My parents were diagnosed within their golden anniversary year with Alzheimers [Juliet] and Vascular Dementia [Clem]. I want to take the reader on parts of this journey through my perspective as outsider/insider and show sightings of light within the fog of these diseases. Both affect brain and body. Vascular dementia is connected to a lack of oxygen circulating in the brain and links to suffering a stroke whilst Alzheimers includes the systematic destruction of the brain from front to back. They are each ruthless in their own way. My aim is to highlight something of the richness and appreciation of life that have stayed with both my parents despite the disease and how humour and music have helped the family. There is a merging of their present and past in my story which reflects what I bear witness to. I don’t want to idealise or minimise the effects of dementia though I do want to show windows to good times. I can’t ever know to what extent their loving marriage, the privileges of their class background and their impulse to humour have impacted on the sweet poignancy of parts of this journey. Whilst this is a unique and personal perspective, I hope wider ideas might be generated for others. I am a social worker by profession which perhaps helps me to harness the positives in this situation where others might not. I have an interest in the stories we tell ourselves about our lives and how these can be challenged and changed and within my profession life story work, and reminiscence groups are particular interests. This has probably influenced my reactions to the changing understanding of reality my parents are both grappling with. I must also admit that were I caring for my parents 24/7, there might be some clouding of my vision and the rays of light might not feel so warm.
As a child, loud laughter would often emanate from the attic [my parent’s bedroom] – easily recognisable as Clem’s distinctive sound that some voiced should be bottled, although a cause of embarrassment outside the confines of the house. It is said that when he was a teacher his pupils would make up jokes competing just to see who could get him to laugh for the longest. Oh, to be normal! The laughter which came at random times when Clem was alone used to puzzle me, but I got to learn very young that it was because he had retrieved his ‘Funny book’ [begun pre marriage in 1959] from its secret place in his cupboard along with his cufflinks, after shave, boxes of stamps and other treasures. Objects he did not want to get sucked into the vortex of chaos that was our family life style.
The ‘Funny Book’ contained anything that had given him cause for merriment; comments from characters in his life featuring Juliet quite a bit but also the malapropisms and innocent misunderstandings that are part of everyday life.
A recent example entry [if Clem could write] might be: 12th February 2016. Juliet walked past a golden Buddha statue in the front of our local Thai Restaurant and exclaimed with enthusiasm; ‘Oh look! They’ve got a hobbit!’
All families who live with laughter, pre or post dementia, should have a funny book!
Clem would let enough time pass before picking his book up for all the jokes to strike him afresh. The whole scene would rise up and give him a pleasant break from whatever other work he was invariably immersed in. When Clem got diagnosed his ‘Funny Book’ went missing, which felt a devastating blow, though it re-materialised within a few days. These findings and losses when both parents were well, came from the natural static they generated wherever they went but latterly seemed more to do with Juliet’s Alzheimers.
Post diagnosis the funny book became a bit like a child’s transitional object; a vital link between past and present tucked into the side of the NHS chair. Security and access to it was now through us siblings reading the old jokes back to him. I understand how deeply humour and laughter for him have helped so much in bearing the diminishing powers of body and mind. Juliet has been more attached to photos as a way of holding on to memories along with reading aloud from anything in front of her, calming herself with this skill that has not been lost. For their golden wedding anniversary I created a memory highlights book of their marriage putting key themes down in photo form and my siblings did likewise, with cartoons of classic family events. The preservation of the past whilst accepting loss of ability seems to be part of the territory for all involved; a recalibration of the possible. Perplexing poltergeist like activity in reality and mind became a feature of their life with valued objects and books disappearing and reappearing unpredictably. Pictures would appear to Clem to have moved or would speak to him, in particular, a dark miniature of a monk. Occasionally long since deceased relatives [often who disapproved of him in some way] would be waiting for tea in the kitchen and he would voice that he needed to see ‘the others’.
Clem’s mini Cooper [which remained in operation for longer than it should have] could also contain people waiting for him [a frequent occurrence in earlier life]. Juliet’s decline after diagnosis was more straightforward with the chief symptom being loss of memory with no symbolic language, delusions or hallucinations. She liked to keep objects constantly on the move so sharing a cuppa demanded vigilance as her mugs moved in mysterious ways. What would start out as a cup of tea with no sugar in front of you could easily morph into a coffee with two sugars in front of someone else!
A few months after my father’s diagnosis one sunny afternoon, my parents came over for lunch. Clem was smiley and very slow as he moved around the room lying down on the sofa announcing that if he ‘went’ today he would be happy to go ‘right now’ surrounded by his loved ones. The following day he was indeed taken to the GP and was whisked to hospital for a pace maker as his heart was stoppingly slow. New trouble began as a catheter was fitted which several times because of infections led to close encounters with ‘the end’. Of this experience he said; ‘Whilst I was in hospital a strange law got passed that forbid any patient to use the toilet but luckily, they had this ingenious apparatus that made it unnecessary for anyone to even need one!’ As soon as infections set in then more delusions arose and a lack of recognition of people as well as hallucinations began.
