Balancing acts

MARIE: Did I mention that I’ve been going to see a psychologist? There was a small problem with anger management…

I think Jon and I did pretty well with the PD diagnosis, we ‘passed the test’ and found a reasonable way to live it. The dementia is harder. The way the symptoms started, baffling, sporadic, unconnected – well, I just took that as Jon being difficult and negative and unengaged. So I’d get upset. And because I was terrified that there was no improvement in sight, my upset had to be forceful enough to keep the lid on a maelstrom of fear and loneliness. My anger was explosive, volcanic, uncontrollable – and deeply unpleasant for both of us.

The dementia diagnosis made sense of much that had been confusing and frustrating, and made it clear that my anger needed to be dealt with ASAP. It’s unpleasant, though possibly understandable, to shriek like a banshee at your husband for yet again having forgotten what he’s just promised to do, but it’s horrendous and destructive to savage a man with dementia for his poor memory.

Something had to be done. Just getting the referral and making the appointment was a relief as we both acknowledged that there was something pathological both in the object of my anger and in the expression of it.

It is amazing how few appointments it has taken to restore equilibrium. I’ve been six times and expect the seventh to be my last. I’ve learnt to identify the ‘dysfunctional thoughts’ that trigger my anger, to take a step back and observe them in the cooler light of common sense. I’ve learnt that I don’t have to hide my fear and sadness behind a mask of anger, but can open up to those close to me without breaking (them or me). And I’ve learnt to carve out a space for myself away from all thoughts of disease (this revolves around my garden and a beekeeping course – whatever floats my broccoli).

I have also read and re-read an excellent and very practical book of advice on caring for dementia in a way that keeps both parties happy and content – I highly recommend Contented Dementia by Oliver James. It’s focus is on Alzheimer’s, but the advice also applies to other dementias.

Calm has again descended on our household. Not some otherworldly, anesthesized calm, but a normal, everyday calm that enables me to be mildly miffed at Jon in a perfectly normal, unthreatening way and that leaves him feeling, I suspect, slightly put-upon rather than cowering in a corner.

Not everyone with PD gets dementia, though it does happen to many in the late stages of disease – we were just particularly unfortunate that Jon got it so early on. At least now we finally seem to be finding the same kind of balance with dementia that we managed to find with Parkinson’s. Not a moment too soon.

Numbers

JON: This week it was my birthday – for the 59th time! The only bright spark is that at least it’s not 69. In fact, a recent article in the New Scientist about the popularity of various numbers said 42 was most people’s favourite number (presumably courtesy of The Hitchhiker’s Guide to the Galaxy where ‘42’ features as the answer to the meaning of life, the universe and everything). ‘69’ came second favourite, probably because the rude connotations appeal to small boys of all ages and genders.

I’ve been working for days on turning my 59th birthday into a good rude joke involving the number 69, but I’m stuck. In fact, I used to enjoy swapping jokes and banter with people, and I think I was funny (at least to highly intelligent native speakers of English, and occasionally to Marie). However, I think I have become unable to tell jokes properly. I find myself delivering the punch line first, miss out essential parts of the joke, rarely manage quick banter – and I just don’t think I’m that funny anymore.

Why? I suspect two factors: progression of the PDD, and / or the lack of an audience. The people I hang with at the Oak House may be incredibly funny, but how would I know without speaking Danish? But I doubt it, they generally seem like a fairly dull bunch. Places like this are known as ‘Gods waiting rooms’, i.e. places where we go and wait to die (another potential joke lurks in a mispronouncing ‘to-die’ to sound like ‘today’ – ho ho ho, aren’t I the witty one?).

I think I’m beginning to settle in at the Oak House, though. I’ve formed a plan together with one of the regulars to produce some artwork to decorate a large wall in the kitchen with a new molten wax technique (well, new to me, anyway). I think I’ll enjoy that.

I have also been made a guide to the Oak House for a potential new ‘inmate’. As I may have mentioned, Marie attends every meeting relating to Parkinson’s or dementia in a 100 km radius. At one, she met a nice couple from the next village. The wife is ‘normal’, the husband has early-onset dementia. Somehow I’ve agreed baby-sit at his first visit to the Oak House, show him around and make him feel comfortable. A bonus is that he has lived for many years in Britain so is potentially someone easy for me to talk to.

He was inducted during our pre-Easter celebrations, a day starting with enormous pastries to celebrate my birthday, followed by an excessive lunch with beer and schnaps. At home waited the promise of a birthday dinner consisting of a HUGE steak, a small amount of salad, and as much apple crumble and custard as I could possibly eat.

I’m told many Parkies go off their food because all the drugs can give you nausea, but that has happily not happened to me (yet?). But I do regularly increase my intake of red meat by viciously biting my cheeks. PD has got to be at fault there somehow, though I’m not at all sure if anything can be done about it.