Gratitude

Last week I started a deliberate project of being thankful for small things, because so many of the big things seemed out of my hands.

Also, I just got so sick of being permanently angry and complaining, so worn down by continual difficulties and obstacles, that I felt utterly defeated. What was the point of all this effort? 

I just started expecting the worst. When that happens, you become brittle, angry and permanently on the defensive. Even when you truly believe that the next transaction will go smoothly, it’s as if you give off an invisible signal inviting trouble. I can’t help thinking that the expectation of conflict can become a self-fulfilling prophecy.

There had to be another way to deal with it all. 

I made this list of reasons to be grateful to Nick’s carers, and it was an interesting thing to do because I started appreciating them more.

I am grateful that they come three times a day to give Nick his tablets so he gets the regular medication he needs.

I am grateful that they nearly always make his bed nicely.

I am grateful that their visits break up his day when he might otherwise be alone.

I am grateful that they feed the cat.

I am grateful that they are (mostly) reading the menu book now and following the food preparation requests.

I am grateful that they do the washing up and vacuum the carpet.

I am grateful that they are starting to put card and plastics etc. in the recycling bag.

I am grateful that it takes some of the load off my shoulders.

I am grateful that Nick seems to like them.

I am grateful that things seem to be gradually improving.

Have they suddenly picked up their feet and transformed magically overnight? No, not really. When I visited yesterday evening they had not switched off the washing machine or taken the damp clothes out and hang them to dry, as politely requested the night before. 

They seem to have a problem with giving Nick a pudding (which I have called by various names, “dessert” “sweet” and even specifically named, “chocolate mousse” or “trifle”, all to no avail) 
It just seems to be an alien concept to them.

He has developed a really sweet tooth over the last couple of years and craves chocolate; left to his own devices he would polish off a four-pack of Snickers bars after tea every night. It’s weird for me to see this when chocolate bought for the children used to sit mouldering in his cupboards for months at a time because he just wasn’t bothered himself. Now he loves it, but those big chocolate bars are a choking hazard as well as terrible for his teeth.

Luckily he also loves sweet, creamy desserts, which are actually something that dieticians recommend for HD because they are calorific and easier to swallow.

So we buy lots of these and I write it in the menu book every time asking the carers to give him a dessert after his main meal but it’s hit or miss whether he gets something or not.

One day last week I saw the lunch that they had prepared for Nick with a slice of blackcurrant cheesecake nestled carefully in the same bowl as his fish pie and chopped broccoli.

I had to add something to the list:

Just when I thought I had seen it all, I am grateful to the carers for surprising me.

Nick cracks me up.

We had a meeting with the social worker yesterday to review the current care provision and Nick’s increasing health needs. He’s getting a new chair, courtesy of the wonderful NHS, a big black sci-fi thing that will help position him better to sit, as he spends most of his waking time now sitting at his table to read, eat, listen to the radio or watch TV. He's still got the old-lady's high backed armchair I bought for £40 at a second-hand shop, and it's making some alarming creaks but is still miraculously holding up. 

When he wants to move he shuffles the whole chair with what looks like a huge effort, using his elbows for leverage, not lifting his bottom or even trying to stand. I worry about pressure sores from sitting in the same position all day do the new chair should help. It will need someone to help him, though as it will require locking into position by another person. I'm not terribly happy about this but the physio from the enablement service assures us it's the best option for his needs.

Meanwhile, the speech and swallowing therapist has recommended that he gets a lot more help with preparing and serving the right food, and for carers to be with him at meal times where possible to avoid the risk of choking.

The carers? This lot? It still seems to be a struggle to get them to give him some cutlery to eat his dinner. Or to make sure they are not trying to microwave a frozen fish pie on the Defrost setting, which I found someone doing the other night. Or to put the hoover away instead of leaving the flex trailing right across the doorway where he could trip over it. Nick says he doesn’t think any of them can understand what he’s saying as they don’t seem to take any notice.

The social worker was on holiday when I rang to flag up my concerns. Now I told her some selected highlights of their misdemeanours and she understood my alarm. We discussed the possibility of finding someone more to our liking through Direct Payments, not that I’m expecting that to be easy from what other people have said. But really, they are the pits. I didn’t go into anything like as much detail as I could have but she got the idea.

“What do you think about the carers, Nick?” asked the social worker. Nick, true to form, says the exact opposite of everything I have been telling her, or that he has previously said to me.

“I think they’ve been very good.”

Really, he cracks me up.

Afterwards I felt a bit bad about having dissed them like that to the social worker, but then last night we popped round to see Nick and found the main entrance door to the flats wedged open with a stick, the keysafe code visible for all to see, and the door to Nick's flat wide open. This was eight o'clock on a Friday night in a not totally respectable part of town.

We walked in and Nick, deaf as a post, was sitting watching TV with his back to the room and the two carers were gossiping in the kitchen. They jumped a mile when they saw us. 

For goodness sake! Are they nuts? Really stupid? Or just over worked and under paid with the bare minimum of training?

Whatever, I stopped feeling bad and started the search for another agency.

