Keep Calm and Carry On

So here we are again. Six months on, we’re preparing to move Nick and his worldly goods to a new address.

Here are some of the things we still don’t know:

*Which day of this week the move will happen.

Assuming it will be this week.

I’m writing this on Monday morning and I am supposed to be working every day this week. There didn’t seem any point in cancelling when we didn’t have a date from the moving company (the lovely ones who did the original move from Consett and packed everything up for us. All paid for by the insurance company as part of Nick’s après-flood relocation) They know Nick and made everything so easy for him – and me – so we were thrilled to find that the “return” part of the move had been factored in by the insurers. Just one snag, the boss was on holiday and they couldn’t give us a definite date…

At first we thought it might be last week, then possibly even next. It’s been hard to organise anything when we don’t know. I don’t want Nick to be sitting in an empty room full of boxes until the last possible moment, or paying two lots of bills.

He’s supposed to be out by the end of this week, but the landlord has been kind and said he doesn’t mind a few days’ overlap. He can’t let the flat again until he’s had the wrecked bathroom completely ripped out and refitted, along with all the other things Nick has inadvertently trashed. So we do have some leeway there. But right now, we are just hanging fire. 

Frighteningly though, we also don’t know:

*Who will be Nick’s new care providers since Acme are unable to continue their service in a different postcode.

*Will there be any care providers at all, as the social worker told me on Friday afternoon that she hadn’t been able to find anyone.

When she said this I felt like jamming my fingers in my ears and singing, “La la la I can’t hear you” because I mean, WHAAAT???

Oh and by the way, it’s son & heir’s 18^th birthday at the weekend.

I think this is the kind of situation where the phrase “Keep Calm and Carry On” is the best advice (and by the way, back in the long-ago days when Nick was still driving, we tootled up the coast to Alnwick and he introduced me to the wonderful Barter Books, who first brought out that poster. It was just one of their little quirks, reproduced from old wartime propaganda and fresh off the press. I bought one for my father in law and wish I’d kept one for me too before the whole thing just went global, and increasingly silly.

It is still super-good advice though and probably the only thing to do in the circs.

Ten things I have learned about being a Carer

Earlier this year I became a Carer and it turned my world topsy turvy. 

In some ways I feel a bit cheeky about writing this as some people I know have been doing it 24/7 for years, while for me it’s only been a matter of months.

I was working in social care before that, so in some ways I had some understanding of the terrain. But that was a job and it always came to an end point where my shift was over and I could walk away for the day.

Nothing can really prepare you for the real nitty-gritty of becoming a carer when it’s up close and personal. And unlike a job, you don’t walk away from it at the end of the day. In fact, the end of the day is generally where it all starts to kick off. Your shift is permanent, no clocking off, you’re always on duty. What’s more, when the person you’re looking out for is someone you know and love, all sorts of complicated emotions come into the mix and the pressure to do the right thing for them becomes more intense. It can be a hell of a shock.

So the last six months of becoming primary carer for my brother have taught me an awful lot. These are a few things I have learned:

1. It is too easy to lose your sense of humour

For God’s sake, find something to laugh about.

When my brother first came to live nearby, it seemed that every possible thing that could go wrong did go wrong and I was completely clobbered at the realisation of how vulnerable he was, with me as his only champion. I went into a kind of fire-fighting emergency mode, permanently tense and brittle and expecting nothing but difficulty because there had already been so much. It went on for months.

Then one day, a kind but rather dreamy friend dropped round for a cup of tea and listened to all my troubles. I was simultaneously folding my brother’s laundry, cooking up a batch of pasta for him and waiting for a phone call from the social worker while we talked, and I was approaching a state of hysteria. My friend was sympathetic and it was so lovely to just touch base with someone outside the situation and also, to have a witness to what was going on. As he left, he said lightly, well don’t forget that you can always call me to go for a walk or something if you’re at a loose end.

A loose end! The laugh came out of me like a lion’s roar. I laughed so much that I was bent over double and tears were running down my cheeks. He laughed a bit too as he realised how alien that must seem at the moment and what a daft thing it was to say but it kind of saved me. That and aquarobics (see below)

Having a good laugh takes you out of yourself and then fits you snugly back in. It's good for your stomach muscles and reminds you that somewhere there is sunshine in the world.

2. Do something physical, away from your caring duties.

You might be on your knees with exhaustion after six loads of washing and being up half the night, but you still need to stretch some different muscles and get rid of that pent up adrenalin. Exercise might seem like yet another luxury you don’t have time for any more but if you’re reading this then you’re probably already a superbeing who can fit any number of impossible things into the day before breakfast and you can make time for some exercise, however small. Aerobic, relaxing, whatever, just something that puts you back in touch with your own physical presence and reminds you to breathe differently.

