‘MY HUSBAND DOESN’T RECOGNISE ME’
How would you cope if the love of your life didn’t remember you? Deborah Gray shares the moving story of her husband’s early-onset Alzheimer’s
One woman reveals the effects of her husband’s Alzheimer’s
I’m sitting in the car park overlooking the Wiltshire countryside, taking deep breaths, as I do every time after visiting my husband, Atherton, in his care home. Sometimes he refuses to look me in the eye. Other times, he is asleep. But on today’s visit, I was relieved there was a little bit of life behind his dementia-dimmed blue eyes.
‘Does he know you?’ people always ask. The answer to that is, I don’t know. I am someone familiar, but he doesn’t have the capacity to understand more. My stomach churns and disbelief hits me each time I am asked. We were a partnership, he was my soulmate and now I am alone, grieving like a widow, but I have to go time and time again to visit the empty shell of the man and to be reminded of what I have lost. I am unable to reconcile this fate for such an enigmatic and articulate man, who has lost all that made him, well, just him.
I often think back to the summer of 1983 when we first met. We were introduced by a good friend who lived in the same doctors’ residence as Atherton at East Birmingham Hospital. On our way to his room, I was warned that he was ‘far too clever’ for me. Puccini was playing too loudly in the background as he greeted me with a charming smile. I was smitten. I was 25 and worked for a publisher as an editorial assistant. Almost instantly, I knew that I had met the man I wanted to spend my life with.
A few weeks later, Atherton moved to London, where I lived, for a new job. We found that we loved doing the same things: concerts, visiting art galleries and going on wild, windy country walks on the Essex coast. He made me feel excited and alive, something that never changed during all our years together, until this terrible illness struck.
When he proposed, I said yes immediately and we married in May 1985. Our daughter, Katherine, was born in 1988 and we were both overwhelmed by our capacity to love this fragile little being. Our son, Alasdair, followed three years later, and we felt exactly the same. By then we were living in Wiltshire, where Atherton was a consultant haematologist. His job was very demanding. In those first years, he was on-call every other week, 24 hours a day, seven days a week. At weekends, he was either on-call, recovering from being on-call or about to be on-call. I fitted freelance work as a book editor around the children.
Being a father released Atherton’s spirit. He took the children to the woods near our cottage and made dens out of fallen branches. We would go to the pub for a ‘thank goodness it’s Friday’ drink and he’d drive down a track, wind down the windows and make the children listen to the sounds of the night while telling them scary stories. Of course, they adored him and he found (almost) everything they did wonderful.
My husband was most alive and most himself when we were on holiday. He discovered his love of travel as a student, when he took the hippy trail to Afghanistan. He loved exploring and could never be deterred by the elements. Consequently, the children have memories of being dragged around sun-baked ruins in Sicily, of wind-whipped mountain hikes in Wales, of nights in tents listening to coyotes in the Rocky Mountains and icy new-year swims in Croyde, Devon.
THE WORST DIAGNOSIS
Life with Atherton had been one big adventure, but after the children left for university, I began to sense that something was different. No longer did he suggest spontaneous weekends away. He often seemed absent and spent more time in what I called ‘Atherton world’. I felt as though our deep personal connection was lost. I wrote him a letter saying that I thought our marriage was worth fighting for. He simply agreed, but didn’t appear motivated to do anything about it. I braced myself for the worst.
I understood that the problem was not about our marriage but something more sinister, when he drove around a roundabout three times while returning home – it was the route he had used daily on his commute. ‘It’s dark and confusing,’ he said dismissively, but I felt frightened. The forgetfulness didn’t stop there. He would forget social arrangements, pop to the shops then forget what he went for, and dig up plants that I had asked him
There is little left but precious memories of the man I married
to prune! I began to write a plan for the week, then daily. Atherton was just 62 and newly retired. Both myself and the children tried to connect with him, but we were batted away. The GP suggested it might be depression, which can also involve memory loss, and we clung to that hope.
