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.