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.

An Unexpected Kindness

My heart sank when the upstairs neighbour came round to complain about the noise. It’s happening all over again, I thought.

I invited him in to meet Nick. At least that way, he could see for himself that Nick is not well, and Nick could understand the impact that his loud radio has on other people. The neighbour turned out to have tinnitus like me and gets very affected by external noise. He didn’t want to make a fuss, he said, but it would really help if the volume wasn’t turned up so high that vibrations were buzzing through the ceiling.

I stuck one of my dayglo post-it notes to the wall reminding him to keep it down, and “I will” said Nick, which is his constant saying now – totally meaningless, he says it about the wine (“Please pace yourself, bro”), the carers (“Nick, you must tell them what you want”), the radio, the reminders to check his phone for texts, you name it.

“I will,” he says, like some bridal ceremony on a loop, but even if he thinks he will I know perfectly well that most of the time he won’t. (“I forgot” is the other most popular saying.)

So I have been fretting a bit about the radio as well as all the other stuff I’m worrying about, since both Nick’s physical condition and his mental capacity seem to be deteriorating almost in front of my eyes. The carers are a still a huge worry; some of them have been really keen, reading the daily notes and making sure Nick has his non-slip mats and good grip cutlery to help him eat his beautifully chopped up meals. They have made his bed every time and someone has even been making a stab at the recycling!

Others are just not listening, or not looking. Why did they give him dry toast again this morning when the clear instructions were for two of those sticky malt loaf things that he likes, that the dietician recommended and that were in full view on the kitchen counter? Why was Nick wearing socks with his toes sticking out, bits of last night’s pasta still curling up on the seat of his chair, and a shit smear on his bathroom basin that had been there for three days (I deliberately didn’t do anything about it as I knew someone was coming in to clean today, and I wanted to see if they would notice. Sure enough, they said in their notes that they had thoroughly cleaned bathroom and kitchen, but the shit smear was still there. I felt like putting one of my post-it notes beside it with a big arrow, but in the end I didn’t.

It’s not good enough. It makes it hard to relax. So I feel anxious all the time with that awful infectious dread that has no exact source but just grabs you in the chest and sits there. I know that I can’t sustain this and do the real work of caring for Nick but it’s a real effort to lighten up and switch off, or move into another gear.

But things do give me hope. In the space of a few days, which is often the way, we have had the extremes of understanding and kindness.

One, the business exemption checking service, who wrote a stern letter billing Nick for willful mis-use of a form at the dentist’s. Sorry??

Long story. But to cut it short, Nick’s dear friend Dave from school had been alarmed by the tale of the wobbly teeth. He arranged for Nick to have an appointment with another old school-friend who is now a dentist.

This happened while I was away for a couple of days, so Simon took Nick. He said it was very moving to see the two old friends meeting again after all these years. Nick needed a small filling and had a scale and polish, with a reminder to brush more regularly and stay off the Snickers bars last thing at night. We didn’t think any more of it until this letter arrived.

Apparently Nick had signed the exemption form saying that he received ESA (and therefore did not pay for his treatment) when actually since coming to Sheffield he only gets contribution based ESA as his finances were so tangled that the income related part of it has never been sorted out. Another thing I’m still chasing. So anyway, he should have paid the fee upfront and shouldn't have signed the form. 

Simon didn’t realise – he just assumed that Nick didn’t pay for his treatment – and apart from a few flashes of lucidity, Nick will sign anything put in front of him these days. So that was that, but now, for his perfidious attempt to dodge the system, Nick is being charged a sizeable penalty on top of the actual fee.

I wrote at once to explain that Nick has a serious impairment that affects his ability to process information and of course this was a mistake, our sincere apologies, we will pay the bearer forthwith. But that wasn’t good enough. They replied that we would need to send a letter from a medical professional confirming that the illness in question would have that effect, and one form Nick giving his permission for me to discuss the case on his behalf. As well as prompt payment of the penalty along with weekly interest that was now accruing. If they decided that there was justification enough to waive the penalty then they would perhaps refund it.

Give me strength!

I have sent the proof they asked for and paid the original fee – stuff their penalty! –

and fumed to myself about the extra time it takes up to contact the GP and ask her to write the letter (an email won’t do), and also compose and print out a letter for Nick to sign. Not for the first time, I wish people- organisations, I mean – had a clue about the enormity of work involved for the average carer to just keep the wheels on the road. They genuinely seem to think that we have nothing better to do than gather six different forms of evidence and proof of I.D in hard copy, then send them all first class with recorded delivery.

If only there were some shortcuts for all this admin so that I don’t have to waste another afternoon jumping through other people’s hoops.

And then, just as I was feeling really low and that the milk of human kindness had definitely gone sour, I bumped into Nick’s upstairs neighbour at the paper shop.

“I’m so sorry” he said, “I did some research on your brother’s illness and it’s awful isn’t it? And he’s not going to get any better. Poor chap.”

He asked if there was anything he could do to help. You’ve just done it, I said. You’ve taken an interest – you’ve cared. That means so much.

