At the end of September 2018 my mum was diagnosed with a rare psychological condition called Disassociative Fugue State. This condition means that the sufferer can ‘forget’ who they are, where they are or the identity of any persons around them. It can also lead to wandering off and loss of speech.
It’s cause is apparently rooted in stressful life events, events so stressful that the mind in effect takes over and protects the sufferer. It’s a very reptilian existence for Mum. She is literally operating on a fight or flight basis and nothing more, and her speech can go completely off line: she’s had a number of days with no speech. It’s not that she won’t talk, she can’t.
Since her diagnosis there have been a number of ‘episodes’, a number of hospital admissions, and a number of tests. A number of arguments with myself and a countless number of doctors. She has also been reported as a missing person on at least three occasions with the police involved in searching for her as they deemed her high risk.
The whole world can sometimes frighten my Mum and she faces challenges each day in activities you and I take for granted. We are slowly identifying triggers to these states, so far we have sounds, particularly high pitched beeping sounds like a truck reversing and sirens. Fireworks are also hugely challenging. Did you ever notice how loudly tills beep in the supermarket? Did you ever think that your phone beeping or ringing could impact people around you significantly, like my Mum?
Smells, not as prevalent as sounds but sometimes a smell bothers her so much it can cause these wandering episodes. One such smell is coffee, which is a shame as personally I’m addicted to the stuff!
Busy places, especially if enclosed like a supermarket. People dashing about doing their business, babies crying, children screaming, personal contact with strangers, loud announcers and those awful self serve tills with the computer generated voice. Airports and hospitals are particularly bad.
We decided to learn Makaton as when Mum goes into a disassociation she loses speech, which she finds highly frustrating thus adding to her stress. She knew a bit of Makaton previously as she worked for many years as a carer to special needs people, with a particular expertise in Autism.
I’m absolutely stunned with the results. We had an excellent and understanding tutor. I emailed Sonia prior to booking the course and half expected her to say Mum wasn’t a suitable candidate for a course. I asked some odd questions about if any videos would be played and how big the class would be etc. The course was very short of people with only three of us and I know that realistically there was a chance Sonia would cancel, however she stuck with us and we completed the first stages in two day long sessions.
Since then Mum has had a few episodes, however none have thankfully yet been serious enough to involve the police again. She used Makaton for the first time when she was distressed and with her sister. She started to sign and her sister filmed it and sent it to me and I was able to tell her that Mum was saying she wanted to go home.
Another time Mum has had an ambulance called for her and she had no speech. We got onto a video call together and I was able to help Mum through Makaton to say where her pain was, where her medication was kept, what she had been eating and drinking, and that she’s slept well.
The most recent success was following a call from my aunt. She told me mum was having a disassociative episode and she was struggling to stop her running off. My aunt held the phone up as we carried out a video call. Mum didn’t recognise me, as always happens, however as soon as I started signing she almost did a double take and stared intently at the phone. I ran through some basic words we had learnt and Mum started to join in. She calmed down quite a bit and I was able to tell her who she was, where she was and who the people around her were, and reassure her she was safe. Slowly but surely she started to come back and then her speech returned. Sadly a buzzer went off in the room which set her off again but again Makaton saved the day.
I truly believe that Makaton has done more for Mum so far than any doctor or tablet has been able to achieve for many months. It acts as a brilliant grounding tool and seems to focus her mind somewhat and drags her back into the here and now.
We still have a long road ahead and we do feel alone with it sometimes. We have good family support but as a family we are on our own with it. There’s very little information out there as it apparently only affects 0.2% of the population. Public services are so overstretched that we have six months on average between appointments with a specialist, where for an hour we tell him what’s happened and he renews the prescription and sends us away again.
Mum has no memories at all of these episodes. She literally will snap out of it and suddenly say something clearly and articulately and will realise, I guess by the way we look at her, that something happened and then we have to gently explain it to her, after all she has a right to know what happened. We don’t know why this has happened to Mum and we don’t know if it ever be cured, but we’re working on it.