Channelling Madonna

“If we took a holiday…just one day out of life…it would be so nice”

Well, I am channelling Madonna and going on holiday on Monday. Four whole days and nights away, out of the country, in the south of Italy with two of my oldest friends. 

Lucky, lucky me.  Many carers are on the job 24/7 and get no break at all. A terrifying percentage of carers have not had a proper break in years.

Just think about that, if you are lucky enough to be employed at a job that gives you 3 or 4 weeks’ holiday time; caring is a job too, often on top of an actual job and with minimal pay or recognition for your work let alone sick or holiday pay. The relentlessness is beyond exhausting; there is no clocking off and even if you do get a bit of respite time, it doesn’t last long and because you have full responsibility for the well-being of an extremely vulnerable person, shit still happens whether or not you are on holiday so you can never really relax.

I haven’t had time to look forward to my little break or even think about packing, because this last fortnight has been one long rollercoaster of busyness and emergencies with Nick. So, like any carer who is lucky enough to get a bit of time off, getting ready for a holiday means getting a thousand contingencies considered and prepared for so that you can actually leave the building. Sometimes it really feels easier to keep going and carry on as you were. Exhausted but present for when things go wrong, or just thinking ahead to make sure that they don’t.

Leaving Nick is not that simple. There is so much to do and to plan in advance. The carers will give him his tablets and meals and if the place is filthy on my return and the bins full, with fruit flies buzzing around empty wine boxes all over the sticky kitchen surfaces, so be it.

It’s the unknown quantities that bother me. Not fussy hypochondriacal fretting but proper down to earth worries for good reason. The handle fell off Nick’s bathroom door on Thursday while he was inside, and it was a good thing that I'd come along early to take him to the dentist as otherwise he’d have got trapped in there again.

As it was, I had to use a lot of ingenuity and a fork to twist the lock into place and let him out.

I called the council repairs team and they agreed that it was an emergency and to send someone round immediately. I stayed at Nick’s all afternoon until after 6 but no-one came.

My angry phone call yesterday (after almost an hour on hold. God. If someone could take THAT away from carers) got a promise that they would definitely fix the door before 6pm but when I went in today the door was still unmended. The temporary doorstop I’d made out of a bag of cat litter wrapped in bin liners gaffer taped to the lintel had already had it – nothing stays intact around Nick for long – so I have had to make another one and will phone the council again on Monday morning. Will they pick up right away? What do you think? That’s another forty minutes of my life I won’t get back.

Another worry is the fact that the housing officer at the council has issued a crisis log to Nick and one to Vic upstairs to document any new incidents. Although the hearing loop was working well so that there was no sound coming from Nick’s TV or radio, Vic was still on the rampage and we have had several more violent outbursts and more police calls.

Last Monday I bumped into him coming out of the building and thought, oh sugar. But I stopped being scared of him when I realised that his mental health is clearly on the edge; he kept repeating the same garbled rant about a letter from his GP, and when another neighbour intervened to say, “Vic, I live next door to Nick and I can’t hear a sound coming from his any more”, he got angry and told the man to back off. But I felt vindicated and delighted that someone else was backing us up.

It’s always been all too clear that Vic is distressed but lately I’ve been scared of him. Now he just seemed rather pathetic, and in his own way as vulnerable as Nick. Well, not anything like as vulnerable as Nick, for one thing he can walk and move about freely and speak clearly and act for himself. But he’s not right, that’s for sure.

I had pretty much made up my mind that he must be hearing noise from somewhere else altogether to upset him so much, or (more likely) completely hallucinating.

Then on Tuesday I popped round with some clean washing and it all made sense. I could hear the bassline as I reached the entrance to the building, and coming into Nick’s flat it was deafening. He had somehow found an old battery operated radio and got it absolutely blasting out at top volume beside his bed. All the windows were wide open and the curtains were practically vibrating with the sound, but he was fast asleep. After all that!!! I could cheerfully have strangled him.

He does dimly seem to understand why I have taken this radio away too as well as all the others (how did he have so many! The obsessive side of Huntington’s, combined with always being a boy who liked gadgets) but really doesn’t seem to get how important it is that he honours his side of the bargain not to make too much noise. I have been furious with Vic and scared of him too for making such a fuss, but if he’s been hearing the kind of volume I heard on Tuesday then frankly I don’t blame him.

Meanwhile the carers, who are supposed to do the evening call at a time specific 8pm to get Nick into his pyjamas and give him dinner, have been coming earlier and earlier and I have already complained that they’re arriving too early. Today they rang the bell at 5.55pm. I had gone round with the weekend paper and Nick had only just woken up from his afternoon nap. Again, a good thing I was there as I met them at the door and told them to come back later as this was far too early. I said I didn’t care what their rota said, it was contravening the instructions in the support plan (true) and to phone the office if they had a problem with it. I suspect though that they had got a long gap between clients and hoped to get away with coming here early so that they could make up the time.

Nick would have been befuddled and just let them come in and give him dinner a good two and a half hours earlier than his body clock would like, in his PJs like a baby at 6 while it's still light outside, and then left on his own for the evening before he even realises what’s happened. It’s not on.

