Kittens on the internet

Funny, when I lived in Scotland there was an expression “mortalled”, to mean that someone was really drunk. It seemed like quite a sweet turn of phrase to me, without taking in any of the real implications; now the idea of getting mortalled makes me do a whole body shudder.

Yesterday I took Nick to the hospital to get his hearing aids repaired – a simple thing, but something about the miserable day, cold and bucketing with rain and having to splosh into a huge puddle just getting him out of the car, gave me the chills.

An emergency ambulance pulled up beside us and began to unload a scared, poorly woman on a stretcher. All around us were people hobbling, being wheeled, bandaged and scarred, pale smokers outside in dressing gowns and drips, everyone looking ill and, well, mortal.

Hospitals don’t usually affect me like this but it was like seeing the world through a different lens, a horrific one that I couldn’t shake off. How bloody fragile we are, that’s all I could see. And, for the first time, one day this will be me.

I’ve not been feeling very well this week, with stomach pains and back ache. Unusual for me. Something is not at all right. I’m generally strong as a Taurean ox and not given to imagining hideous illness every time I have a cold - although I did go through a childhood phase of acute hypochondria, thanks to obsessive reading of a Victorian medical encyclopaedia (quinsy, diptheria and palpitations in the space of a fortnight. My mum got rid of the book after she’d been about to call an ambulance then realized my “appendicitis” was on the wrong side. )

But this time, something is definitely not feeling right.

I’ve not been so well this year and apart from getting older, it doesn’t take much to guess why.  Tinnitus, weird Raynaud’s type frozen fingers, feeling exhausted and dizzy. The stress of the last few weeks with ongoing neighbour problems and the man upstairs physically threatening Nick, and our attempts to get some support, has affected us all. With each day that I beg for help and no-one calls back, the acid bores another hole in my stomach and no amount of meditation or lovely spring blossoms or kittens on the internet seems to soothe the anxiety away. 

And a friend died at the weekend – cancer. She was super-healthy, it just came out of the blue. It makes you stop and wonder.

It makes you face your own mortality.

What if there were really something wrong with me? But there can’t be. Who would look after Nick? There is Simon, and the carers who are gradually gaining confidence and my trust, and a handful of helpful friends and health professionals, but it’s me who pulls it all together.

I simply can’t afford to get ill. Trouble is, being a carer affects your health. Have you seen the statistics? They’re as scary as any Victorian medical manual.

But if kittens on the internet and walking in spring blossom help a bit, and taking Nick out to the countryside for a blast of nature and the heavenly hillsides, then that’s what I’ve got to do. I think perhaps it’s my quest in what is now my 60^th year  - to keep well, mentally and physically, because one of us can’t and the other one has got to.

Where the light gets in

The weather is beautiful, at long last! My flip flops have come out of hibernation and the coats and scarves have finally gone back in the cupboard after doing an in-out dance for weeks.

Nick sits indoors with his door into the communal garden shut and the curtains drawn. Every time I come in, I throw the windows open and let the air and the sunshine in. He says he doesn’t mind either way, but his hair is damp with sweat. HD trips your internal thermostat so it’s very easy to overheat, but he doesn’t notice.

We can wheel him in his chair right to the edge of the door looking out into the garden and it’s a good place to park for some fresh air and light, but really he just likes his habits and to sit facing the other way with his radio, newspaper and TV. 

Well – at least the TV and radio are working again and he can immerse himself in Netflix to his heart’s content. Science fiction, thrillers, science fiction thrillers, he can’t get enough and it’s all there at the fumble of a button.

He’s got to keep the sound down, though - we’ve had complaints again and the upstairs neighbour was making daily threats to Nick about the volume on his radio.

We got him some wireless headphones but he drops them, struggles with the tiny on/off switch or forgets to wear them altogether, so sometimes the radio does get turned up very loud. I was getting a bit scared as the carers reported that the neighbour was very angry, banging on the ceiling or coming downstairs  and shouting at Nick; on several occasions he’s tried to force his way in and they have had to prevent him. 

To my utter amazement and eternal gratitude, the housing officer, the one I thought was so useless earlier in the year, has taken this on and had a word with Vic upstairs and given him a direct line number to ring. Whenever there’s a noise problem he’s to call that, not threaten a vulnerable person who is not completely responsible for his actions. We shall see…but at least it feels as if someone is actually listening to us and is trying to help.

