Dr Careworker

It's good that increasingly, qualifications are required of careworkers. I don't recall hearing that they need a medical degree though. So you can imagine my surprise, yet again, at a carer telling me that I'm "lucky" to have "mild" MS. (I told her the MS bit. She didn't have to work that out.)

They apparently come to this conclusion because I can still walk - more of a shuffle, really, hanging on to furniture and bumping off walls, but walk - whereas other people with MS they look after can't. There are four possible replies I can think of to this, when I cool down enough:

1. When did you finish your medical training then?
2. When someone has "mild" MS, you wouldn't know by looking at them that they have it.
3. If I had "mild" MS, I wouldn't have a care package paid for by Social Services. Paying your wages, m'dear.
4. The symptoms of MS aren't just about mobility. Everyone with MS has a different collection of symptoms, progressing at different rates.

With today's careworker (didn't you just know this rant had come from somewhere?) I used number 4. Sat her down and talked her through all my symptoms. At length and in detail. All complete news to her.

Don't you think it would be useful if home careworkers got at least some training about the conditions they're likely to come across in their work? MS is the most common acquired neurological disability in young adults, after all - it's hardly unheard of. I forgot to tell her that stress makes MS worse, but it does!

My life in one day #disabilitynormal #fitforwork #spoonie

I've posted before about individual symptoms of my MS - sleep problems, fatigue and so on. The idea of this post is to describe a "typical" day, to show what my life as someone with MS is like. I'm not describing any one particular day, but I'll try hard not to exaggerate and make it some sort of extreme horror show.

My sleep pattern is pretty messed up, so I wake up at 4am. I know I won't get back to sleep for a while, so I get out of bed using my bed lever to sit upright, swing my legs round and stand up. I shuffle towards the toilet, accidentally kicking the cat on the way (he will sit where I'm about to be!) As a result, I lose my balance and collide with the bathroom door. Fortunately only slight bruising on my arm and shoulder.

Having completed my ablutions, I make a drink, only scalding my hand a bit this time, then go through to the living room and curl up on the sofa. I now have a pretty comprehensive knowledge of very early morning TV. In fact, I'm thinking of making it my specialist subject on Mastermind. To my shame, there's a pretty dreadful reality show called Guilty! I've become fairly addicted to.

After a couple of hours, I conk out again. At least I assume I do - I have no knowledge of the process. It's like someone slugs me with a baseball bat. The only way I know roughly when it happens is because of what TV I remember.

I wake up again around 11. Well, I say wake up - it's Dawn of the Dead stuff for about the first half hour. Not only can I not do whole sentences, but words that seem quite comprehensible inside my head come out as grunts and mumbles. If I manage to stay awake, I can start moving around, getting off the sofa, that kind of thing.

Next to me is a cup of cold coffee. This means that while I was asleep, my carer has let herself in, done her work, and gone. It's a Monday, so the work included hoovering all around me without me stirring. When I sleep, I sleep! I'm reminded of the time I fell asleep in a lobby in my wheelchair, and woke up to find myself in a hoovered lobby, in a wheelchair-shaped dirty spot.

By this time, the cat is demanding attention. He's a breed called an Abyssinian. They're the ones who were worshipped as gods in Ancient Egypt. Unfortunately, someone once told him he's a god, and ever since he's demanded worship as his due even more than most cats! He also has both hollow legs and a hollow tail. I feel like I spend most of my day trailing back and forward between the sofa and either the kitchen or the door.

One o'clock, and the carer comes back for my shower. No, no photos! Showers bring another level of exhaustion, though. A lot of people with MS (including me) find that their symptoms are made worse by heat, especially steamy heat. So really, baths and showers aren't ideal, while clearly they're great for keeping you clean.

I was hoping to do some reading today, but my brain decides not to cooperate. Instead I spend lunchtime and the afternoon basically staring into space. I can't even concentrate on Jeremy Kyle. Finally, about 4, I feel like I can do a bit of work, so I do some studying.

When I took ill with what turned out to be MS, I was in the later stages of a BSc in Health Studies. I managed to complete it with first class honours. I was determined to carry on an academic career as far as I could, and registered for a PhD. I was only about 6 months from completion when I had to drop out - the fatigue and cognitive (thinking) effects of the MS had just got too bad.

