Monday 13 May 2013

Paranoia - And The Other Fear That Dare Not Speak Its Name

“I’m very angry with you!” The door burst open, silhouetting mum in the doorway in her nightie.  It was about 2.00am and I’d been drifting off to sleep.  But she’d got a bee in her bonnet, and she wasn’t going to let it rest. “You’re getting that man in, aren’t you? Well, you’ve got no business!” It was true I’d booked a plumber to service the boiler before winter. A couple of years earlier, we’d been caught in freezing weather with no heating or hot water, and I had wanted to avoid that happening again. 

I knew she wouldn’t be able to cope with such an emergency if I weren’t there (she couldn’t tolerate workmen in the house), so I’d set aside a few days to supervise maintenance before we went on holiday. It was to be her 80th birthday and I’d rented a house for a week on the Isle of Anglesey, a special place for us where we had family connections and had enjoyed happy days in the past. I had hoped she’d be looking forward to it, but this white anger about the plumber blocked out everything.

While she might have had a point that I’d “taken it upon myself” to assume charge in her house, I’d come to do this over the years, in order to head off the crises she got into, if left to her own devices. This meant many tedious and time-consuming jobs that were certainly no fun for me - I took the responsibility, to keep her safe and well. 

But mum couldn’t see anything positive in it; to her mind, there could only be one motive – I was doing up the house to sell it and put her in a home.  At the time (2006), there was no question of this.  But she was utterly enraged at the belief, and berated me at great length as I lay defenceless in my bed, culminating in the vituperative declaration that she was not going anywhere with me: “Heaven help me, if I have to rely on you!”

It was a theme she returned to often in subsequent years, latterly fighting my attempts to carry out such innocent domestic tasks as vacuuming, changing her bed-linen, or putting out the rubbish, on the same deluded grounds. Installation of a new cooker and washing machine (to replace broken down old models) was viewed as confirmation of my evil intent, and even delivery of internet groceries provoked hours of aggressively suspicious interrogation.

There were delusions and resentments directed at others too. Friends, she believed, had snubbed her in town, or were avoiding her on the phone; they’d said nasty things to her. She became convinced that a beloved uncle, long dead, had stolen precious things from her mother’s house, when he kindly cleared it out for her more than thirty years ago when her parents died. Numerous times, she called the next door neighbours, adamant that the gardener - with whom she had always been on cordial terms - was “hiding in the house”; they would search it from top to bottom to humour her, and even then she would not be satisfied. “Well, of course, he’s gone now!”, she would say. (The most extreme example of this is detailed in my post, The Crisis We All Dread.)

And she became extremely possessive of me. She was always inclined to be clingy (we were both only children, and she’d had a very close relationship with her own mother); but as time went on, she couldn’t accept any notion of my developing relationships or emotional bonds with others. Whenever I was with her, I couldn’t speak to friends on the phone or even check emails openly, because she’d demand to know who I was talking to, on the assumption that I was saying bad things about her. It was impossible to reason with her about any of this. 

Yet between these episodes she was her real self: a gentle, warm, kind, loving, generous person, with a lively sense of humour, who would never have harmed anyone – least of all me.

Last week, the Independent published the heart-breaking story of a man with vascular dementia (also my mum’s dominant strain), who killed his wife of more than fifty years, while under the delusion that she was cheating on him:

Such extreme outcomes are thankfully rare. But the paranoid beliefs that provoke them are quite common, although little discussed – they don’t make comfortable reading or positive images.  (See also Dementia-Related Violence a Growing Concern by Paul Bibby in the Sydney Morning Herald.)

Like this poor man’s two daughters, I can understand with hindsight that my mum’s behaviour wasn’t her fault or her true intent; it was the illness talking. And I can now see that all those irrational outbursts were driven by fear. 

A couple of weeks ago, a researcher posed the question on Twitter, “what does dementia feel like?”  From my observations of my mum, I replied that it seems to me a constant anxiety or dread without focus (sometimes finding illusory focus). The person is aware of feelings, rather than thoughts; and with a declining (or absent) context of memory to make sense of these feelings, the mind supplies an alternative logic to explain them. 

For instance, my mum has also had times when she’s been convinced that her parents were splitting up, because her father had been having an affair, or that my father was walking out on us. A very similar scenario to that described in the news story above. I know these beliefs to be nonsense – all the parties are long dead and never behaved in anything like this manner during their lifetimes. But my mum was frightened by their absence; and because she couldn’t remember how or when they died, or even that they were dead at all, her mind came up with another reason: they had run away without saying goodbye, because they had done something shameful. Why else would they leave her alone?

In the dementia unit where she now lives, there are other residents with similar delusions. Some believe that people are trying to kill them, that the food is poisoned, or their property has been stolen. One lady will recount in conversational tones the most lurid and graphic tales of having been sentenced to death on a trumped-up charge or of being a spy, which is why the staff “have it in” for her. Another goes wild if anyone tries to sit in a particular chair, because she believes they’re trying to displace her or the “husband” she wants to sit by her side. 

While there may be some benign delusions, the negative seem far more prevalent, concerning persecution, theft, punishment, or betrayal. Why?  Because they are provoked by fear: fear of loss, of insecurity, of not knowing who you are, where you are, or why. How do most of us answer such questions? From unthinking memory. But enter into the feelings of a person with dementia, whose memories are fading by the day, and you begin to see where paranoia is born. People who experience such fear need sympathy and understanding, not stigma and condemnation.

But, equally, those close to them should be allowed to admit that they too are often afraid; afraid of what is happening to someone they love – and sometimes afraid of that very person. When I was in my own flat, mum would repeatedly wake me by phone with disturbing accusations, of which she would later have no recall; and when I was staying with her, she would often burst in on me during the night when I was barely awake, in the grip of some intense obsession, or, simply having forgotten I was there, intent on looking through my bedroom window to check for intruders. 

I knew that her frailty made physical attack unlikely. But there were times when the unpredictability of her moods and irrational antagonism unnerved me. And yes, there were occasions, particularly at night, when I was scared to be alone with her – and, no doubt, when she was scared to be alone with me. In those awful moments when her memory played cruel tricks, we were not the loving mother and daughter of reality, but two strangers, locked in together.

Mum sat in black silence for that whole day while the plumber did his work. She maintained this deepest of sulks for the rest of the week. I thought I would have to cancel the longed-for holiday. But the day of her birthday dawned, bright and sunny in late September. Miraculously, she allowed me to manoeuvre her into the car, and we enjoyed a week of glorious autumn weather by the Menai Straits. 

One night, over a restaurant meal, she said what a lovely time we’d had.  But you didn’t want to come, I said; you gave me hell about it. “No!”, she said.  “Why would I do that? I think you must be mistaken.” 

I could no longer hold back the tears. Mum looked on perturbed – and totally mystified by my distress.

We did have a lovely time.  It was our last holiday together.  

Mum & me, Beaumaris Castle, 1976

Back in Beaumaris for mum's 80th, 2006

1 comment:

  1. Thank you for sharing this. My mum has paranoias, fixating on various family members at different times. Though my Dad gets the brunt. Much of what you say rings true, and I swing from understanding and sympathy for her fears, to my fears of the time I will be on the receiving end of her rage. She was diagnosed about 8 years ago, as my sister and I struggled to understand her lack of interest in us and apathy. My mum is only 67 and it feels like a very long journey ahead. But as you say, I try to enjoy moment to moment when its her and not the illness, enjoy the repeated hugs goodbye, and her laughter and great sense of humour.