Still water

By David Jolley

Wolverhampton does not have a river of any significance, but it does have canals. One of the pleasures of life there was to live on the bank of the Staffordshire and Worcester Canal at Newbridge. The Midlands has a network of canals, Birmingham bizarrely boasts a harbourmaster. These man-made channels were constructed to ease the transport of freight in the 18th Century. After many years of disuse and neglect they have been reinvented as a leisure facility for boaters, walkers and others; and affordable homes for more and more people. Currently there is real interest in returning freight to the canals of Salford, London and Leeds.

The problem is that while bodies of water mean there is the possibility of floating along in one dimension, there is a block to those who want to cross to the other side. In some instances the lock system allows passage for people on foot, but for bigger canals such as the Manchester Ship Canal, something different is needed: Hulme’s Ferry continues an ancient tradition to help people across from Irlam to Flixton – at some times in the year . Cars and other vehicles need roads and bridges for their journeys. Traditional canal bridges are almost always narrow – not allowing the passage of larger vehicles and requiring their drivers and Satnavs to find another route.

At Warburton a toll bridge crosses the Manchester Ship canal – using this cuts out many miles of main road and motorway travel when heading from Altrincham towards Warrington, Wigan, Liverpool and other North West towns. The cost is wonderfully 12p for a single journey and 25p for a day pass. I love the interruption of the flow to be part of this ancient ritual – but not everyone feels the same:

So what is all this about? Well I think it is about finding your way – as in Pathfinders rather than Pathways. For there are some routes which suit some people and others which suit others. There are recent and modern routes, older and ancient ways. Beyond roads and canals there are railways, rivers, tramways and so on. Individuals will often want to go ways which use different modes in sequence, rather than stick to one. Sometimes you have to go a long way round to get where you want to. Sometimes you can use an older way and get there – but it may take time and research to learn about it.

So it is with trains of thought or feelings – what is causing puzzlement, confusion or fear just now may be based in old times, old losses or mistrusts. Know about them and proceed gently. There will be a way.

Rant Control

By David Jolley

Through the week we have exchanged thoughts about the learning from Gnosall’s successful memory service in Primary Care. That service, successful and sustained after more than 12 years, has generated international interest and added to enthusiasm for care of people with dementia and their families within Primary Care. Unhappily three attempts to extend the principle to other Primary Care services in Staffordshire and Shropshire have foundered.

During this month we have been told that greater use of electronic technology for and by patients will make for much better use of resources and knowledge . This is something which one of our discussants has supported strongly. The problem is, I might venture, that much of healthcare need is amongst older people, some with dementia, and many of them are not computer-savvy.

The Gnosall models brings clinical expertise directly to patients and families and that expertise remains available in the Practice throughout the life of individuals with dementia. The experience of the roll outs has been that everyone has liked the principle but that organisations have been unable or unwilling to accommodate them within gigantic, rule-ridden protocols which do not want to know about continuity of clinical responsibility or clinical freedom.

‘Large organisations cannot allow autonomy as it may affect the integrity both of the organisation as a whole but also the individual divisions.’

And in that we have the essence of the problem: the health and wealth of the large organisations such as NHS Trusts or private sector providers has been allowed to become the first priority. What is best for patients, families and the health and wealth of the nation as a whole has been set aside.

So we have an understanding. So we rant. Can we please regain control!

Better use of technology may have advantages for some, but old-fashioned, person-centred good practice has so much more to offer.

On the same bus

By David Jolley

This little phrase may be one of my own creation – Googling doesn’t find it – but does give: ‘In the same boat’, ‘On the same wavelength’, ‘On the same Page’, and ‘By the same token’. I guess that is where it comes from.

Wolverhampton is about as far from the sea as any other town, or city, in England so my experience of boats is limited. The Black Country does have its canals and some towns are based on rivers, but boats have not figured greatly in my life. Dawn Brooker has used the metaphor of a riverboat journey as an alternative to the ‘pathway’ analogy. I find both too deterministic and restrictive. Individual journeys are so complicated, variable and have so many dimensions.

Buses I do know. We travelled by bus and counted the numbers on the tickets when shopping with mum and when travelling to school, often it seemed in a soaking gabardine raincoat. Modern buses are huge – Double decker plus bringing hundreds of young ladies and young men to or from local schools. We travelled in an ultra-modern, plush coach to Southport for the North West in Bloom Awards ceremony this year.

Last night I dreamt of a big bus carrying teams of people who I have worked with. We were travelling to places which need help to produce and provide decent services for older people with dementia and other frailties. We travelled first in confidence, knowing that we had the skills, the resources and team loyalties which would see possibilities, and support a reasonable life for individuals with difficulties and those caring for them.