For me it has been swimming. One day while things were particularly bad with Nick and it was all still new and very raw, I started going to the pool and I’ve been going three times a week ever since. I swim very slowly with zero technique, and have occasionally been overtaken by two elderly women swimming side-by-side having a chat. So what? It’s not a competition. It’s my time to unwind, and oh my goodness it does the trick. There’s usually a point after about a dozen leisurely lengths where my shoulders un-knot, I can forget my troubles, and if the water doesn’t manage that then the sauna usually will.

3. Whatever gets you through the night

The day that we packed up my brother’s house to come to Sheffield, I cadged a cigarette from one of the removal men and though it never went beyond one or two a day (I am one of those horrible people who can take it or leave it, and mostly I leave it), over the next few months there were times when the demon nicotine didn’t half do the job. For someone else it might be chocolate, or fizzy drinks or just deciding that something on your list doesn't have to get done today. 

And having said that –

4. It’s crucial to look after yourself

Stay healthy and drink enough water. Take your vitamins. Grab the chance of an early night or offers of help. Also, occasionally make an effort to look nice.

My brother has always been a sharp dressed man and cared much more about clothes than I ever have, so I realised it was doing him a disservice to go out with him looking like a tramp. It made me feel a bit more human too, not just throwing on the same old comfy velvet leggings with a bit of jam stuck on the bum. 

And actually not just human, but visible. One day out of the blue, he said, “You are looking really lovely these days and I like your summer dresses” which is an amazing thing to hear from your little brother at the best of times but extra amazing when so much around Nick seems to pass him by and he often hard seems unaware of what’s going on at all. 

Then there is mental health. Being a carer can be really really tough and for all the nice dresses in the world it's easy to feel overwhelmed, submerged and invisible. Please do not take this lightly. You are doing the most amazing job and you need validation. 
I have been lucky enough to have a local scheme working together with Mind to offer free counselling for carers and it genuinely has made all the difference; I'd go so far as to say it's been a lifesaver. Social networking has been a real lifeline too (see below re Friends) as well as organisations like Carers UK whom I cannot recommend highly enough. They have a decent (if rather dense to navigate) online forum and may be able to provide or links to support in your area. 

So look after yourself because probably no-one else will and it’s too easy to go into fuckup mode. Admittedly, the dental check up and the hair cut keep migrating from week to week of my to-do list, but they will get done in the end.

5. There is enormous value in ritual

Ritual calms the body and mind and brings your attention back into the present moment. The ritual of packing my towel in a particular bag and walking to the pool is all part of its health benefits.
Also, one evening a week I go to an aquaerobics class. It's with a small, friendly core group and we all greet one another cheeerfully but would probably not recognise anyone with their clothes on. 
We do (actually quite taxing) moves in the water to hi-energy dance tracks and rock 'n' roll oldies. It's completely ridiculous. I go round to see my brother beforehand and afterwards I come home feeling stretched and refreshed and nicely tired and ready for bed. 

Meanwhile my brother is a creature of habit. He has TV and radio programmes that he watches / listens to religiously, a cinema date with my husband every fortnight, and he has a nap at the same time every afternoon. It makes things easier to plan around and keeps our worlds ticking along just a wee bit more smoothly. 

6. Remember who else you are 

What would remind you that you are you? For me it's going to the cinema, making and looking at art, meeting friends and doing something that uses a different set of skills. Having different conversations. 

I go to a book group one a month at the local library. I've been volunteering at a local food waste project, run a vintage bric a brac stall at an antiques market and at the moment I've got a Christmas job in a very girly shop full of handbags and pretty nonsense. 

And I've religiously made time - not often enough but it's always been a treat that lasts for a while - to meet up with dear friends in other parts of the country. Having a day out and catching up with them has been so restoring, and oh I do love a road trip, just being unaccountable, me and the open road and even the traffic jam, the freedom of movement and actually being somewhere else. Not to mention the joyful caterwauling along to loud music that no-one else would stand for a minute.

7. Become a Ninja 

Fighting for the rights of your loved one seems to be a huge part of the caring role. Benefits going AWOL, decisions to be made about health and financial matters, services closing their doors inexplicably and endless, endless bloody admin. 

Fighting for recognition of your loved one's status, fighting for acknowledgment of your own. 

There will always be more fighting to do so you've got to stay in shape here and it's nothing to do with physical fitness though everything to do with your psychic health. You must learn to be a care ninja, using martial arts techniques of softness and deflection. If you've ever done Tai Chi, you know that you can knock an opponent right off balance by simply softening up your stance or just moving out of the way. It's a good thing to have in mind when your hackles are rising as X Y Z infuriating injustice has been perpetrated yet again. Don't waste your energy, use it effectively and economically. Try Less Hard*. 

And remember - kindness is a SuperPower. 

