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.

Whazzup?

JON & MARIE: It has been absurdly long, a full two months, since we lasted posted anything to the blog. So long that several kind and concerned readers have asked us if there’s something (extra) wrong. Nostra culpa. Fortunately, the only wrong thing has been wrong priorities which put the blog too low on our to-do list. First there was the long visit from children and grandchildren from England, then Marie was overwhelmed by deadlines at work while Jon was exhausted from his daily (!) five hours (!!) of Danish language lessons, and lastly we’ve been traveling a bit.

Obviously, all sorts of things have happened in the meantime, far too many to go over in one post. Here are the highlights, starting with a kind and offensive question.

Towards the end of their week-long visit, we took the grandchildren on a rainy-day excursion to the small national aquarium. By this time, Jon’s energy reserves had been whittled away by constant (welcome) company and daily activities way beyond his usual routine, so he was not at his best. Instead of traipsing round marveling at the sea horses and petting the star fish, he went and sat in a quiet, dark corner. And yes, he looked tired and drawn. But did a helpful 'aquarian' really have to come up and discretely ask if Jon needed to borrow a wheelchair? The question flustered both of us. Is it really so noticeable when Jon is off? Indeed, how great is the difference between how we think we seem and how we actually appear to others? Jon decided to turn down the offer, and an hour or two later was feeling much better – and we told the kids right away, as a sort of exorcism. Let’s hope it’s a good long time before anyone asks that particular question again.

A cautionary tale concerns a drugs muddle directly related to the enormous amount of time it has taken to get Jon accepted into the local health care system. We left Holland with a small suitcase full of drugs, enough to last Jon through the spring, in the certain expectation that he would see a Danish neurologist long before reaching the bottom of his stash. How wrong we were. It is only next week, a full seven months since his last appointment in Holland, that Jon finally gets to see a Danish neurologist. The stash is almost gone, and at the bottom of it were the last L-dopa tablets Jon was prescribed in Holland – significantly, from a repeat prescription made out by a faceless colleague of his regular GP. In Holland, as in many other countries, they aim to give patients the cheapest type of medication, so we didn’t really react when Jon was given a generic tablet instead of his usual brand-name pills. It turns out, though, that these were not quick-release tablets as they should have been. It took the best (worst) part of a week of deterioration and despair (quiet on Jon’s part, loud on Marie’s) before we realized what was wrong. We now know for an indisputable fact that it is hugely important that Jon’s tablets are quick-release, and we know always to double-check what the pharmacist gives us.

An uplifting tale, sort of, is the story of how we changed a wheel on the car. It is unnecessary to tell you exactly what manner of idiocy caused us to find ourselves with a flat in the first place. What matters is that the incident clearly illustrated the frustrations of living with PD: Jon wanted to do it and knew how, but was physically unable, while Marie definitely didn’t want to do it, didn’t know how, but could be talked through the process. We are generally extremely, debilitatingly incapable of performing any DIY task together, but for once – perhaps for the first and last time ever – we performed an exemplary piece of teamwork. Nice to know it’s possible, though we’ll try not to make a habit of it.

On the upside, Marie has just finished work on her latest paid project. There is a good chance that more work will come her way from the same customer later, but then as shorter projects and not so deadline driven. Finance-anxiety may set in at some point, but for now we both enjoy the extra time – to be spent together, and on volunteer work for the local Parkinson’s association, and on/in our increasingly wonderful garden.

Seize the day

A few days ago Marie and I went up in hot air balloon for our wedding anniversary. That’s 14 years together (7 before and 7 after getting married), and amazingly neither one of us is fed up yet. Anyway, I’d worried for weeks that I wouldn’t be able to get into the basket, and my fears were not allayed when I saw it: sides about chest high, with only three small footholds going up. As it happened, getting in was okay since everyone scrambled madly together, it was getting out at the end that proved the problem as that was done carefully one person at a time to avoid the thing taking off again. I know probably few people notice it, but when you’re stiff and feeble and can’t swing your bloody leg high enough to get it over the top, you just feel that the whole world is looking at you and wondering what your problem is. But it was worth it, I have to admit. The air was clear and there was a good wind so we got to go quite a long way, and before we landed the pilot (as they insisted on calling him) did some trick flying and dipped the bottom of the basket in the middle of a large lake!

Which leads me to revisit the carbon footprint issue: Marie objects to me leaving my PC on stand by when I’m not in the room, thinks it is quite unnecessary to flush unless there is ‘matter’ in the bowl and would prefer me to turn the lights out when I blink, but is happy to book a completely frivolous balloon flight and tickets for a round-trip through much of Southeast Asia. There seems to be a logical disconnect there, but she argues the plan is to do things (what ever they might be) sooner rather than later, before the disease potentially stops me from going along. Not a bad plan, but it does seem to ignore the need for sitting about and staring at the wall – one of my favourite activities (also before PD), and there do happen to be several walls around the house that need close examination before I’m done.

It is a question, I guess, of where quality of life comes from. Last week I mentioned good food, which reminds me of my stepfather – my mother consumed two husbands, and I use the term 'consumed' deliberately – who always said that as long as he could enjoy a cup of tea, life was worth living. I, on the other hand, lost my sense of smell many years ago, so to me tea is just a warm, sweet drink. In fact, there’s little need for a tea bag at all. Not really worth hanging around in this mortal coil for. I would have pork pie over tea any day if only Marie would let me, the evil harridan.

BTW, I’m dropping the sleeping pills because the side effects are just too miserable. These may become a source of future jokes (‘remember back when I could walk – oh, the things I got up to’), but right now I’m not looking forward to the return of sleepless nights. Ho hum. Is there honey left for tea?