Anniversaries are strange old things. It makes no rational sense to get maudlin about them. Each day is just another date on the calendar. And yet. As one wise friend said to me, last week, they punctuate our lives.

In recent months, I have managed to get through our wedding anniversary, my birthday. Nick’s birthday and the anniversary of the day we became an item. Despite Covid and all its attendant prohibtions I have coped by keeping busy and and spending plenty of time with family.

Last Thursday marked the anniversary of Nick’s death in Lewisham Hospital at 9pm on 20 August 2019. I didn’t want to be alone at home in case I fell apart so I went to Cambridge overnight and had dinner with my elder son and his family. We toasted the person who was missing but otherwise simply enjoyed chatting and catching up with news. Just another day – and provided I’ve got plenty to do and think about, I’m fine. As Lord Hailsham once remarked long after the death of his wife in a riding accident: “It’s like losing a leg. Life will never be the same as when you had both legs but somehow you learn to get about with only one”. I’m blessed with plenty of  good crutches, loads of will power and lots of things I want to do – get back to a normal pattern of work, for example, once we’ve stopped panicking about this wretched virus.

The Alzheimer’s Diaries: a love story is 36% funded. It occurs to me that if every one of the lovely, generous 157 people who have so far supported the project were to persuade just two people to support it we’d be home and dry in an instant.  And that would be a fantastic way of marking the first anniversary of life without Nick.

https://unbound.com/books/alzheimers-diaries/

Photograph taken on roof of Newseum in Washington DC in September 2018, amazingly, just 11 months before Nick’s death

When we were first married we lived in a flat in Forest Hill and Nick worked for Lewisham Borough Council. Then he got a much better job – it paid £1,400 per year as opposed to the £1,000 he’d been earning previously. And no, I haven’t made a mistake with the noughts. This was 1970.

The Local Government Training Board was based in Alembic House on the Albert Embankment. Actor, Stanley Baker lived in the penthouse and LGTB employees got used to chatting to him in the lift. Today that penthouse is owned by Jeffrey Archer.

We knew from the beginning that LGTB was planning to move out of London and in the end it relocated to offices above the (then) new Arndale shopping centre in Luton and we moved to Wellingborough – removal expenses paid by LGTB.

Well it wasn’t the best of moves, really. The house we unwisely bought turned out to have all sorts of problems and was eventually sold four years later for less than we’d paid for it. Moreover, the job changed and Nick became very disillusioned because there suddenly seemed so little for him to do. It was like being literally redundant while still on full salary.

And that is quite stressful. The migraines Nick had always been prone to got worse and much more frequent. And it was always weekends.  He’d routinely spend either Saturday or Sunday in bed, more or less insensible with the curtains drawn and vomiting frequently. You can imagine how difficult this made family life. By 1976, when things were at their worst, I had a child of four and a new baby. No wonder my smoking shot up and my weight, for the only time in my entire adult life, dropped below 9 stone.

Then I had a brainwave. One Sunday afternoon at about 4pm when he’d just about reached the dry-biscuits-and-sips-of-water-stage – there was a definite pattern to these migraines – I sat on the edge of the bed and said: “Listen. We can’t carry on like this. Why don’t you give up the wretched job? I’ll get a full-time teaching job and you can look after the boys.”

He looked incredulous. “You’d really do that?”

“Yes” I said. “Provided we can go back south to do it – Kent, and near London preferably. I don’t want to stay in the Midlands.”

So that was what we did. I was appointed to teach English at Rowena High School for Girls in Sittingbourne in 1977 (having, for the record, finally given up smoking earlier that year).  We bought a house in the town and Nick became, for some years, a jolly efficient and capable “house husband”. A ground breaker – he was several decades ahead of his time.

What I often wonder now, is has anyone ever done any research into migraine and Alzheimer’s? Both are brain conditions after all and Nick’s migraines were pretty spectacular although they occurred less regularly after we moved and as he got older.

Please support crowdfunding The Alzheimer’s Diaries: a love story if you haven’t already done so and pass this link on to as many others as you can. Spead the word and all that. https://unbound.com/books/alzheimers-diaries/

Photograph 1969. Claude was our first cat.