In 2016, I took Atherton to see an old colleague, who diagnosed early-onset dementia. He was 64. We drove home, he in silence, me reminding him that we were in this together. I felt disembodied. The tears came later when I was alone. I screamed, too. I remember pulling the car off to the side of a road, raging with fear for our future and at the injustice of it all.
I knew little about dementia back then. I thought that Alzheimer’s was about loss of memory, which is true. What is more disturbing, however, is the disintegration of the entire person and the loss of their life skills that it causes. Sorting plate sizes became a challenge for Atherton, as did putting a glass directly under a tap. He lost his concentration and dexterity: no more cycling club, no more handwriting.
We are not alone. Early-onset dementia affects about 42,000 people under 65 in the UK – about 5% of the 850,000 people living with dementia – a figure expected to rise significantly in the future. There is some evidence to suggest that this form of dementia progresses more quickly in younger people. It can be a particularly cruel form of the disease, which shunts both the person affected and their partners into old age long before they are expecting it.
I tried to keep life as normal as possible for as long as I could. We embarked on several journeys that people thought were crazy. Atherton had always wanted to see the golden temples in Burma, and he did. I took him to Mexico, where we lost him for several nightmarish hours. But I was determined to keep going, and together we explored Belize. I was more vigilant, however, like a mother watching over a toddler. I constantly felt as if
I was either patronising or humiliating him and I hated it. Our children, along with Katherine’s husband, Mike, wanted one last family holiday, so we took Atherton to India, the country we both loved best. It took all four of us to keep him safe, but he enjoyed every minute.
By January 2019, I wasn’t sure if Atherton knew who I was any more. He was barely able to speak and doubly incontinent. I hit crisis point and could no longer look after him at home. I started paying £1,000 a week for him to stay in a care home so that he could have the round-the-clock support he needed. I was physically and mentally exhausted, but I still struggle to live with the guilt and sadness of making that decision. Fortunately, the care home is brilliant: it’s new and clean and staffed by wonderful, empathetic people.
It’s hard to hold on to yourself when your relationship is dissolving around you. I felt helpless and hopeless, but I knew that I had to act to stop myself becoming collateral damage. Over the summer before Atherton went into care,
I began to lose my zest for life as I felt my identity drifting away from me. I was scared and my children were becoming increasingly concerned for my wellbeing.
A NEW WAY FORWARD
I have always loved learning, so determinedly, I signed up for an MA in Travel and Nature Writing at Bath Spa University. It has taken me out of my comfort zone and has taught me to see and articulate the world more clearly. I truly believe the course has saved me. My hope is that I am embarking on a new career and this is giving me focus for the future – at 61, I’m not ready to retire yet. I’m feeling much more positive despite everything.
I visit Atherton weekly, and each time I show him a few pictures to remind him that I was part of his past. It is heartbreaking seeing him so frail now; he suffers from seizures, which cause him to fall. He often drifts off to sleep as I talk to him. There is little left but precious memories of the man I married.
I am not in another relationship and am not looking for one, although I haven’t ruled it out. I am not ready yet and it would still feel like a betrayal. I also think I would be frightened of the same thing happening again.
My family has become involved with the Alzheimer’s Society Fix Dementia Care campaign. Last summer, we lobbied MPS in Parliament and we are working on an animation based on our experiences. There is no clinical or social pathway through dementia and we pay thousands every month for the care of a man who gave his life to the NHS. I am younger than most Alzheimer’s spouses and feel the need to speak out for those who can’t. Atherton would expect no less of me, so it’s important I do this for him.
Now that I have come to terms with him being in a home, I am almost pleased that he doesn’t feel a deep bond with me any more. He doesn’t miss me or find it painful to see me walk away after each visit. He is calm and content. I am trying to view this as a gift to move forward in my life, albeit without the man I love. He may not remember our adventure-filled life, but I can, and I will treasure those memories for ever.
To find out how you can help, visit alzheimers.org.uk