It means so much that another person gets it, understands a bit about the situation. I realize that maybe there’s something I can do to ease my frustration with all these time-munching organisations. Who knows, it might make a difference and it will make me feel better.

So, every time I have to deal with the council, the benefits agencies, anything official like the dental exemption checking service, I am going to include a leaflet about Huntington’s in the envelope. I’ve started doing this with all my official correspondence. Just so you know, guys!

Passive Agressive Memo

Hey! Sheffield City Council! Thank you for teaching me the virtue of patience while I wait on hold as you search for any record of our previous conversation.

There’ve been a few of those so I can see why it might be confusing.

But look, don’t worry that your staff didn’t turn up for their appointment yesterday to take that spare bed away from my brother’s flat. They didn’t leave a message or anything so maybe something awful had happened, do let me know you’re OK, won’t you? It was so thoughtful of you to give us a generous two hour appointment slot but explain that the men could come in even if my brother didn’t hear the buzzer, because they have the keysafe number. It's so reassuring to think that they can come in any time!

Oh, and that other no-show appointment the other week? The one to fix the wonky handle on my brother’s bathroom door? The one you didn’t think was much of an emergency, and obviously you’re the council so you know best. I’m just a boring old health & safety nut with nothing better to do than think ahead, I know, silly me, still you were kind enough to agree to send your repairs team for a look.

That must have been another time when something awful happened to prevent anyone coming when they said they would, or getting in touch. You poor things! So accident prone! Well don’t worry about that, as you’ll know by now, the Citywide Alarm Team managed to get him out when the handle came off altogether and he was stuck in the bathroom - he was fine, nothing else broken, just the door and a few little bruises.

Oh and these phone calls? I hope I’m not being a nuisance? Sorry if I’m keeping you away from more important things you should be doing. It’s just that as I was saying, I’ve got nothing better to do all day and it helps to while away the time. And it’s so cheap to call you, too!

Anyway, thanks for all your help. And for that lovely soothing music you’ve been playing while I’m on hold on the phone. So thoughtful. You make me feel special, like you really care.

Memo for a new month

Is it possible to sack your care providers? I wonder as I send off another Howler. Actually I have stopped bothering with Howlers. It’s all short, sharp and to the point. The service is unfit for purpose.

On Monday I made another complaint after I went in and there was no lunch left out for Nick at all. There was a slab of home-made quiche in the fridge (not mine, I hasten to add but some that my kind neighbour had brought round) and in the communications book I had asked lunchtime carers to put it in a bowl with some potato salad.

I don’t know why this didn’t work but it didn’t.  I knew that the member of staff who’d been in at lunchtime was the one who’d been there with the manager the night before and that the manager had been explaining to him how the book worked, but it didn’t seem to have made any difference.  It’s not just the book, it’s in the care plan to give Nick something to eat – what is going wrong?

I have been trying to keep really calm and neutral when talking with Nick about the carers because I want him to make his own mind up and not just say what he thinks I want to hear. These days it can take him a while to vocalise how he feels about something. 

If he likes them then it doesn’t matter so much about the food or the unlocked doors or the bad timings, I say to myself. But I’ve yet to see any real empathy or attempt at a rapport, especially when he says that the person in question – the one who came in and didn’t leave any lunch – does not listen or try to understand what Nick asks, just does his own thing regardless.

Over the last week in particular, the whole picture has driven me almost mad. It’s been harder and harder to lift my head above the waters and find some point of equilibrium. I feel like just sinking to the bottom of the ocean, curled up like an anemone. But that just won’t do. For a start, who would look out for Nick then?

So I have to find some balance. I long for comfort, reassurance but not the soppy kind, more the vitamin shot that helps you carry on way past what you thought was your burn out point. To believe that I am worth it, as they say in the ads. Some Nourishment for the soul in radical times! That’s what is needed.

By last night things seemed to be settling down a wee bit and I think they are beginning to understand the score. I found a note saying, "Please bear with us as we are only getting to know Nick" which touched my heart and made me feel a bit bad about making such a fuss. Then I thought, hang on! They've been coming here for two months. That's actually quite a long time in social care. Long enough to have understood where the bloody bin bags are by now.

But on Monday I just felt fed up. I don’t feel 100% safe leaving Nick’s care with these guys. 

I phoned social services and left a message telling them I was extremely unhappy with his care provision. That there were some serious safety issues needing immediate attention.

There wasn’t anyone picking up but I got a recorded message saying they were very busy helping other callers but someone would get back to me within the hour. I think you might guess the outcome of that one. I called them again a bit later, and then again first thing yesterday morning. 

It's Thursday now, and a new month. I've still heard nothing back. Maybe their quota for responding to people in January was full. Maybe safety issues are not a priority at the moment. Maybe I am already on some secret file labelled "Complaining Madwoman." 

And maybe - yes, maybe - they are ridiculously busy and overstretched. But it's their job. To uphold the rights of the individual and protect the vulnerable. It surely shouldn't just be down to me and other carers like myself to fight for these things?