Friday 15 February 2013

The Crisis We All Dread

The call came at 11.00pm, as I walked home after a rare night out with friends. "Can you ring the police? They’re at your mum’s house...” It was the Aid-Call phone operator. My mother, then 85, had lived alone since my father died when I was a student 23 years earlier – and for at least the last ten, she had increasingly pronounced symptoms of dementia. Clearly, this wasn’t a conversation to have in the street on a mobile phone. I raced the last few yards into my flat, fighting to quash the rising panic. What had happened this time? Was she OK?

It was just after the August Bank Holiday, 2011; I’d been there, but was now back in London 100 miles away. The wonderful next door neighbours, who kept an eye on her in my absence, were on holiday, as were mum’s other friends. Alone and confused, she had gone wandering, the policeman said, and had knocked on the door of a young family whom she had never met before. They had called the police, who traced me via mum’s Aid-Call alarm.

It was not until the end of the week, when I could speak to those neighbours privately, that I Iearned the full story: mum had turned up agitated in the dark of night, sobbing that “a man who used to work for me has broken into my house and is holding my daughter hostage – he’s going to rape her!” As they didn’t know her, they took it at face value - the husband anxiously debating a ‘have-a-go’ attempt to prevent this seemingly imminent attack...

I asked the policeman if he could make mum a cup of tea and a piece of toast while I rang round for help, as she probably wouldn’t have eaten. (I always stocked up the fridge and she assured me she ate, but the rotting food would still be there when I returned). “No problem”, he said. In the background, I could hear mum enthusing, as if high on drugs, about “all these lovely, lovely men!” I don’t know their names, but I’ll always be grateful for their kindness. 

There was no-one available to sit with her that night. I had had a few drinks and couldn’t drive the hundred miles then. I called Social Services’ ‘out-of-hours’ number, assuming it to be intended for such emergencies – but was told they had just two people on duty for the whole town, who could only attend for specific tasks, such as taking someone to the loo or turning them over in bed. My only options, it seemed, were to call an ambulance and get her taken to A&E, or to summon an unknown out-of-hours doctor to refer her as an emergency admission to any care home with a bed. Either would have caused her extreme trauma. I had to risk leaving her unattended overnight.

How could I ever have thought she was safe to be left on her own? Well, I didn’t. I knew she wasn’t capable of taking care of herself. But she had always denied it and vehemently rejected help. In order to protect her, I had had to go behind her back to get a referral to social services and to a psychiatrist who finally diagnosed the condition I had recognised for years.

No matter how much time I or others spent with her, mum was increasingly plagued by dread, phoning me incessantly with lurid delusions and accusations, searching for long-dead relatives, manically packing her bags for the ‘evacuation’ she adamantly believed was coming, and locking herself in against imaginary intruders. She stopped recognising the house, even forgetting which was her own bedroom (where she had slept for 40 years), and became unable to envisage the room on the other side of the door.

And my life had stopped. How can you concentrate on anything other than fire-fighting such random daily crises? How can you keep any sense of yourself, when the very foundations of the life you share with the person closest to you are constantly called into question?

I had started proceedings for a Court of Protection order to formally manage mum’s affairs and had been arranging a care home place. I had felt huge guilt and conflict about doing this without her knowledge or consent - we were each other’s only immediate family, each other’s best friend. I hadn’t been sure I could go through with it. But the events of that terrible night convinced me I had no choice.


  1. Hello Ming Ho
    I am sorry to hear of your mom's condition. I have an aunt who is showing symptoms of dementia and a friend whose mother has just been moved into a care home.
    Did you ever find out what triggered your mom's August Bank Holiday agitation? I ask because my friend's mom seems to be affected by watching TV for example the news and adverts. I have started doing some research into this area of concern.
    Best Wishes
    Richard Horner

  2. Hi, Richard -

    Thanks for commenting. I'm afraid that incident was the culmination of a very long escalation of paranoid symptoms in my mum's case, probably heightened by an increased sense of abandonment that day, as all the friends and neighbours she would normally have called upon (plus her social worker and psychiatrist) were away, due to the Bank Holiday. I had been there only the day before, but of course she couldn't remember and felt she'd been on her own for months.

