Talking about feelings of loss as a spouse’s dementia progresses

When Cordelia met her wife Kate over 40 years ago, she felt like she had found her soulmate. 

The challenges brought by Kate’s Alzheimer’s disease diagnosis were compounded by her and Cordelia’s other health problems. 

After the difficult decision for Kate to move into residential care, Cordelia is now her advocate, visiting daily. 

As a psychologist, Cordelia uses her platform to write openly about feelings of loss and grief. 

‘It was just one of those soulmate things, an immediate thing,’ says Cordelia of the first time she met her wife, Kate. 

We met when I was 25 or 26 and took a job at the school where she was headteacher. We got on really well and she moved in about three minutes after that!

The couple have now been together for over 40 years and Cordelia regards Kate as one of the ‘brightest, kindest’ people she has ever met. 

‘I remember being very impressed by her conflict resolution skills and her ability to make everybody like her,’ Cordelia says. ‘She could do a killer sudoku.’ 

But Kate’s Alzheimer’s diagnosis, in her 60s, changed life drastically and Cordelia feels a sense of loss. 

‘I do talk about her like that in the past tense because watching Kate’s decline is like emotional torture,’ Cordelia explains. 

It’s hard for me to talk about this without crying because the loss is unbearable.

Concerns dismissed 

Kate was diagnosed with Alzheimer’s disease in around 2016, though Cordelia thinks her symptoms appeared much earlier.

At the time, Cordelia felt that people dismissed her concerns about Kate’s changing behaviour. 

‘I look back and I think, “God that was probably present many years beforehand,”’says Cordelia. 

Kate said strange things, but people who were close to us didn’t necessarily pick up on them. 

‘She felt like she was being excluded from conversations and then developed this almost manic, obsessive need to do the shopping properly. 

‘If she’d forgotten something, she’d get anxious – going back and forth to the shops. 

‘It wasn’t until I went to a private neurologist that we got a diagnosis.’

Before this, Kate was diagnosed with epilepsy, which made it difficult to distinguish her dementia symptoms. 

‘I think I just dismissed some of those things as epilepsy, like absences which happened in the car a couple of times.

It finally clicked when I realised she was losing track of the finances and covering stuff up.

Difficult decision 

Several health problems – including being diagnosed with breast cancer twice some years ago and contracting sepsis more recently – made caring for Kate even more challenging. 

‘When Kate’s obsessive shopping behaviour started, I was in hospital with sepsis,’ Cordelia says. 

‘We’d moved from south to central London and rented out the house because I needed more medical support.’

Following the Covid lockdowns, Cordelia had to make the difficult decision to move Kate to residential care. 

‘We were joined at the hip, and it was like pulling something apart when it’s stuck together with glue,’ Cordelia says. 

For me to admit that I needed to move my beloved Kate to care, was horrendous. But Kate had had a couple of falls and suspected mini-strokes – I had to face the fact that I wasn’t coping.

Being an advocate 

Cordelia believes that caring doesn’t stop when somebody moves to residential care. 

‘My commitment to Kate doesn’t end because she lives in a care home,’ she says, ‘On the contrary.’

Cordelia visits Kate daily and considers herself to be an advocate for her wife. 

I’m here to look after her and I take that job very seriously.

Feelings of loss 

Feelings of grief and loss are common for Cordelia as Kate’s Alzheimer’s progresses. 

‘Our daily visits are a special kind of togetherness,’ she says, ‘But they can also be pretty horrendous. 

I hate that turn of phrase “other half”, but it does feel like I’ve lost my other half, even though she’s still physically there.

Kate and Cordelia's family lives further away, which she says has brought the importance of a support network into ‘sharp focus’. 

‘But come the end of the day when you shut the door, it’s you and your partner,’ says Cordelia, ‘so a support network can only soften the blow so much.’

A godsend 

A befriending service has been a valued source of support for Cordelia. 

‘Age UK’s befriending service was really helpful for me,’ she says.

I found a weekly talk was just a bit of respite when I was really struggling during Covid. 

‘I forged a relationship with a local woman and she’s been a godsend, really. 

‘We moved away from a strong community, so she has been really useful – more so for me now than Kate.’

Cordelia’s advice to fellow carers would be to get themselves ‘into the system’ as soon as possible. 

This might include finding a local dementia adviser who can help to navigate life with dementia or help with lasting power of attorney. 

‘Get all the benefits and financial support that you can,’ Cordelia says. 

In a way it’s obvious, but it wasn’t obvious to me until somebody said it.

Use your voice 

Cordelia, a psychologist, has written about her experiences in newspapers and professional journals. 

‘I write to try and help, and to try to change things in an albeit ripple effect kind of way,’ she says. ‘This has been my aim ever since I started writing decades ago.’

Ignorance and prejudice faced by LGBTQ+ people when accessing dementia care is one of the issues Cordelia has written about. 

When she mentions Kate to others, they assume she’s talking about a husband, and this can be hurtful. 

‘Mine and Kate’s marriage is almost treated like a pretend relationship, like she’s “just a friend”,’ she says. 

‘Some people won’t equate what we have had for 40 plus years with what wives or husbands have, even though we are married. 

In many ways it’s got a lot better for us as a same-sex couple over the decades, but in other ways not at all – even in a central London community, there are still varying degrees of prejudice. 

‘I take the risk by writing about it because I very much believe that if you don’t risk standing up and being counted, nothing will shift.’