Mary Poppins Returns

Is it possible to come back from holiday as a carer and not walk into some kind of slapstick disaster scenario, the kind where you innocently open the front door and a huge tidal wave of dirty water bursts through and knocks you over? I wonder, as I sit here wading through a towering pile of paperwork and things still undealt with to chase.    

Actually, apart from the admin shit storm it hasn’t been too bad. While we were away, Nick was so well looked after by Helen and a wonderful dream team of friends, that in some ways I think he barely noticed we’d gone. There were a few blips but nothing major.

My A-Z list of contacts and contingencies stretched over three pages and spanned the main areas that someone could reasonably expect to have to deal with in my absence. I’m not sure that anyone even looked at it, which is probably a good thing. Things ticked along just fine and they didn’t need to.

Of course, that was lucky. I had spent the fortnight before going away making sure that every little thing I could possibly think of was covered, and there was a lot – financial juggling to make sure Nick had enough cash and that bills could be paid while I was away, medications review, hearing aid repair, continence assessment, OT and wheelchair update, repairing the broken loo, getting in touch with police and housing and social worker about ongoing harassment by the upstairs neighbour (he has continued to tape ill-written hate notes onto Nick’s door every day for the last month, but mercifully didn’t actually attack anyone. I’m almost beginning to see the notice writing as his hobby.)

So everything was fine and although I did return to a couple of minor annoyances – nobody had changed the cat litter in two weeks and I arrived to find Nick sitting in a stuffy, stinking room with flies buzzing around his table, because the (paid) carer who was supposed to do it had not turned up – apart from that, nothing untoward, and he was happy and nurtured and safe. 

“When are you going away again?” said Helen jokingly but I actually felt that it would be possible. 

I can’t thank her and the other friends enough for that, and even the usual carers who carried on doing their normal routine perfectly well without me there, even if a few things got left undone without my constant tweaking and nagging.

And it did make me wonder – all the stuff I do, the never-ending to do list and phone calls and trouble shooting – is it all in my imagination and do I make a rod for my own back most of the time?

But then, all the letters about benefits and health appointments and missed payments and PiP assessments and insurance and utilities and you bloody name it, were all waiting for me to deal with on my return and they are certainly not imaginary, I only wish they were. 

And last night I popped in with some food for Nick and found two carers standing outside the flat looking fazed. Between them they had managed to take the key out of the keysafe and drop it down the drain a few feet away. Now they didn’t know what to do.

“Do you have gloves with you?” Carers nearly always carry gloves.

So armed with latex, I climbed over the fence around the little garden area and knelt down amongst the weeds to prise off the drain cover and yep, there was the pink key fob glinting down there in the water. Not too deep – I fished it out and wiped the muck off on the grass. The carers looked astonished. I genuinely don’t know what they would have done, but chances are that Nick would not have got his supper.

Then we went inside and I put Nick’s tablecloth to rights as it was sliding halfway off the table onto the floor, and in the process discovered the hearing aid that had been lost for the last week and that no one had been able to find. And found some new batteries to put in the clock that is so old it doesn’t even tell the time properly but is an important little talisman for Nick to reach out and touch periodically on his table.

I felt a bit like superwoman, putting everything to rights in the blink of an eye, or maybe Mary Poppins magically restoring order in the room, but it was just luck really. And the eagle-eye, 360 degree overview that perhaps only the primary carer ever really has; the person who’s there every day in all weathers, dealing with every aspect of the care from A to Z and back again. No-one is indispensible really, but that eagle view can take a lifetime to acquire, just knowing that person so well, understanding their quirks, anticipating their discomforts and getting a feel for what they need but can’t find the words to tell you. 

On the other hand, I know I must have blind spots just because I know Nick so well that maybe sometimes I don’t notice the obvious. So it’s really good to know that there are other people, like Helen, involved and getting their own feel for his well-being.

But, “It’s very good to have you back, Sis”, said Nick. And it’s good to be back.

This is often a thankless job and a frustrating one, and goodness knows the admin is enough to drive you halfway round the bend, but for the times I can walk into the room and be Mary Poppins for my bro, it’s all worth it.

