Following in Dad's footsteps

It’s Carers’ Week and I’ve been thinking about our dad, who looked after our mum as her illness got worse, and never had a tenth of the support I have had with Nick.

I‘m not sure that he would have liked to think of himself as “a carer” but that’s exactly what he was, and one who set a gold standard for the role.

This is a little excerpt from my book about Huntington’s and our family, thinking of all the things Dad did for our mum. Realising how much I’m following in his footsteps – just as many generations of HD families have done before us.

"I look back and wish I could talk to Dad about all this. I wish that with the wisdom and experience I have now, I could take the load off him a little - or a lot. Now that I have become my brother’s carer, I understand so much more about the duties of love.

We would have very different experiences of the caring role: so different. Ma lived at home with Dad and never had carers the way Nick does; all the bathing and dressing and bed-making and bum-wiping was down to him. The shopping and the cooking, the careful preparation of fork-mashable foods and the patient spoon-feeding.

The washing of clothes and body and clipping torn fingernails and the constant bloody bed-making. I do all these things too, but with help. He did all that on his own, day in, day out, while still somehow going to work. There was no slack, no respite.

It seems unbelievable now that Nick and I didn’t force him to get away, go away for the weekend while we held the fort, but none of us knew how to break up the terrible dance he and Ma were locked in to together, like one of those Depression era marathons – dependent on each other and almost dead on their feet but unable to let go. We did try but Ma’s panic at the thought of losing sight of him was so pitiful and he just couldn’t bring himself to do it.

So he was on his own. While I have a partner who can take over some of the legwork on those evenings when I’m just too shattered to move, he rarely had any help. No sympathetic ear to sound off to last thing at night, no hope of a gear change, no-one to give him a hug and tell him it would all be fine. No-one really who could possibly understand, not even his own family. I can’t begin to imagine how lonely that must have been.

Then again, he had worked like a Trojan all his life and had become a senior partner at his practice with a good salary and pension ahead. He and Ma could have a comfortable life and didn’t need to worry about money too much, while I wake up fretting at 5am because Nick’s DLA has not come through and the bills are mounting up.

Dad didn’t have to wring his hands over all the daily peccadilloes of council-outsourced care workers not really invested in the role, or navigate the stormy seas of the benefits system. He didn’t have to spend hours on hold on the phone waiting to talk to someone about PIP, or try to make sense of financial chaos from a time when Ma had lived independently, or try to retrieve her lost password for paperless billing from a broadband company still taking money out of an account she’d forgotten to cancel. He didn’t have to juggle child maintenance payments and mortgage for the life she had had before, now there wasn’t enough money coming in to cover them. He didn’t have to try to co-ordinate two households (badly) like me, and he didn’t have to buy and then hide a week’s worth of wine and dole out an agreed ration each day to an alcoholic. And all that is lonely work too.

The “which tablets for which hour of the day” was perhaps not so complicated for Dad. Nick was already taking medications for other health issues so he positively rattles with all the different things he is taking, while for Mum it was just heavy-duty tranquilisers. The main treatment for Huntington’s Disease at the time seemed to be Valium and Diazepam, so by the late 1980s she was spending a lot of her time in bed.

Medical appointments? I think for Ma these were gentler times where the local GP would have known you for years and would come in with your next consignment of pills on the way home from morning surgery, and sit on the end of your bed for a chat.

She didn’t half thump around but she was a petite, 8 stone woman, she didn’t have anything like Nick’s weight and super-strength, and although she couldn’t walk very well or far, she never needed a wheelchair. They visited me in London only a few months before she died and she somehow managed to stagger up the rickety iron stairway of an East London warehouse to see my artists’ studio.

The solid, high-backed orthopaedic chair we bought her soon became stained and scuffed but lasted for years after her death; I had it re-covered and it made a great nursing and reading chair when my son was tiny. It lived happily in our bedroom for a long time, then, when Nick began to need some more comfortable seating, I took it up to him in the north east. It lasted six weeks.

I wish I could talk with Dad and tell him I understand, and how terribly sorry I am for not doing more to help at the time. We could help a bit, but he wouldn't ever let us step into his shoes; he knew that either Nick or I were likely to inherit the same condition and he wanted to protect us from seeing too far into the future. 

There’s no real comparison between our lives except both of us trying to live with the fall-out of this horrible illness, seeing someone we love gradually lose everything. And knowingly making the sacrifice to try to ease things for that person as much as we can, or could. Whatever it takes.

It used to mystify dad that people would say, “Oh you’re so good to Mary, looking after her like this”, as if there was any question of doing otherwise. What else was he going to do – put her in a care home and visit at weekends? Though admittedly it could have been an option.

I have the same thing with Nick. People tell me I’m wonderful for doing so much for my brother for having such an active role in his care, but honestly I don’t see any alternative. If you’re reading this, you probably know that social care is in crisis and frankly, there are days that I do consider residential care except that there simply isn’t any.

Like dad, I am not always doing it because I want to, and certainly not out of any sense of “duty”. Well, it depends on your definition of duty. Obligation, no - loyalty and commitment, yes.