I sound like a dragon but honestly I need to be, because the point I hope I’m making (and forgive me if I’ve laboured it, you can see that I could do with a break) is that things DON’T happen seamlessly. Even on a good day with no actual life-threatening disasters, there is always stuff like this that should be going according to plan but doesn’t. People paid to do their jobs, their “you had one job” roles, who don’t do them. Who sorts it out? Me. And if I’m not there to fight for Nick, who will be?

And now I am about to leave things to take their course for a few days and everyone says don’t worry, it’ll be fine, just go, and I’m sure it will - but you can see why I’m anxious, can’t you?

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.

The Nanny State

“Now, I’m just going to pop next door to hang up the washing, and then I’ll come back and see what you’d like for dinner”

“Nick, I’m going to phone the council now to ask about the repairs”

“I’m going to blend that chicken and bacon pasta a bit to make it easier to eat, and I’m slicing up some avocado too, for some extra calories”

“I’m just writing your menu for tomorrow and then we’ll do your online shop”

“I’m throwing away these holey socks, Nick, and finding you some better ones.”

And so on.

Do you do this too, I wonder? Go through the day describing exactly what you’re doing and what you’re about to do next. It's the Nanny State all right - the state of being a constant nanny. 

I know it’s not just me as I saw someone else at it today. One of my dementia clients lives with her widowed daughter who is her primary carer, and when I arrived this morning to take the mum out, the daughter was giving a running commentary about the washing she was doing, (“your favourite blue cardigan is in the wash as there was marmalade on the sleeve cuffs“ and “I’m just going upstairs to brush my teeth and then Mel will help you to get ready to go out”)

It seems to be second nature for carers. Why do we do it? 

I suppose because it’s important to try to include the person in their care decisions, even when they don’t have much capacity to choose, so that there is some sense of things being done in partnership. 

Sometimes Nick looks at me out of the corner of his eye while I’m busying myself about his flat, picking up his washing and opening the post, checking the freezer to see what food is left in there and what I might need to replenish, seeing how much wine is left in the box. It's all for him, but I'm still messing around with his things in his space and ultimately, totally undermining his independence. 

The only way I can lessen that a wee bit is to give the running commentary so I'm an ally, not a cat burglar. It's all done with the best intentions, but those can run away with you in the name of doing what you think is the right thing. And honestly, I do want to tell myself to shut up sometimes. 

Food for Thought

I have been pressing for ages for Nick’s care provider to have Huntington’s awareness training for their staff. They can have free specialist training, the council have said they’ll foot the bill for the staff time, it’s professional development, surely a total no brainer?

It’s been recommended all along by the speech and swallowing specialist and the NHS neuro team, and they said they’d willingly do a free session for the carers any time they like. Diana, our regional advisor from HDA, has also offered to do a session for a minimal cost, but the care manager has been dragging his feet.

Meanwhile, I’ve continued to wring my hands over their constant misdemeanours: kitchen surfaces awash with spilled wine and the bathroom floor unspeakable after the carers have just left; microwaved meals heated up on “Defrost”; food I’d put out for Nick and labeled going ignored: forgetting / not bothering to give Nick a pudding or gravy as requested, to increase his calorie intake and make it easier to swallow; presenting him with an entire chocolate cheesecake for dinner; feeding him while standing over him looking bored, spoon in one hand and checking their phone with the other.

Good nutrition is one thing but basic common sense is surely the most crucial thing of all. I’ve been a carer myself and you do need to be on the alert all the time, checking your client's signs of well-being from minute to minute like a cut rate Sherlock Holmes, with eyes in the back of your head for an ongoing risk assessment. But they simply don’t seem to notice the glaringly obvious.

Anyway, to my amazement they finally had the training this week and all the carers who Nick currently sees were there.

Afterwards I got a memo telling me that I am not buying the right kind of food for Nick as he shouldn’t be eating pasta at all (his favourite) but needs soft, fork-mashable foods that are easy to swallow. And a high calorie diet with lots of added butter and cheese, so please make sure that they are available. 

Oh, right! I was quite indignant that they should have two hours of HD awareness and suddenly they’re the experts. But at the same time I was really pleased that at last perhaps they get it, and that they want to be involved more directly in Nick’s care. We’ll see how things go from now on, but I do have some hopes that these niggles will start to improve. I’d like to think we can work together rather than me always having to tell them what to do, and them feeling wrong footed.

It also reminded me that I don’t actually know it all, and in my quest to protect Nick and look after his health and nutrition, there will be things that I’ve missed too. Sometimes it takes a fresh eye, or someone fresh from training, to see these things and point them out. They’re right about the pasta – I’ve been noticing for a while that it is getting much harder for him to eat it, and it’s me who’s been resisting giving him a diet of mashed potato and pureed food because I can’t bear its implications. There’s no looking back from the puree, is there, not unless you’re a baby.

With this in mind, I had to laugh today. Nick went for lunch with one of the friends who occasionally takes him out, and they went to a pub. She is sensible and knows all about the importance of nutrition and what not to feed him in case of choking. She has seen his struggles to eat and doesn't flinch at having to help him. 

“What did you have to eat?” I asked him later, when he was telling me what a good time he’d had.

“I had ham, egg and chips” he said.

“Goodness, darling!” I said. “Did you manage that Ok?”

My friend later confirmed that he had eaten the whole lot, and all on his own, every bite. It took him half an hour but it's just what he wanted. Where there’s a will, there’s a way, I guess, and it looks as if it’s not all just mashed potato quite yet.