Micro planning

MARIE: I’m away, and it’s great. Away as in on holiday, all on my ownsome, with no responsibility for anyone or anything. Just me and the cats and a pile of books and some gorgeous walks right outside my door for a whole, brilliant week. I picked this place based largely on a user evaluation that declared it a beautiful area and a well-appointed holiday flat, only too bad that the area was kind of boring with no people. YES, I thought, that’s precisely what I want and need.

 

An important bonus is that while I am off communing with nature and literature, Jon is well cared for and feeling quite content. It took some doing, though. I will admit to being a bit of a control freak, but preparations for this trip really tested my skills at micro planning and micro management.

 

Our care liaison at the local authority came round for a long meeting to determine Jon’s needs and to what extent they would be able to meet them. Quite a large extent, I am happy to say. He gets visits at 6 am to fit the duodopa pump, at 8 am to help with showering and dressing and breakfast, at 4 pm as a general check-up (which probably isn’t necessary), at 6 pm to serve dinner, and at 10 pm to disconnect the pump.

 

We had a steady stream of nurses and nursing assistants through the door the last few weeks before I left so that they could all learn how to work the pump, where things are kept, and what must under no circumstances be forgotten. I left them with prepacked drug doses, an appropriate number of home-cooked ready meals in the freezer, and numerous lists of phone numbers and appointments and key points and whatnot – some because I felt it was necessary, others because they asked me.

 

In the middle of all these preparations, it became clear that I was failing to teach Jon how to look after the cats, so further arrangements had to be made for people to come in and care for them during the first few days of my break, until I could make it back to collect the kitties.

 

By the time I finally got here, I so needed a break.

 

We parted on less than happy terms, I’m sorry to say. I needed to do a quick supermarket run before stuffing the cats in the car and setting off, so offered Jon a lift if he too wanted to get some groceries. He accepted, but turned out to want the electronics store rather than the supermarket. In fact, he thought I could just drop him there and he’d take the bus home. Now, 9 times out of 10, that would work fine, but what if this was that dreaded tenth time? What if I got a call half-way across the country to tell me that Jon had fallen down in the street, or got on the wrong bus, or lost his way, or gone OFF and been unable to move – all things that have happened in the past. So I wouldn’t let him take the bus. That pissed him off. So I took him to the electronics store and waited while he did his shopping. That pissed me off. And when it came time for me to leave, he was still too pissed off to say a single pleasant thing to me, even though I begged him repeatedly. Oh well, at least one of us soon forgot that. I really need to stop minding so much and just accept that he can’t help it.

 

I’ve talked to Jon several times since I left and have been relieved to hear that he is well and that the week has brought few challenges. He’d be happy to do this again, and so would I. I hope the nurses agree.

Woes and wonders

MARIE: We had a visit from a local authority worker to talk about our potential future needs for outside help with Jon’s care and how that might best be provided. Basically, I am trying to prepare for the time when it becomes unsafe for Jon to be left alone. I have seen many carers try so hard to be all things to their sick spouses that they end up running themselves into the ground and being no use to anyone (including themselves). I don’t want that for myself. The easiest option would be to apply for a nursing home place at that point, but I can’t see Jon thriving in a place like that, not least because of the language barrier. I don’t want that for him. So I’m exploring other options, specifically finding out what it takes to get funding from the local authority for us to hire our own helpers more or less round the clock. I know that option exists, and I know it’s very difficult to get approval for it, but I can dream and I can scheme.

 

So, a nice woman came round to explain the application process and our local authority’s view of who is eligible. She wanted to start a file on Jon right away, which I believe will be helpful for us later on, but which required us to go through in excruciating detail, for the umpteenth time, our entire history of woe. We had to lay out in full view all the things that Jon can’t do or finds it difficult to do, all the things I have to help with and keep an eye on, all the things we get assistance with and all the things nobody can ease. How do we feel about A, do we get terribly frustrated about B, and are we able to engage in C at all?