Clem looked at me one day and said to the room ‘I don’t know who she is, but she looks very worried.’ For a few weeks at election time Juliet was referred to as Jeremy Corbyn [presumably the colour of her hair was similar] or ‘Juliet 1,2,3 or 4’ . He became convinced there were various imposters ‘the Juliets’ who appeared to be Juliet but were not really. They represented parts of her with malevolent intent that needed to be ignored. If you tried to reason with him that they were not real, he would shake his head sadly and say quietly with conviction ‘That is just not true’. Even more strangely he began to call her ‘Barry’. The ‘Barry’ phase made sense once I realised that he was referring to the fact that her hair was falling out and the connection was a long-lost friend called ‘Barry Barber’. He was saying she needed the attention of a barber. ‘Barry’ disappeared once her hair grew back. Dream interpretation skills were needed to decipher the code behind Clem’s words, and I felt a warm satisfaction when the puzzle was solved. There was often a gleam of gratitude in Clem’s eyes if he was understood correctly.
Throughout life he has been a compulsively sociable loving being. This could often be exhausting for those around him. Clem was confidently sure that people would welcome a visit from him. One funny book entry from many years ago began with Clem saying; ‘ I wonder what it would be like to live on a desert island?’ and Juliet responding with not the shade of interest he hoped for ‘Very boring I should imagine but you would want to make friends with all the islanders and entertain them.’
Shortly before Clem’s diagnosis I felt a chilling finger pass over my chest as I received a first ever phone call from Clem to my mobile. Clem told me he had called the police three times the night before as there had been a break in. As a younger man he had always been security conscious- fussing about double locking the doors and where keys should and should not be kept- Yet now for the first time alone as my mother was away in her beloved Northumberland without him –it had happened. He said the burglar was ‘A window cleaner and he is here on the sofa with me now.’ The conversation was taking a bizarre turn, so I offered my services.
I was able to see the house bore the marks of his delusions and yet still a demonstration of his unique personality. I found torches in small clusters in every room. He’d always been a torch lover, but this was a new extreme. Perhaps he hoped their beacons of light would clarify growing confusion. I nervously walked into the front room to view the window cleaner and followed Clem’s pointed finger to the sofa which was loaded with every cushion in the house. With the curtain’s half closed, the impression of a man lying on the sofa was clear to see and yet it was just… cushions. I kept on looking in to Clem’s eyes to understand what he saw better, and I saw that clarity would come and go with a previous incarnation of Clem still present and able to understand these were illusions. He referred to vascular dementia with mild irritation as ‘this damn disease’ and reflecting on this I think there is a narrative power in identifying the problem lying with the disease, externalising it rather than self-blaming. Other objects featured as we learnt to live with new perceptions and uncertainties; maps, keys, bicycles and locks have all had phases and now there are invisible objects in the air he slowly bends down to touch. The stages of dementia appear sometimes to be about returning to something more primal about survival as if primary rights are being attacked and must be defended.
Clem’s language which had always been rich became ever fuller of metaphors and this has been a wonderful aspect for me, for it comes as ever from a kind expansive heart. He occasionally used to voice he feared his company was not very good, saying; ‘You try to find the word or the concept but by the time you do the wave of conversation has moved on.’ When a friend of his politely said ‘I am afraid I am not following you, Clem’ he smiled and said, ‘Forgive me, for I have developed an unfortunate habit of talking hogwash.’ And another time he sought to explain; ‘Forgive me for chuntering on. I have to stoke myself up like a steam train otherwise I might end up in the middle of nowhere.’ These worries have passed.
Two years into diagnosis their bicycles increasingly represented for Clem and Juliet freedom, new horizons, adventure and the capacity to create it. Losing the skill and ability to manage their own transport was a hurdle that both were reluctant to face. Clem had always been a safe but nippy driver, but all spatial judgement was impaired; corners were taken wide, and speed increased. The car got long term ‘borrowed’ by my sister which suited all. Cycle riding continued and we managed to delay bicycle repairs by distraction and with carer collusion for long periods. The carer recounted going to collect the bikes and the man who repaired them looked at her in amazement as he realised who the riders might be. She urged my parents to wheel them home but was left first by my father who managed to get his leg over and ride off down the centre of the road. She then turned around to see my mother whisking herself nimbly on to her bike and was left helplessly in the middle of the road shouting after their receding backs hoping they had ridden home.