But then in the way of dreams, we found ourselves without a driver. Down to me then. But this bus seemed to be powered by electricity. No matter how long we sat at the charging station, we never got the signal that there was enough power to carry on.

I am not having that. We’ll get off and walk

Medscape recently gave Charles Dickens claim to the having described the interpretation of dreams before Freud

I was not impressed because the bible told us long ago of the Joseph’s prowess in this matter.

I think my dream is pretty transparent. Reliance on the latest technology and ‘systems’ leaves us flattered to despair.


Best foot forward

By David Jolley

Our Dementia Conversation this week included a young woman who provides a specialist service for people who have difficulty finding shoes which are the right shape, comfortable and maintain or improve their gait. One of the keys to her entering this field was the difficulty which a family member had, following a number of strokes and the emergence of dementia.

Feet are so important to us and we know that some people neglect their feet for want of being able to reach them, lack of money to afford chiropody, or not noticing as things get worse and worse. Chiropodists love to show you bottled and preserved examples of overgrown nails from great toes – onychogryphosis

Strangely I have not found a study which looks systematically at the prevalence of such problems amongst people with dementia but it would be worthwhile. There have been such studies of dental problems and I remember a project from the Salford Psychiatric Register which did this too. Difficulties arise in similar fashion at the two ends of the body – lack of awareness and loss of routines initially, complicated then by resistance to help which is too easily seen as an attack.

We diverted to comparing stories and views on best practice when someone with dementia requires to be seen by a specialist – for help with feet, teeth, hair, clothing or whatever. Some people insist on seeing the individual with dementia just by themselves. This may be seen as confirming their personhood and individual dignity. There can, however, be problems if the individual with dementia is unable to describe their difficulties, and may simply deny that there is a problem. A supplementary ‘history’ from a carer is invaluable – as is the presence of a carer to take note of what is said so that the necessary action is understood and can be done, with feedback of the outcome to the professional. Everyone agreed that carers should not hog the discussion and we must avoid being lured into being the only one talking to the expert. As in most things, adjustment according to the circumstances will be best – rigid guidelines are not helpful.

Funny and wise

By David Jolley

We have watched the two programmes with Billy Connolly in these holiday weeks.

We were captivated, as we have been by his performances over a fair proportion of our lifetime: always funny, always wise, and touching feelings and experiences in common.

Billy Connolly is intrinsic Scot – but his communications reach into people from all over. Max Boyce is intrinsic Welsh (‘I know, because I was there’), Mike Harding intrinsic Manc (born in the shadow of the biscuit factor in Crumpsall), Peter Kay – Bolton/Irish, Hilda Baker (‘She knows y’know’) spoke for small people, Victoria Wood for women of a certain age. Sir Lenny Henry speaks Dudley and African Caribbean and the Goodness Gracious Me team are British Asian. In their particulars they are from different worlds, but in spirit we are all as one.

These fellow travellers can all put a finger on what is really important, so important it makes us laugh with pain and joy.

Billy Connolly’s two programmes included excerpts which reminded us of his magical skills and presence as an entertainer – so we might laugh again. We saw the impact on people of all ages, chuckling and crying – helpless as babies and pleased to be so tickled. ‘So tickled’ of course brings Ken Dodd to mind – and we have enjoyed the earlier programmes which reviewed his life, career and death. Doddy told us: ’You don’t tell a joke, you sing it’ – and Billy Connolly and others do just that with the rhythm and movement of their shows, sometimes gifted further with the inclusion of music.

We saw the poverty of Glasgow: ‘We didn’t know we were poor until they came and told us. Told us we were living in a slum and must move to somewhere better’. Somewhere better was a new town outside Glasgow – Flats with baths, toilets and other conveniences – but with no cafes, no cinemas and nowhere to be together. Connolly hated it but found freedom and another life on his bicycle, with his banjo, and in pubs where drink and music and jokes were shared. ‘I didn’t come from nothing. I came from something’.

He grew to become an international superstar, demonstrating an extraordinary range of talent. But here we were seeing him as old, old and changed by Parkinson’s disease. ‘I’ve got Parkinson’s Disease. I wish he’d kept it to himself.’

This was the power of these programmes. So many people will turn away from their reflection rather than address the truth of their ageing. This is not for Billy Connolly. He lists the losses and frustrations. He showed us his recent performance on stage where his wit and mischievous eyes were still on view – and used mercilessly against himself to point out that he can no longer prowl the stage or clown as he used to.

