Here, Sue reflects on her early experiences of caring for her mother. Although Sue's mum is sadly no longer with us, Sue is incredibly generous in continuing to share insights from their time together as her mum ventured further into the process of the disease. Dementia Matters in Powys are truly grateful to people like Sue who are happy to share their insights with us all.
"Recently, I attended a 'PAVO Dementia Networking in Powys' meeting in Brecon, where agencies came together to promote and discuss the positive strategies and innovations for many aspects of support for people with dementia and their carers. I met inspirational people who push forward their vision for living well with dementia despite the constraints on social care, the difficulties in recruiting specialist medical staff and care-workers, and the difficulties arising from the closure of Nursing Homes and specialist psychiatric wards.
The first speaker, Nigel, won my heart immediately with his brusque, no nonsense approach to his own early onset dementia. His frank appraisal of what can happen to a person at the point of diagnosis illustrated how people's perceptions about him appeared to change overnight, as if he had somehow immediately lost his ability to function independently and to make his own decisions.
Nigel's observations about the impact of the premature interventions made by a team of well-meaning care-workers into his domestic arrangements, were delivered in a way that made us smile, but brought us alongside a man determined not to be defined by dementia and who has taken his fight to maintain Human Rights for people with dementia, to the Welsh Assembly and to the media. When asked what would make him feel more at ease and confident about living with dementia, he replied that he would like to walk into a Bank having forgotten his password and pin number and not be made to feel like a criminal.
While I am confident that this would not happen in Brecon as most of the businesses and banks have received Dementia Awareness training sessions, it reminded me of when I took my Mum shopping while she was still able to live fairly independently in her own home with our support.
Mum had grown increasingly reluctant to leave the house. Attendance at medical appointments, going to the hairdressers, or even out for a gentle walk needed either a lot of reminding and preparation, or a hasty exit and bundling into the car if Mum seemed to be compliant on that particular occasion. Sadly, the time would come when Mum completely refused to leave the house but on this day, having successfully found her handbag, purse and keys, and persuaded her to change into the clothes I had set out for her, we set off in my car, singing silly songs and enjoying just being out.
Hindsight is a wonderful thing and now I look back on that experience with sadness at how ineptly I handled it, my only excuse being that if I had only known then, what I have learnt since, I might have avoided what happened. I wanted Mum to enjoy her time out, a cup of coffee, an amble around the shops and then home for a cuppa – a touch of normality to connect us back to life as it used to be – before dementia.
The supermarket was noisy with the clacking of trolleys pursuing their own eccentric navigational journey up and down the crowded aisles. Strident background pop music filtered through any attempts at conversation, punctuated by cheery announcements proclaiming the latest special offer. Children wailed and nagged their parents while the queues at the check-outs spilled backwards, blocking easy access to most of the foodstuffs. Saturday morning was the worst time I could have chosen!
I barely noticed the sensory over-load then, but now I understand how a person with dementia, bewildered by the overhead posters and signage, senses battered by the unremitting background noises and no obvious exit to escape through, would be exposed to a situation that is difficult to process visually and auditorily and might look for any means of escape.
I took my eyes off Mum for barely a minute while fending off the attentions of someone I had not seen for a very long time and in that short time, she disappeared!
Running clumsily along the corridors of tinned foods while steering a delinquent empty trolley in a sudden panic, I will forgive anyone who thought I was the one with dementia. I found Mum quietly positioned in front of the delicatessen counter, clutching her handbag with a ferocious scowl of concentration focused on a chunk of Shropshire Stilton. Mum stood for a very long time seemingly unable to make a choice from the feast of cheeses, cold meats, olives and quiches displayed before her.
At first, the shop assistant was friendly and helpful and Mum responded well to her cheery exchanges but after a few minutes, the assistant became restless and moved away to serve other customers. This was to be repeated many times over the next fifteen minutes with Mum rooted to the spot, the assistant growing visibly irritable and me wondering how I could tactfully steer Mum either into choosing something or moving us both away.
Finally, Mum spoke.
“I've gone off cheese.”
The assistant's face was a study of exasperation and I hurriedly followed in my mother's wake as she trotted determinedly towards the exit, hat askew and was soon outside waiting for me to catch her up while she tried to open the door of a stranger's car.
I had to learn that my lovely mother could not easily cope with choice and that while sometimes she would remember the patterns or routine of shopping, at that particular moment in time, she had lost her way towards purchasing items and had probably forgotten why we were standing there.
If only I had known how to distract her, to suggest that as the cheese in her fridge was mouldy should we buy some Cheddar, our protracted and painful wait at the delicatessen counter might have been avoided, but I was a raw recruit to the depredations of dementia, adjusting to the role reversal of daughter to carer and struggling to keep some sense of normality in a skewed relationship.
Since then, Brecon has become a Dementia Friendly Community where many businesses, shops and public services have received dementia awareness training sessions. There are places to regularly enjoy socialising and to receive support, advice and friendship from others living with dementia. Dementia Awareness Week 15th-20th of May will highlight many of the opportunities to find ways of enhancing the well-being of the carer and their loved one with dementia.
No one is born knowing how to live well with dementia and all its challenges but through sharing the experiences and the support of other dementia-carer veterans with those who are just starting out on their own journeys, positive suggestions and feed-back may help to open new and easier pathways to continue enjoying the very simple pleasures of life.
By way of a post-script, by the time I had driven Mum home, she had recovered her equanimity and when I asked her what she would like for lunch, she replied,
“A nice cheese sandwich please....................!”