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I was not prepared for the onset of incontinence, which those who have experienced it will know is one of the more demanding challenges that a carer has to deal with. Val became incontinent at the end of February 2001; this occurred almost literally overnight, one day she was perfectly able to manage matters for herself, as she always had, but the next day she was completely incontinent. Within two weeks I was in danger of disappearing under an avalanche of laundry, and was extremely tired. I 'put up my hands' and said I could no longer cope, and mercifully Val was admitted to Bath Royal United Hospital (the Neurology Ward) to give me some respite. something I had not had, or ever had subsequently under the auspices of the National Health Service (the absence of which remains a bone of contention for me). I felt guilty the whole time Val was at Bath; although her emotions had never been right from the earliest days of her illness, it was clear that she was, in her way, unhappy and did not want to be where she was – she did not comprehend she was in fact in a hospital. She wanted to be at home with her family. Although by now her speech was very limited she did say to me on several occasions when I visited her 'where is your car John?'. She was still able to understand that if she got into my car with me it would take her back to where she wanted to be (i.e. home.) In the two weeks that she was away I was able, as it were, to regroup and recharge my batteries. Fortunately, when I did bring her back home things went well. The incontinence pads and bed blankets all worked, and were easy to use. The hardest feature of managing incontinence is constantly clock watching and having to organise the daily routine in two hour chunks. I thank God that I was able to cope with her so that she was able to spend her last months at home untroubled and with her family.

By now Val had substantially lost the inclination to go on bicycle rides, and her piano playing was much reduced also. She had stopped playing Greensleeves and her other choice pieces, and her playing was confined to attempting whatever piece of music was open on the music stand in front of her, that is to say whatever piece Charlotte was playing at the time. The extraordinary thing about this is that many of these pieces were unknown to Val, but she had not lost the ability to sight read music, and would happily make quite respectable attempts at them for periods of one to two minutes. Although by now her short term memory had substantially gone, her long term memory and deeply imbedded skills were still in part at least intact. Her bicycle riding was replaced by walks in our garden, often barefoot, notwithstanding our many and repeated attempts to keep shoes on her feet. It is approximately a fifty yard trip around our vegetable garden and this circuit she would undertake quite happily many times a day. Se would gently touch the leaves on the shrubs adjacent to the vegetable garden while passing, sometimes picking off leaves which caught her eye. We would find neat little heaps of leaves deposited in the kitchen! She was usually reliable in undertaking this walk, although occasionally she would take a wrong turning which would lead her down the drive and out on the road, so I did have to resort on occasion to locking the front gate, and chasing after her.

Val was still well enough to accompany us on holiday at the end of August 2001. We were still able to manage a 'normal' holiday; Val's sister and brother-in-law accompanied us, and we took a suite which gave us additional space and privacy, as we had done previously. It was enormously satisfying that we were able to enjoy family holidays with Val, even in the advanced stages of her illness. She could still manage to play tennis with us, which obviously gave her pleasure. A highlight of summer 2001 was Guy's excellent examination results in his GCSE's, the most eloquent testament to the resilience of children in adversity. Sadly Val could not comprehend our son's achievement.

Early in October 2001 Val's eating and drinking declined sharply and alarmingly. Despite a gradual decline in her eating and drinking over the previous two years, her weight had remained remarkably static at around nine stone. It now started to decline quickly, almost daily, in fact. She seemed unable to manage more than a few 'swallows' after which food or drink would simply remain in her mouth and then 'reappear'. I did become quite skilled at coaxing her both to eat and drink, but despite my best efforts the decline continued. A consequence of this was that her bowel action became a problem. and we needed visits from the District Nurse to administer suppositories. By the end of October 2001 the only thing I could manage to get Val to take was a small amount of crumbled chocolate biscuit, fed to her with a teaspoon, together with a few sips of tea. Her previous routine of structured meals, albeit in small amounts but at normal times, collapsed. She now showed little desire to go with me in the car, although I still took her with me on our shopping trips to Devizes because I did not wish to leave her alone at home.

Fearing the worst, and desiring to keep matters simple, I sold Val's remaining investments and on 8 November 2001 asked her to sign the necessary documentation. Remarkably, she was still able to sign her name and understand the instruction so to do. This was the last occasion she wrote.

