ll see how we get on…
We seem to have reached a point of equilibrium where, when people ask after Nick, I can say, “He’s OK”
His new medication seems to be helping to calm the involuntary movements and there is a subtle increase in his mental alertness, somehow he is less foggy. I have noticed that his drinking has stepped up a bit though, and he still isn’t sleeping well; I think he was expecting miracles and with this bastard illness there is no miracle.
But generally speaking, things have been fairly calm lately.
He’s got the new meds and a review appointment booked in with the specialist to see if they need a further tweak.
We’ve had his hearing aid repaired so he’s not quite as deaf as he was.
Carers are coming in three times a day and it’s almost always the same people so he can have a bit of a crack with them all and I know that he will be safe and dressed and fed – well, most of the time as he still tends to tell them not to worry, they don’t need to do it as I will be coming in to cook him dinner or change the sheets – even when I hadn’t made any such arrangement.
He has somehow managed to unpack and untangle all the wires to set up his CD player so he can listen to music as well as the radio, and although it takes almost a week, slowly turning into a frayed rag, he’s been reading the paper rather than just sitting, drinking.
And it feels good to have a brother again. Last night I realised we were having a normal conversation; he asked about my day at work and I told him some funny but unprintable ancedotes about my client and we heard a song on the radio that no-one else would really get in quite the same way. I had been to my book group at the library and come back with six books that I don’t know when I’ll get time to read, and we talked about those too. We decided to try some of the library’s audio books and I’m going to read to him (remembering how much we both used to love to read a bedtime story to our kids, doing all the funny voices and sound effects, though Nick says he gets enough of those with The Archers and I can probably leave them out)
On the other hand – the social worker is pressing for a more permanent care arrangement as the carers currently coming in to him are only supposed to be as a short term service. She wants a definite start date asap but the providers I want (an agency I know have a great track record for sympathetic working with Huntington’s patients) can’t offer anything for at least another month. It feels as if we are on borrowed time with service provision as well as in life.
He has not been able to have a shower for two months as the bathing equipment issued by the OT didn’t work – even with two sturdy and experienced carers, he slipped off the bath seat and banged his head so it was declared too risky to use. They won’t even let him stand up in the bath on a slip mat and have a shower that way. The down side of being in the system at last is that they have umpteen rules, regs and Health and Safety policies and even when it’s his choice they will not do anything that constitutes a risk. I can understand that but he’s a man who loves a shower and it’s a terrible shame for him.
So the bath seat got taken back to the Red Cross and it’s been a strip wash with a bowl of water and a flannel ever since. The carers are good but even so, after a random conversation with Nick about how things were going, I had to have a word about heating the flannel up beforehand so it wasn’t cold and soggy.
And then this morning I got an email from the landlord to say that they were giving Nick a month’s Notice to Quit.