Part of my role as a memory nurse at the Countess of Chester Hospital is to assess and support people living with dementia, either diagnosed or undiagnosed, during their hospital stay.
During one particular shift, I was asked to assess a gentleman who the staff had identified as having difficulty making sense of his surroundings and I duly went along to meet him. He was sitting in an armchair by his bed, you know, one of those plastic-covered bolt-upright numbers with wooden arms. The design had ‘hospital’ written all over it.
At no time incidentally, did I expect to end up writing a poem – not my forte really – but basically that’s exactly what I ended up doing.
I would usually start my assessment by introducing myself, shaking hands and asking the person how they were feeling. At this point, Len looked up and said to me ‘I think I’m here. But I’m not’ I looked back at him and said ‘that’s very intriguing ’and I then asked if he would like me to explain what is happening currently and why he was here.
He said ‘yes’ although said that he was somewhat troubled as the hotel room walls kept moving and revealing who was inside them. I followed his line of sight and saw what he was referring to – the privacy curtains around the neighbouring beds were being pulled back as the care staff had just finished ‘doing’ what they do.
When I shared that with him, he thanked me and said his mind was all twisted around.
Len went onto describe how many things in his life ‘didn’t sound right’ and I don’t believe he was referring to noise either.
I tend to write down comments people make during my assessment, along with interpretation although on this occasion I was so taken with what Len was saying that when I looked down on my paper, all I had written was these amazingly powerful thoughts and perceptions.
I thanked Len for sharing his insights and he said that he should be thanking me as it was if I had appeared out of the fog and straightened things out for him.
As I walked back to the office to write up my notes, I reflected on what had just happened and felt really privileged to have been part of that moment. Back in the office, l looked again at what I’d written. Instead of firing up meditec, the hospital patient records system, I opened up a blank word document and started to play with the comments from Len and realised that they were starting to form into a poem…
When I was happy with the results, I printed the poem off, just as Angela, Len’s daughter walked into the office for a catch up on her Dad. I explained what had just happened and presented her with the poem:
An insight into dementia
I think I’m here but I’m not
My route to the facts are all blocked
Places don’t sound right
And people don’t sound right
And I don’t sound right
And what is the answer, the ‘right’?
My mind is all twisted around
Then suddenly, from the fog, you appear
And straighten it out from the weird
The answer? For now, I AM found.
Angela was quite moved by this and requested a copy. I told her to keep that one as I could always print another one off. I then asked Angela for a bit about more about Len’s background and especially whether he used to write.
She said ‘I’m not sure what to say really. Dad was born and brought up in Saltney and stayed there all his life. A quiet man but fiercely independent not wanting anything from anyone but always offered “what can I do for you?” Whenever you phoned or visited.
Over the last few years when I’d go round to visit I would sometimes find little notes lying around, not taking much notice until he had a bladder operation which made him a little incontinent which he was very upset about ,he wrote about this, wish I could find it again , so on reflection I think writing was dad’s way of expressing his true feeling about something’
When Angela had gone, I asked Len if he would like read the poem. He took the piece of paper off me, read it and then re-read it.
At first he looked quite shocked. ‘How do you know all this? This is exactly how I feel’
I said ‘because my friend, these are your words’ Then I had a thought. They ARE his words! All I did was write them down and share – more like the reporter than the author.
Anyway, he smiled, handed back the poem and said that he couldn’t stop and chat further as he was off now to catch the bus back to Saltney!
After a while and when recovered, Len was discharged from hospital when a suitable care home was located for him as his dementia had progressed to the point where he could not now manage at home.
After a while, I received an email from Angela, thanking us for looking after dad and also an update on how he was getting on:
‘Dad has started his new journey today in the Residential Home , that’s the reality, however in dad’s world he’s found a lovely little flat in the upmarket side of town that is near to home (Saltney) so he can pop to the shops when he needs to, and long may he continue with that lovely thought :)’
As the weeks past, Len’s behaviour towards his family started to change and Angela emailed me again:
‘I am on the steepest learning curve ever, dad is changing quite rapidly , he’s agitated and blames us all for keeping him a prisoner, stealing his money , cries and wants nothing to do with us if we can’t get him out.
His carers say he’s lovely but we seem to agitate him. I know it’s his illness but it’s so very hard to hear, it’s hard to detach the words from dad’
And then she finished up with this killer line…
‘Dementia is a word I used to hear but not understand and for that I feel very ashamed.’
Actually, it’s not Angela who should feel ashamed but us. ‘Us’ as in the NHS. For me, when someone gets a diagnosis of dementia, someone else gets a ‘diagnosis’ too – that of a ‘carer’ and who prepares that person for the journey ahead?
Who tells the daughter what to say when her 86 year old mother asks for ‘her mum’ or the husband of the wife who sits bolt-upright in bed at 2 in the morning asking to go home, when she’s in her own bed, in her own bedroom, in the house they have lived in for the past 40-odd years?
We all need some information about dementia, what it is and as important, what it isn’t as we all (hopefully) intend to grow old, have older people in our families and live in a community as well.
There are an estimated 850 000 people currently living with dementia in the UK, affecting over 22 million people indirectly, as a carer, family member, neighbour or friend.
We all should want to support people with dementia to live well with their dementia and not suffer with it. We should also support their carers to care well too by ensuring they are prepared for the journey and not having to have to wait until someone in their family is diagnosed with this brain disease before starting to find out more about it as they go along.
This is not just an issue for health and social care organisations either. Communities have a vital role to play in this too. We assist people with physical disabilities into our shops, services and buildings by providing physical ramps so we need to start to think about how we include people with ‘cognitive’ or thinking disabilities too and build cognitive ramps for people with this progressive brain disease.
Andy trained as a psychiatric nurse in Northampton but spent most of his career in Portsmouth, his spiritual home. Worked in most mental health disciplines but was attracted to working with people living with dementia as wanted to stand up for the scandalous lack of support, services, dignity and compassion, and positivity surrounding dementia care generally. A keen supporter of true person centred care and name Tom Kitwood as an inspirational figure.