Jane and I met at University in 1978, and married in 1980. She was smart, funny, gorgeous, incredibly organized, a wonderful wife and partner to me and mother to our four children when they came along. She was a voracious reader and had a fantastic vocabulary, and was always keen on using the correct word – no sloppy language in our household! So when in 2017 she was increasingly frequently making small word mistakes – ‘afternoon’ for ‘weekend’, ‘door’ for ‘gate’ – I knew we had a serious problem, and the little hints we had seen in 2015/6 were not just ‘getting a bit old and scatty’ but had been the first signs of a very dark road. She was finding work harder, and so gave up at the end of 2017. In 2018 we sat down and talked about it, and she knew she was having memory and concentration issues, so we started the long path of finding out why.
We only got formal diagnosis of Alzheimer’s pathology in summer 2019, and even that was only because I had volunteered us both for a clinical trial so we could ‘jump the queue’ in getting CSF biomarkers done. But by then the decline was so obvious that no diagnosis was needed.
After that one, harrowing discussion in March, and a couple of subsequent clinic visits, we did not talk about Jane’s diagnosis at all. We stuck together, as we had done during tough times before, and I think it was enough for her to know that she had a family around her, and for me to know that I could be there. The letter in 2019 formalizing her diagnosis upset her hugely – by then she no longer really realised that she was ill. So after that I just avoided the topic entirely. She seemed quite content for me to take over household tasks. There was a bit of a tussle over driving, but that passed, and we coasted along quietly (well, mostly quietly) as if it was perfectly normal for me to be doing everything, giving her medication, cooking dinner, holding her hand round the supermarket and so on.
She had been an accountant, a profession requiring excellent memory and logical skills, so that was off the table. She loved playing Bridge, reading (especially murder mysteries), and walking. Declining memory ruled out Bridge, and lockdown stopped the walking groups and any other social activity we could have gone to, so her last years were of quiet routine around the house. Reading gradually declined from novels to articles to isolated paragraphs to random words on street signs, but she never lost her passion for the written word – some of her last words were reading the sign above the sink in the ICU seven or eight times.
We were very lucky in living in a spacious house on the edge of the country, so we could go walking any time, and did. And she was still physically fit, so we were able to cope at home, a place she felt was familiar even if by the end she could not remember where the toilet was. She was at our family home until just 18 hours before she died in the ICU after a massive heart attack.
It seems so mundane and bland now, as if I just left her to decline. But the reality is that there is nothing you can do – even the new wonder drugs have a very small effect, and only very early in the disease, and have not been tested for YOAD or any of the other rare dementias. Everything else was “just” managing life so Jane was, or at least seemed to be, comfortable, happy, unstressed.
As a still-working scientist, creativity for me is having an idea, working it out in all its details and implications, and then seeing if it is ‘right’. Rather different for chemistry and music, but the same basics apply. I don’t think “having a great idea” is the essence of creativity, it is just the start. Building that idea into something, whether it is a completed song or a consistent scientific theory, is real creativity.
Jane was not particularly interested in creative pursuits for herself. She could be amazingly creative, such as when she made an entire ‘Tracey Island’ birthday cake for one of our children, or came up with quick, simple, cheap and effective costumes for their school projects. But she never did that for herself; she was happy for me to do science stuff if it made me happy (and brought in an income), she had other satisfactions in life.
I have loved music and singing for as long as I can remember – another thing Jane and I did not share, as she did not like singing in public at all, and the most she would do is sing along very quietly to songs on the radio if she thought no-one was listening! She even got embarrassed if I sang along in the car when she was there. In 1995 I took up playing the guitar, in 2004 or 5 did my first song. As a typically middle-class white Englishman of a certain class, I found talking about what I feel hard, but putting those feelings to music allowed me to tell them, at least to myself. (I have become better at non-musical expression in recent years – needs must – hence writing here.)
I was never really into poetry. Old-fashioned poetry that rhymes and scans I can enjoy, blank verse leaves me, well, blank. So my attempts at poetry are really all doggerel lyrics to go with songs. The one exception was ‘Thinking on Our Wedding’
The first two lines of this just popped into my head one day. I think I was looking at old photographs, and remembering how much we had meant to each other, how Jane had been my constant partner, more-than equal, best friend for 40 years, and was now just a shadow of that smart, kind, wonderful woman. We had stood up in church in front of our family and friends and promised to be with each other “in sickness and in health”, and we both meant it. Now sickness was here and of course I would stay beside her, but was she really here still? That is what I tried to capture.
By early 2018 it was clear to me that Jane has a progressive neurodegenerative disease, probably Alzheimer’s. This was 18 months before the doctors confirmed this, but as a biomedical researcher I knew the illness and as Jane’s partner for 40 years I knew what ‘normal aging’ would be for her, and this was not it. And I thought ahead to what I could do for her, and basically there were only two things.
One was – of course! – to look after her as best I could, take over the tasks she could not do, make her life as stress-free as possible, rearrange her world around her to suit her needs, and chase the medical profession to do the pitiably little that they can. The second was to ‘be her memory’, to remember for her and remind her, by stories or photographs or visits to our family, of our life together. And that lead me to write “I will recall it for you”, which is full of specific memories from our lives together from meeting in college to caring for her in the late stages of her illness. I never played it to her, because the end is about the reality of later-stage AD and that was the last thing I wanted her to think about. But it was what I was thinking.
Free time? Hah! I still work, as my work is my passion. I split that time between academic work with a wonderful group of people round the world, in the USA and UK, and my start-up company, which is seeking to discover drugs to treat the diseases and disabilities of old age. I would love for us one day to develop a new treatment for Alzheimer’s. Alas, the path to new drugs is littered with failures, but it is worth trying.
For carers and those living with dementia alike, I would say “grab any help you can”, and not just formal sources of help either. I have found people wonderfully kind and helpful, everyone from my wonderful children to our neighbours to random strangers on the street or in the supermarket. I found a great self-help group in early 2020 for people caring for someone with young onset dementia. Although Jane has now died, I still go to them, and it provides a space where we can be honest about the day-to-day. And it is day-to-day-to-day-to-day, it seems like it will never end. If you try to shoulder this burden alone it will crush you both. As my son said (with characteristic honesty) “Look after yourself, Dad. I don’t want to end up looking after Mum and you!”
The common theme in looking for professional care for young-onset dementias of any sort is how little there is of it, and how disconnected. Care homes are built around the assumption that anyone with dementia is over 85 years old and has limited mobility. Jane was 64 when she died, and a week before she and I had walked into the village and back one morning, more than a mile over the fields. You have to make it up as you go along.
And this is really hard, but try to remember what good times you have, and not focus on the yelling or the tears or the sheer idiocy of it all, or the loss. A good day, one where your loved one is (mostly) contented, they get their food, take their medicine without complaint, wash, get out for a walk, they smile at you and you at them; that is a win. Treasure those days, and the memories of better times.