‘I am 75 and nearer the end than the beginning’. Of course he is, yet he shares no bitterness but a wise, philosophical whimsy.

We need more of this. So much effort is wasted on the pretence that every individual must live on and on. We are so fortunate to be living such healthy and productive lives, some into their nineties and beyond. But there has to be an end, and for some the months or years before death are characterised by loss of abilities, physical or cognitive or emotional, which have been theirs to take as granted. Living with limitations with some sort of grace is a noble and admirable thing.

The internet tells us that some people have found these programmes depressing and we find Billy and his wife Pamela apologising for this.

It is sad to see the passing of personal heroes, as with the loss of family and friends, for they are at least as close as these. But loss and sadness are part of the human experience, to be hugged close and with thanks, not to be denied.

The beautiful game

By David Jolley

Wolverhampton Wanders beat Tottenham Hotspur 3-1 at Wembley Stadium this weekend. Sue and I had bravely listened to the game on our newly set up DAB radio. The radio is a gift, given to us a while ago but we had not investigated its powers until our old Roberts radio began to cough so much that it was a struggle to listen, especially when the volume was turned down low. The DAB requires time and patience in tuning, though Sue has now discovered how to set particular stations (a mystery still to me).

The combination of tuning and a famous and fabulous football match took me back to a Saturday afternoon in the 1950s when I was tuned to the Light Programme for the game between England and Scotland. In those days there were many fewer internationals and the competition between the Home Nations was all-important. Wolves (Wolverhampton Wanders as the commentators on this Saturday kept calling them) provided several players for England – always including Billy Wright as captain and Bert Williams as goalie. But the day belonged to Dennis Wilshaw, number 10 for Wolves and number 10 for England. He put the ball into the Scots’ net four times during the afternoon. Every goal gave be a surge of pleasure and pride of belonging and sharing in the success. I thought I might burst. Salvation was time in the small back garden with a ball after the final whistle.

There may be similar memories and experiences for the rugby tribe, but these are not know to me. Football memories have been found by others to be useful as reminiscence topics which will engage otherwise grumpy old men. I have seen several life-stories of former professional soccer players amongst the good work of residential homes. Such projects are great for the individual and for his family. They can also be used to link with shared memories of contemporaries who are now sharing difficulties and are in need of care. One of our firsts was a former Manchester City fullback. The club was interested and supportive. In recent years a number of clubs have recognised that former players have developed dementia and have reached out to their families and become a focus for support for people with dementia in the town. There are a number of examples of this: ,

There has been concern for some time that playing football might increase the likelihood of developing dementia. The focus has been on players who are known to be frequent headers of the ball. It may be that the heavier balls used in the 1950s and previous seasons were more dangerous than the more recent lightweight balls. Comparisons have been drawn with the dementia associated with boxing – Here it is the lighter weight boxers, who often have their heads knocked backwards by punches, who are most at risk of developing Alzheimer changes. The shearing rotation of the brain is believed to be the cause of the damage, rather than the weight of the blows. The situation is complicated. Professional footballers are exposed to repeat head injuries not linked to heading, and some experience repeated episodes of unconsciousness. There is interest in researching the issues in soccer and other contact sports such as rugby and American Football.

Now this has reminded me that we have promised to review the relationship between head trauma and the development of dementia for our next meeting of Dementia Conversations at Bowdon Vale.

On the cards

By David Jolley

We like our daily paper to be on paper/newsprint. Some parts hardly get a glance, others take time and may need to be revisited. Special bits are clipped out and kept at least for a while. It is the rhythm that makes the receipt, the unfolding, and the visiting of each page so attractive.

Cards at Christmas have the same virtue of currency but potential permanence, clues from handwriting, a colourful stamp and the postmark. There is the added dimension that we will be the reporter and editor of a communication toward these friends and family near and far – near and far in time as well as geography.

We do have emails and electronic cards, and some of these bring welcome entertainment and warm messages, links that go on then for a while after silence of months. But the sending and receiving of cards in envelopes – some by post, others simply delivered round the corner, is a pleasure with history. We have a system for sending which shares responsibility between Sue and me. There are some exceptions to the main routine – special care here to try to avoid missing someone – or sending twice over. Messages may be short, but every one has thought behind it – and associated feeling. In doing this we have conversation across the dining room table that relegates radio and television to some other time. This is time together with people from our earliest days – family still who shared a childhood, a few who were at junior school, more from the teens and secondary school or other activities. Then there is the series of lives lived through work, the neighbourhood, children, more schools and church.

The list of contacts, ‘individuals of interest’, continues to grow though some are lost. Some who wrote last year are not with us for this. They are remembered.