Holiday Jitters

We’re going on holiday tomorrow. For the whole of the last fortnight I’ve been on a countdown – not the “ooh, just six more sleeps til we hit the beach” type, but “Can I get everything I can possibly think of in place in time so that we can actually leave Nick?”

I’ve written before about holidays because last year I had a long weekend in Italy with old friends, coinciding with a particular crisis beforehand that had me eaten up with worry. 

It was hard to leave in the middle of it all, with things unresolved, worried for Nick's safety and me the only person that any official body was prepared to deal with. Some organisations don’t make it easy for carers (full stop) but they certainly don’t make it easy for you to take a break.

Our local council will talk to me and to no one else on Nick’s behalf; they’ve got my name, rank, serial number and have vetted my original Power of Attorney documents – fair enough, you might say, to protect a vulnerable person, but this is just to talk to the repairs team! 

All I want to do is report a broken window catch or a fault with the boiler, not anything remotely sensitive. Just request a repair before he hurts himself – as when he’d pulled the radiator off the wall by his bed - or gets locked in the bathroom because the door handle had fallen off. 

If that should happen when I’m not there, then woe betide if it’s an emergency, because they will only talk to me.

I’m giving you a silly example perhaps but as I think of all the things that happen in a typical week, and the total 360 degreeness of caring for someone with such a complex condition, well, just typing this is giving me a tummy ache.

While I was in Italy, Simon was home, holding the fort. He made me promise to switch my phone off and just relax and have fun, and in the end I did and oh, I really did and it was glorious. 

This time we’re going away together and Nick will be superbly looked after by Helen, I have no doubt, but however sound and capable she is, she hasn’t encountered the 360 degreeness of making an emergency dental appointment for a broken tooth while dealing with wet trousers and another handle pulled off the door and the morning carers came at WHAT time? and there’s spilt milk all over the kitchen floor and the ESA payment hasn’t come in so how is he going to pay for his shopping, and oh God the neighbour is banging on the ceiling again and swearing through the letterbox. 

That’s pretty much my normal, and while I don’t kid myself that anyone else with a bit of savvy can't cope, they still need to know all the phone numbers – the dentist, the care company, the social worker, the CPSO, the GP, the Uncle Tom Cobbley and all. Where to find the spare aprons and bibs and the batteries and who to call if... or if... or even if....

My list for Helen isn’t just a list, it’s a compendium. All the things to do. Charging the electric toothbrush, cleaning out the wax in the hearing aids, changing the cat litter, constant stock-taking for aprons and loo roll and cat food and washing up liquid and cleaning materials and not even to mention the food ordering for a special diet. Taking the hoover to be mended because one of the carers left it in the middle of the bedroom floor, trailing flex and all, and Nick tripped over it.

Counting out portions of chocolate, cakes and wine so that he doesn’t have them all at once (bitter experience); ordering yet another remote control and checking that the hearing loop is working.

It’s not rocket science. But...

If there were any continuity of care, or the carers were the type to do anything at all outside the box, I could expect them to do some of the above but they just don’t. And these are just small examples of domestic type things, not the big stuff, the financial and administrative tasks that take so much time and anxiety.

The point is, you need to understand that there is always a 360 degreeness with an illness like Huntington’s. Caring for an impaired person involves lots of little things that suddenly become big when they’re unattended.

I worry about the neighbour, who was banging on the ceiling again today and shouting at me in the corridor. He has left an abusive message taped to the door every day for the last ten days. 

I've told the police, who say they'll send someone round to check in. It's not good. But we've covered everything we can.

Helen says, Don't Worry! Just go. Go and relax. I know she can deal with it, and that all the aforementioned on a daily basis would just make anyone into a massive control freak. 

Nick says, Have a lovely time, Sis. And I think he is quite looking forward to a bit of a change and dome different faces. So we're going. 

Expect a chilled out, relaxed, refreshed person to be writing in a couple of weeks with an "oh, what the heck" disposition. 

Well  - here's hoping. 

