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.

Retrograde something

If your life is in any way affected by HD you won’t be surprised to hear that the dramas continued yesterday, and coming from an entirely unexpected source. Apparently it’s planetary.

I have a long working day on a Monday so I’m out all day and pretty much helpless if anything goes wrong. Late morning I got a text from Nick.

“They have just taken my wheelchair away Sis”

Eh??? I texted him back.

“Nick. What do you mean? Who is “they”??”

No answer.

Eventually another series of painfully spelled out texts tells me that “they” had rung the buzzer and he had let them in, despite specific instructions not to after Sunday’s incident with Vic.

Whoever it was had simply told him they had come to collect the wheelchair, and Nick let them take it away. He doesn’t question anything and it wouldn’t occur to him to put up any resistance. Like taking candy from a baby. It makes me wince.

I put on my Sherlock deerstalker and got on the phone to the most likely suspects: the hospital mobility service who had issued the electric wheelchair in the first place, the local distributor who provide and service the equipment, and the Red Cross.

They all had Nick on file but all confirmed that they had not made any collections from that address, there was no reason why they would try to get it back, and that anyway they would never do that without prior consent or arrangement. Everyone was very helpful but adamant that it was nothing to do with them.

Finally at home that evening, I discovered that the mystery collector had taken the chair but left behind the cushion and half of the power pack, so it would be a fat lot of good to anyone.

Did the person have a uniform? Or any I. D.? asked my son later. Nick wasn’t sure. He didn’t think so. Oh dear. 

The only possible conclusion was that he had been scammed.  He is so vulnerable. You never know who is watching, and we have already established that there are some nutters in the building. Horrible, unsettling thought.

Cut to today, and I suddenly had a wild but inspired guess. I called the big Red Cross warehouse in the back end of Rotherham. Just in case. What do you know, it turned out that they had it. Combination of a clerical error suggesting that the loan we’d had months ago and returned in August, was still outstanding, and an over-enthusiastic but dim volunteer who had taken it upon themselves to round it up. I was too grateful to make a fuss.

One of their lovely, kind regular drivers phoned me to say that he was dropping it off and had left it outside Nick’s front door and all was well.

So that was Monday’s drama. Meanwhile, the key safe is still on its last legs but a replacement will be fixed next week (naturally it turns out to be a discontinued model but some kind soul at the fitters has searched in their cellar and found a spare), the bedroom radiator is still hanging off the wall and the repairers have not got back to us yet, and Nick has found the hearing aid he lost on Sunday but lost the other one and it has not turned up yet. Which means that he hardly hear a thing and has been turning the TV up, and although he has finally understood to keep the volume low, I fear that it will just inflame Vic to the point of no return. He was at it again last night, threatening the carers and my husband and banging on the ceiling, and the housing officer has not even acknowledged my messages let alone respond. The police have been in touch but explained that they’ve had a really difficult weekend with bonfire and firework activity so we won’t see them til later this evening. All we can do right now is keep calm and carry on, as usual. Well, after a fashion.

Asking for Help.

Why do I find it so hard?

The other week, when our freezer broke down and we suddenly had half a supermarket full of rapidly melting food, I went straight into sort-it-out mode, mentally calculating who we knew with a big freezer, who might be prepared to give us some shelf space, who lived locally enough to transport it all and who wasn’t on holiday or having their own nervous breakdown.

Underneath that, calculating who, when the oven chips are really down, I could turn to for unconditional support. It was frightening, because I couldn’t think of many.

Being a carer for the past year and a bit has made me insular. My focus has been so much on Nick, and outside that I’m often too tired or too preoccupied to socialise much and try as I might my world has shrunk to a tiny core of family and friends, many of whom I hardly get to see either.

If we need help, the first point of call is usually some kind of organisation - even though these are often hard to access, lengthy in process, unavailable, unhelpful, or altogether useless. 

But the thing that has shaken me and left a lasting scar, is the loss of trust. We had so many people offering to help before Nick came to live here, many of them his old friends; where are they now? I have written about this before but the hurt is deep. People who saw Nick once and then backed off. At least one friend was honest when he said he was scared, but the rest just voted with their feet – and their silence. A lot of people don’t know how to deal with Nick – this adult, twitching and dribbling in an adapted chair with an alarm pendant round his neck. They can’t understand what he’s saying, and on a bad day he won’t seem to know you’re there or be able to talk much at all. We have friends who are brilliant with him in company but I know would feel uncomfortable being on their own with him because they don’t know what to do. It’s all very well for me to say, “Oh, you don’t have to do anything, just be there”, but I am used to it and even then it never really stops being shocking, and difficult.

So I have learned to be untrusting, to believe that there is very little support and that in the end it is all down to me.

It’s impossible to do it all alone though. Having a break while Nick was on his holiday gave me the room to see things a bit more clearly.

He had a marvellous time, by the way, completely delighted with it all, and I think the time away really did him good.

But we came back from our lovely holidays to find the merde really hitting the fan at high speed. Now Nick has not just one nutty neighbour, but two. I’ve said something about this on Twitter already and am not going to go into any more details right now, but things are weird. I am feeling a bit out of my depth, and this morning I rang a couple of friends just to talk to someone and ask for their advice.

They couldn’t help with the situation except to listen, but both offered practical support – a bit of shopping, calling in to see Nick at a time when I won’t be around, taking him to the optician - that will actually be a godsend.

I’ve been quite amazed by their responses, and it has taught me this: that the voice running round in my head telling me that no-one cares, no-one will help, I can’t bother them, everyone’s too busy, etc etc, may have a point, but it’s not the only truth.

I have to keep asking for help and support – it’s not easy when someone says no, or doesn’t answer your call, but you can only try and it’s worth a try.

Oh, and the broken freezer – I clenched my guts and did a little round robin on Whatsapp, and four people immediately offered space in theirs, including someone who was on holiday but said they’d arrange it with their neighbour. None of these people are close friends, but having the courage to ask does seem to inspire a connection and has made us that little bit closer. My sense of trust is still wounded and a bit wobbly, but our fish fingers and veggie burgers are intact, and I remind myself to keep opening up and not trying to do every little thing on my own.