Well did you evah?

What a swell party that was.

I was a bit wired and tense all day without really knowing why, just wanting so much for the day to go right for him. He’d had some cards already and in the morning we opened them and a few of the presents. Envelopes are beyond Nick now but he can tear open wrapping paper like a child, just flinging the bits on the floor, gleefully revealing some new aftershave, some chocolates and some audio books. An early Bruce Springsteen CD that he had always loved but had got lost or borrowed and somehow never replaced. A set of sturdy handled “good grip” cutlery to help him eat more easily. Some hankies and – piece de resistance – a very beautiful chunky pipe because we are trying medicinal cannabis as a muscle relaxant.

I am not totally convinced about this – is it just another avenue for his addictions? - but Nick says he really feels the benefit (well he would, wouldn’t he! I think to myself) and naturally both our teenage sons are keen to back it up with extensive research they’ve done on the internet. I’m still not totally convinced but if it makes him happy…and unlike the wine, he probably won’t be able to operate it on his own and will need some assistance. “What, from your lot?” said a friend, laughing raucously.

We said we’d drive him out to the countryside to have lunch in a nice pub, but I had gone over a kerb on the way and the tracking had suddenly gone AWOL so with the steering swinging wildly around like a dinghy at sea, we didn’t dare. It would have to be the nearest place with a car park, ten minutes from his flat. Which just happened to be a pub both Nick and I had worked in about a thousand years ago. All through lunch I felt terrible that I’d messed up his treat, but actually he said it was fun to be somewhere with so many memories of his younger self and all his antics.

And the party…I could just not have asked for more. We’d invited four friends of mine who have got to know Nick and really taken to him, there were the three of us, and lots and lots of food and fizz. Fizz all round. One friend brought flowers, another one some bunting from Nepal, everyone brought cards and wine and then, though I hadn’t dared expect he would really come, a surprise guest of honour – one of Nick’s great friends from way, way back who had seen the Facebook post and got in touch. I hadn’t told Nick as I honestly didn’t think he would actually come but it was like one of those tear jerking TV reunion shows to see him walking in to the room and Nick’s dawning register that it was him, his old mucker.

So it was a great birthday. A swell party. And more to come, even if our car is off the road and we have to push him in that blinking war-horse of a wheelchair with bits falling off it.

Birthday Boy

Nick’s birthday is this week. He’ll be 55 – finally old enough to qualify for residence in a sheltered housing association though it’s too late for that for the time being. He is happily ensconced in his council flat, and the bathroom adaptations and wheelchair ramp are to be installed in the next few weeks.

“What would you like to do for your birthday?” we asked. He said that he would like to have a party. Well – I had already made that declaration to myself that we would be more social, bring the world to him if we needed. His list of invitees included his children (currently in the middle of GCSE mocks in Newcastle) our 91 year old stepmother, his lovely friend from the north east (whose son is also struggling with GCSE mocks) and his old school friend from London. 
With less than a week’s notice for making a trip to Sheffield on a Thursday night, I thought it might be a wee bit unrealistic. But we have invited them all anyway, with the proviso that we know they probably won’t be able to make it this time but not to feel put on the spot, we’ll have a proper party later in the year with a bit more notice and preparation time. Thursday will probably just be us and one or two friends who have been really good to Nick in the last few months.

But I have done a slightly unethical thing (or is it? I don’t quite know) and gone to Nick’s Facebook account to put a call out to all his friends and contacts there. Nick is no longer able to type or even open up his laptop anymore, I explain.  He can’t keep in touch on his own initiative but his heart still often turns to his old friends. So this is his sister posting from his page to tell you that it’s his birthday coming up and he would be so thrilled to hear from people. Please get in touch if you’d like to send a card and I’ll give you the new address.

I’ve had lots of replies – many from the wives of his old school friends, ain’t that the way, I thought to myself! - and some people didn’t even know Nick was ill let alone that he is back in Sheffield. They are all keen to get in touch and the wives say they will give their husbands a nudge to make more effort to visit or telephone. So I think I have done a good thing but I haven't told Nick so it does feel slightly weird, like organising a surprise party for someone behind their back. I just hope it pays off with lots of birthday wishes and cards to make him feel loved and connected with the wider world. 

Meanwhile, we had been talking about how this time last year I had gone to visit him in Consett and neither of us could remember what we’d done to celebrate.