Seeing with new eyes

I have had a holiday.

A proper, leave your brain at the door along with your English money and your boots and jacket, holiday. Late summer Italian sunshine, still hot enough to need a hat and sunscreen. Bright blue skies and salty sea, warm enough for bathing. Lazing over coffee on the roof terrace overlooking the Adriatic, strolling through quiet streets of old polished stone, lingering in cafes and watching the world go by.

I went away for a whole five days and four nights, and Nick was fine and the sky did not fall in.

Just half an hour before leaving the house, I had been on the phone to the council about Nick’s broken door, trying to get a definite appointment and worried that the request for an urgent repair had somehow gone onto the back burner.

I spoke to a very jobsworthy sounding woman who said that inspectors would need to come and look at the door before any repairs could be done, and they would contact me in the week to arrange this.

I just felt despair as how could I swan off into the wide blue yonder when this was all unresolved and my brother was unsafe at home? I am the only one authorised to speak to the council on Nick’s behalf so what would happen if I wasn’t there?

After a lot of negotiation she finally agreed to let Simon deal with things in my absence and he fielded the whole situation with more grace and ease than I could possibly have managed. Except that even he could not work a miracle, and would you believe that the bloody thing is still not fixed – that’s almost two weeks from my first call for help – and the door is propped open with a Heath Robinson contraption of duck tape on the frame that has to be replaced every morning because Nick kicks and scuffs it as he goes past. Yes I know we could have got one of those child-proof door wedges but I had reported an emergency and been told it would be dealt with the same afternoon. It never occurred to me that we were going to have to wait all this time. It is still an accident waiting to happen, only somehow, miraculously it hasn’t happened yet.

I was still fretting when I arrived at Brindisi airport in the delicious heat of the evening with friends coming to pick me up. Even with Simon taking over, there were still so many things that could go wrong and God knows, I had good reason to worry.

But that is exactly why holidays are good for you. We all need to unwind and breathe some different air sometimes, empty our head of all the what ifs and fears, be another person if just for a short time so that we can go back into our lives and carry on – otherwise the pressure just becomes unsustainable.

With the help of two of my oldest, dearest friends and some Italian sunshine I actually let go of my worries, and I had forgotten what that felt like, just to let go of all that weight of responsibility. 

When you're so responsible for another person, it takes a lot to step away. 

And Nick is fine. I came back to him with a bag of Apulian pasta and some duty free wine and it is lovely to see him with new eyes and hear what he’s been up to. We’ve missed each other. 

I can go back to my life, the appointment fixing and the dealing with the council and the carers and the neighbours and the bank balancing and the shit shovelling and the rationing of wine with a new spring in my step and a cheerful heart. Once again, I think how brilliantly and bravely my brother deals with his illness and appreciate the fact that we're together despite everything.  

I feel rested and relieved, and very very lucky. 

Channelling Madonna

“If we took a holiday…just one day out of life…it would be so nice”

Well, I am channelling Madonna and going on holiday on Monday. Four whole days and nights away, out of the country, in the south of Italy with two of my oldest friends. 

Lucky, lucky me.  Many carers are on the job 24/7 and get no break at all. A terrifying percentage of carers have not had a proper break in years.

Just think about that, if you are lucky enough to be employed at a job that gives you 3 or 4 weeks’ holiday time; caring is a job too, often on top of an actual job and with minimal pay or recognition for your work let alone sick or holiday pay. The relentlessness is beyond exhausting; there is no clocking off and even if you do get a bit of respite time, it doesn’t last long and because you have full responsibility for the well-being of an extremely vulnerable person, shit still happens whether or not you are on holiday so you can never really relax.

I haven’t had time to look forward to my little break or even think about packing, because this last fortnight has been one long rollercoaster of busyness and emergencies with Nick. So, like any carer who is lucky enough to get a bit of time off, getting ready for a holiday means getting a thousand contingencies considered and prepared for so that you can actually leave the building. Sometimes it really feels easier to keep going and carry on as you were. Exhausted but present for when things go wrong, or just thinking ahead to make sure that they don’t.

