Dealing with Overwhelm

I’m interested to know how other carers deal with overwhelm. The sense that it’s all too big for anyone to handle, let alone you. That it’s all coming at you like a meteor storm and you’re so tired you just want to lie down in the midst of it, sucking your thumb.

Seeing other people get on with their lives while yours is stopped in its tracks, taken over by the needs of a needy person.

Hi-jacked by your love for someone who isn’t ever going to get better. Trying so hard to make it right for them, but getting into fights along the way like a mediaeval knight trying to protect his princess from dragons.

There is so much coming at me at the moment that it’s almost laughable. Where do I start?

Nick’s neighbour is still on the rampage and as well as the smashed door incident there have been three occasions in the last month that I’ve had to call the police. The crazy thing is, there is no noise coming from Nick’s TV or radio anymore as the hearing loop is working and we took his bedside CD player away weeks ago. What exactly is he hearing to upset him so much? Now there is talk of re-housing and an Anti Social Behaviour Order – at the moment just talk though. While the police have been brilliant, the council are dragging their feet.

And Nick’s bathroom door handle is coming off again. Last time this happened, I phoned the council repair team who told me they didn’t class it as a risk, resulting in Nick getting stuck in the bathroom and having to be rescued by emergency services. Need to call them in again, when I can summon up the strength to wait on the phone for forty minutes. 

The carers have taken on Nick’s nutritional needs but the ABC of no-brainer risk assessment seems beyond them. Yesterday I arrived ten minutes after they had left, to find water all over the kitchen floor. It looked as if someone had put the washing machine on the wrong cycle again. Did they not notice, or have any concerns about Nick coming in to get his wine (which he does at very regular intervals) and slipping?

In the bathroom, meanwhile, the bottle of bleach was sitting beside the loo with its top off. Words absolutely fail me. These are adults, supposedly trained in health and safety and the care of vulnerable persons. Paid to do this job. Not very well paid, but paid more than I am to be on their case like this day in, day out.

Our landline is not working. I don’t know why.

And a relative I’ve never met from New Zealand is coming to stay with us for three days. I’m picking him up in an hour. I want to meet him – his dad, my cousin, was a very good friend of mine back in the day and we have a shared gene pool, thankfully on my dad’s side so HD free. But I have no idea how to even begin to entertain him, let alone explain how things are for us. Though I suppose if he is here for even a few hours he might understand the crack, and also why our house is so unkempt and grimy.

And there’s more, so much more, going on, but enough already.

The only reason I have time to write this is that I’m waiting at Nick’s for a delivery.

Anyway – worse things happen at sea, I tell myself. I have recently gone back to an old love and started doing an I Ching reading every day. It always calms me down and every time the message is absolutely spot on. Today it more or less told me to stop mithering and get on with it, basically “keep calm and carry on” in Chinese script. Someone somewhere probably has that as a tattoo. 

It also told me that I can’t do any more than I can actually do, and to step back a bit and let other people do some of the work.

Once again, this is the hardest one for me, and if you too are caring for someone, I bet it is for you. As I’ve said before, I would love to delegate more to other people but so much of the stuff I have to deal with for Nick is up to me as the legal deputy and next of kin.

However, I’m just gently flagging up the possibility that the world won’t end if I leave our visitor to his own devices for a couple of hours tomorrow and go for a swim, or ask a friend with a car if she could take Nick to the dentist.

Perhaps this is the only way to deal with overwhelm – just go really carefully, one small step at a time, and keep on walking bravely through the storm.

Lament

I don’t often properly moan but today I’m so tired and I’ve just had enough.

On the crisis days when the shit hits the fan and everything goes tits up, there’s an adrenalin rush in trouble shooting. I know I’m good at it – stay calm, do the next thing necessary, keep it all together, keep Nick safe. Do the next thing necessary and then the one after that. 

Yesterday was a day like that. The wheelchair didn't come. We waited for hours and they simply didn't show. Nick's Disability Living Allowance has not arrived in his account this week - I don't know why - and he has gone overdrawn and we couldn't pay any of his bills or do him an online shop. 

I'll have to lend him some money again. He has lost both his hearing aids though I've searched high and low. And there is a leaking pipe in the bathroom and water all over the floor. 

On days like these, no matter how tired I might be already, the need to make things all right for my brother carries me through. 

It’s the next day that I fall apart, suddenly feel my knees turning to jelly as I walk up the hill, physically exhausted beyond all reasonable point, mentally fuzzy and if there were a hundred things backing up on my to do list while I was fire-fighting, unable to remember why they were important or care much anymore.

