I am driving through a small village, past a pub named The Plough.
Daniel recites the words with the calm assurance of someone declaring that the sun rises in the east and sets in the west.
We often pass through this village and I corrected him on the first occasion that he called the pub The Saracen’s Head: “…well, Daniel, it used to be The Saracen’s Head a few years back, but it’s called The Plough now”. Daniel has good eyesight and the pub sign is always clearly visible from the car’s passenger seat.
It matters not a jot that Daniel intones the words “Saracen’s ‘ead” or “there’s The Saracen’s ‘ead” every time we drive past it, so I no longer say anything. In fact, I usually say “yes”. It is a minor memory-ripple in a lake of false certainties where Daniel’s past trumps his present time and time again. I only challenge this process when his fading grip on reality threatens his personal safety, such as when he thinks he can still walk a few yards unaided.
Daniel is the son of a couple who live near me. I take him out regularly in the hopes of giving him a slightly better quality of life. His family support him well, but he had been becoming harder and harder to manage, spending most of his time staring blankly out of the window or raging uncontrollably in the street. He gets help from a number of sources these days and is a much happier man. Daniel is 37 years old and was diagnosed with Multiple Sclerosis (MS) six years ago. MS can take various forms and can occasionally be associated with the onset of other serious conditions. Daniel has an aggressively deteriorating form of MS, and it has triggered Early Onset Dementia.
Thus Daniel has a double-whammy of the worst kind: two related, incurable diseases, both of which work with unpredictable speeds and manifestations according to factors which are still only partially understood by medical science.
As referred to in earlier blog posts, my mother suffered from dementia, and most sentient adults will feel a wary interest in the subject once they reach their sixties. Alzheimers Disease and dementia will clearly become more and more significant as life expectancy increases and the bulge in the world’s demographic profile shifts towards the later years of human lives.
There are many positive, tragic, funny, appalling, and fascinating aspects to Daniel’s tale. I would like to isolate one particular strand that represents a key foundation of human identity: memory. We are becoming used to research and memoirs which detail the fault-lines in the memories of older people who suffer from dementia. Fractured memory, along with bizarre fantasies and outbursts of paranoia, is a standard presenting factor in the disease.
But what of someone who is still young when diagnosed with dementia? When the sufferer is young, is it possible to identify features and patterns which can help with an understanding of the illness itself, and beyond that, with an understanding of the role that memory plays in all our lives?
I am thinking aloud in writing this and I do not pretend to have any weighty conclusions (yet!). However, I offer a few observations and half-insights, partly as a way of collecting them at a staging-post on the journey towards greater understanding. Both MS and dementia are terms that cover hundreds and thousands of different paths of disease, but that should not be an excuse for failing to look for common factors.
- Daniel was diagnosed too late for him to have any real understanding of his illness, but he does have an awareness that his “thoughts are falling apart” and he experiences the need to be still and try to re-gather them at times.
- Short term memory is very problematic and is scarcely made any better by repetition of information.
- Long term memory is patchy but much better than short term. Here repetition is extremely important.
- It is helpful to identify ‘memory bearings’, some key narratives which provide a basic structure. It is not necessary or even possible to fill in the gaps in such a structure, it is the structure itself which is important (even if it is relatively crude). For example, Daniel’s cornerstones and load-bearing beams include: the cars he has owned; the precise locations where he has done manual work; a small raft of childhood memories (especially of his Nan); encounters with the opposite sex; a visit to Australia; successfully giving up smoking; the words to pop songs.
- Any shorter term memory activity beyond this basic structure is dictated by whether Daniel cares about the person or place or event in question. This is no guarantee of successful memorising, but it does seem to be a prerequisite.
- Unless it has implications for safety or risk of harm, it is completely counter-productive to correct or challenge false memories or fantasies. This process is much more about the needs of family, friends and workers around the person with dementia than it is about the sufferer’s own needs.
- Change is quite de-stabilising for Daniel. There are, and will continue to be, changes which it is necessary to discuss with him and attempt to make him aware of. But inconsequential changes can be left for him to hold on to a “fact” from the past. If it helps with one’s bearings (which it does) then The Saracen’s Head can happily remain The Saracen’s Head. It is one of those moments when it suddenly becomes clear that memory, false memory and half-memory are all part of a long continuum. Each of us is somewhere on that continuum along with dementia-sufferers.
- Human beings are happier remembering things as they want them to be rather than as they actually were at the time. This is certainly the reason why I have never owned a camcorder and use a camera sparingly!
- Song, poetry, rhyme and rhythm, often linked with humour, are wonderful tools for engaging with dementia sufferers. Nothing new in that observation, but it bears repeating because of the sheer power of the thoughts and feelings those things universally tap into.
For some subliminal reason the latter point makes me want to quote the ending of a beautiful song by The Band (Daniel and the Sacred Harp):
“Then Daniel took the harp and went high on the hill
And he blew across the meadow like a whippoorwhill
He played out his heart just the time to pass
But as he looked to the ground, he noticed no shadow did he cast.”
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Please, please, preserve me from ever being led up a bland-alley. Or experiencing a bland date.
I know that we all have our guilty pleasures, and that we’re all capable of turning a bland eye to certain films, books, tv programmes, art, or music. But enough already! Blandness is all around us and it’s closing in.
I recently found a box of old reel-to-reel tapes that I used to record music on when, going by the dates on the spools, I was between 12 – 14. Having illicitly stumbled on a Muddy Waters radio broadcast I went on a mission of taping as many blues albums as I could wring out of the county library. There must have been a true aficionado working there at the time: as well as Muddy I recorded all the hardcore folk like Mississippi Fred McDowell, Furry Lewis, Skip James, Sister Rosetta Tharpe, Bessie Smith, Lightning Hopkins, Big Joe Williams, Sleepy John Estes, Alberta Hunter, Robert Johnson, Elmore James, Howlin’ Wolf, Victoria Spivey and various esoteric compilations. None of your smoothie BB Kings, Sonny Terrys or T-Bone Walkers (though I now appreciate them too).
My early-teen rebellion against blandness must have been personified in Bing Crosby (it helped that my parents liked him). The pipe-smoking, shite-crooning worm in the bud of beautiful music.
So, to list some of the (printable) ironic titles I gave my reel-to-reel recordings in addition to the one at the head of this blog post: Swinging Grooves of Bing Sucking Catarrh Through a Broken Straw; Modern Sounds of Sulphuric Acid Being Poured Through Tiny Funnels Into Every Pore of Bing’s Body; Bing Crosby’s Dysentery Sounds A-Go-Go; Field Recording of Bing’s Grandchildren Kicking His Top Lip with Steel Toe-Capped Boots; Bing’s Syphilitic Lips – Their Greatest Hits; Live in Concert – Bing Crosby Screaming of a Trite Christmas.
Mmmmmm…some satisfyingly healthy anger in there. Let’s have more of it right now: Bing would seem like a punk Beelzebub compared to our current crop of Xfactor’sGotvoiceTalentRobbieWilliamskylieKlones.
My musical horizons have extended in many directions, but the blues was a great start. After all, who ever heard of a Bland Lemon Jefferson, or a Bland Willie McTell…?
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Next time: to include by popular demand – an update on Sami and her No Novel Underground!