Leaving Nick is not that simple. There is so much to do and to plan in advance. The carers will give him his tablets and meals and if the place is filthy on my return and the bins full, with fruit flies buzzing around empty wine boxes all over the sticky kitchen surfaces, so be it.

It’s the unknown quantities that bother me. Not fussy hypochondriacal fretting but proper down to earth worries for good reason. The handle fell off Nick’s bathroom door on Thursday while he was inside, and it was a good thing that I'd come along early to take him to the dentist as otherwise he’d have got trapped in there again.

As it was, I had to use a lot of ingenuity and a fork to twist the lock into place and let him out.

I called the council repairs team and they agreed that it was an emergency and to send someone round immediately. I stayed at Nick’s all afternoon until after 6 but no-one came.

My angry phone call yesterday (after almost an hour on hold. God. If someone could take THAT away from carers) got a promise that they would definitely fix the door before 6pm but when I went in today the door was still unmended. The temporary doorstop I’d made out of a bag of cat litter wrapped in bin liners gaffer taped to the lintel had already had it – nothing stays intact around Nick for long – so I have had to make another one and will phone the council again on Monday morning. Will they pick up right away? What do you think? That’s another forty minutes of my life I won’t get back.

Another worry is the fact that the housing officer at the council has issued a crisis log to Nick and one to Vic upstairs to document any new incidents. Although the hearing loop was working well so that there was no sound coming from Nick’s TV or radio, Vic was still on the rampage and we have had several more violent outbursts and more police calls.

Last Monday I bumped into him coming out of the building and thought, oh sugar. But I stopped being scared of him when I realised that his mental health is clearly on the edge; he kept repeating the same garbled rant about a letter from his GP, and when another neighbour intervened to say, “Vic, I live next door to Nick and I can’t hear a sound coming from his any more”, he got angry and told the man to back off. But I felt vindicated and delighted that someone else was backing us up.

It’s always been all too clear that Vic is distressed but lately I’ve been scared of him. Now he just seemed rather pathetic, and in his own way as vulnerable as Nick. Well, not anything like as vulnerable as Nick, for one thing he can walk and move about freely and speak clearly and act for himself. But he’s not right, that’s for sure.

I had pretty much made up my mind that he must be hearing noise from somewhere else altogether to upset him so much, or (more likely) completely hallucinating.

Then on Tuesday I popped round with some clean washing and it all made sense. I could hear the bassline as I reached the entrance to the building, and coming into Nick’s flat it was deafening. He had somehow found an old battery operated radio and got it absolutely blasting out at top volume beside his bed. All the windows were wide open and the curtains were practically vibrating with the sound, but he was fast asleep. After all that!!! I could cheerfully have strangled him.

He does dimly seem to understand why I have taken this radio away too as well as all the others (how did he have so many! The obsessive side of Huntington’s, combined with always being a boy who liked gadgets) but really doesn’t seem to get how important it is that he honours his side of the bargain not to make too much noise. I have been furious with Vic and scared of him too for making such a fuss, but if he’s been hearing the kind of volume I heard on Tuesday then frankly I don’t blame him.

Meanwhile the carers, who are supposed to do the evening call at a time specific 8pm to get Nick into his pyjamas and give him dinner, have been coming earlier and earlier and I have already complained that they’re arriving too early. Today they rang the bell at 5.55pm. I had gone round with the weekend paper and Nick had only just woken up from his afternoon nap. Again, a good thing I was there as I met them at the door and told them to come back later as this was far too early. I said I didn’t care what their rota said, it was contravening the instructions in the support plan (true) and to phone the office if they had a problem with it. I suspect though that they had got a long gap between clients and hoped to get away with coming here early so that they could make up the time.

Nick would have been befuddled and just let them come in and give him dinner a good two and a half hours earlier than his body clock would like, in his PJs like a baby at 6 while it's still light outside, and then left on his own for the evening before he even realises what’s happened. It’s not on.

