A good moan

Hello, it’s Marie again. We promised in one of the early blogs to give a bit of background to what came before the blog started. Since this has been a praticularly horrid week, we thought I should take the opportunity to give you a whistle-stop tour of our private Hades, taking it up to date with the latest set-back.

When Jon first got ill, neither one of us had any idea whatsoever what we were going to be faced with. I suppose that’s obvious, really. But we thought, you know, we can deal with this – one step at a time, us together against whatever comes at us, there’s nothing we cannot cope with. We had no idea. It has been so much worse than we imagined, every single bloody step of the way dogged not just by the “normal” disease but by special difficulties.

First there was the 18 months spent trying to get a diagnosis – Jon medicated increasingly aggressively for back pain when in fact the problem was Parkinson’s. Only no-one could see that, because the PD symptoms were believed to be side effects of the pain medication. Which wasn’t even working. Jon was taking higher and higher doses of morphine, and getting more and more difficult to reach with reason and affection. The pills were his only hope of relief and thus his only friends, while I who tried to limit his morphine intake became the enemy, to be at times physically fought off. I knew he was taking a lot of drugs, but I didn’t know how much morphine is too much, so was shocked to be told that towards the end, he was taking as much as is normally given to patients with terminal cancer. My sister, who is a nurse, was horrified to see Jon – still in agony, but now also high as a kite. A deeply unpleasant week of fast weaning off the drugs followed (the less said the better). That was the worst of it, but the period before Jon received the diagnosis of Parkinson’s also featured a failed back pain treatment involving a spinal injection of steroids which managed to make Jon even worse, and a thoughtless colleague of our then neurologist who was happy to inform Jon over the phone one Friday afternoon that his MRI scans showed clear signs of a stroke (particularly unwelcome news as it was multiple strokes that killed Jon’s mother).

When at last Jon got the diagnosis of PD, it felt like a relief, almost like good news compared to what we had feared. Hurra, a diagnosis, a treatment plan, a new set of drugs, clarity and a way forward. At first the PD drugs (and new pain meds) worked well, and the many books we read about the disease led us to believe that Jon would have years and years of excellent quality of life with the help of these lovely pills.

This state of calm did not last, though. Along came another, wholly unexpected, set of adversities when Jon’s employers refused point blank to accept that he was now well enough to work as normal again – despite the fact that there he was in office and lab every day, beavering away exactly as before. At first we thought this was merely some kind of bureacratic mix-up, but it soon became clear that Jon was trapped in a special Kafkaesque hell. First the employers wanted their own doctor’s opinion, which was that Jon was fine. But for some reason that wasn’t good enough for the personnel department, and the doctor had to meet with Jon and his immediate superior to discuss the situation. Again the conclusion was that Jon was fine, and again the employers refused to accept this. Jon was informed that the doctor’s opinion would be of no use unless the doctor had a copy of Jon’s job description – and since no such description had been produced before, the employers drew up a document that contained such obviously unattainable targets that it seemed designed specifically to further a firing squad. Trapped between a rock and a hard place – accept the job description and get fired for failing targets, or reject the job description and get fired for long-term illness – Jon was very much not a happy bunny during this time. In the end, with the help of legal advice, a medical arbitration service and a wife keen to fight a winnable battle, Jon was received back at work after seven months of stressful misery. But let’s be honest: not only did he so not need to have it constantly rubbed in that he was considered damaged goods, the very fact of the fight also soured his former love of his work – and the long drawn-out battle just simply exhausted his mental reserves.

We could both have done with a bit of a break after all that, but no. While the work problems were going on, Jon started sleeping less and less well, with predictably tired days to follow. And after a pretty long period of attempting to ignore the elephant in the corner, we admitted to each other that we were seriously concerned about his cognitive abilities – in a word, the big D of dementia. Jon’s dad had Alzheimer’s, and PD patients have a vastly increased risk of Alzheimer’s. Jon’s physical and mental deterioration also seemed to be much too fast to fit with our reading on Parkinson’s, so we started to worry that he might have one of the so-called PD+ conditions (which includes special kinds of dementia and the delightfully-named multiple system atrophy). So now he’s off work again. The neurologist makes encouraging noises to the effect that all Jon’s current problems could be the effect of yet another adverse drug reaction. However, it takes 6-8 weeks to change drug regimes (slowly decreasing one type of drug and increasing another) – and I don’t know about Jon, but I frankly don’t see as much progress as I had hoped for.

There has been quite a lot said in earlier posts about Jon’s sleep disorder. Yes, (some of) the individual stories about what he gets up to at night can be quite amusing, but in the long run it is so immensely draining – mostly for Jon, of course, but also for me – never to have a normal, unbroken night, and never to know what chaos you will have to clear up in the morning. I suppose in some ways it’s quite like having a baby, and people our age don’t generally have the energy for babies. We had both invested a lot of hope in this sleep registration Jon was going for a few days ago, where he was to be extensively wired up with a range of sensors that could measure in detail his every breath and jerk and brain wave throughout one night in hospital. All went well until Jon actually feel asleep – whereupon he acted out yet another dream and ripped off half his sensors. Night nurses aren’t trained to re-attach these sensors, so he got sent home with just 10 minutes of sleep recorded. It may seem a small thing, but it is yet another set-back, yet another disappointment, yet another delay in finding the true cause and (hopefully) remedy.

And lastly, as I said a few weeks ago, we are ceasing to be a team. There is less a feeling of us against them – or rather, against it – and more of a feeling of him against me and me against him. He resents being ill, resents what the illness does to him, and resents being dependent and needing my help – and so in one easy step he transfers his resentment to me. Likewise, I am angry about what PD is doing to my husband, my marriage and our plans for the future, and I guess I transfer some of that anger on to him. The conflict that has really brought us – or is it just me? – down is that, presumably as part of his campaign of denial, Jon refuses point blank to take any of the advice given by the various experts and therapists who treat him. If I push and plead, he only gets more adamant. If I don’t push or plead, well, I guess then he’s fairly content. But I find it immensely difficult to keep my peace since I can see so much sense in the advice Jon has been given, and I can see how not taking that advice is damaging both his and my quality of life. But so is pushing and pleading, so in some desperation I am now trying my hardest to disengage and concentrate instead on all the practical tasks. Feeling relegated to the role of nurse-maid, providing about as much affection as can be expected of the average nurse or maid.

This week I have ordered a book about how to survive life as a caregiver and have made an appointment for the pair of us with a psychologist recommended by a good friend. Fortunately, rather than the long wait I was expeting, the psychologist can see us in just two weeks’ time. Good. We need all the help we can get.