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.