All his 2017 diary entry (written by me, of course) for the day said was, “Happy Birthday! Mel visiting”

It wasn’t til much later on that I remembered exactly what we’d done. We had gone for lunch at our favourite Italian place – kind of a roadside caff from the outside, but a wonderful hidden gem once you ventured in, with the most extraordinary food. It’s a few miles out of town and back in his “going out for lunch” days Nick used to go on the bus, but since he had become more wobbly he only went there when I could take him in the car. 
So we went there, to Michelangelo’s for lunch and then in the evening Nikki and the children came to visit. We all went to Nick's favourite pub down the road and then came back and opened a bottle of fizz and talked excitedly about the campaign I’d been hatching up to raise money and awareness for the Huntington’s Disease Association. 


All good – until after they’d left and I went to bed, Nick said he’d stay up a bit longer to watch TV. That was midnight. I woke suddenly around 2am with a sense that something wasn’t right. The hall landing light was still on and I could hear Nick’s bedroom radio playing much too loud.
I was scared that he would pass out again, be sick and choke, so it was a frightening night as I tried to stay up, dozing with one eye on the open door and not daring to nod off properly until it was almost morning.

“Nick?” I got out of bed and blearily went to see if he was ok. He was lying fully clothed and flat out on his bedroom floor, squeezed weirdly between his bed and the chest of drawers. One of the drawers was hanging out and looked as if it had hit him on the head. I couldn’t wake him. Couldn’t move him. He was out cold. Was he breathing?

Thank God, his alarm bracelet was there on the table and I pressed it, then had to run downstairs for the phone – and there on the kitchen work surface was the bottle of brandy I remembered seeing when I‘d filled my hot water bottle before going to bed. I nearly screamed. It had been full at midnight. Now it was just a couple of measures short of empty. 
When the paramedics arrived they were cheerful and calm but I was visualizing hospital emergency admission, Nick needing to have his stomach pumped – a whole bottle of brandy in less than two hours! When he had already had a fair bit to drink earlier. 

But the team had him sitting up, telling them his name and date of birth and they calmly got him undressed and into his pyjamas, joshing him because he had obviously been celebrating his birthday a bit too well. 

I was scared that he would pass out again, be sick and choke, so it was a frightening night as I tried to stay up, slept with one eye on the open door and didn’t dare nod off properly until it was almost morning.

When I finally woke up and stumbled through to his room, the bed lay rumpled but empty, a radio chat show at full blast downstairs and there in the kitchen was Nick, dressed in clean clothes and bright as a button, making himself an instant coffee. That’s when I realised that he had an alcohol problem. To be able to drink as much as that and be perfectly fine the next day, could only mean that he was used to it.  

I had seen the bottles in the recycling and I always knew Nick liked a drink but I'd had no idea of the extent of it. Actually I still had no idea until he actually moved to Sheffield and I understood just how much of an addict he was. Visiting only every few weeks, I had only ever seen the social picture, not til now the whole bottles of late night brandy or the passing out cold.

So that’s how we spent his last birthday. I'm hoping that this one will end better. 

A Fine Vintage

It's what I’m wishing for in 2018, a fine vintage year of mellow fruitfulness. One that lingers on the palate and in the memory - sociable and warming but easy on the pocket as well as the old grey cells. A Grand Cru, Chateau Pearson 2018. Well, we can only hope!

Christmas seems such a distant memory, even though we’ve still got the cards and decorations up, and all the excitement and bonhomie of New Year too.

Today it’s drizzling and my head is fuzzy and it really feels like that sudden unwelcome bump back to earth and back to reality.

I bought Nick a new diary for the year ahead, and put the 2017 one in the recycling. Then I took it out again as I realised he has kept all his diaries for the past fifteen years and maybe he wants this one too. A record of a year in which he made no entries himself but the pages gradually filled up with appointments for health professionals and all the details of his move to Sheffield. Then: benefits advice lines, social services, council tax, housing and emergency accommodation officers, builders, plumbers, support workers, care providers, hospital, dental, medical appointments, butcher baker and candlestick maker and Uncle Tom Cobley and all. The strange itinerary of someone whose body is no longer entirely their own affair.

There are some fun things there too – his weekly outing to the pub or the cinema with Simon, his Saturday lunch with one of the carers from my old firm, the odd drink with his old friend Dave.