The other amazing thing is that since I really kicked arse a month ago, the carers have stepped up and begun to operate in a – well, let’s not tempt fate and say seamless fashion, no, it’s hardly that. But they are doing all the things they were always supposed to do as part of their support plan, and other little helpful things (like do the recycling, put the wireless headphones on charge, etc) without being asked. They look professional and seem to be taking a pride in their work. I think it has something to do with the increased level of care they are giving Nick as his ability to feed or dress himself decreases. Suddenly they are Team Nick in a way they never were before when it was just very basic duties. 

They have even taken over the storage and collection of medications so I don’t have to think about that anymore. It has taken six painful months but I think we are actually establishing a level of understanding and trust.

It is such a help, because I can see very clearly that Nick’s health is deteriorating. He can’t focus, he is loath to get out of his chair unless it’s to the loo or into the kitchen to get more wine, his movements are significantly worse. Poor love, he just can’t keep still; it is sorrowful to see.

What’s to do? Except be thankful that I don’t feel I’m carrying all these different and complex issues completely on my own anymore, and that Nick has his Netflix and we can take him out in the sunshine.

Anniversary Reaction

It was my birthday this week. The floor is still covered in bits of pink tissue paper and there is an alarming amount of chocolate and gin on the premises. It’ll come in useful, I’m sure.

Birthdays always make me a bit emotional, amazed and deeply touched to be at the receiving end of so much love and attention (like this year, when I have neglected my friends and been grumpy with my family and it really doesn’t feel deserved). 

I’m a lucky girl.

I’m also aware of time passing and that Nick has now been in Sheffield for a year; he arrived at the beginning of May 2017 and gosh, how much has changed.

It has sometimes seemed that we’d unwittingly won a competition to demonstrate Murphy’s Law, that every possible thing that could go wrong, did go wrong. Benefits and social services stopped, messages lost in cyberspace and the simplest seeming thing lost in translation. Everything, as if he’d vanished like a Jason Bourne by just moving from County Durham to Yorkshire.

I’d spent the six weeks before he moved talking to the local authority, the Jobcentre, social services and telecom company to register a change of address. I’d sent Power of Attorney documents by recorded delivery, had long conversations with officers in various departments and was reassured that the transition would go fairly smoothly. But no. Ohhhhh no.

I started calling it the Nick factor. Even the chain of opticians he’d always used suddenly lost all his details and had no record of any previous service, though his old branch in the north east knew him so well that they’d pull up a seat, get him a drink and replace his glasses three pairs at a time for free because he broke them so often.

Hours on the phone, dozens of dead ends, sending more registered letters and patiently re-scanning documents; meanwhile panicking about money because suddenly he had no income and was ripping though his savings, and panicking about the scale of his drinking, constant chest-pulsing panic because I’d had no idea it was that bad. And at the same time trying to protect Nick from my dismay because only when he came to live here permanently did I understand how much worse his health had become.

And now here we are, and we’ve become acclimatised to the new normal. Nick is living in a lovely flat ten minutes away from us, he feels safe and has settled into a routine that suits him. His various benefits have finally been reinstated (though I say this knowing that PiP may be just around the corner), and with a little care we can manage.

His TV is working and he can watch Netflix to his heart’s content.

We have compromised on the wine so that it’s now a box of lower-alcohol Perry a day rather than the 12% Chardonnay, and, cross fingers, we have just about got his care provision working out at long last.

So we’ve come a long, long way. It’s best not to look back, though.

This time last year, Nick could walk to our house, just round the corner from his old flat, and even to the shop a couple of hundred yards down the road. He could converse by text, make a phone call and pick up the receiver when I rang. He could make himself something to eat and feed the cats. He can’t do any of these things now.

I worried at first that it was laziness, now that he had us running around after him, but I don’t think that’s the real reason, which is simply that he just can’t.

When someone you love has a long-term illness it’s like a living bereavement. You grieve every day for all that has been lost and the pity of it all. You miss that person even while they’re alive. Obviously you don’t sit about wailing like a Victorian widow, you get on with the here and now and enjoy the time you have and find new ways to be together, but it is a fine art.

There are daily stresses and troubles, more than I can count, and every time I think we have come through a particularly bad patch of turbulence and can relax, something else happens. When you care for someone with HD I don't think you ever really relax. But here we are, a year on, and if this tumultuous year has taught me anything, it's that there is no point looking back to the way things used to be, and definitely no point trying to anticipate the future. Better to just try to be here now. It's my birthday week, licence to drink fizz and eat chocolate and the presence is my present.