A huge deterioration in her condition was evident on the morning of Saturday 17 November 2001. When I got her out of bed in the morning to bring her downstairs for some breakfast, she could barely stand up, and could not walk unassisted. Her body tone seemed to 'have gone' in that she was very 'spongy' to the touch, but most alarmingly of all she was unable to hold her head upright; it hung on her left hand shoulder. She took almost nothing at breakfast, and I deliberated on whether or not I should give her her normal bath in view of her condition. However, I decided to go ahead and did manage the operation, although for the first time I had to lift her both in and out of the bath; she was like a baby in that had her head gone under the water she would have been unable to rescue herself and would undoubtedly have drowned. I got her back into bed and deliberated on whether or not I should call for assistance, but in the event did not. Val remained in bed the following day (Sunday 18 November 2001) taking no food and almost no liquid. She remained conscious, and continued to be aware of her family around her. She clearly said 'Charlotte' when Charlotte appeared by her bed, and said 'I would' when asked if she would like a cup of tea. She had to be supported in order to be able to sit upright in bed, and could barely take any of the tea in any form; we were reduced to trying to administer it by damping a clean finger in the tea cup and putting this finger in her mouth. The following day (Monday 19 November 2001) the District Nurse arrived and suggested that we do no more than moisten Val's mouth. That afternoon Val passed into what can only be described as a 'comatose state', that is to say she lost consciousness in the normal sense. Her skin colour changed to a rather unhealthy looking grey/yellow, and she remained absolutely motionless with her head on one side on the pillow. The right side of her lip began noticeable to drop, as though she had some form of palsy. She lay in bed like this for the remainder of that day, that night and the following day (Tuesday 20 November 2001). Her breathing became very shallow and short.

On the morning of Wednesday 21 November 2001 I awoke at approximately 5.40 a.m. fearing the worst. To my pleasant surprise Val was still breathing, the rhythm much the same as it had been for the previous thirty-six hours. I therefore thought she would live on, perhaps for at least another day, as the District Nurse had advised that it was most likely that she would die during the night. I relaxed and dozed for another hour until 6.40 a.m., my usual 'getting up time' to organise the children's breakfast, etc. One of Charlotte’s little habits had been to come into our bedroom and borrow Mum's hair brush to brush her hair at her dressing table before coming downstairs for breakfast. At about 7.05 a.m. she suddenly shouted 'come quick, Dad! ' I raced upstairs fearing the worst. Val had stopped breathing. She had died between 6.40 a.m. and 7.05 a.m., Wednesday 21 November 2001. It seems overly dramatic to say that she had died. A better description is perhaps that she had simply stopped living. She was in exactly the same position in her bed as she had been when I went downstairs at 6.40 a.m. - there had clearly been no final convulsion or any concluding event of any form. It was 2 years 7 months and 2 days from Monday 19 April 1999 when Val had been diagnosed as suffering from Pick's disease. She was 46 when she died.

The Epilogue

Val and I were 17 and 18 respectively when we met in 1972; we were married in 1977 and in our near 24 years of marriage we lived initially in London, with a year in America in the middle, and eighteen months in Paris and Brussels before returning to Wiltshire, whence we came, and were blessed with two beautiful children. I therefore like to think that Val can be said to have lived a full life, albeit a truncated one. I have come to understand that fulfilment in life is what really matters, not mere longevity. Pick's disease sufferers know no pain, experience no anguish and in Val's case (which I imagine is not untypical) are blissfully unaware throughout of their situation. Hers was a serene withdrawal from life. Moreover, Val will never experience a debilitating or decrepid old age. It is the loved ones, family and friends of sufferers of Pick's disease who have to stand by and watch helplessly the reduction of a once vibrant and healthy person as this dreadful disease takes its inexorable and merciless course.

Greensleeves was played at Val's funeral. The church was full. Her funeral was a dignified, memorable and special occasion.

It is now some months since Val died. Given how ill she was, and how long she was ill, I am surprised by how much I miss her. Even Pick's disease cannot extinguish the companionship of a much loved human being. Death is still very final I thank God for Val's life; may she rest in peace.