Work is never done

MARIE: I wonder if well people know just how much time it takes to look after an illness? I suspect many think that people like Jon, and by extension people like me, potter round aimlessly for hours on end, get exited by the arrival of the postman, and generally live in a perpetual state of benign boredom.

That’s about as close to the truth as creationism. Our alarm clock rings at 6:30 every morning for the first pills and the start of the day. Two days a week Jon goes to the Oak House all day, two days a week to physio – at noon, because that’s when he benefits most, but it does rather bugger up the day. The last weekday often goes on other appointments, like the GP (who must be quite tired of us by now) or neurologist or Parkinson’s nurse or foot lady or social worker or (soon) psychologist. And there’s the installation of the duodopa pump soon, with two days in hospital for the last tests later this month and a further two weeks later in the year.

I have to drive Jon everywhere, and everywhere is quite far away since we live in the middle of (beautiful, cheap) nothing. What with the language barrier and my innate curiosity, I usually hang around during appointments, rather than go off like a sensible person to do the shopping or whatever.

So the only concentrated time I have for “office stuff” is the two days Jon is at the Oak House. I have a to-do list as long as back in the good old days when I got paid for this sort of thing. My list this week included these little jobs, none of which would have been necessary were it not for Parkinson’s:

• call the hospital to follow up on Jon’s test appointment – it took most of an hour to get through, but I then had a very useful half hour chat with the Parkinson’s nurse
• chase up Jon’s escort service as we have heard nothing about concrete arrangements since he was approved for the service – that’s required several calls already, and I still haven’t managed to get through to the right person
• investigate rumours that a special Parkinson’s class is being planned by another local physio – after four abortive attempts I finally reached the right person, who confirmed the plans, but says nothing is certain yet, so she’ll call me when she knows more
• spend several hours visiting two nursing homes that are potential places to live and/or go for respite care, because we are new in the area and don’t know what the various places are like, and because it’s been recommended that we (or perhaps rather: I) scout them out well before we need them, so as to avoid much (di)stress later
• do a web search to jog my memory as to the name of my psychologist, and then call to make an appointment for Jon, who wants to see if she can help him with the stress reactions that regularly bugger up his speech in shops and on the phone
• most laborious of all: make a list of everything we own in the world (and that’s well fragmented, with our history of moving around and leaving bank accounts and small saving pots all over the place) and decide what belongs to who, in preparation for making a will that is both livable for me and fair to Jon’s children – that’ll take the best part of a day

So no, we don’t get to twiddle our thumbs much. I keep thinking that if we can just get this one big thing, and perhaps those three or four minor things, out of the way, then we can relax and start working on those thumb muscles. It just never happens, there’s always something new to deal with. Just like there is for everyone else. And I suppose we wouldn’t really have it any other way.

Pinball man

MARIE: Before you even think to ask: no, we still don’t know when Jon will get the Duodopa pump, but we’re getting impatient. I guess I’ll have to call the hospital next week – we have decided that our patience officially runs out on the 1 of September.

Since Jon got offered the pump almost three months ago (see, we have been pretty good about waiting), his hyperkinesias have got quite a bit worse, and now he suspects he may have had his first Parkinsonian fall. We expect both these problems to get a lot better with the pump, which will even out drug delivery and which can be much more finely controlled than pills.

The hyperkinesias, which are incessant involuntary movements, are a side effect of the L-dopa. Basically, Jon now has hardly any window of “normality” between too little medication (when he is slow and frozen) and too much (when he gets hyperkinetic). It’s thoroughly miserable being under-medicated, whereas being over-medicated is like being a little bit high. Guess what he prefers.

So once the drugs have kicked in sometime before midday, Jon spends the rest of the day in constant movement. He never sits entirely still, he’s always tapping a foot and nodding his head and gently gyrating from side to side on his chair. Standing up is worse, he weaves and ducks (like fellow Parky Muhammad Ali before PD) and his head wobbles like one of those dashboard toys. Sometimes its so dizzy-making, I have to grasp his face in my hands to keep it still while we’re talking – I pretend I do it to be affectionate, but we both know the real reason. At its worst, walking from one end of the house to another is a game of pinball as Jon spins and bounces off the furniture, walls and door frames.

A bonus problem is that Jon draws a great deal of attention now. It used to be that his walking stick was enough to indicate to people that he had leg issues rather than a drink issue. But now the hyperkinesias affect much more than merely his balance, I have again noticed people staring – or almost worse: very deliberately not staring – at him and wondering how it’s possible to be that drunk that early.

I’m not sure Jon’s suspected fall was caused by the hyperkinesias, it could equally well be a direct symptom of PD. Balance is very often affected, and if you move slowly you may not have time to reach out and stop the fall. Also, he fell backwards, which is very characteristic of Parky falls. At least it wasn’t dramatic. He had knelt down to take a photo of my Dahlias (or what’s left of the after the ravages of snails and slugs), and from a squatting position gently tumbled backwards to find himself “turned turtle” on the lawn, camera pointing at clear blue skies. It would be very funny, if it wasn’t also quite sad.

Learning curves

JON: As you may recall, we moved to Denmark with the theory that I was still capable of learning a new language at my advanced age. At first I went go to a government-funded language school, a fine institution with what claims to be an efficient method for teaching the young and able-minded amongst us. However, it is perhaps not quite such a good method for the somewhat more elderly, and definitely not a lot of use for anyone with a degenerative brain disorder which is slowly turning his grey matter to custard. I have often said that if at first you don’t succeed – just give up. I took my own sage advice and gradually dropped out of language school.

