Dare I say...

…that I’m away having the most amazing time? Yes, I dare – because this blog is worthless if we’re not brave about the truth. So: I’m having a great time in Helsinki attending an international conference for carer organisations and researchers on caring. I’m meeting people, sharing ideas, building relationships, and learning loads about approaches to caring elsewhere.


It all came about because we formed an association for carers in Denmark (Carers Denmark) on Saturday. On Sunday, I dropped out of full-time caring – as you may have guessed, we applied and are now waiting for a nursing home place for Jon, but I had to admit that the waiting time was taking its toll. So now Jon’s oldest and closest friend has moved into our house and taken over as main carer until we get an offer of a nursing home place, and on Tuesday I was able fly off to join this brilliant conference.


I feel kind of guilty about feeling so good – but not guilty enough to put much of a dent in the good. It’s been almost 8 years of caring, and although there have been ups and downs, I think I can honestly say that there has not been a single day that was just easy-peasy. Don’t get me wrong, I don’t regret for one moment our decision a few years back that I should drop out of work and stay home to look after Jon. Although not great from a financial perspective, it felt absolutely right. It allowed me to spend time with Jon while he still enjoyed it, and it allowed me to get into the world of volunteering, which has brought me new friends and intense interests. But now Jon enjoys my company less, the care tasks have become more onerous, and I am just simply worn out by the length of time this has been going on.

It’s not that Jon is getting worse (well, he is, but slowly), it’s more that I have burned out. The best way I can explain the feeling is to compare it to leaving the house in the morning in a new pair of shoes that are just a tiny bit too tight. At first you walk along just fine, but after a bit the shoes start to bother you. You go on, perhaps limping a bit, then you develop some nasty blisters, and sooner or later you feel you just can’t take another step in those shoes. The shoes didn’t change, but your ability to wear them did. That’s how I feel about caring – and being burned out is not just bad for me, it also means that I’m not able to care with the calm kindness that I think Jon deserves.

So Jon’s wonderful, generous friend has stepped in and taken over. That is such a fantastic gift for both of us. Jon is enjoying some “man time” and loves talking about the old days – school, music, girlfriends, whatever – and I get to start rebuilding a life for myself in the certain knowledge that Jon is being cared for with competence and friendship. I hope our friend understands how much really this means to us!

The nursing home we have applied for is a lovely place with big bedsitting rooms, good common facilities, near the woods and the sea. Jon stayed there for a few days of respite care this spring and quite liked it – his main complaint was that they didn’t provide WiFi, and that can easily be remedied if he moves in. I truly believe there is a chance of a pretty decent life with him there and me visiting as often as I can for a little strolls and cream cake excursions. I’m feeling pretty positive, and I don’t think it’s entirely down to my tablets or the joys of Helsinki.

I’ll tell you more about “my” new carer association next time. It’s “mine” because I took the first initiative and was rewarded (or possibly punished) by being elected the first chairperson. There’s a to-do list as long as your arm, but there’s also a great team behind the idea, with a huge amount of energy, enthusiasm and experience. I’m sure we’ll be going places.

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.

Time and its uses

JON:
Chronically sick people have a habit of saying that there are good days and bad days. Well, I’m having a bad month. I have upper and lower back pain, my knees are stiffening up, my mood is – well, you can see that from what I’ve written: my mood is subterranean. I just want a day off, one day free from aches and pains, one day when my brain works, when I can sit down comfortably and with ease. But it seems that is not going to happen, ever.
I suppose it comes as no surprise that pain is, well, it’s a pain. It’s nowhere near the severity it was prior to getting diagnosed, and my painkillers are fairly effective, but I do find myself living from pill to pill. I feel crap for an hour before pill time as the previous dose wears off, and for an hour after taking the pills while I wait for them to take effect. In between, I’m a bit spaced out – literally at the moment because I’m reading SPACE, a good thick novel about the space race.
And then there is the feeling of being pathetic. Last year Marie wrote a book, this year she has organized its publication, book launch, promotion etc. Also kept her business afloat, worked for her freelance clients, washed the floors, cooked, cleaned, etc. And what have I achieved this year? Bugger all, is what. A couple of blogs (though written mainly by Marie) and depressingly little else. How much of this is due to me being a lazy sod, and how much can I lay at the feet of the Parkinson’s gods (intentionally very small g). Well, depression and apathy are common PD symptoms, while being a lazy sod is down to my defective chromosome (laziness comes with the genitals). But I didn’t use to be lazy. OK, I never did much around the house, but I did do “stuff”, and I don’t like doing “nothing” instead.
I read a blog recently (PD and ME) where the blogger wrote: “I don’t want to play any more, it’s getting boring, someone hurry up and find a cure”. I couldn’t agree more.

MARIE:
If you want something done, ask a busy person, they say. I have become a busy person, and so am getting more and more done each day. Work is going well in the sense of being demanding of my time and attention (which is how I like it), more and more of the housework falls on me, and I also insist on continuing with the things I enjoy – my gardening in particular.
It’s as if Jon and I are on two opposite trajectories of time, his getting ever slower and mine ever faster. Which at times makes him feel feeble and pathetic, and makes me feel rushed and hard-done-by. I’m not sure that there is a solution to that, beyond just getting used to it. And making sure to take the time (on my part) and make the effort (on Jon’s part) to meet in the middle often and with affection.
What I find hard to bear is when he is down in the dumps, as he has been recently. I so want, in my practical, annoying, bustling-around-and-sorting-out way to do something to make it better. Make a hot drink, massage a shoulder, fetch a plaster. Sadly, Parkinson’s does not allow for quick and easy fixes, just one long process of acceptance – which, I suppose, is really quite like life itself.