She was my everything but she couldn’t remember marrying me --[Reported by Umva mag]

I was immediately struck by Mima’s presence and her beautiful smile. 

It was the early 1960s in Hong Kong and I’d been set up on a blind date by my colleague who had a single sister he wanted to introduce me to. 

Despite my bank forbidding overseas staff from marrying on the first tour of duty, six months later we married in secret. 

I lost the job, but got the girl. 

But now here I was, in 2017, silently walking out of the memory clinic.

Mima and I had just been told that she had late-onset Alzheimer’s disease – the most common type of dementia– and I was, frankly, in a state of shock.

If I was honest with myself, there had been increasing signs for a number of months that all was not well.

Back in the summer of 2016, Mima started forgetting the seemingly small things, like her age or whether or not she’d had a meal. She’d also forget arrangements we’d made for visits.

It didn’t strike me as something to be concerned about immediately – but there were gradually bigger changes too.

Once someone who’d never missed an anniversary or important date, now she no longer seemed to remember how long we’d been together or able to recall her married surname – and we’d been married for 52 and a half years at that point. 

Mima had also always loved the cinema. She would know plots and characters inside out, often guessing how a film would end before the action had really begun. Now she suddenly began asking who a character was in the middle of a scene.

It was so unlike her.

Becoming increasingly concerned about my wife’s failing memory, I arranged an appointment with our GP, who then referred us to our local memory clinic in early 2017. I don’t know if I, or the GP, suspected Mima had dementia at this stage, but I was worried it could be.

Mima went through a cognition test. They started off with the usual questions – ‘Can you tell us the date?’; ‘Who’s the prime minister?’

Mima was also asked to do practical tests, like drawing a clock face and then adding a certain time on the clock. She drew a somewhat distorted clock face, and the hands were in the wrong places.

After these tests were completed, we received a formal diagnosis – the delivery of which left something to be desired.

‘Mima has late-onset Alzheimer’s disease,’ said the memory specialist, bluntly.

For me, it was a bolt out of the blue. Although I was sort of expecting it, to actually hear it out loud was such a shock. I wasn’t very well prepared, and I didn’t know what questions to ask.

Mima, meanwhile, showed no reaction.

Before I’d even had time to process what was ahead of us, we were sent away with a few leaflets.

In the weeks that followed, Mima began to have hallucinations. She’d hear voices, see figures in the room. The hallucinations made her upset but she never seemed seriously distressed by them.

I started off by letting her know there was nothing there but that didn’t seem to help. After I read the information that Alzheimer’s Society has about hallucinations, I learned not to challenge Mima and instead reassure and comfort her.

Mima also had disturbed sleep and confusion over time of day. 

For me personally though, the hardest thing to deal with was that she no longer remembered my name nor our relationship.

We had shared such a wonderful life together and it broke my heart that she couldn’t remember it.

We adopted a daughter after a series of miscarriages, and seeing that little girl grow up was the best experience of our lives.

Now this illness was taking all that joy, all those memories from her. It seemed so cruel.

And yet, Mima never lost her smile, her sense of humour and her interest in everyone she met.

Over the next seven years I watched Mima‘s Alzheimer’s progressing like a descending staircase where her symptoms would plateau for a while and then take another step down.

Gradually she lost the ability to read, to cook, to wash and dress herself, and to use cutlery. Her speech deteriorated and her walking became more and more impaired and restricted.

Saddest of all, after her long-term memory reduced to the recalling of her family’s war-time experiences in Hong Kong, it evaporated entirely. She seemed to have no memories at all.

Things were incredibly difficult at times –and that was only made worse by our extremely poor experiences of care and support services.

The first carer we had was very good but she moved on after six weeks. Following that, the carers were changing every month or so. This meant that Mima wasn’t comfortable with them and so she became more difficult.

It’s why, after a few months, I’d given up on paid carers completely and instead devoted myself to caring for Mima full time.

I took on Mima’s personal care and did all the cooking. I was doing everything for her, but it meant we could keep our routine and do things on our own schedule.

Fortunately, that’s when Alzheimer’s Society stepped in and supported Mima with day-care once a week.

Following a new care assessment, social services were able to increase day-care support at a council facility to two days a week.

These days became a real lifeline for me and gave me some respite from my 24/7 caring role – I wouldn’t have been able to carry on without it.

But even when they weren’t there in person, I found Alzheimer’s Society’s online Dementia Support Forum extremely helpful – it became a space to find advice and exchange experiences with other carers.

If it hadn’t been for the Society’s face-to-face carers support groups, I do not know how I would have coped.

Sadly, in March this year, just before her 88th birthday, Mima was admitted to hospital as her legs could no longer support her. And over the next two months I watched on, helpless, as she continued to decline.

Her appetite slowly diminished until she was no longer eating or drinking anything. That’s when her consultant had the heartbreaking conversation with me that Mima was dying.

‘It’ll likely be a matter of days,’ they said.

It wasn’t unexpected – when she stopped eating and drinking, I knew it was a sign the end wasn’t far off – but to hear the words was a big shock.

Just as we had been together throughout our marriage, I spent every day of those two months by her side. I even stayed overnight to hold her hand during those last few days.

By this time, she could no longer speak and could communicate only by looking at me. We’d been together for such a long time, and I knew how she thought. I was there to try and give her as much comfort as I could.

And so it was, five days after that conversation, that Mima died peacefully in her sleep – three weeks shy of our 60th wedding anniversary. 

As heartbreaking as Mima’s passing was, it was also a relief for both of us.

She looked so peaceful and I am thankful that all her suffering and confusion has ended. 

Those seven years gave me plenty of time to prepare for the inevitable outcome, and now I am able to move on to the next stage of my life. I plan to travel, to take up some sports and social activities, and generally do what I feel like doing when I want to do it.

But I will (and do) miss Mima every single day.

That’s why I am taking on Alzheimer’s Society’s London Memory Walk, on Sunday 6 October, in Potters Fields Park in her honour.

It is no exaggeration to say that I had to watch my beloved wife slowly dying before my eyes. She was robbed of her cognition, her abilities, her mobility, her speech, and some of her personality, bit by bit. 

Yet despite dementia being the nation’s biggest killer, research remains underfunded. Events like the Memory Walk are essential in raising funds for the research into that elusive cure.

It’s too late for Mima to benefit, but it might just save someone else.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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