It must have a summer Saturday afternoon in 1995 or 96. Temperatures were sky high and Nick and I thought we’d pop across to the Isle of Sheppey, a short distance from Sittingbourne where we then lived. The plan was to do one of our favourite walks from Harty Church across the nature reserve to Shellness, loop inland  past Muswell Manor and back to the car through the hare sanctuary area.

It wasn’t to be. Every inhabitant of North Kent (it seemed) was heading for the beach at Sheerness and the very long, slow queue for the bridge onto the island put us off. So we peeled off to the left and headed for another favourite walk which starts and finishes at Upchurch.

We had the car windows wide open because it was hot and air conditioning was not standard then. Along the lane we passed, a few feet away, a glorious field of flax in full, bright, azure blossom its sweet, floral scent almost overpowering “What a fabulous smell!” I said.

“What smell?” asked Nick. I could hardly believe it. In fact I thought he was winding me up. When I’d got my incredulity under control he added “Actually I don’t think I can smell much at all now. I’ve been noticing it for some time. And it means I can’t taste much either”

“Well” I said flippantly. “If you have to lose a sense I suppose it’s better than sight or hearing”. I was more amused and exasperated by it than anything else. But from then on it was a problem, albeit a fairly minor one.  A few months later I got home from work to find the kitchen stinking of burning. When questioned Nick, explained that he’d made toast for lunch. The slice of bread got stuck in the toaster but he hadn’t noticed it until he saw smoke. Blimey. Put smoke alarms in pronto.

Nick’s grandfather – who lived lucidly into his 80s and died of bowel cancer – lost his sense of smell too so we assumed it was hereditary and I don’t think it was ever mentioned to a doctor.

If, these days, anyone mentions anosmia – the medical term for loss of sense of smell and taste – my heart plummets because it’s a recognised early symptom of Alzheimer’s (as well as being, coincidentally associated with Covid19.) Of course, back in the mid 1990s I knew none of this and just thought it was a bit of an inconvenience.  Would it have helped Nick (or me) to have had this information 25 years ago? No. There is no cure for this disease. As it was, he had the certain knowledge he had a terminal illness for only 28 months which is preferable to a couple of decades, I think.

On the other hand, there is a lot of talk about, and research into, early intervention these days. But I’m still not convinced that it would do the patient’s mental health any good. So If I hear of, or meet anyone, with anosmia, I say nothing.

Please support The Alzheimer’s Diaries: a love story which describes the illness and its effects if you haven’t already done so – and share the link with lots (and lots) of other people! Crowd funding stands at 35% at the time of writing.  https://unbound.com/books/alzheimers-diaries/

Elkin family around 1955. Nick front row, left. His grandmother, Elsie, to his immediate left.

When Nick and I first got together properly in 1967 and it was clear to both of us almost from day one that this was “for keeps”, I had – of course –  to meet his extended family.  I’d known his parents for some time and had met his cousin Bernard several times. Beyond that it was all a new adventure and gradually, household by household, I was presented and welcomed. In those days nearly everyone lived locally which made it easier.

He was under some pressure from his parents to take me to see his paternal grandmother, Elsie Elkin, so in the end he did. I’ll call here “Elsie” her for clarity although Nick called her “Nan” and I don’t think I got as far as calling her anything.

Nick’s grandfather William Elkin, who was a generation older than his wife, had died when Nick was still in short trousers so by 1968, when we got engaged, Elsie had been widowed for twelve years or so. She had gradually gone “senile” (note how the vocabulary has changed in 50 years) and had been assisted into her care home by Nick’s father George and his Uncle Roy. There were lots of rueful stories about how she’d frequently left the gas on and other worrying things so that in the end they’d decided she was no longer safe to live alone, although she was still relatively young.

The care home was in Lee High Road in Lewisham and Nick was very reluctant to take me there but we went – twice, I think. Elsie had been told in advance that her eldest grandson had got engaged and when Nick said “This is Susan and we’re engaged” she smiled and seemed to understand but it was very hard work. I was still a naïve 21,  had no experience at all of dementia and had never before been inside a care home. Poor Elsie sat slumped and helpless in her chair. It was pretty upsetting and Nick really didn’t want me to see it. Both our visits were short.