    (In my opinion, out of hours social services are even more vital than those during office hours. You can't expect people to need emergency help only 9.00am-5.00pm, Monday to Friday; it's harder in the dark of night for those with a confused sense of time and place to orientate themselves, while at weekends and public holidays routines are disturbed and there's often pressure to be "festive", which can add more stress. I'd argue that these are all times when people with dementia or other chronic conditions are *more* likely to come into crisis and need increased service cover.)

    I think you're right about the potential for TV or newspaper items to trigger paranoia or delusion. I'm not sure how much professional research there is on the subject (not enough!), but certainly I have found this to be the case with my mum too.

    A few weeks before the incident I've described above, there was the Anders Breivik massacre in Norway and the death of singer Amy Winehouse in London, within a few days of each other; my mum became obsessed that "someone in the family" had died and she urgently had to go to the funeral or "send something for the headstone"; she even started to read me the "inscription" for the headstone, which was my own phone number! I think this was confabulation triggered by news reports of the funerals of Amy Winehouse and the Norwegian victims.

    Confabulation is a confusion between fact and fiction, in which a person (with some kind of brain damage or disease) believes elements of fantasy to be actual memories; these fantasies are often triggered by real incident or factual stories, which are then extrapolated into a further - false - narrative by the person's own emotional associations.

    (I'm only quoting Wiki here because it's surprisingly hard to find a pithy explanation for the layman from an accredited professional source; if anyone knows of one, please post below!)

    In these instances, it is impossible to reason that the fears or beliefs of the person are unfounded; you can only try to distract them onto some more benign subject. It can be very hard though, as the beliefs are completely real to them.

    I did also notice as time went on that my mum would be very upset by any TV reports of war, violence, or cruelty, and would refuse to listen to anything she *believed* to be in that vein, even if it was not an obviously disturbing subject - e.g. a programme about farm animals, which she was convinced was about slaughter, even if nothing of that nature was shown, just some cows being herded into a field.

    I think there's a lot more to be understood about such paranoias (and I'll be blogging specifically about these symptoms at a later date). However, it's worth noting that only *some* people with dementia will experience anything like this. The symptoms are as diverse as the individuals, and many people live with dementia without ever being troubled by such frightening delusions.

    You may also find this information sheet helpful with other unusual behaviours:

    Thanks again for reading.

  3. Awareness of the early signs of dementia and seeking early treatment may prolong the early stage of this disease.

    Memory Disorder Clinic

  4. Indeed. That's why I'm keen to raise awareness of symptoms other than obvious "memory problems" (e.g. obsessiveness, personality change, irrational behaviour, paranoia, delusion), which may be less easy to recognise as dementia as single incidents or gradual progression over a long period of time.

    There remains the major hurdle of the person's own lack of insight and consequent reluctance to present for diagnosis (despite family concerns), which often by-passes the short window when medical treatment might have any effect. The effectiveness of drug treatment is to date patchy in any case and largely pertinent only to those early stages.

    However, I would say that diagnosis at whatever stage is still worthwhile (indeed vital), in order to access practical, social, and emotional support for both the person with dementia and family/carers.

  5. So many people don't understand this: "And my life had stopped. How can you concentrate on anything other than fire-fighting such random daily crises? How can you keep any sense of yourself, when the very foundations of the life you share with the person closest to you are constantly called into question." They think it is just a bit of memory loss, and a minor inconvenience. And of course, the only answer at ANY STAGE, they give is "is why don't you just PUT her in a home and be done with it?" As if that is only choice and the available choice for everyone. I have an 83 year old mother with Alzheimer's and we have been taking care of her for years. She has been living with me for the past year. It is such a difficult challenge. They have no idea.

  6. Indeed. Thanks, Jeffrey. I'll be talking about this at the Alzheimer's Show in London on 16 May:

    (Links not live from comments, but copy and paste into browser for details).

    There is a pressure for organisations and campaigns to stress a positive (sometimes idealised) message, but I think it's important for unvarnished personal experience to be heard.

    Thanks again for reading and commenting.