But although my “just say no” approach to failure works OK in general, I admit that it’s also nice to succeed once in a while. An aside: who is most likely to succeed? A toothless budgerigar (succeed/suck seed). It’s a dentist joke – my–o-my but we had fun whilst chiseling wisdom teeth out of jaws.

Anyway. Then we had a brain wave (well, when I say “we”, I mainly mean my thinking-brain dog, a glossy-haired bitch called Marie). What I needed was a group of people who would talk to me in Danish v-e-r-y - s-l-o-w-l-y and preferably also have a limited vocabulary. Who answers to that description? Old folks, that’s who. So I started going to the Oak House day centre for the slightly demented twice a week.

At first this was perhaps a less than perfect solution. Of the other eight or ten old guys and gals there, only two spoke a form of English, but not as she is spoke in Blighty - more pidgin, or perhaps swan. However, their English was vastly superior to my Danish, so it would be churlish to complain.

However, I recently changed the days I go there from Mondays and Fridays to Tuesdays and Thursdays. And with that change came a whole different bunch of people, so things started to perk up rather pleasantly. Here was fresh meat, or at least several new blokes, to practice my Danish on. One guy in particular speaks near-perfect English. On our first meeting, he told fascinating tales of international derring-do and seemed to be an all-round good guy, so much so that on my first day I had to wonder why he was an ‘inmate’ of the day centre. It didn’t take long to work out what the problem was, though: he has the memory capacity a concussed bee or, for the more technical of my readers, a Sinclair ZX80. So although his stories are interesting, they have a tendency to repeat on you over and over again. Fortunately, my memory is not that great either these days, so I don’t mind the repetition too much.

Now, if I could only get them to serve proper food at lunch instead of all this foreign muck…

It’s social life, Jim, but not as we know it

MARIE: We’re at the start of a busy summer of visits from family and friends, mostly ‘Jon’s people’ a few at a time for longer stretches and ‘my people’ in brief hordes. Looking at the calendar, there’ll never be more than 6 days between visits from now and until at least early October. This is a cause for much joy and celebration (and overeating), because it’s wonderful that these lovely people want to spend time with us in our rural exile-idyll.

But with Parkinson’s in the house with us, it’s not as easy as it used to be. Jon is slow to get started in the mornings and I need to be on hand to help, even if the help turns out not to be necessary some days. Jon also needs regular breaks, when we’re out and about he needs to sit and rest every so often, and when we’re home he zones out in his comfy chair or goes for a little lie-down. Late nights are a thing of the past, especially if he’s to be functional the next day. But within those constraints he does hugely enjoy these visits from home.

For my part, I feel the absence of an active co-host. We’ve chosen our families wisely and each and every one of them is helpful and thoughtful, nevertheless I almost invariably find myself first to rise and last to bed. Plus there’s the planning and shopping ahead of visits and the cleaning and laundry after. That said, I too love the visits and wouldn’t miss them for the world.

A compromise has to be struck between the demands of Parkinson’s and our guests. This is an evolving negotiation with no permanent solution possible as the disease develops, but for now the ground rules are that guests must stay in the delightful dungeon we have kitted out for them until 10 am, must sort themselves out for breakfast, and must not expect anything to happen in a hurry. Plus the more help we get with the cooking and washing up, the happier I am.

Last week’s visit from Jon’s son and daughter-in-law was the first visit of the summer and (weather aside) it couldn’t have gone better. Not only was I relieved of cooking half the time, they also helped us shift furniture, fix computers, burn garden rubbish etc. etc. On top of which we made some interesting excursions, including a day out at a large hole in the ground that Jon’s been wanting to see for ages. I hope the kids enjoyed it as much as we did.

Companionship

MARIE: We’ve been immensely remiss and haven’t blogged for an age. I’ve been busy in the garden, preparing to receive a family of bees and growing my rhubarb to such a size that you must admit the leaves make my bum look positively tiny. Jon’s been busy with computer matters and still is. He’s such a nerd and claims to actively enjoy the hours and days it can take to fix a bug or get a new device functional.

There’s nothing new on the pump front. We’re not surprised but perhaps very slightly disappointed not have an appointment yet. But I guess elective surgeries grind to a halt during the summer just as the rest of society. We’ve decided to be patient until the school holidays are over. If we still haven’t heard by then, I’ll have to get on the phone.

Meanwhile, we made an application some weeks ago for an escort service for Jon. Not perhaps quite as exciting as it sounds – I understand a firm hand on the elbow is about as up close and personal as it gets – but an opportunity for Jon to get out and about without having to rely on me.

He wants to spend hours on end in electronics shops. He wants to return over and over to one particular museum to perfect his photo of one particular exhibit. He wants to go in search of the perfect desk chair, and he wants to go fishing, and maybe he wants to attend lectures in bioscience. But he does not want to wait for me to have the time, and he certainly does not want to wait for me to have the inclination. And although I want to help Jon and be available to take him places, I recognize that too often recently my other commitments have gotten in the way of his plans. That’s not right. It made him feel a bit isolated and made me feel a bit guilty.

But then I discovered that our local authority runs this service (which they wisely omit to advertise) where those with permanent disabilities can get a free escort for up to 15 hours per month. We thought it would be brilliant for Jon to have someone who can drive him places and help him find his way round and give him a hand when he gets shaky and help him remember the drugs etc. etc. etc. – basically what Jon calls a thinking-brain dog.

Yesterday was the meeting to decide on our application and to our mid-sized surprise, it was approved almost straight away. Now we’ll have to see if the local authority has a suitable escort on their books. If not, we can find somebody ourselves – perhaps someone a wee bit international from Jon’s old language school.

Government-funded freedom (for both of us) – not bad!