I sound like a dragon but honestly I need to be, because the point I hope I’m making (and forgive me if I’ve laboured it, you can see that I could do with a break) is that things DON’T happen seamlessly. Even on a good day with no actual life-threatening disasters, there is always stuff like this that should be going according to plan but doesn’t. People paid to do their jobs, their “you had one job” roles, who don’t do them. Who sorts it out? Me. And if I’m not there to fight for Nick, who will be?

And now I am about to leave things to take their course for a few days and everyone says don’t worry, it’ll be fine, just go, and I’m sure it will - but you can see why I’m anxious, can’t you?

With or without you

What a week this has been. Our freezer suddenly stopped working after I’d just done a mahoosive shop and filled it with goodies for the lads. I spent a considerable part of the last few days trying to find someone to take all the fish, chicken, ice cream etc before it melted and had to be thrown away, someone to repair it who could actually come out this month (turns out that the heatwave has had a lot of freezers not being able to cope and throwing in the icy towel) and having huge cook ups of all the defrosting veg and fruit and other delicacies that were already too far gone to save.

This coincided with our son going on holiday, beautifully timed as when he’s home there are normally at least three permanently ravenous teenagers hanging around the house and raiding the fridge at all hours, and where were they when we needed them?

And my brother’s upstairs neighbour just lost the plot. He started coming downstairs and trying to get into the flat, even coming round the back when Nick had the door open, raging in just his pants and bright red in the face. At first I did the usual and tried to appease him but he was too mad and on Tuesday morning he went for me in the doorway, spitting and swearing like some demon in the Bible, and tried to shove me out of the way so he could get to Nick.

Thank God that two big male carers were there and faced him down but for the first time I was really physically afraid. We kept the doors locked and I spent a lot of the week taking Nick out and bringing him round to ours to get him out of the way; ironic that his TV has stopped working and the radio will only go up to a certain volume anyway so he hadn’t even had the music on loud, but we weren’t taking any chances. We were frightened. I was frightened of what he might do.

Meanwhile, the wet room is finished and it’s great, but someone had come in unannounced and painted all the woodwork and doors with white gloss paint, and Nick, who bumps from wall to wall like a fly trapped in a box, had bashed against it and got it all over his clothes. 

And the fancy new super-loo, which I’d been told hadn’t even been ordered yet, arrived out of the blue and the fitters came to install it and of course the drilling and plumbing noises sent Vic crazy and there were bangings on the ceiling and screaming at the front door.

And also…well, a lot of other things happened but oh, in so many ways this was just a normal week. Crisis after crisis, quick thinking to be done just minute after minute with continuing threads to pick up and more unexpected things to deal with every single day. Trouble shooting, because there always seems to be some kind of trouble or disturbance around Nick. Is it him or is it Huntington’s? Do other people have this? I do wonder.

And all week the knowledge that Nick’s holiday is approaching, and now it’s today. We are picking him up in an hour and taking him to the coast where he will spend a week’s short break at one of the wonderful Revitalise centres specifically catering for adults with complex needs. We were very fortunate to get some funding towards this otherwise there’s no way we could have done it - do you have any idea how much these places cost?! 

Though for good reason, I must say, as they have been so thorough in finding out about Nick’s needs in advance, who he is as a person not a service user, covering every detail. What kind of room he’d like, meal preferences, activities and daily habits. 

I went to check it out and felt very reassured, the staff were plainly salt of the earth and loved their job, and there was a sense of inclusion, efficiency and warmth that you just can’t fake. I wouldn’t feel at all happy to leave Nick with his carers at home for more than a couple of days because they don’t feed him properly, they don’t clean up properly, some of them don’t even talk to him but half the time are standing in the kitchen looking at their phones; there are so many things they miss, and for all their bumbling good-heartedness they’re not really focussed on him.

But here I know they’re going to look after him.

He says he is really looking forward to it, and I am so happy at the thought of him being really well looked after, meeting new people, going on trips and having slap up meals and a change of scene. There is only so much we can do for him when it’s just us and I’m constantly struggling with the endlessness of all the day to day problems that keep on surfacing like a demonic game of whack-a-mole, never ever totally dealt with before the next one pops up.