And that’s bad, because those are usually my things - my dreams, my creative ideas, my longings to plant some flowers or finish the half-painted bookcase, get my hair cut or meet a friend or just go to the bloody Post Office to put a stamp on a letter to Canada. 

I do some of the easy ones but the rest go back into Life’s Great In-Tray to wait for another day, because right now I’m just too broken and battered.

They say people on their deathbeds regret the things they haven’t done and the opportunities they didn’t take. I am not a martyr, actually I'm a selfish cow. But when you look after someone else, the things you wanted to do and the opportunities go by, because caring has taken all your strength. 

Please tell me I’m not the only one who gets like this?  

Being a carer means that you always automatically put the other person’s needs first – or, even if you put those needs aside for a short time, it’s still only temporary because their situation is not going to go away and they still depend on you. Everything is dominated by their needs and it’s an absolute no-brainer because they are vulnerable and impaired, and you are not. You have to be their brain, arms and legs. 

Yes, you do have to think of your own well-being and keep healthy and sane so that you can carry on for the person who depends on you, but again, it’s only ever a quick battery re-charge before going right back into the fray.

I’m lamenting rather than complaining. Well, maybe complaining a bit. But mainly just saying how it is.

If all this is anyone’s fault, it’s mine for trying to do too much, but I can’t see any other way. 

Friends say, please let me help, but most of the really exhausting stuff is administrative; ultimately I am next of kin and phoning the DWP to chase Nick’s DLA payment  is down to me. 

Trying to juggle his finances so he doesn’t go any further overdrawn is down to me. And so is calling the council repairs service about the leaking pipe in the bathroom. They all want an authorised person to speak on Nick's behalf, and myriad security clearances as if I were trying to steal his identity not report a leak. You need name rank and serial number just to get through to an advisor, so those utterly soul-draining and knackering waits on hold on the phone are down to me. 

You wouldn’t think such a little thing could be so tiring but it really is – and I haven’t managed to get through to either of them yet.

Anyway, tomorrow is another day and the to-do list of dreams will still be there, even if it keeps getting fainter. When I feel like this I can see why Nick just chooses to get blotto, but for me it’s going to be another cup of tea.

Letting Go

I have no illusion about being in control. You know those annoying gerunds that you see on the side of vans – Veolia, local authorities and the like: “Working in Partnership” “Bringing service with a smile” and all that guff.

Sometimes I think my strapline could be  “Running two households, badly.”

Being a carer depends on quite a degree of control, though. It’s the opposite of care-less. So much of the time the other person’s needs come first so you’ve got to have the self-control to deal with that. If they are complex needs then you have to be super in control, a puppet master juggling many different strings just to keep the show going, never mind any fancy tricks.

When you’re looking after someone’s life – their health and dental appointments, their care provision, their finances, their shopping, their domestic maintenance and their social requirements, their dirty fingernails and their hearing aid batteries - all those myriad tiny but necessary things - then you need at least the illusion of control. You have to try to keep a tight grip so that things get done.

You’re not just a puppeteer, you're a circus acrobat on a tightrope, defying gravity to stand on one leg and spin plates from a pole balanced on your nose, and what could possibly go wrong? 

It looks so precarious, but without missing a beat you catch another plate and keep on spinning.

Such skills! The audience applaud (although most of them are looking the other way because there is no spotlight on this tightrope and there are many entertaining things happening at their eye level.) 

The ones who do see it say "I don't know how she does it," and then go off for an ice cream.

There is little glamour in this circus act, and it can feel like a full time job, indeed can actually be one – just not a paid role in the traditional sense.

However skilled you are, that level of co-ordination has a limited life span. You can’t let yourself slip up, and if you do, it just means extra work to repair the damage. You’re bound to wobble, drop a plate or two, you’re only human; but dropped plates cost time and energy to replace. 

With every fall from grace this makes me more determined to keep better control, and with each new grit of the teeth I get more and more tense.

When I get tense I get cross and narky and can’t see any source of daylight and no end to the troubles ahead. It’s really rubbish for everyone, especially for my poor long suffering family and not much fun for Nick.

My counsellor tells me that control can only go so far, is only ever temporary and I must learn to let go. But how?

I think I used to be a fun person, light hearted and up for spontaneous jollies. Where is the room for that now though? How do I get everything done that needs to be done and still have space in my brain for carefree amusement? Not without careful planning, anyway. 

