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I care for my dad who was diagnosed with Lewy body dementia in 2020 at the age of 74, having previously been diagnosed with Parkinson’s disease. Dad has always been very active. He was a semi-professional footballer and a bricklayer, and he and Mum have been married for 55 years. Mum is Dad's main carer, but my sister and I visit every week and take it in turns to stay over weekends to help mum, as night times are very difficult. I work full time as a Design Manager, my employer is supportive, but it is a lot to manage.

During the periods of full lockdown there was no support available, so Mum was left entirely responsible for Dad’s care. As a result, her own health suffered severely, and my sister and I had to take time off work to look after both Mum and Dad until Mum was well enough to care for Dad again. We were desperate for restrictions to ease to allow care and support in the home, and also for local support groups to open back up.

Someone comes in for two hours once a week to sit with Dad so that Mum can go out and do the weekly shop, and the occasional night sitting service that allows Mum to sleep. These services can be cancelled with less than a day’s notice if the support worker has come into contact with someone who has covid. This causes a lot of disappointment and extra stress.

Mum and Dad caught covid this year so were at home without in-home support for two weeks. Whilst having covid was very difficult to manage, the benefit of going out, especially to a support group, actually outweighs the risk of catching covid so they went back out to their group as soon as they were able.

For advice on Dad’s condition and support for Mum on how to cope we have relied heavily on the Admiral Nurse Dementia Helpline, and particularly the Consultant Admiral Nurse for Lewy body dementia who has been fantastic.  We also rely on a local group run by volunteers. This provides an afternoon once a week where Mum and Dad can go for support. I worry that we rely on one club so much and would love there to be more support available.

With thanks to Kim, her family and The Lewy Body Society for sharing this story

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