My new job

MARIE: “Hello, my name is Marie and I’m a carer.” What’s in a name? The difference between ‘carer’ and ‘career’ is just one little ‘e’, but the connotations are worlds apart. Tellingly, the word ‘carer’ is one that my spell checker doesn’t even recognize – I suppose that software developed initially for business purposes wouldn’t need to include such an exotic term. But that’s my job now, to be a carer.

I’ve had my own business for the last ten years, working partly on commission and partly as a consultant and freelancer. That meant I was able to reduce my workload by degrees as Jon’s PD developed – letting go a client here, dropping an activity there, and reducing my hours (and income) as necessary. Very handy, but also a slippery slope that lead me, about six months ago, to a full stop with no paid work since.

We already knew that there is a system here in Denmark, similar to the carers’ allowance in the UK, by which a family member can be paid to provide the care that would otherwise have had to be provided by the health service. I have been joking for some time that that’s how I would end my working life, but I had not expected it to come so soon.

As Jon said in his last post, he has now been offered funding for personal assistance for 12 hours per week, and I have been employed (through the local authority) to provide that care. Many concerns went into making the decision.

It’s obviously a lot more convenient for Jon to have me do the caring. Then he doesn’t have to get up and dressed when some stranger says so, or go to bed when another stranger says so, or get undressed and showered in front of a parade of short-term carers and holiday temps, or rely for his drug regime on someone with little understanding of Parkinson’s, or be unable to go for his walk until someone is due to come round and help with his shoe laces. On the other hand, I expect he worries about becoming too reliant on me. What if I break a leg? Or, worse, what if I get annoyed and stomp off?

For my part, I don’t mind any of the actual tasks involved, but together they completely fragment my day. So although I only get paid for 1 hour and 39 minutes per day, there is no way I can fit paid work around this (trust me, I’ve tried). On the other hand, I can’t see myself enjoying a guilt-free day at the office in the knowledge that Jon is home alone almost the whole time, and relying on strangers the rest of the time. I dragged him along to Denmark, and I can’t now leave him surrounded by people he can’t properly communicate with.

So the best quality of life for both of us lies in me being the formal carer. It’ll make little practical difference, there’ll be a small but useful contribution to our finances, and I can continue to do my volunteer work for the Danish Parkinson’s Association for as long as possible. So I don’t actually mind, really. In a way it’s a relief to have that side of things sorted - it’s just that, well, I’d have preferred for it not to have become official quite so soon.

Help and support

JON: The story so far … Jon, intrepid explorer of the properties of custard and kindred products, has launched an offensive to take back his brain, bowels and other body parts. Hence, the first thing I did on getting home after the neuro-psych testing a few weeks ago was to put together my oscilloscope whilst muttering darkly that “this is going to show them … dementia, HA! (mad cackle)”. So that’s the brain reclaimed, now for the other two.

If I remember rightly (and that’s somewhat unlikely given the current state of my neurons), I described the neuro-psychological testing and new drug in my last blog. A few days ago, we went back for another visit. Whereas last time was about diagnosing my problems, this time was more about identifying my strengths and finding coping strategies. First of all, it was established that I had taken the new diagnosis fairly well considering that I’d essentially been told my brain is turning to mush from both Parkinson’s and dementia. I have not become depressed or brooding, and nor am I in denial (I tried, but Marie wouldn’t let me). Apparently, that means I am well placed to tackle my cognitive deficits.

The neuro-psychologist suggested that I need to take many, short breaks so I don’t wear out my poor old brain and that I should try to become more organized in my surroundings. Marie and I have always disagreed, and frequently fought, about the point at which a room goes from being “homely” to being “a vile mess”, and it seems Parkinson’s is now on her side. In the interest of order, I threw away my collection of old copies of the New Scientist. It was nice to have them, but when would I read them? Probably never, I can hardly keep up with the new issues – although I have just remembered an issue which had a piece on Parkinson’s …

Further, I should consciously decide what things are worth remembering and what not – like not bothering to remember appointments and birthdays because I can just look at our wall calendar, not remembering about shopping or dinner because Marie can do that, but deciding what to focus on remembering from my Danish language school. Lastly, the neuro-psychologist suggested that I would benefit from attention training, though I have no idea where that would come from as cognitive rehabilitation is apparently not on offer.

That’s all well and good, but is it enough? I doubt it … but listen, what is that sound coming over the hill? Hurrah, it’s the cavalry coming to the rescue in the form of a very fine drug named Exelon. Exelon by name, excellent by nature, I say. I started using the patches three weeks ago. At first I felt a bit better, but being ever the pessimist I waited for the debilitating side effects to make themselves known. However, I have had no ill effects, and, as the Beatles sang, it’s getting better all the time. Next week Marie will ring the hospital to report this happy news and get a prescription for truckloads of this wonderful stuff.

In other news: as Marie mentioned in her last blog, she asked the local authority to send someone round to see if I’m feeble enough to be offered regular help. We were expecting to have to fight for support, either practical or financial. Well, it just didn’t happen. They treated our case as urgent, sent someone round within the week, did a thorough evaluation of my daily need for assistance, and made a decision on this within days. It’s something of a shock to me, coming from the UK, to be given the help we need with such speed and ease. On the other hand, Marie and I both feel a bit off about it – I’m kind of embarrassed that an outsider should see me as someone in need of help every day, and Marie says she doesn’t like the idea of me being sick enough to be treated as an urgent case.

Anyway, the upshot is that I have been granted a budget of 12 hours per week to pay for my own personal carer to attend to my every whim, such as drying my back and putting on my socks and sorting out my drugs. So who have I decided to appoint to this vital role? Why, it’s … Marie. It makes no obvious difference to our life as this is what she’s been doing anyway, but it compensates a little for the loss of her income from a “proper” job (she hasn’t had one of those since June) and it might enable us to buy in a bit of help with the cleaning and the lawn mowing. The hourly rate is rather pitiful, but it’s an improvement on nothing at all.