Despite her advanced Alzheimer’s, the woman I love is still in there

My darling wife Lorraine can no longer walk or talk and is doubly incontinent. She now lives in a hospital bed in our Surrey front room. And yet, despite the fact that Alzheimer’s disease has taken so much from her, the woman I fell in love with is still there. Lorraine may not recognise me – sometimes she looks at me, and doesn’t even see me – but she still giggles at the sound of my voice, and smiles when I play our favourite classical music, the Adagio of Spartacus and Phrygia from Spartacus. We are both now 77 and ours is a love story that has lasted almost 60 years.

We met on a New Zealand farm in 1969. After working as an engineer in the UK, I decided to go travelling – overland from North Africa, through Syria and Afghanistan, eventually ending up in Nelson, a city at the north of New Zealand’s South Island. I got a job picking tobacco: Lorraine, a Kiwi, was picking apples. 

I remember sitting on the floor of the kitchen, and watching her walking in: Wow, I thought. Lorraine was an absolute knockout, but she also had a girl-next-door quality that I loved – she was approachable, and quick to smile. Growing up in Invercargill, Lorraine had been brought up to learn Scottish country dancing as well as the Haka, which throughout her life she would perform whenever the All Blacks played. 

We came back to the UK together and set up home in the countryside near Croydon in Surrey, eventually marrying in 1980. Neither of us particularly wanted children, but we loved our dogs, soft-coated Wheaten Terriers, and a Lhasa apso. We threw ourselves into the business we started in our second bedroom, creating document-binding machines that eventually were used all over the world.

Our company took us to some very glamorous places. In 1986, we received the BBC Radio 4 Small Business Enterprise Award, presented by Prince Charles. Music was a great passion of ours – we often ended the evening at Ronnie Scott’s in London, where we’d dance till the small hours. And we loved to travel. Every place we visited, Lorraine would buy a dress. Hanging in the wardrobe was “the St-Tropez dress”, “the Marbella dress” and “the Barcelona dress”.

But we also adored our home life. We lived beside a golf course, and I loved hearing Lorraine coming back in her Toyota Rav 4, with the dogs barking away. Both keen, fast readers, we’d often play a game where we thought of a long word and checked whether the other could spell it.

In 2010, when she was 64, Lorraine seemed suddenly to lose her sense of smell. Soon after that, she started talking strangely: in unfinished phrases, rather than short sentences. “Am I going to…?” she would say, then walk away without finishing what she was going to say. When I pointed this out, Lorraine seemed aware of it, but unable to do anything about it. Though this was frustrating at times, I wasn’t worried – I just got used to it and became adept at understanding her.

But other things started to change. Always one to pick the perfect outfit for the occasion, Lorraine became lethargic about the way she dressed. She’d choose the out-of-date jumper with the holes, rather than the newer stylish top. The Barcelona and the St-Tropez dresses no longer meant anything to her.

In the kitchen, Lorraine would salt the potatoes two or three times, burn her arm on the stove without realising, and leave the gas on over dinner.

It honestly didn’t occur to me that there was anything wrong with Lorraine. I guess I just thought this was a natural part of ageing – I’d barely heard of Alzheimer’s disease, and certainly didn’t think it related to us. Plus, these strange episodes only took up a few minutes a day, and the rest of the time she was “normal”. So I made practical changes: switching from gas to electricity, and paring back Lorraine’s wardrobe.

Eventually, in 2012 I took Lorraine to the GP for pain in her right hip. The doctor clearly spotted something worrying in Lorraine’s behaviour and referred us to a memory clinic. The psychiatrist there told us this could be the beginning of Alzheimer’s. How could this be? I wondered. How could it be happening to us? Lorraine was always such a healthy person.

At the clinic, Lorraine was led into a different room to do a memory test. She scored 16/30. I thought this sounded quite good, but the consultant said that she ideally would have got all the questions right. When Lorraine had been asked to name the president of the United States (at that time, Barack Obama), she had replied: “I don’t know, but he has a dog called Bo.”  She was unable to name photos of an elephant, or a tiger.

The doctor gently told us that Lorraine had Alzheimer’s. I asked whether she could take any pills, and she told us there were, but they didn’t work, and “there was nothing to be done”. As you can imagine, I was deeply upset, but decided to put on a cheerful face – and this has been my attitude ever since. As Lorraine has never known there was anything wrong with her, I made the decision that we would carry on to live our lives as normal, for as long as we could.

OK, I said, so Lorraine has Alzheimer’s, but we will continue doing exactly the same things as if she hadn’t. For the rest of the 2010s, we continued to travel. We spent winters in Tenerife and much of the pandemic there. Most of the time, we were happy, but there were difficult moments for me – such as the time I took Lorraine back to Kaiteriteri beach in New Zealand. It was the place we first met: I willed her to remember, and was heartbroken when she couldn’t. 

We made other adjustments. Even before her diagnosis, Lorraine didn’t like being out in a group of friends in a restaurant for example, and often wanted to go home early. But even when Lorraine was in a wheelchair, I’d hold her hands and we would dance around. We joined the local Alzheimer’s Singing for the Brain group run by the brilliant Peter Edwards. 

Sadly, in the past couple of years, Lorraine has deteriorated quite a bit. She’s now confined to a hospital bed in the living room. I sleep upstairs and I regularly wake up at night, to go down and check on her.

This time last year. I realised we needed the help of professional carers, and we eventually found a terrific agency called Helping Hands. It now takes two people to wash and bath Lorraine – we have the same people coming in for three days a week from 9 to 9.30am. The rest is down to me.

Our life together now is different from the one I expected, but I am completely dedicated to my wife. She’s still “in there”, and to this day, perks up when I play music to her – she especially loves it when I play Memory from Cats on the guitar. Last year, I was concerned that if I died, no one would know Lorraine’s story, so I produced a video called “Lorraine’s Goodbye”. 

The way I see this is as just another stage in life. It’s like when you finish playing a professional sport like hockey or rugby. You hang up your boots, but life goes on – it just enters another state. There is no “poor Lorraine”. I see us both as lucky: we have a bond that has lasted a lifetime.

As told to Miranda Levy

The Alzheimers Society’s new campaign Long Goodbye begins on March 22