the friend online
21 November 2008

Dementia: my worst nightmare

Shelagh Robinson discusses the changes she has been noticing

John Lennon wrote that ‘Life is what happens to you while you’re busy making other plans’. I hadn’t exactly been making plans but as my seventieth birthday approached I had thoughts of how the future might be. My work as a counsellor is work in which age and experience is a plus and I looked at the many wise counsellors I know who are in their seventies and eighties and hoped I might emulate them.

I have always been drawn to Jung’s writing on old age and the task of the old woman to pass on memory and wisdom; I looked forward to that possibility too. I have eight grandchildren and I looked forward to their continuous presence in my life and maybe even becoming a matriarchal great grandmother. One of my own grandmothers had lived healthy and alert into her ninety-ninth year. Perhaps I would too.

The work I have been asked to do amongst Friends has been stimulating and fulfilling and I have felt of use to the Society and hoped to be again. After years of health problems resulting from a serious road accident, I was physically better than I have been in years. Spiritually I was in a golden time, connected to God in a way that seemed to deepen almost day by day.

There were difficulties in my life – whose life is ever free of stress? But life was so good and I was so blessed.

And then I got lost.

Driving home from a visit to my daughter on a simple route I know as well as any I drive, I found myself in a place I didn’t recognise with no idea how to return to the road I needed. It was a terrifying experience, driving in the dark along unknown country lanes, through darkened villages I had never heard of and with panic rising. But when I eventually found the road I blamed inattention and stress – there was a lot of stress in my life at that time and to make stress the reason made sense.

There began to be a pile up of small incidents that puzzled me. The entry to my house is not by a key but by a keypad that needs a four number code and time after time I couldn’t remember the number and had to ring the bell to be let in or sit outside and wait. I started carrying the number about with me – and forgot I had it in my bag. My electronic diary became a nightmare as I double-booked appointments, arrived at Woodbrooke for a meeting when I should have been at Friends House and couldn’t decipher the name of the person I was meeting as my keyboard skills were failing steadily. From a fast and accurate touch-typist I became someone writing gobbledygook, yet I consoled myself that I could still do Sudoku and the Guardian quick crossword and when listening to Round Britain Quiz at 4am after hours of sleeplessness I answered more questions correctly than the teams. I was as effective a therapist and trainer as I had ever been. Somehow the channel of empathy was clearer and deeper, though I often called my client by the wrong name and had to explain that this odd quirk was just something that happened to me. No one seemed bothered when it happened. The clients kept coming – recommended by former clients –and the feedback on my work both as a counsellor and a facilitator continued to be positive, although it was pointed out to me that in one of my handouts Hildegarde of Bingen had moved to Nottingham and become Hildegarde of Bingham.

Then came a new loss. Not only did I not remember numbers but I was losing the ability to use a calculator or do the simplest sums. Not completely – some days I was fine – but more often than not I couldn’t do any sort of arithmetic. The TV remote control became a complete mystery. I would randomly press buttons until, hopefully, I found the right one – or more often didn’t. I would forget a telephone number halfway through dialling it.

I noticed in myself a new aimlessness. Bathing and dressing took longer and longer as I left one task after another half completed and had to remind myself where I was in the process. Feeling uncomfortable under my clothes, I discovered I was wearing three sets of underwear.

In the mornings I would switch on the computer to read my emails, but leave my desk before I had done so, go upstairs to make the beds but get sidetracked and start sorting clothes for the charity shop instead. I frequently left callers hanging on the telephone while I went to get my diary to confirm a date only to come back an hour later to find the phone still off the hook and wonder why.

Eventually there were so many things that I knew I needed help and I paid my first visit to my doctor. Because of my medical history there might be simple explanations for what was happening, or so I hoped. I continually reminded myself of the effects of stress and, as the mother and grandmother in a large family as well as a carer for my own mother who has vascular dementia, there was lots of stress about.

But as I failed psychological test after test it became clearer and clearer that what I had hoped was specific was in fact global. Perhaps the hardest thing was seeing and hearing the compassion of the young doctor who administered the test. I have heard that tone in my own voice and the look in her eyes was one I imagine has been in my own eyes as I joined with a new client on the first steps of a painful journey.

Yet this, my worse nightmare, something I have always dreaded, having had two experiences of closely caring first for a dear Friend and then my mother as they became more and more impaired, was not, at least not yet, what I expected. Or, perhaps more accurately, my response is not what I expected. There are so many things I cannot do or often cannot do. I ask a stranger at an Area Meeting attenders day what Meeting she is from and find it is my own and we have sat for weeks together in worship.

Telling a dear friend what was happening I found myself soothing her storm of tears and denial and was able to say: ‘It really is all right’.

The essential Shelagh is unchanged. I watch what is happening with interest – sometimes it is even funny. I am enfolded in love; the love of my beloved family, the love of my friends, both in and outside the Society and most of all the love of God. Love so immense it shields me, strengthens and grounds me.

I had expected fear, yet there is little, as yet anyway. I am no more of a saint than I have ever been and sometimes the air is blue as I realise that yet again I have got my diary in a muddle and the third lot of burnt toast gets winged across the kitchen, But there is a peace too.

I recognise that mystery is part of what is happening. A mystery other than my changing condition. Four times in recent years I have arrived at Woodbrooke to do a piece of work at a time of crisis in my life and in need of support. The first time I was mortified, the second, even more deeply embarrassed to be there again and troubled once more. The third time I began to wonder at the pattern and the fourth time, three days after I had seen my consultant, I realised that Woodbrooke and the people there who love me were exactly what I needed as I began to accept the reality of my changing condition. I am not only a humble learner in the school of Christ but a slow one.

I ‘hear voices’ but not the voices of delirium or psychosis. The words I hear are: ‘Be still and know that I am God’. Entering that stillness almost with the sense of a gentle hand on my head, I do know.

I hear: ‘Be still and cool in thine own mind’ and as I strive for the still cool place I do indeed find ‘the God at hand’. As I see ahead of me the possibility of a valley of great darkness, I hear the voice reminding me: ‘I will be with you and comfort you’ and above all I hear: ‘All shall be well and all shall be well and all manner of things shall be well’.

Alzheimer’s Society

Shelagh Robinson


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Barbed clipped
Oliver Robertson
News round-up
Excluded from your Meeting?
Eric Rigby
T’ain’t what you do – it’s the way that you do it
John Anderson
David Boulton & Rhoda and John Wharton
Dementia: my worst nightmare
Shelagh Robinson
Quakers and art
Angela Schütz
A year of chilling out
John Calvi

Things to do, where to stay, people to see etc...

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