Real stories

A lack of Government support for dementia in coronavirus: David and Catriona's story

A shocking dementia diagnosis

I thought I cried all my tears when my wife Catriona was diagnosed with dementia. I was wrong.

We were living near London in 2013. We had been married for 22 years. We had a nice life.

The diagnosis came as a complete shock. Catriona was only 58. I gave up work, we moved to Devon and I became her carer.

Her dementia advanced relatively quickly. Her long-term memory is gone and we have difficulties now with feeding and incontinence.

We dealt with all of that. This is the woman I love and I wanted to be with her always.

By the start of 2020, we were in a comfortable routine. We went to a weekly get-together for older people where Catriona was comfortable. We would go for walks, out for tea and cake. I paid for a carer to come every Monday. It was a life.

Then coronavirus and lockdown happened.

Lockdown: lost support and lost time

We lost all our support. Our carer had to isolate because her partner was vulnerable. The weekly get-together wasn’t allowed. The cafes had to close. Apart from our daughter, who lives nearby, our life shrank to the walls of our home.

Catriona’s speech deteriorated and she became unsteady on her feet and more anxious about going out. One time, it took me 45 minutes to get her out of the bath because she wasn’t able to use her muscles to help me. That was scary.

Then she began to waver on the stairs. And I knew that one day, I wouldn’t be there for her, and she would fall.

The decision to move Catriona into care

The reduction in support during the pandemic changed everything. I realised I couldn’t look after my beloved wife in the way that she needed on my own. My daughter and I agreed we needed to find a care home for her.

The search wasn’t easy. Because of coronavirus, admission processes were restrictive and few places were available. Eventually, with a slice of luck, we found somewhere.

Catriona needed to have a negative coronavirus test before she moved in. It took time to get one and wait for the results, which was unpleasant and distressing for all of us. And then, suddenly, once the test came back negative, the whole process went straight into fifth gear. 

They wanted her to move in as soon as possible. We got everything together, packed, selected the calming music that my wife likes, a few photos, and made ready.

We took her to the care home and watched her walk into her new life.

That was in September 2020. I’m still completely heartbroken. The image of her walking away haunts me. I’m in tears as I write this, as I was at the time.

A lack of support for people affected by dementia during the pandemic

People keep telling me it’s for the best and I know that they’re right, but I am hurting a lot. I will visit her as much as I can, but that is very limited due to the pandemic.

With dementia, you feel that you have been saying goodbye, piece by piece, for years. But when they physically leave your life, those seven years of losses come together into one massive sense of loss. It’s so very painful.

We should have had more time together.

The pandemic stole at least an extra six months that we should have had together at home. 

Looking back, the little routines were so important. The carer, the group, the cafes. I wonder how different it would have been if we’d had the support we needed at home during that time.