8. You will lose some people…

A hard lesson, this. When you are already feeling isolated and adrift, it is the loneliest thing. But not everyone can cope with this side of you, or (more importantly) with the person you care for. 
There were a couple of people who knew Nick and were keen to help, then suddenly melted out of view when they actually met him again and realised how much he had deteriorated since they'd last seen him. 
One of them said, "I didn't realise how bad he was. I'm really shocked." 
The other came out with us both for a drink and then talked to me over Nick for an hour as if he wasn't there. We haven't seen him since and he has made excuses whenever I suggest a meeting or that he might visit. I can't blame anyone. Huntington's is a difficult illness to be around and a lot of people really don't know what to do, however much I try to bring Nick into the arena of "normal" social activity and reassure them that they don't need to do anything, just be there. But when you're a carer or used to being around people who happen to be impaired, this all seems normal and you have to remember that not everybody is used to that. But added to the fact that you don't have time or energy to meet up with friends the way you once did, and you're not sure you can bear to explain to even some of your besties just how tough the tough times are, it can just feel very lonely.
Luckily...

9. …You will find friends in unexpected places
My most squeamish friend was completely weirded out when she encountered me out and about with one of my clients who has Alzheimers. But she has taken Nick out for dinner a few times now, just the two of them, pushing his wheelchair in her designer heels and graciously coping with his tics, his imbalances and his coughing and spluttering when he eats. She even organised it so that it looks as if he is paying the bill (they go halves and she sorts it out later). She has made him feel interesting, accepted, like a normal bloke out on a date with a good looking woman. What a star. 
And I have met the most amazing people online - other people in the same boat, people affected by HD, people like me who never imagined this would happen to them, other carers who I might never meet in person but have been such a source of support. 

10. You are not alone

Unfortunately, a lot of the time you are. But see above. I'm writing this on Carers' Rights Day which is a national celebration and call for recognition of the sterling work done by carers everywhere. It is a double edged sword - you need to remember who you are when you're not being a carer but as carers we also need to show ourselves, stand up and be counted. The more of us the more visible we become. There really is strength in numbers and the more we identify ourselves, the less alone we become.
Who's with me???

* My friend Alison coined this phrase as a mantra for life and has written an e-book  https://www.smashwords.com/books/view/761127 explaining how. I have found her sane, balanced approach a really useful antidote to the daily pressures and the endless to-do list!

More like a baked potato.

Friday: a Curate’s Egg of a day. Wait, though. Does anyone even know what that is anymore?

Maybe more like a jacket potato baked in a bonfire then - tasty in parts and inedibly raw or burnt in others. 

It’s not all bad, anyway, there are definitely good bits of news – the biggest being that we have signed the papers confirming that Nick is now the official tenant of a lovely ground floor council flat, and been given no less than three sets of keys! Hurrah.

So it’s all systems go, with lots to do. We had been ringing the council for days trying to get a date for the sign up meeting; at last this came through on a day I was working so Simon took Nick.
He came back with the keys and a big sheaf of papers, saying that the housing officer urgently needed to speak to me. Apparently there were some important things he needed to go through with me asap so that Nick’s Housing Benefit can be processed correctly, and it couldn’t wait as he might become liable for…. Simon couldn’t remember but something rather nasty.

We’re now dealing with the chap who actually signed Nick up, not the woman who had been so helpful in bidding for the property in the first place. 

Suffice to say that I have been trying to contact him as requested and he is not in the office. Eventually I track him down and he sounds busy. He doesn’t have access to the papers right now but can we talk this afternoon? He will ring me at precisely 3.30 and explain the situation. Around 3.45 I begin to suspect that he is not going to phone back today and sure enough, the call never comes and sure enough, when I finally call the council again he has left the office.

Meanwhile, I talk to the utilities company who couldn’t be nicer and more helpful. They will connect everything up in time for Nick to move in, don’t worry. 

When will Nick be moving? Well, that’s the next thing. We realised that the insurance company who’d paid for the relocation expenses had included a return journey for removals to Co Durham after the repairs were done on that house.

In fact they’re still ongoing, and Nick is moving to a different address in Sheffield instead but looking at their small print apparently that’s fine and they can accommodate that. I'd been about to start looking through local “man and van” ads but it looks as if we can get the wonderful professional movers who will pack it all up in a jiffy. Moving out of the Consett house was almost painless as they were so good, efficient and funny and almost acrobatic in their skills. And kind to Nick.

In the office though, they won’t talk to me about the arrangements as I’m not the account holder. I get Nick on the line and he fails all the security questions. Now they won’t talk to either of us! Oh, for goodness’ sake! I resolve to call back later and try to speak to someone less jobsworthy.  And send a screenshot of the original paperwork for good measure.

Meanwhile, the social worker (I’d forgotten all about her) has emailed to say that Acme will not be able to provide Nick’s care package at the new address as it’s in a different postcode. But it’s only across the road! I don’t understand.

