In conversation with… Nuala

Nuala stood behind her husband, Tom, with her hands on his shoulders

Nuala is a carer for her husband Tom, who was diagnosed with Alzheimer’s two years ago. This Carers Week, we spoke to her about the challenges of being a carer, getting up the courage to seek support, and the importance of looking after your own wellbeing

What has caring for Tom been like since his diagnosis?

A couple of years before Tom was diagnosed, he was having problems with his memory, with some confusion and disorientation. However, at 60 years old, it was difficult to get a memory assessment and he was originally diagnosed with polymyalgia – a condition that causes pain, stiffness and inflammation in some muscles – and anxiety.

When Tom was first diagnosed with Alzheimer’s, he was given medication that prompted his memory and slowed down the condition. At the beginning of 2020 I was still working, but then had an operation for cancer in March. At this time, my family moved in to help us. I started getting better from September, but my husband started getting worse.

For the last 18 months, I’ve needed to be with Tom all the time. At first there was a gradual deterioration, but by last summer it had got to the point where he couldn’t dress, shower, or feed himself.

Where did you seek support?

I had previously been resisting help, but at that point, I contacted Age UK Islington. Following a needs assessment and support from the Islington Memory Service, our GP and social services, we started to get help.

At first, carers were coming over four times a day, but now it’s just twice a day. This gives us a bit more flexibility in our day and means that Tom doesn’t have to go to bed at 7pm. They come for an hour in the morning, to help get him dressed and to get him breakfast. This gives me a short time for myself, to get things done. I’m aware that I need to make the most of this time and perhaps get out while the carers are here.

If I have appointments of my own, Tom needs to come with me. Sometimes this can be really awkward. One time he came to the dentist with me and thought the appointment was for him.  Since then, I’ve had family, friends and paid carers look after him while I go.

What impact has Tom’s condition had on him and your family?

Tom is often upset, stressed and depressed. One moment he can be very intuitive, but the next moment he doesn’t know where he is. The rest of the family is coping, but sad. They give me four hours respite every two weeks, so that I can have some time to myself.

How do you make sure your wellbeing is also looked after?

I get counselling every week, which has helped me to accept and come to terms with what is happening. It is very much about living every day as it comes.

I have tried a few activities through Age UK Islington and Islington Carers Hub. I go along to the park cuppa in Gillespie Park and Cally Park with Tom. I’ve found it to be supportive for both of us.

I would really like more time out and am currently applying for a short carer break through Islington Carers Hub. If I could give other carers any advice, it would be to fit in some time for yourself. If you can’t look after yourself, you can’t look after anyone!

For more information about support available, visit the Islington Carers Hub website

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