He’s my brother, my blood, and whether or not he would do the same for me, this is how it is.

It’s not a question of being wonderful or good or brave, it’s just doing what you do for someone you love. Even when it doesn’t feel like love as we know it, when you feel that you could actually strangle the person, that loyalty and commitment carry you through to keep going. So don’t tell me that you wouldn’t do the same, because you just don’t know what you are going to do until it happens to you."

Excerpt, “Days of Wine and No Roses” 

Keeping the Dream Alive

I get in the car and drive into town to pick up a delivery. There’s an old tune playing on the radio that I used to dance to in my glory days, the sun is warming up the day and I can roll down the car windows with the flick of a switch. The roads are clear and I’m feeling well for the first time in a couple of weeks. I slept well and woke early and lazed in bed for a while with coffee and a really good book. I realise how very, very lucky I am.

Yesterday was a bad day and I’m still feeling a wee bit tender around the edges from it, not really wanting to say much or hang out with people (though no choice there as it happens to be a busy weekend and my husband’s birthday, with several outings planned for Nick. But it’s OK. Today is a new day and everyone is safe – that’s my mantra these days.)

Although I was exhausted and despairing yesterday, I’ve woken up with some new ideas about the drawings I want to do and what I’m going to do with them, and one way or another how I will make the time to begin.

They might not be going very fast or far right now but I’ve not lost sight of my dreams, and I’ve got the sketchbook open on my desk to prove it.

It all helps to re-charge my batteries some more to be a better sister to Nick and keep bashing on. And, since I'm conscious of Nick's own dreams too, I want to live mine as best I can for his sake as well as my own - I don't know why but it seems important.

Do you have dreams, dear reader? Whether you’re a carer or not, we all have those heart longings for the thing you wanted to do since you were a child; so few of us actually do them, yet I believe while those dreams persist, there is always hope.

How do you keep your dreams alive? That’s what I want to know from other carers. 

Lament

I don’t often properly moan but today I’m so tired and I’ve just had enough.

On the crisis days when the shit hits the fan and everything goes tits up, there’s an adrenalin rush in trouble shooting. I know I’m good at it – stay calm, do the next thing necessary, keep it all together, keep Nick safe. Do the next thing necessary and then the one after that. 

Yesterday was a day like that. The wheelchair didn't come. We waited for hours and they simply didn't show. Nick's Disability Living Allowance has not arrived in his account this week - I don't know why - and he has gone overdrawn and we couldn't pay any of his bills or do him an online shop. 

I'll have to lend him some money again. He has lost both his hearing aids though I've searched high and low. And there is a leaking pipe in the bathroom and water all over the floor. 

On days like these, no matter how tired I might be already, the need to make things all right for my brother carries me through. 

It’s the next day that I fall apart, suddenly feel my knees turning to jelly as I walk up the hill, physically exhausted beyond all reasonable point, mentally fuzzy and if there were a hundred things backing up on my to do list while I was fire-fighting, unable to remember why they were important or care much anymore.

And that’s bad, because those are usually my things - my dreams, my creative ideas, my longings to plant some flowers or finish the half-painted bookcase, get my hair cut or meet a friend or just go to the bloody Post Office to put a stamp on a letter to Canada. 

I do some of the easy ones but the rest go back into Life’s Great In-Tray to wait for another day, because right now I’m just too broken and battered.

They say people on their deathbeds regret the things they haven’t done and the opportunities they didn’t take. I am not a martyr, actually I'm a selfish cow. But when you look after someone else, the things you wanted to do and the opportunities go by, because caring has taken all your strength. 

Please tell me I’m not the only one who gets like this?  

Being a carer means that you always automatically put the other person’s needs first – or, even if you put those needs aside for a short time, it’s still only temporary because their situation is not going to go away and they still depend on you. Everything is dominated by their needs and it’s an absolute no-brainer because they are vulnerable and impaired, and you are not. You have to be their brain, arms and legs. 

Yes, you do have to think of your own well-being and keep healthy and sane so that you can carry on for the person who depends on you, but again, it’s only ever a quick battery re-charge before going right back into the fray.

I’m lamenting rather than complaining. Well, maybe complaining a bit. But mainly just saying how it is.

If all this is anyone’s fault, it’s mine for trying to do too much, but I can’t see any other way. 

Friends say, please let me help, but most of the really exhausting stuff is administrative; ultimately I am next of kin and phoning the DWP to chase Nick’s DLA payment  is down to me. 

Trying to juggle his finances so he doesn’t go any further overdrawn is down to me. And so is calling the council repairs service about the leaking pipe in the bathroom. They all want an authorised person to speak on Nick's behalf, and myriad security clearances as if I were trying to steal his identity not report a leak. You need name rank and serial number just to get through to an advisor, so those utterly soul-draining and knackering waits on hold on the phone are down to me. 

You wouldn’t think such a little thing could be so tiring but it really is – and I haven’t managed to get through to either of them yet.

Anyway, tomorrow is another day and the to-do list of dreams will still be there, even if it keeps getting fainter. When I feel like this I can see why Nick just chooses to get blotto, but for me it’s going to be another cup of tea.

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!

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.