I know how pathetic that sounds, but the other night I went out to see a film, knowing that Nick was safe and the carers would be coming in soon to organise his dinner – but somehow they made a mistake with another cancellation and didn’t come. So he had no dinner and no medications and no-one to help him get undressed and into bed. I didn’t discover this til the next day when I found the food I’d labelled and left out for him untouched on the counter, the blister pack of tablets intact, and Nick perfectly chipper but wearing the same shirt he’d had on the day before and had probably gone to bed in.

Meanwhile the Red Cross have brought a wheeled bathroom chair that won’t actually fit in the flat. We weren't expecting it. Presumably Nick will use it to sit under the shower when the wet room is finally installed, only we haven’t got a date for that or any idea whether it will be weeks or months. 

I don’t know what to do with this chair or why they have brought it now without any warning, or who to ask for advice. At the moment the only place we can put it is under the communal stairs outside and hope that no-one makes off with it.

While I'm wrestling with this, Nick tells me that he has had an urgent text from his bank asking him to contact them immediately about his account which is in arrears. I did his online banking a couple of days ago and paid all the bills and there was money left in his account so that's worrying. 

Can I delegate the responsibility of dealing with any of this? I don't see how. Nothing in my brother's life seems to be straightforward and even trying to explain the various complexities makes my head start spinning like those circus plates. 

So it is not easy to think about letting go. Allowing a few plates to drop? Perhaps. Standing back for just a day? I'm up for it, but the endless to do list will still be there waiting. 

I want to know how other carers manage. Or are they just like me, madly juggling just to keep the whole shebang from cascading into total chaos?  

There are many things to be thankful for and oh so many things to laugh about if you have a black sense of humour.

But something’s got to give.

Bad Thoughts

What has happened to my life?

There is no time for me anymore and if I do get a break, I'm too exhausted to know what to do with it

Am I even allowed a life of my own?

I’m not coping

I’m lonely and so, so tired

Why can’t anyone see how much we’re struggling?

Why do all the services rely on me to sort it all out?

There is no-one to help

There is no-one else who can do this though

Whatever I do, it’s not enough but I am broken just trying to keep on top of things

It can’t carry on like this, but I can't see any end to it
I can't do enough to make it all right for him, I am failing him

I feel so guilty

Sometimes I hate Nick and I wish he wasn't there 

I am a horrible person to have these thoughts 
Shut up and keep going.

Burn Out

Typing from my pillow looking out at the sky, that as I’ve lain here has changed from clear lemony bluey sunshine to dusky twilight. Streetlights are coming on over the valley and I can see the neighbours across the road in their kitchen making tea.

‘Now the day is over, night is drawing nigh, shadows of the evening steal across the sky.’

I had such a long list of things to do today and haven’t done any of them.

Up early as usual, hit the ground running, went to work and on the way home my knees began to buckle and my feet started dragging and I just came upstairs and got into bed with all my clothes on and slept for two hours. 

I think I have reached a point of burn out.

My counsellor the other day saw this coming, I think, and said she felt I needed to find some respite. 

A little holiday, a night away in a hotel. I am too tired for either of these to even sound appealing, I just want to stay in bed and sleep for a week with no to-do list. No forms to sign, no proof of I.D or authorisation or address, no ten minutes of security questions for every phone call, no bloody post-it notes to carers or daily menu suggestions in the little black book. No health appointments to plan ahead, no incontinent cats or humans to clean up around, no dealing with the dozens of little health and household tasks the carers don't or won't do, no having to plan deliveries of suitable food and more importantly, wine.

But those things would mean no Nick.

No one is indispensable, I have always believed that, and in my work over the years with families affected by dementia, I’ve often counseled others to step away for a break, yes it will feel strange but you must look after yourself in order to keep looking after that person you love.

No-one ever looks after that person the way you do, which is why it feels so hard to leave them in the care of someone else; they will never be able to provide the same level of thoughtfulness and attention. Certainly, with no other next of kin there really is no-one else who can sign the forms, go through the security questions, and in the long run, make decisions in Nick’s best interests.

So I have to keep going. But maybe not quite so much like a raging buffalo.

Tomorrow is another day and there are things already set up for Nick that can’t be easily cancelled. 

I haven't got the energy to cancel, that will be work in itself. So I will do them, but slowly, and I’ll make a deal with myself to look away from anything else not on the list. Look away, walk away, believe that the world won’t end.

Right now, I need to rest.