And through so much of this hot summer he’s been sweltering indoors with the windows shut because we’re scared of the neighbour, struggling with all the tech that he relies on so heavily but as a result keeps breaking down, and unable to get out unless someone takes him. Never complaining. I want him to have some carefree time and some fun.

It feels like an adventure, the kind that we used to have when we were little and our parents would wake us up early to sleep again in the car on the early morning drive to the seaside. We’d have fried egg sandwiches made by our gran, wrapped in tinfoil, cold and greasy by the time we stopped for tea brewed by dad on a little gas burner but still delicious, tasting of holidays. It feels good to be going somewhere together again, and I think the anticipation will help mitigate the terrible discomfort he feels while travelling, stuck in the same position for too long. 

And when we’ve dropped him off and waved goodbye? I don’t know what to do with the idea of freedom. It will be like the time we waved the boy off on his first school trip – light-headed, wonderful to be just us again with no parental duties, but also wondering what’s wrong with this picture.

However much I sometimes feel that this caring business and this illness has dropped a bomb on my life, Nick has changed everything and I don’t know if I would change it back. 

This year has been nightmarish. Watching him lose so much, physically and mentally unravelling in front of our eyes, just the way Ma did, has been horrible. It's been a huge strain on us all and we're exhausted. 

So I am looking forward to a few days of freedom, of just unfurling my wings a little. The thought of it already feels like the anticipation of taking off a heavy rucksack. But I am really going to miss him.

First Aid Kit vs To Do List

I am supremely lucky in that I’m not a live-in carer and I have a really supportive, empathic partner who can take up some of the slack. So it’s a bit easier for me than for some to be able to get away from caring responsibilities every so often and just take a break. It’s not just a luxury – it’s my first aid kit.

So I’m just back from a couple of days off, seeing friends and extended family on the south coast. Walking on the beach, dipping my toes in the icy sea, picking up heart shaped pebbles. Hot soup at the beach café wrapped in blankets, sandy toes and windy hair. And talking and laughing and drinking wine late into the night at my friend’s kitchen table and the next morning seeing her beautiful paintings and getting inspired.

A lot of driving – but that is a pleasure in itself, the freedom of the open road, meandering through exquisitely cute Suffolk villages in the pink afternoon light, listening to the radio, singing loudly along to CDs that no-one else but me chooses, unaccountable and free. Knowing Nick back home was happy and cared for and safe.

It also felt wonderful to be home, after a last leg of the journey that went on a couple of hours too long, crawling through miles of roadworks in the dark and then nearly getting squished by a lorry on the M1 pulling out suddenly into the lane behind me. 

But along with the comfort of home and a bath and a cup of tea, there’s the pile of post on my desk – after just two days! – and the To-Do List.

The to-do list stretches across two pages and my heart sinks to see it. All those things that need to be dealt with (and they actually do need to be dealt with: organising a phone line for the new flat which, amazingly, doesn’t have one; ringing the council to find out when Nick can sign the papers and get a moving in date; appointments at the doctor’s and the dentist’s; paying bills, which will involve yet another transfer from Nick’s savings because until the revised ESA and the housing benefit kick in (chasing these up, two more things on the list) he simply doesn’t have the means to cover two lots of rent, a monthly maintenance and a mortgage payment. My heart sinks but at the same time I’m revived and refreshed and empowered and I’m itching to get on with it. And I’ve still got this morning’s sand between my toes. It feels like being caught between two worlds.

It’s the Yin and Yang of caring – you need the outings and the friends and the jollies in order to restore some perspective and recharge your batteries. You need time for yourself to just think about something else. Be someone else. But you still come home to the to-do list, and the fact that there is a dependent person relying on you who can’t get out and do those things themselves.

Thanks to my counsellor, I’m feeling a lot less guilty about that these days; it doesn’t help Nick if I feel bad about enjoying myself away from him. It does help if I’m relaxed and recharged and can come back to him with good humour and a certain serenity. It’s probably the best possible state of mind to tackle the enormity of the situation and the endless to-do list.