MANY OF US ARE AFFECTED BY TRIGGERS
We can have a visual, auditory, olfactory, even kinaesthetic trigger that causes us to remember things we thought that we had forgotten. My trigger for writing this piece was when I was mooching through music to come across ELO’s rendition of ‘Confusion’. It led me to wondering if I will continue to benefit from such triggers if confusion becomes my constant companion! Triggered happy events are welcomed with open arms. For some, a trigger back to times gone by can be a really good way to lessen the angst of present confusion. Hence the beginnings of including old shop or sitting room settings in care homes, especially those supporting people with Alzheimer’s or dementia. Back to times which feel familiar to them. This familiarity not breeding contempt, rather breeding a feeling of calmness and a lessening of confusion.
SO BACK TO THAT CONFUSION –
Confusion is described in the Cambridge online dictionary as a situation in which people do not understand what is happening, what they should do or who someone or something is. A simple description for what can be a very complicated feeling. A feeling which can include, at its worst, being out of control, frightened, panicking.
It can happen suddenly or creep up on us over time. It can last for a short time or become our permanent way of being. It can be caused by an injury, stroke or other medical conditions both physical and mental. It can be as a result of factors in our environment, dehydration, or through drug or substance abuse.
I have worked with many clients who describe their anxiety or high levels of stress as making them feel confused. That hamster wheel going round and round in their mind containing ideas, thoughts, tasks to be done that get muddled up, tied in knots. They struggle with clarity of thinking, rather are caught up in a frustrating feeling of confusion. They struggle to decide which task to do, which train of thought to follow. As they don’t know what their priorities, their aims, are so it becomes confusing to find a way through. Teasing out each separate aim, goal, train of thought allows for the confusion to lessen and the stress and/or anxiety levels also to begin to lessen. A task that can at times be much easier said than done. But once the negative thoughts begin to be kicked into touch, the ability to take actions, which are positive ones, becomes more achievable.
OK, many of us will feel confused at times. Which road am I supposed to take? Why do I keep on doing that the wrong way? What really happened at the end of that film? Memories of walking from a cinema many years ago with my son who looked puzzled, confused. The source of his confusion being that the whole film hung on the concept of a pair of identical twins. A concept that had apparently completely passed him by. The whole thing rather than finishing with a kerching moment, finished with a ‘what on earth have I just been watching’ comment. Though this was put a little more robustly at the time!
For me, confusion sets in when trying to understand the rules of rugby; understand and correct what I (or my cat!) have done to make my computer start acting in an off-the wall way; understand the implications of Brexit! Throw in for good measure driving alone with no Sat Nav to find the motorway closed and being diverted off into unknown territory. Maybe another motorway, with nowhere immediately to stop and grab a look at my map book. Confusing moments that may have to be accepted, overcome (for the latter, a Sat Nav helped with this), or at least worked through, probably followed by a sigh of relief.
At its worst, confusion can lead to a person struggling to be able to recognise people (even those close to them) and places (even those once familiar). Concepts such as time can become a source of difficulty. Previous clarity has become a fog with the ability to make choices and decisions becoming hard. The loss of previous familiarity can easily lead to bewilderment.
PERSONALISED STORIES OF CONFUSION
For those of us who have cared for someone with Alzheimer’s or dementia, these will be familiar.
I was in a shop buying a couple of cards recently. I was moving to the counter to pay when I realised that the young lady behind the counter was struggling. She was uncertain how to help an elderly lady customer. Said customer was very confused. However, it was possible, if what she said was taken at face value, for this not to be evident. She was getting agitated and saying that there were people following her. She didn’t know where her daughter was. She gave the name of her daughter. With a quick aside to the assistant, I entered into the chat. I asked her how old her daughter was, to be told she was four. Two possibilities – she had confused her daughter with her granddaughter – though even if talking of her granddaughter, I felt that it was a reach too far as the customer was probably at least in her eighties. OK, so an outside chance it could be a further generation removed. Alternatively, she was struggling with currently overwhelming confusion and had clearer recall of her daughter as a child rather than as the adult she was. She kept looking anxiously through the shop window to the two people outside – a man and woman.
