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”
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.
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.
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!