Right now there’s a big campaign in the UK media on the subject of dementia. Ads on TV, radio and even Facebook advise us to talk to our elderly relative who is suffering from forgetfulness and general memory problems. In the ads, the person trots along to the doctor and gets treatment at once. If only real life were like that!
My father developed dementia very slowly and we were in denial for years. He’d suffered from anxiety for so long and been on such a variety of medication that we put down his memory problems to that. Other changes in behaviour, such as a surge of unusual generosity – impulse-buying us gifts, for example – were put down to the same cause. At no time did we even consider dementia. Only in 2007, after a fall down the stairs caused by a bodily jerk problem he’d also had for years did we really start to wonder. Not so much because he’d fallen but because of his uncertainty about any changes we might make while he was bedridden. He didn’t want us to change channels on a TV because he’d have to change it back, and he’d always been an electronics wizard. Shortly after this he started struggling to do up his own coat buttons and my mother had to help him with them. When I visited, I automatically shifted my topics of conversation from intellectual ones to nostalgia in order to continue to connect with him. It was a sad process as I’d always relied on him for those intense discussions. Still, the topic of dementia never entered our thoughts in any serious way. It was the medication, or just old age. He wasn’t putting his watch in the fridge or going outside in his nightclothes. He hadn’t forgotten who we were.
All this time he was visiting the doctor on a regular basis, but none of these problems surfaced in the consultations. My mother went with him but she was forbidden to mention most things. Even though she had reached the point that he could no longer remember how to do any electrical work, that he couldn’t cook a simple meal properly – he had always been good at cooking – and that she was afraid to leave him alone in the house for any length of time, she still wanted to believe that he couldn’t remember things because he ‘didn’t listen’ and she became inordinately frustrated at his apparent instransigence.
This is really the point at which the adverts are aimed, I suspect. When you know something is wrong but don’t want to admit it. Tell your relative you’re concerned, say the ads, and they will go to the doctor: problem solved (for a while). What the ads don’t consider is that even before dementia hits one can have a difficult relative. My father was not inclined to consult doctors. He went when forced. What’s more, if he’d become aware of having dementia he would not have wished to carry on. My mother had had to contend with constant talk of suicide for decades, and for him, to know he was fading mentally would have been torment. He was fiercely independent and would never give in to please my mother or any of us. Pleading would result in hostility and a digging in of heels.
In these circumstances, my mother couldn’t bring herself to ‘betray’ my father by telling the doctor behind his back, which would have been the only way. Even then, though, persuading my father to participate in tests would have been a non-starter. He wanted nothing to do with hospitals or any of that sort of thing. In the end our hand was forced by my mother having a stroke, almost certainly exacerbated by the stress of my father’s decline. While she was in hospital my father’s mental status deteriorated sharply and I had to contact the doctor. Instead of helping, though, the doctor’s visit and that of a mental health nurse later sent my father into total paranoia. I had to ask the mental health nurse not to return. She had hassled him about his medication, which he wasn’t taking properly, and he became hysterical about it. I had never seen him like that before and thankfully never did again.
By that time my father was not only having hallucinations – spraying the walls for invisible insects and seeing my mother in the house even though she was still in hospital – but he was cutting all the leads and plugs off household gadgets, destroying most of the plants in the garden, believing he was in the wrong house and had to get back to the right one, going out of the house in his dressing gown or even pyjamas, wandering at night, and becoming tearful almost every day about things he could no longer understand and relationships that he could no longer make sense of. He was convinced ‘they’ were going to take the house away from him and threatened to barricade himself in, but on another day he would say he’d hoped I’d come to take him away on the train to one of his childhood haunts. The world had become a confusing and frightening place to him, and he seemed to be in an incomprehensible fog of torment. Yet he never forgot who we were – my sister and I – and although he had formed the view that my mother was an imposter, he didn’t forget who she was either.
My father never did have the hospital tests or Alzheimer’s medication, and he died at home, peacefully, on 20th December 2009.