I'm determined that this year will have loads of those and we'll be kicking off with a party next week to celebrate Nick's birthday. 

But in the meantime, here's the sobering reminder of how much things have changed. The diaries tell a story better than words. In 2004 he was running a business and doing some catering work on the side for his (then) in-laws. Married. Cooking. Driving. Not socialising much, a toddler at home and another baby on the way, a hard working family man.

By 2013 he was living alone, separated but seeing the children at weekends, still working and driving but not for much longer. This was his manic phase, making sense of life by writing endless to-do lists and ticking them off.

A year later he was still making lists but his writing is wobbly and wild. By 2016 he had stopped making lists and his diary lay on the kitchen counter open at the wrong week, no entries at all unless they'd been made by me. That's when I knew it was time for him to leave. 

This year? There may be trouble ahead, as the song goes. There are certainly physio and support service appointments and, as Nick's mobility has taken a visible nosedive lately, probably meetings with health professionals to talk of electric chairs and hoists. All this will be in the diary. 
But I am planning lunches, outings, bringing friends round to say hello (my friends - shamefully, many of them have not even seen Nick in the time he's been here. Not for want of trying but because it's been difficult. It's hard enough to get to meet my friends full stop these days - how is it that we all seem to have got busier?? - and Nick's care needs and somewhat unsocial hours have made it tricky to fit into other people's patterns. Also, in truth, I have often really needed to get away from him and see other people, think other thoughts.) But I think it's time to bring them into the picture and make his little flat into a party house. When we have made the effort to involve people and do something social he has enjoyed it so much, "Oh, I have enjoyed this. It's been lovely!" (for all the world sounding like our dad) so I want to make it happen more.
I want to make the most of our time together while Nick is still able to socialise, and this year the diary pages are going to look like something from the Great Gatsby. Photos, leaflets, phone numbers of pretty men and witty girls, coloured inks and felt pen doodles? Yep. There may even be stickers. I am determined that this is going to be a very good year. 

It really is A Wonderful Life

This week I have heard some shaking news. Two people I know have had their respective all-clears from test results for illnesses that would have been deadly. I think both of them expected the worst and now need to recalibrate their whole thinking. I know what that feels like after having the genetic test for HD. The reprieve from a death sentence brings its own shock waves - huge relief and joy of course but a kind of half life of strange mixed emotions too. It's not always simple. 

In the same week, a beautiful young friend has been terribly injured in a motorway car crash, has not regained consciousness and is not expected to live. Someone just stretching her wings, with so many hopes and plans ahead, so much talent, just gone.

You can’t make sense of it.

How fragile we are, how much of a mystery life is. How much we waste of it and take it for granted. When I hear this news I realise yet again how precious it is just to be here, breathing and feeling the sun on my face (yes, in December!) and able to hug my loved ones.

I think of how rubbish things seem now for Nick and how much I fret about his quality of life - but he IS alive, and we can still cherish the moment and the time together. For all the frustrations and furies and everyday grieving, we are here together with a bond of love. Terrible, wonderful news that reminds me just how thin the line is between life and death - it doesn't half make you want to carpe the feck out of the diem. 

So I will shrug away the non-arrival of the promised parcel and the peeling paint in our hallway and all the silly little things that are bothering me, and Nick will get extra tenderness and hugs today, even when he's had a skinful. The sun is shining and we're alive. 

Yep, I sound like James Stewart at the end of "It's A Wonderful Life" but hey, it is almost Christmas.  

Hope. Caution. Hope.

The texts came, one after another, from six different friends as I was picking my way home from work along icy pavements.

“Have you heard the news?”

No, but I soon had.

Amazing news!

A breakthrough in gene silencing research means that a drug injected into the spinal fluid has safely lowered the levels of huntingtin – the rogue protein carried in sufferers’ DNA – and will slow or even halt the progress of the disease. It’s not a cure but it’s the nearest thing there’s ever been, has safely passed the first stages of human testing (which is a biggie) and now researchers know they are on the right track.

AND (and this is an even bigger biggie, a huge thing) it has put HD onto the front pages of national news for probably the first time ever, so it is in the public eye and people are finally getting to know something about it. Recognition - it's what we have wanted for so long.