I still have the studying bug though, and I've registered to do a first year undergraduate short course, in a new topic area for me. I'll see how it goes. I don't want to lose touch with studying completely, but I also don't want to overdo things. That would just make things even worse.

Time for food, and I stick a ready meal in the microwave. I very rarely have the energy to do anything more than that: even when I do, it would be something like cheese on toast, or an omelette. Some days I don't even have the energy for the ready meal option, and have to get a takeaway delivered.

After my meal...dammit, I fall asleep again, and miss my favourite television. (It's Monday, so yay, Glee) (Yes yes, I know, don't judge me)

When I wake up again, it takes me a while to work out the time - could be any time from 8 to midnight. I eventually realise that it's about 9, and there's still plenty of time to go online and chat to my online MS friends. In fact, since I've just been asleep, I don't want to go to bed too early, in the hope I might sleep a bit longer overnight.

Online I go, to the chatroom at the wonderful Jooly's Joint, and to chat to Eggy, Mel and Sarah (strict alphabetical order girls!) on MSN Messenger. About 11.30, I say goodnight, feed the cat for the final time, take my final vast dosage of medication (ah yes, I haven't mentioned that) and head off to bed, still stiff and in pain.

So that's a fairly typical day. #disabilitynormal, in fact, for a #spoonie. I'm still waiting for the forms for my Employment and Support Allowance (ESA) review, but while I'm reasonably sure they won't put me on Jobseeker's Allowance, it's quite possible I'll be put in the Work Related Activity group, and have to undertake activities "with a view" to working in the future. In view of all the above, do you know anyone who would employ me? Really? I'd love to work again, but....really?

Need to know basis

Before I took poorly, I used to be a volunteer carer for a charity that provides holidays for people with physical disabilities. As far as I could work out, the policy (certainly for new volunteers) was not to tell us what disabilities people had. I assume this was so that we would treat them as people not as disabilities, yada yada, all that stuff.

But do carers need to know what disabilities the people they're caring for have? How much do they need to know about them? Whose role is it to explain to them?

I think it varies according to the status of the carer. A personal assistant, who can be with the disabled person 24/7, ironically needs less information. They have far more time to become aware of their employer's needs, and can adapt moment by moment.

A home carer, on the other hand, cares for several clients over the course of a typical day. They need to know the basics of each client's condition, and of the complications that may occur.

Many conditions are very variable. For example, you could take 100 people with MS, my condition, and you'd have 100 different sets of symptoms with 100 different levels of severity. A carer I had in the past expressed her (unwelcome) opinion that I had "mild" MS because I could still walk a little. She was taking no account of my fatigue, pain, bladder and bowel symptoms, spasms, cognitive problems, etc etc etc... Incidentally, I finally sat her down one day and explained all these other symptoms. In detail and at length.

So, it would be of benefit for home carers to know about the possible symptoms of the conditions they're dealing with, and the variability involved. Who should tell them about each person's situation?

Ideally, of course, it should be the client themself. The client's input goes into drawing up the care plan which guides the carer in their work. It's also important, though, that carers receive training about the conditions they commonly deal with. As far as I am aware, none of my carers so far have received any training about MS, although all have cared for people with MS before me.

So...up to us then? We need to educate our carers about our conditions, not only so that they are better able to care for us, but so that they are better prepared for the future, to care for people who are maybe not as articulate as we are.

A carer enters spooniedom

So, the new carer was in this morning. She arrived at 9, woke me up. That's fine, she's meant to. Made me a cup of coffee, did the washing up, made the bed, all that good stuff, and off she went.

She came back at 1 to do my shower, and woke me up. "How long have you been asleep?" she asked. "Since you've been gone" I replied. She thought this was very odd.

She doesn't know me yet, does she? Welcome to the world of spoonies, love.

Out with the old...