Then Elsie deteriorated and had to be moved to a different care home – this time to one known to everyone in the borough as the place you really didn’t want to go not least, I think, because the building had once been a workhouse and there were people around (my own grandfather, for instance) who could remember that. Nick visited her there from time to time but refused to take me with him – a mixture of embarrassment and gallantry, I think.

Elsie died in 1970, a year after we were married. Her death certficate is vague because, 50 years ago, diagnosis was much less precise. It hints, however, at what we would now call vascular dementia – and that is unrelated to Alzhemer’s Disease although some of the symptoms are similar.

And this is what I continually remind the family when they mutter worriedly about Alzheimer’s being genetic. The only person we can find in Nick’s ancestry over the last few generation who had dementia was Elsie and hers was a different illness. His parents were mentally fine into their eighties (almost 90  in his father’s case) as were his other three grandparents and, as far as we know, great grandparents.

So it seems that wherever Nick’s Alzheimer’s “came from” it wasn’t in his genes. As I used to say to him – when he was well enough to understand what was happening and to complain – in his case, it was just sheer bad luck. It’s like the unfortunate man or woman who has never smoked or worked/lived in a toxic environment but who gets lung cancer anyway. It happens but that doesn’t make it any easier to cope with what feels like the injustice of it. Maybe Elsie, in the early stages, felt the same way.

Please help to crowdfund my book about all this if you can http://unbound.com/books/alzheimers-diaries/

Nick and I were married for 50 years. Till death do us part and all that. In fact I’d known Nick for seven years before we were married and I thought it might be fun to share that background as part of the backdrop to The Alzheimer’s Diaries: a love story.

 In 1962 the church youth club was central to my life. As a pupil in an old fashioned all-girls’ grammar school, the youth club was the only place I met boys of my own age. So it was an excuse to “doll up” although I don’t think anyone uses that expression any more.

I was 14 when I first saw Nick across a room in someone’s house at a sort of subsidiary gathering pertaining to the youth club. A weedy, thin 16 year old in a check sports jacket,  he’d come along with a school friend. Like most of the boys at the youth club they attended the nearest equivalent grammar school to ours.

Actually Nick was very keen on another girl and for several months he and she seemed to spend every spare minute wrapped round each other – he, mostly in the brown mock leather bomber jacket he wore to ride his trusty moped. Eventually that relationship ended and because I had also, meanwhile. had a little adolescent fling which had ended in tears we had something in common. Nick started dropping in at our house and gradually we became friends – but that’s all it was for several years, although we were bonded by classical music from the very start and often went to concerts or listened to records together.

“Did you say that boy’s name is Elkin?” asked my father, one evening after Nick had left.  “I bet he’s the son of George or Roy Elkin. My brother and I were very pally with them before the war. We all went to Scouts together.”

Sure enough, it turned out that Nick was George’s son. South London is just a village really. Years later, once Nick and I were a proper item we got them all in one room and then crept away and left them to their reminiscing. And of course, thereafter they became friends all over again.

It wasn’t until 1967 that things changed between Nick and me. I blame the grey Morris Minor he bought that spring. He needed somewhere to drive his pride and joy to and what better than to visit his old friend, Susan, who was by then at college in Chichester? He came almost every weekend and by the time the summer was out Nick and Susan were on rather a different footing …

We married in March 1969 after I’d completed my training, come home to South London and got a teaching job. It lasted for 50 years and five months. We celebrated (sort of) our Golden Wedding anniversary five months before Nick’s death in August 2019, over 57 years after I first clapped eyes on him.

And he remembered all this almost to the last too even when he was almost incoherently oblivious and often didn’t know who I was. A couple of weeks before he died one of the nurses at the hospital asked where we’d met. “In a church youth club” I said, turning to Nick in an attempt to include him. “Do you remember the church youth club, Nick?”

“Of course I do” he snapped back crossly as if I’d asked the silliest of questions.

Image is Nick (back row, far right) in an Alleyns School athletics team at about the time I met him.