 

I see the need for the questions, no argument there, but it is SO HARD to have to focus on all the stuff that’s wrong, when normally we try our best to be blind to anything except the stuff that’s still right. Jon’s short-term memory is a blessing in heavy disguise, I guess, but I was down for days after this reminder of the challenges before us, both now and in the future. The future is not really something you want to dwell on with two degenerative diseases in the house, and yet you have to do what you can to prepare yourself, if not mentally then at least practically.

 

I wish there was a way to get help without actually having to ask for it.

 

On the definite plus side, we got new kittens. They’re impossibly cute and far to little to be without their mother, but heartless people just left them in a cardboard box for the cat sanctuary to deal with. Jon and I are their mummy now – and are in ruthless competition for their attention and affection.

Not all bad news

In my last post I had a little moan about feeling just a tiny bit useless. But it now seems that I am not such a waste of space after all.
(1) I got an invitation to give a lecture in the UK
(2) I got a phone call from a multi-national company asking for my advice on a technical issue

Yes, it is nice to feel wanted. I was happy to deal with (2) and am still considering (1). Perhaps a lecture is a bit much to ask of myself – the last one I gave, about a year ago, was quite stressful and not as polished as I would have liked – but I am considering asking if the idea of a lecture could be changed to more of a discussion session which I think would suit me better. But the point isn’t really whether it happens or not, it is the ego-boosting knowledge that They want it to happen.

I’ve also got a few things to look forward to, first a visit with my grand children next month, second a trip to France in the autumn, and as a matter of literary style I should have a third item which I don’t, but I’m confident that one will turn up. (Me, confident? It must be the drugs!)

Not only that, but also many and varied health professionals have been calling up to make appointments to see me at home, as a follow-up to my three-day evaluation at the Parkinson Centre last month. ‘At home’ has a nice Victorian-afternoon-tea ring to it, does it not? However, letting hoardes of white-coated men and women know where I live sounds rather less fun. But useful, I’m sure.

So, now all I have to do is determine the optimal dosage regime for my pills, attend an average of two therapeutic appointments a week for the next several months, and work out the Byzantine regulations governing disability pensions in the UK, Netherlands and Denmark. Plus write a food science text-book, vacuum the floor, tidy my room, etc., etc.

To be honest, I think the main reason I’m feeling more upbeat is that I’m taking a higher dose of L-dopa. As a result, I have more energy, less muscle pain, less stiffness, better focus, etc. Maybe there is a downside to taking a high dose, but just for now I think any price is a price worth paying, I’ll discuss mood issues with my shrink, though, as I am rather handily seeing him (her?) for the first time this afternoon.

Ever more therapy

JON: One highlight of the week was our third visit to the Parkinson’s centre, where our coordinator gave us feedback from our previous two visits. Much advice had of course already been given by the experts, but the coordinator told us that there would be follow-ups with

1 A psychiatrist and a psychologist who work together and who would help to ‘coach’ me (whatever that means!) in the process of developing a life after work but with Parkinson’s.

2 An ergo-therapist (that’s an occupation therapist to you and me) who will come to our home and teach me how to cook and tie my shoelaces and other useful things that I’ve learnt at least once already but now need to re-learn in a new step-by-step approach that avoids my big issues with multi-tasking.

3 A physiotherapist – actually, this will be the woman I have been seeing for the last year or so, but the centre will suggest various adjustments to the therapy and will also encourage home visits as that can apparently be much more useful.

I am amazed at the lengths to which these people will go to help me. I rather doubt that an NHS ergo- or physiotherapist would make many home visits. Nor, I am reliably informed, should I expect this ultra-high level of service if/when we move to Denmark (though I can certainly expect better than the threadbare NHS). So I am ‘enjoying’ it while it lasts and getting as much benefit as I possibly can.

The other highlight of the week was an invasion by Marie’s nephews (10-year-old twin boys) and Marie’s sister without whom the visit would have brought us to our knees. I have a only distant memory of what 10-year-old boys are like (since my son is now 28-ish). The boys were in fact very well behaved, but the energy they expended was just phenomenal. I spent much of my time hiding in the bedroom with my radio (internet radio being a great boon to the expat community), mainly emerging for meals and the occasional sedentary game, all of which I duly lost as any good uncle should (though I managed to do so without actually trying).