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Ian who features in Swindon Carers Centre's film Unpaid carers in Swindon: their stories.

“As a carer, it is reassuring to know you are not alone.”

Ian, 62, of Swindon, cares for his wife and shares his story during Carers Week 2024. Ian also features in our video – Unpaid carers in Swindon: their stories – which you can watch on our YouTube channel here.

 

My wife, Lorraine, was diagnosed with young-onset Alzheimer’s disease, a form of dementia, in 2016 when she was aged 55.

It was worrying but not a surprise as she had been having memory-related issues – repeating sentences for example – for three years prior to that.

At the time we were both working. Lorraine was a kitchen assistant, but her condition led to her giving up her job the following year.

I was an IT project manager working full-time and often away from home during the week. In the beginning Lorraine’s condition didn’t noticeably affect our daily lives. Lorraine went to walking groups and she was able to cook meals.

But she became more confused and was no longer able to go walking outside on her own. She would sit at home all day so in 2019, aged 58, I gave up work, retiring early. I took my pension, even though it was reduced, to become Lorraine’s full-time carer.

We were both worried how we would cope financially. Thankfully, our life insurance policy covered us for Lorraine’s condition so this paid off our mortgage and we could afford to live on my pension and benefits.

We didn’t know anything about Alzheimer’s disease and I worried about how long Lorraine had left and how I would cope with Lorraine not being able to do things.

But, as soon as she was diagnosed, Lorraine said she was going to carry on with her life and not let dementia beat her.

 

Becoming a carer

Adjusting from having a career to becoming a carer was difficult. I was worried that being permanently at home we would be under each other’s feet and how it was going to work. Would we get annoyed with each other?

Because we are married, I didn’t think of myself as a carer at first; I thought this is what you do.

Ian and Lorraine on their wedding day.
Ian and Lorraine on their wedding day.

I do the cooking, housework, shopping, driving, sort Lorraine’s medication and remind her of her and our appointments. Doing the household chores doesn’t bother me, I cooked before I became a carer. Lorraine can help me with things such as peeling potatoes, but she doesn’t understand how the oven works.

Lorraine, now aged 63, is very bubbly and smiling. She will talk to anyone she meets and she brings joy to others.

Ian and his wife Lorraine.
Ian and his wife Lorraine.

Her condition is a slow progression. At times her confusion can be frustrating and I have to be really patient.

Her diagnosis is what it is – you can’t change it – but I focus on what she can do and make the most of things.

 

Valuable support

In 2021 I registered with Swindon Carers Centre and I’m really glad I did.

They hold a variety of events and activities that I go to where I meet other carers. I go to the Carers Cuppa and Quiz Nights. I’ve also made a wreath at an Arts and Crafts session and gone to a Pamper Morning, which was very relaxing.

Ian chatting to another carer at a Carers Cuppa event.
Ian chatting to another carer at a Carers Cuppa event.

I can’t switch off entirely from my caring role but attending these activities gives me a break. I’ve made friends with other carers and peer support is valuable – it’s reassuring to know you are not alone. We get support from each other and give tips on our situations.

There are events that Lorraine and I can attend together and we go to Walk and Talk, the Dementia Carer Support Group and social afternoons. Lorraine loves music, so she will aways sing and dance when there is entertainment at the social afternoons.

I’ve also got an Emergency Card through Swindon Carers Centre. This gives me peace of mind as it’s a plan which will put into place the care Lorraine needs should I not be able to care for her if I had a medical emergency, for example.

 

Keeping active

Lorraine and I have been married for 30 years and our social life is busy! We attend groups and events run by Swindon Carers Centre and other organisations in Swindon, including Highworth Forget Me Not café where we are Trustees.

We are also members of Swindon Dementia Action Alliance and the Alzheimer’s Society’s HOPE (Hear Our Personal Experiences) group. We talk to others living with dementia and Alzheimer’s and have made a training video to raise awareness of the condition.

It helps Lorraine to be active and we love going to the theatre to see shows, singers, comedians and football matches to cheer on our team, Nottingham Forest.

Ian and Lorraine at a show.
Ian and Lorraine at a show.