Clem and Juliet who are truly melded into each other have declined together- a positive co-dependency of affection taken to its logical extreme. Five years from the first rumblings and it continues to be a double act. The transformation from grown up child to caretaker is not straightforward and inside there remains always a child still longing for the authority of a parent. My bond with my siblings is stronger and team work has been necessary to manage the parenting of our parents in their stages of dismantlement.
The concept of a second childhood for Clem is so accurate: the prolific dribble, the lack of awareness of space and time, the need for reassuring touch, the dependence, the importance of good feeding experiences, the lack of ability to organise self, to go out alone, to manage money, and the unrealistic ambition; ‘How about a trip to Australia this year?’ or ‘ I fancy a swim!’
Surprisingly some of this new way of knowing my parents has given me secondary benefits in that I have become more obviously important to them. The spectacle of them looking out of the window for me when I arrive has been profound as my childhood was busy and time uninterrupted a great rarity. I have enjoyed the pleasure of simply being important through being there though I would wish the disease away if I could.
As I write Clem is now chair bound- hoists, nappies, wheelchair and commode are all a part of everyday life and he is now for the most part unintelligible. When he can be heard, it is in a mixture of concepts and words bearing no relation to each other except just occasionally. A typical mumbled sentence might be; ‘The milkmaids in shades you know coalesce strangely, matters, deserts in book stamps. Badly wounded is tomorrow.’ This will take a long time to gather and his eyes will alert you to the importance of what is being said with often a hint of a little smile at moments. I regard him as the oracle from the brown chair who must be interpreted! Not long ago he voiced; ‘I have a vision of a golden musical chord that joins everyone together with love.’ His inner world reminds me of capturing a dream in the cold light of reason and how absurd it seems once voiced. The twilight hours [5-7pm]are when stubbornness and a lack of reason dominates and his hands grip onto whoever’s hands are near with superhuman strength. I am reminded of this pre-bedtime span with young babies being difficult too. There is vitally still affection, genuine laughter and huge emotional intelligence in Clem’s eyes and an appreciation of those around him- whether stranger, friend or family member.
Juliet can briefly pass as unchanged before the impact of having no memory gets revealed and a diminished capacity to describe past events and experiences. She more often echoes what has just been said and yet ‘she’ is still herself. Much has gone but she is able to talk, read, listen, laugh, sing, and dance. Dance and choir groups for those with dementia have been enlivening and cheering for her as they combine with her instinctive earlier life abilities. Her memory of much of what has passed lasts just seconds. It is clear she wonders are her trousers going up or down and is she coming in or going out of the car. Her hair needed a wash recently and I gently reminded her of this. She said ‘Ahh, but do you know?’ [in a bright sharing a secret sort of way] ‘I find that if you do this…’ running her hand through the front tendrils of the hair on her forehead, bowing and pushing back her head as she did this ‘ It works just as well as washing!’ with a playful smile.
At one point Clem was refusing to cooperate with demands to get ready for bed. Juliet said to him, ‘You are being really dementiary and impossible!’ and he gently said to her ‘And you have Alzheimers’. Another time he hugged her lovingly and said with great sadness; ‘Something is happening to you and there is nothing I can do to help.’ They speak and show pain for the experience of the other and seek to comfort through a hug or touch.
My parents enjoy reciting; ‘ You are old father William’ and singing along to folk songs, hymns and carols [which I try to keep to Christmas time though what does it matter?]. ‘What shall we do with the drunken sailor?’ is one of Clem’s favourites as well as ‘Drink to me only’ which brings tears to his eyes. Such activities as well as being read aloud to and reading aloud have connected to their old sense of self and in turn us to them.
Clem regularly takes Juliet’s hands looking into her eyes sincerely and despite some words being hard to catch we often clearly hear ‘I love you so much darling.’ They sit together holding hands more often but if I ever appeal to Juliet for a deeper understanding of what Clem might be trying to say she holds her hand out exasperatedly and says, ‘ I have no idea.’
They are alone and yet together. An overheard snippet not long ago illustrates this. Clem to the top of the woollen covered hot water bottle on Juliet’s pillow; ‘Darling. You look so cosy lying there.’ Juliet from behind him; ‘I’m not there. I’m over here!’
Speaking on the phone to them can be a muddling experience at the best of times and occasionally they are on different phones together. I asked from where in the house they were speaking and Juliet said, ‘I’m getting dressed’ and Clem chuckling softly said ‘I don’t quite know where I am, I am afraid.’ Perhaps this statement says it all. Yet these times have been precious and valuable. I hope I have shown that these frightening diseases do not have to signal a life devoid of meaning or pleasure for those bearing them or for those around them. Now seems the right time to share these experiences before the cruelty becomes more apparent. The eternal present is all we are left with despite Erikson’s ideal of old age being a time of reflection and reconciliation. Dementia, to a large extent, through its jumbling’s with time, cuts through that aspiration. Yet I have found there is joy to be caught as it flies.
May 22nd 2017