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.

Let Love Rule

It's Carers' Rights Day today and I'm looking back over the past year and what I've learned.
Last year was characterised by panic and emergency. This year we've had our share of emergencies and I've often been overwhelmed, exhausted and frightened, but the hyperventilating midnight panics have worn off and I'm learning to surf the crazy waves like a zen surfer. Patrick Swayze in Point Break, that's me. On a good day, at least.

I've been thinking again about love.
As my panic and desperation to make everything all right recede, there is more room for the simplicity of love.
The love is always there, but lately I'm feeling less resentment, less guilt, and more compassion for Nick, and for myself.
Finding it easier to be present - just hanging out in the room together, spending time. As I get older the concept of "spending" time is interesting and I want to spend it wisely, luxuriously and not let it run through my fingers. Spending time with someone who has a progressive illness makes this particularly apt.

It is really really important to have time out for yourself too, to come back to yourself and re charge your batteries. Loving can't half take it out of you.
Exercise. Humour. Sleep. Friends. Pets. Music. Films, a fabulous book you can escape into, any kind of parallel universe that takes you somewhere else for a while - all these things give you perspective. And nature. Nature is the thing that saves me. And art.

As carers we're all surfing those crazy waves all the time while making it look easy; it's amazing to think how strong and skilled we must be.
What keeps you going when you're looking after someone? And how are you going to celebrate yourself on Carers' Rights Day 2018?

https://www.carersuk.org/
https://carers.org/

Voice of the Donkey

Not had time or head space to write for a while – things keep happening and being able to sit down to record my thoughts at any kind of leisure has been too much of a luxury.

But that’s why I started writing a blog in the first place, because things keep happening and I needed to keep track. So here we are, midnight, way past my bedtime on a day when I could happily have gone back to bed first thing this morning and slept for a week.

Earlier this week I was interviewed for Radio 4’s Money Box Live programme about the financial impact of being a carer. 

They asked what I did for Nick and I trotted out a list off the top of my head, thinking to myself that it sounded like nothing and feeling the usual guilt that I should be doing more and am not there for him 24/7.

People often ask if he lives with us and I still feel bad that he doesn’t – even though our house is just not big enough for the both of us, and when he did stay with us on first arriving in Sheffield last year, he fell down our stairs and broke his collarbone within two days. 

So no, he doesn’t live with us, but we see him every day and I probably spend at least three or four hours a day dealing with his paperwork, money, shopping, appointments, blah blah blah. But some people spend their entire life doing that for the person they care for; I know an eighty year old who has perhaps two hours off each day if she's lucky, and many live-in carers report a 90 hour week. 

What I do for Nick in comparison feels like nothing much - and it feels like an endless mountain. 

It's hard to explain how the time just sucks into a vortex when you're looking after someone else like this. 

And I simply could not have expected the level of responsibility and care I would be taking on. 

No-one does, I’m sure. It soon starts to feel normal though, so you take on more, until suddenly you are like one of those poor Greek donkeys staggering under an impossible weight. I used to cry when I saw them and try to get their owners to relieve the load. Of course they would just laugh and pile on another brick. “The donkey doesn’t feel it!” 
Now that donkey is me.

On the radio interview there was only time to include a small part of my duties, just the tip of the iceberg really, and of course so much of what you’ll do as a carer is often unquantifiable. But viewed from the outside, I saw that other people really did think it was a lot. 

Well, it's all relative (literally so)

But it has made me think. It has made me more proud of myself, and more determined to do a good job for Nick. 

But it has made me more angry, and more determined to speak out about carers' rights, keep lobbying for more recognition (and god knows, more financial support) and keep connecting with other people whether they are carers themselves or not. It can be a lonely old business and we need to talk to each other. I might feel like it a lot of the time but I refuse to be an Eeyore. Us donkeys need to stick together - go on with our work but make sure we raise our collective voice, echoing across the hillsides. Let me hear you, brothers and sisters!

The Donkey - GK Chesterton