It’s how the local authority divide their boundaries, she says. End of. So I can’t argue with that.

What a shame, though. We had grown really fond of Acme and they were good to Nick. 

People with HD don’t deal well with change. As the brain's executive functions erode it is harder to manage new events and they need the soothing security of a known routine. 
Now as well as the upheaval of the move itself, he will have to get used to new carers too who don’t know him and may not understand his condition. They’ve all been Ok so far, so we just have to hope for the best. 

But Nick is anxious. It’s the change in circumstance; the upheaval of his quiet, cosy life in the home he has got used to, despite all its issues. He says he is not worried about the move but over the last few days his drinking has increased scarily – a new box of wine almost empty by early evening, several days running.

“What’s going on?” I ask. “Is something bothering you?”

He says not and that he doesn’t know how it’s happened, that he hasn’t been doing anything different. But plainly something is up, and I fear for his safety when I’m not around to try to put a boundary on how much he drinks. He’s got some strange bruises on his temple where I suspect he’s banged his head, but he says he can’t remember falling over. Well, after a box and a half of wine in a single afternoon, you probably wouldn’t, would you?

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.

What a Relief.

I think the OT was more excited than we were when she saw the prospective new flat. “Grab it” were pretty much her words, as she said it was extremely rare to find a one-bedroom property with so much space – wide corridors and doorways, good access throughout, lots of room for movement and manoeuvre.

Not to mention the fact that ground floor flats are like gold dust anyway, and she agreed that the fact that it’s so close to us is an utter godsend.

What about the bathroom? Oh, no problem, she said, it might not happen overnight of course but again it’s spacious and can be easily adapted for a walk-in shower.

Her one caveat was the small exterior step into the building, which she had to make sure we knew about. It’s a possible trip hazard and it will be hard for a wheelchair user to move out through the door unaided. But he won’t be, I explain. 

Apart from an impromptu excursion to Tesco in a taxi to buy wine the other week (when I was a bit late replying to his text and he panicked that he was going to run out) Nick rarely leaves the house on his own any more. He certainly can’t operate his own wheelchair, which by the way is like a First World War tank with bits beginning to fall off it.

We will need to look at installing a portable ramp for future journeys in and out. 

I’m not too worried about that. Someone I know has exactly that so their wheelchair can be pushed easily through the doorway and I’ve seen how simple it is to use, so we can do that.

But it’s a definite thumbs up. She will get back to the lettings department and they’ll be in touch to make Nick a (second) formal offer and then it’s all systems go. We can get the keys as soon as he’s signed the papers. He’s got a new address lined up and can be in there by Christmas. I am almost beside myself with relief.

Cupid

“…Draw back your bow, and let your arrow go

Straight to my lover’s heart for me…”

Ah, good old Sam Cooke. There’s not much in my world today that can’t be soothed by a wee bit of Sam Cooke.

I’ve been singing this to myself while having my morning swim because as the council phrase it, a match has been made, and when we saw the flat yesterday it felt like love at first sight.

It’s fantastic. Bigger and roomier than I had expected, calm and airy with wide passages and doorways and even opens out onto a garden. And the “furnished” element simply means that there are carpets and kitchen fixtures already in place and the council operate a paid points system for providing other features – anything from a bed and new mattress to a microwave or an ironing board. So Nick can bring all his existing furniture and order anything extra via the housing offices.

We haven't got a definite answer about the cats but from what I can gather, the "no pets" rule tends to be a little flexible and mainly means no dogs.  

It’s all looking so good but inevitable there is a catch. There is a small step up from the outside path into the communal hallway, and the bathroom is not adapted. It’s just a normal bath with a shower unit like the one he has at the moment and can’t use. Hmmm.

We don’t quite understand how the flat has been allocated for Nick on that basis, as a walk-in shower was one of the main requirements in our search.

Has the OT who rejected the previous property seen this one and passed it because she’s confident it can be adapted as soon as possible? We don’t know, she’s not been answering her phone and eventually when I get home and call the housing officer, it turns out that she’s on leave. So the whole thing might have got to this stage without her knowledge, and it’s possible that she could take one look and just say, No. The match is off.

What happens if we like it and want to go for it anyway? I ask the housing officer.

And besides, what else are we going to find at this stage, it’s November now and Nick has to be out of the current place by the end of the month.

She agrees. Tells us once more to hold our nerve. It’s a requirement that the OT checks it anyway, if she recommends against it we can still go for it regardless but will just have to accept, for instance, that there isn’t an entrance ramp installed and not likely to be one. 

And the bathroom? Will that be a deal breaker or could it be adapted if we choose to go for it? We’ll have to see what the OT advises, says the housing officer. It all depends on the drains. 

Well, that’s certainly romantic. 

Cupid? Draw back your bow. We need some rose tinted love rays to do their magic and make the whole thing work out.