I knew there were clinical trials going on as Nick was invited to be part of them. It was three or four years ago now. He had been reading about gene silencing and was very excited about the prospects of a cure or certainly a slowing down of the symptoms. Unfortunately the onset of the disease affected his ability to concentrate and he became paranoid about opening his post in case there was something nasty in it. At least that was my rationalisation, as he couldn’t even vocalise his fears. 

He had completed the first round of surveys to take part in the testing but as all the invitation letters went unopened after that, it never went any further. In the early days of his illness before he was diagnosed, he had got into a lot of financial trouble and the not opening his post was a clear echo of that – but now it was worse, I would go up to visit him and find great stacks of letters teetering in an in-tray, sticky with coffee and sometimes cat wee, more behind a door or stuffed into a cupboard out of sight. Weeks, months' worth of post. It could take me an entire evening to open them all and sort them into piles. 

Some of them were lovely, handwritten letters with wedding or party invitations or postcards from his children or even a birthday cheque from our stepmother. Very obviously not final demands, but he still couldn’t bring himself to deal with them. 

So the gene silencing information went unopened too and he never took part in the trials.

Nevertheless, he is delighted. "Do you think this would help me? If I had this treatment I wouldn't get any worse?" 

It's early days, I say, we can only hope. 

But I am cautious too. It is very early days and the research is still just that - research. The treatment may not be available in Nick's lifetime. But the possibility still lights him up, the thought that the world is on his side and he is not entirely alone with an illness that hardly anyone has ever heard of. 

But I’ve been reading all the press about it and some of the descriptions of HD have made me so angry. Some reports herald the discovery of a cure – it is absolutely not. Not yet.

And there is varying accuracy in some of the commentaries. I know it’s science and not a filler piece about what the royal family are wearing at Christmas but for goodness sake, do a little bit of research. 

The Express doesn’t even mention the characteristic involuntary movements or the ghastly, inexorable progression but references mild psychiatric disturbances and “a disease that may even turn deadly”

I feel like inviting their reporter to Professor Bandmann’s HD clinic to see just how deadly. To see with their own eyes HD patients like skeletons in  an end of life nursing facility, or just to watch Nick trying to sit in the hospital’s weighing chair and moving about too much for them to get a reading.

We still don't know whether this drug will effectively slow the progression of the disease in people who already have it, hence my caution. But it's the first thing that has worked on a genetic level rather than just calming the symptoms, and that is a truly amazing thing, so we have to celebrate that glimmer of light and hope. 

We saw Nick's children at the weekend and I’m just overjoyed to think that they might escape this fate.

Burn after reading

“The Cat has left the Building” 

It sounds like a code message between Cold War spies, but I was finally able to text this to Nick’s landlord last night after Simon managed to bundle the poor creature into her basket and whisk her off to be reunited with Nick in their new home.

It took the best part of three days to catch her, and only then because the landlord was anxious to start stripping out the leaking bathroom before the cellar below got completely flooded. It has been like this for weeks but the landlord kindly said he would wait until Nick moved out to start bottoming the whole thing. He has been saintly, considering that this is the third time he’s had to remove the bathroom fixtures to repair broken pipes, and the floor is completely sodden. The poor cat was hiding in the furthest possible corner beneath the bath, crouching on the sodden joists and too frightened to come to our encouraging coos and chicken legs, followed by the terror of men in big boots starting work in there, so it must have been a relief to be captured at last. 

And the expression on my brother’s face to see her safely back, and the purring she made on arrival at last, made the whole thing worthwhile. So all three of them are together in their new home and seem happy to be there.

Behind the scenes it’s a slightly different matter. I remember what a shock I got the first time round when Nick moved here in May, when all the arrangements I had so carefully been setting up for weeks just dropped into a vortex where papers had been lost, information not passed on and all support simply stopped.

I don’t think it’s quite as bad as that now, but there’s an echo.

So this week I have become the Butt-Kicking Battleaxe as one thing after another goes not according to plan.

Housing benefit application lost in translation, can I provide the documentation again. I will need to bring I.D and all the original documents into the council offices for approval. We'd been told a month ago that it was all being processed, but apparently someone had made a mistake and this is not the case.

The key-safe I requested two weeks ago. Written application handed directly to the new housing officer for Nick's area, “mislaid”. Whoops. Thankfully the social worker has pulled out a few stops and organised a temporary one so that the carers don’t have to wake Nick up and get him stumbling to the door to let them in for his morning call. 