A Care Agency Ltd is no more - for me at least. For the last year, I've been trying to make what seemed to me, in my innocence, to be a small change in my care plan. I didn't want any more hours - just the same hours at a different time of day. This has turned out to be a request of mammoth proportions to organise. Finally, following the threat of a complaint to my councillor, I was told that I would have to be moved to a new care agency. Seemingly A Care Agency Ltd couldn't provide the hours I needed, having told me on the phone they could. Ah well.

That was about a week ago. Heard no more. Then this morning, nobody turned up for my call. I phoned A Care Agency Ltd, and was told (eventually, like the third time I phoned) that Social Services had told them not to come any more.

Ah.

Social Services, on the other hand, told me that A Care Agency Ltd was refusing to come any more because they'd been told they were losing the job. Hm. Well someone was telling me porkies, and to be honest I didn't particularly care who it was as long as someone started doing my care again!

So eventually, after being on the phone for most of the afternoon, I managed to speak to the supervisor at A.N.Other Care Agency Ltd, who will be starting my care as from tomorrow. Hopefully...

It's a shame that my final experience with A Care Agency Ltd wasn't with one of the carers I particularly liked. What's more, this was the woman (also immortalised in this post as "the Hockey Captain") who once tried to wash my boobs in the shower. I can wash my own boobs and down-belows thangyouverymuch, and I tend to find someone lunging for them when I'm nekkid a bit unsettling. Even if they are holding a sponge.

 Tomorrow is another day and all that. We'll see what it has to bring. Watch this space!

Cutlery carer and co

Now, before you read any further, I should make it clear that the majority of the women who come from A Care Agency Ltd (name changed to protect the guilty) are nice, friendly, helpful, people. By far the majority, actually. The fact remains, though, that in the time I've been receiving care I've encountered some...well, let's just call them characters. Let me introduce some of them.

Cutlery carer
Many of my friends are used to hearing my stories about "cutlery carer". Her speciality (and that of her apprentices) is putting things back in totally the wrong places. It could be the forks in the spoon section of the drawer (hence the name...), the plates in a pile on top of the cooker, the tumblers (entirely randomly) in with the cat food instead of on the window sill directly where she'd been looking while washing up...I spend a lot of my life on a kind of treasure hunt.

Too fussy and can't be bothered
I suppose these two are kind of the opposite of each other, so I'll consider them together. "Too fussy" hovers over you, checking you're OK and that everything's being done to your satisfaction till you're just about ready to wallop them! This type can be fine once they calm down a bit. "Can't be bothered" has two sub-types. There's flat-out lazy, about which there's really nothing else to be said. And then there are the ones who actually and genuinely seem to have a mental block about seeing the things that need doing. For three days running they'll step over the basket of washing that needs folding, or not notice the stain on the carpet. Not sure what the answer is with these ones. Are they like this in their own homes?


Speedy Gonzalez

Speedy certainly moves fast and gets a lot done! The only problem is, she gets easily distracted in the middle of one job and goes off to do something else. As a result, I keep finding things like pints of milk sitting out on the worktop hours after she's gone. In the summer.

The hockey captain
...or certainly some kind of school prefect. Does a lot of "jollying along". Isn't interested in the fact that I'm not up to a shower today. My care plan says I'm due one, so she's damn well going to give me one! Also has a tendency to call me "dear", which leads me to suspect she's forgotten my name.

...and some nasties
Unfortunately, not everyone who does care is a nice, good person, and I've encountered a (very) few of the other sort too - either giving care to me or as a colleague back when I was a carer myself.

I've had some bad experiences with carers who seemed to think they had medical degrees, from the way they pronounced on the course, degree and prognosis of my MS. One told me (repeatedly) that I was lucky to have "such mild MS". Now while there are many, many people worse off than me, I don't think I'm particularly mildly affected either. I eventually sat her down and took her through all my symptoms, one by one. The only MS symptom she had been aware of was mobility problems.

I have also been unfortunate enough to have to deal with a racist, bigoted carer, who chose to spout her views to me. I made an official complaint to the agency about her, and asked never to have her do care for me again.

And really...some people are just plain not nice, not approachable, not sympathetic. I'm not talking about individual personality conflicts, which are inevitable. There are some people who just should not go in for care work.

So, those are the carers I've encountered. How about you?