Another Swell Party that was.

Nick’s birthday seemed to come around again very quickly after Christmas.

I was still recovering from a second bout of the horrible flu and still not quite right – weak, exhausted, fuzzy headed and feeling utterly thrown by the smallest thing. Hadn’t spent much time with Nick, not wanting to pass on the lurg.

I’d got his presents already – chocolates, a new clock and some Velcro fastening slippers - but the thought of having to organise a celebration just felt absolutely one step beyond.

The trouble was, Nick had been talking about this year’s birthday since around June last year. I’d been pushing him in his Red Cross wheelchair on one of the first days of the glorious heat-wave, celebrating a perfect summer morning, and he’d started talking about January and the birthday party he wanted to have. Nothing like thinking ahead, I quipped. But for a few weeks, while most people were thinking about ice lollies and sunscreen, Nick was inviting anyone he met to his party – six months in advance.

Well, in the end, most of the people from out of town couldn’t make it so early in the new year and so soon after Christmas. But somehow, despite me not having my eye on the ball and then Simon going down with the flu himself, and despite him not using the phone anymore or ever going out unaccompanied, Nick’s invitations had hit the bulls’ eye and LOTS of people turned up.

Another lesson that sometimes I don’t have to it absolutely all. Admittedly, there wouldn’t have been any food without me, and Simon had heroically staggered to the supermarket and bought a load of drinks. And I had been fielding texts all week about the logistics. But a lot of the actual inviting was down to Nick.

And it was such a lovely evening. Another swell party that was. We couldn’t have wished for more.

One friend had made a fabulous chocolate birthday cake with sparklers on top, another had made a quiche at Nick’s request, everybody brought him presents and cards and he spent the evening surrounded by well-wishers and friends – and surprise guests of honour his ex-wife and children, coming all the way from the north east on a school night. Ok, well that was my doing.

But it all reminded me to keep giving Nick more credit for acting independently, and to give us both more breathing space.

It is so easy to flip into permanent emergency mode when there is constantly so much to be done, and Nick can do so little of it himself, or half the time even understands the need. I know realistically that none of those people would have been there the other night without all the back up that Simon and I give, all the time.

But the flu, not being available or hands on, having to ask for more help, has altered my thinking. 

First of all, Nick still does have an independent life to a higher degree than I might see, even if it is mostly internalised. 

Secondly, I really cannot do it all and the only person who expects me to is me. 

I’m still trying to figure out how other people can help, because many friends have said they’re willing, it’s just that I can’t quite summon up the brain power to put it all together. 

Maybe send out a weekly or fortnightly list of tasks and social spaces, time-tabled to fit in with existing appointments and the carers coming in? It’s worth a try. 

Has anyone else tried this? If you’re a carer yourself, what do you do to get more support when you need it? Please get in touch. I'd really love to know how other people manage. It's not going to get easier. We need to put our heads together and find more breathing space.

A Lesson.

So that was Christmas, as John Lennon sang, and what have I done?

Slept, mostly. Boy, have I slept, like a cat, like a baby, more than I can ever remember sleeping. Sleeping in the afternoon. Turning in early. Waking up at the normal time and then going back to sleep for another two, three hours.

I’ve been ill, though. Proper, knock-you-down-where-you-stand, incapacitating flu, where you just have no choice but to go to bed and stay there.

Thank goodness for everything stopping for Christmas Day and then that sleepy downtime between Christmas and New Year when we hadn’t got much booked in anyway.

It’s been a week now and the aches and whirly bedrooms are abating but I can still feel the virus running through my system, the cough is still hacking out of my lungs and I’m weedy and can’t martial my thoughts two miles ahead the way I usually would.

Simon took care of everything – cooked, entertained, chauffeured, ministered to bro - all the things I would normally do – and the children have been to visit, and he’s had a really cracking Christmas.

His fridge is full of cheese and home-made trifle and he’s been given enough chocolate to last him, ooh at least til the end of the week. I am so grateful.

And relaxed. Sleep is such a healer.

But during my long, fevered Christmas night, so delirious I was hanging upside down out of bed trying to cool my forehead on the tiled fireplace, awful thoughts were pounding through my head and one thing was clear : I can’t keep it together indefinitely the way I have been. Something had to give.

Simon has been beyond spectacular and what I’d do without him I just don’t know, but he still only takes care of the basics. I’m the one who keeps it all ticking over.  And what if it had just been me and bro? This was one time when I couldn’t just stagger through, feeling a bit rough but coping anyway. I couldn’t even sit up.

So yes, I feel that this illness and enforced rest has taught me a lesson: understanding my limits. 

I’ve talked in the past about needing to ask for help more, and here and there people have offered, and some really do help already, with lifts and little socials and just invaluably staying part of the picture.

But I think I've inadvertently deflected other overtures because it is always hard to explain what kind of help we need exactly when the needs can be so amorphous and yet so complex. And you’ve kind of got to know Nick to know what to do. So a lot of the time it is just easier to get on with it all myself. 

But I don’t think I can do that anymore – even with Simon's fantastic back-up, there is too much, it’s too big for us both to deal with on a sustained basis.

When Nick had his service assessment recently, the lovely case manager from the Neuro team put it very well. She said, although Nick appears to be living independently, making his own decisions, we all know that he isn’t really able to do anything without constant intervention on all levels.

So I’ve been thinking. We need more back up, and I need to ask for very specific help and more of it. 

I'm still trying to figure out what could be most useful, but I think it would be social. I'm thinking of a pool of people I might be able to call on, to go in and visit him for a glass of wine (there's no point me saying "for a cup of tea", now, is there?) and a chat, or to discuss what's in the paper with him, or read him a chapter of a book, or take him a rice pudding, or even just pop in to check that everything is running smoothly, just so that I'm not always the absolute first point of contact all the time for everything. 

I don't know quite who they'll be, these good soldiers, but if you're reading this and get a call from me, don't be alarmed - after all, you can always say no. But I need to start opening up the conversation, and it seems as good a resolution for 2019 as any. 

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.