The new carers from Care4S (another pseudonym, natch) have yet to prove themselves but don’t impress so far by twice not turning up til 11am to help Nick dress and administer his morning meds, then returning just an hour later to do his lunchtime call. 

One of them has such a phobia of cats that she hardly dares walk through the door in case she sees one of them (and there was only one of them until last night!) and won’t go in the bedroom because what if a cat leaps out from under the bed. She’s supposed to be helping him dress, wash and undress every day this week. In his bedroom. I feel sorry for her but my brother’s needs have to come first. 

It’s clearly not going to work out so I ring the company to voice my concerns.

“He could put the cats in another room when carers arrive” is their advice. No. I don’t think so.

He is severely impaired and cannot do anything of the kind, hence needing care in the first place. And besides, it’s a one bedroom flat! 

It is inappropriate for this carer to be coming here in these circumstances and I will leave it to you to make a different arrangement, I say, repeating myself slowly and firmly in the old broken record stylee.

Broken record doesn’t work with the TV installation company who fail to turn up for the third day running. Aside from wasting hours waiting for them, only to be told at the eleventh hour that they can’t make it today, Nick is terribly disappointed. Like so many housebound people, he relies on the TV as a companion and friend and was really looking forward to one of his special programmes tonight. I am incensed on his behalf and ring the call centre to complain. I had already negotiated a discount to make up for their first two no-shows, by now I think they owe me compensation for lost time as well as an apology. Fat chance. The call centre girl couldn’t care less. I ask to speak to a supervisor. Sorry, the supervisors have left for the night. Well of course they have! I let off steam with a blistering online review of their rubbish service but it doesn’t get Nick’s telly fixed.

Meanwhile a friend texts to tell me about her father who was admitted to hospital after a fall and was later discharged without his clothes, specs, personal papers and very expensive specialist hearing aids. Unfortunately they had all been mislaid. The hospital will look into it but can’t accept responsibility for lost property, it is up to the patient to look after their belongings. She is hopping mad as well as grieving for his helplessness and frailty and I completely understand.

It is immensely tiring as well as tiresome to be fighting all the time to put things right for a loved one who can’t do it for themselves, especially when someone was actually employed and entrusted to organise it properly in the first place.

It makes me so cross that when the TV aerial company or a council officer fail to do their job they can just walk away for the night and still get paid, while family carers have to pick up the pieces in their own time, which is already taken up with so many other duties of care and often when they’re already exhausted. Not paid to do it, doing it for love. In time that is so stretched that it would make your average public servant look like Richard Branson lounging in his Caribbean hideaway in comparison.

And it's the unfairness of it all that gets me in the gut, that someone like Nick who already has so many odds stacked against them should be at the mercy of sheer carelessness and - well, that's just it isn't it - lack of care. I care, and they say that love can move mountains, but it still won't set up a TV aerial or authorise a housing benefit payment. It's back to the to-do list and the phone calls and the begin again, Finnegan. 

It is a long, exasperating business but I guess this too shall pass and it will all come right in the end.  

New Home

Nick is safely installed in his new flat. He broke the loo seat the first time he sat down on it and has already lost both sets of keys.
We don't have a keysafe yet because the council officer who processed my request a fortnight ago is not returning my calls, so I have given my keys to one of the new carers (unbelievably bad practice but at the moment there is no other way to get in as Nick doesn't hear the buzzer) and the TV is yet to be tuned in because the man we'd booked a week ago didn't turn up, but Nick is happy and seems to like his new place.
One of the cats came with him and the other one is still hiding under the bath at the old flat. Ironically it's the one we had managed to catch and take home with us the first time round, when Nick moved here in May. The one that ran away and had to be rescued a week later when I drove back up to Consett to find her, seems quite chilled out and is exploring the new terrain amidst all the boxes we haven't unpacked yet.
And here's the crazy thing: despite all the paperwork stating that tenants must not keep pets, and all our fretting about how Nick would cope if we had to give them away, we discovered that the new place is crawling with cats. Everyone seems to have one! If anything, the main problem with keeping a cat here is going to be the inevitable turf wars.
So here we are. He's in. An outrageous amount of things yet to do but he's in.
And I am doing 16 hour days and too tired to write.