I excused myself for a moment, telling the assistant I’d be back. I went outside, walking past the couple, then turning to beckon them to me out of sight of the shop window. They obviously had seen me chatting with the lady. The lady was the daughter, and as equally distressed as her mother. Long story short, instead of being accepted as a loving support by the elderly lady, she was now deemed to be the fount of all things evil. They had followed her when informed that she had set off from her care home, at the same calling for the help of a person she trusts.
It could have easily appeared to the young lady in the shop that they were lurking with negative intent. In fact, they were making sure that the lady was safe, whilst awaiting the arrival of the trusted one. Said person arrived, comforted the lady and set off back home with her. The daughter came in, expressed her gratitude and set off herself, with a tear in her eye.
How it reminded me of my Dad when he was at the early stages of his memory problems – it was myself who took the brunt of his anger, I was blamed for things, wrongly accused of things. On one occasion, he had sent me a letter accusing me of stealing his typewriter which he had insisted I take. His confusion led him to believe that I had stolen it – and ‘other stuff’ he couldn’t name. It broke my heart to sit next to the person I loved so very much and have so many accusations thrown at me. I tried to comfort him as we went round in ever-decreasing circles. Then there was a moment of clarity from his confusion. Dad looked at me, said ‘It’s all in my mind isn’t it?’ and burst into tears. At that moment, how I wished that, in order to spare him this pain, that my father still blamed me. I would have preferred that and coped with the pain it caused rather than take on board the far greater pain of seeing that look in my father’s eyes.
WHAT ARE DEMENTIA, ALZHEIMER’s DISEASE?
There are so many definitions of just what Alzheimer’s and Dementia are, I am using ones taken from an Alzheimer’s Matters Blog by Doctor Howard Fillit.
‘Many of us have memory lapses as we age. Dementia is different because it affects our ability to carry out everyday tasks, such as driving, managing finances, cooking, shopping, or in more severe stages being able to feed yourself…. Dementia is defined as a “clinical syndrome” that can result from many diseases, including Alzheimer’s. It is generally defined as impairment in at least two domains of cognitive function. (These domains include things like the ability to comprehend and verbalize language, form short-term memories, and understand geographic information.) The impairments must also affect daily function and be chronic rather than acute…. Alzheimer’s disease is the most common form of dementia, accounting for approximately two-thirds of all cases. Vascular dementia and mixed dementia (vascular dementia plus Alzheimer’s disease) account for another quarter.’
Having had a father and two aunties who all struggled with Alzheimer’s I am very much aware that they showed a great deal of evidence of confusion, similar to the lady in the shop. Confusion caused by memory loss. Confusion that very much affected their ability to think, to retrieve words, and to solve problems. All important aspects of our day-day lives. Having said that, despite the same diagnosis, they all presented differently. Presumably their brains were affected differently, but also their very individual characters were still evident until their disease became well advanced.
As with the lady in the shop, one of my aunties chose other than her offspring to be the person she trusted and continued to relate to. I was the chosen one – a task I was happy to fulfil. She had both my landline and mobile numbers in her phone and was able to contact me regularly. Often this was at times of confusion. I remember one such time with a smile as she caught me out shopping with a friend – shopping for a wedding hat. This task involved trying on a huge variety of hats – from the sublime to the totally over the top ridiculous. My phone rang just as I had on a hat that fell slap bang into the middle of the totally ridiculous category. I recognised the number and moved to a quiet corner where I could listen and talk more easily. The call lasted for some time as it followed the usual pattern of listening, trying to help, repeating my suggestion usually more than once then ended with lots of love and reassurance. By this time, my friend who was well used to such calls taking place had wandered away from the hats. It’s not quite the same trying on daft hats if you are by yourself. I went to find her, to be met with a huge grin and a reminder that I still sported my huge millinery confection. Good to be able to share a giggle after my call!
It was always hard for me as I remembered the fun-loving, lovely person that my aunty used to be …..but nothing compared with how hard it must have been for her and she would not have knowingly given me a hard time. Just like my Dad.
Fortunately, my aunty at this point was still able to cope with such conversations and had joined in with giggles when I described the hat I was wearing. That twinkle of the person she used to be was still there amongst the confusion that was beginning to make interactions with others unpredictable, repetitive, and demanding of patience on behalf of the listener. She even joined in when I reminded her of a previous, 'interesting' hat worn by another family member many years ago. I am sure that she did remember – I certainly hope that she did and that it gave her a link back to happier times.
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