COLUMN: Sussex woman shares a story of dementia

Claire Carberry
Claire Carberry

Claire Carberry lives in Lewes and is a solicitor at DMH Stallard based in Brighton. Specialising in elderly care issues, Claire helps people from across East and West Sussex. This is her dementia story…

I am a Dementia Friends Champion. I’m also a daughter with a mum who has dementia. And with my solicitor hat on it’s my job to handle tricky issues like power of attorney when a loved one has dementia.

My family has been significantly affected by dementia. My grandma had it, my aunt has it and my mum has sub-cortical vascular dementia. My mum hasn’t spoken to her siblings for about 30 years as a result of their falling out over my grandma’s care. Family fall-outs are very common.

My mum now has late stage dementia and is in a specialist dementia nursing home.

The ‘big-bang’ (almost literally) was when she left the bathroom taps on at home. Water eventually started pouring through the ceiling, fusing the electrics and making her home uninhabitable. She ended up staying with us and it was only then that I fully realised how bad she was.

After two weeks I pleaded with the local authority to help. She lasted 12 hours in the first home as they couldn’t cope with her. The second one had her for two weeks while I tried to find somewhere else. I felt absolutely evil leaving her there and both of us cried. A lot. But she couldn’t stay with us. None of us were getting any sleep and I didn’t feel it was safe leaving her in the house on her own during the day. The third home was much better but eventually they couldn’t cope and she moved to where she is now.

I thought I knew a reasonable amount until this happened. Social services were fairly helpful, a couple of charities more so.

The social worker thought mum needed to go home. I disagreed – I thought she’d kill herself the next time. We rented the house out to give us a year to work out finances. The home put the fees up which scuppered that so we had to sell it and use the sale proceeds.

Choosing a home is horrific. You don’t know what you’re looking for.

When you have limited finances, you have the local authority list. The homes on it might not be suitable for various reasons. They may be too far away. They may not have space. They may not have the expertise. They may be too expensive.

For me it was also important that mum lived somewhere I could take my children to visit.

I was lucky. I’d managed to eventually persuade Mum to grant me a power of attorney so the legal side was in place. I do this for a living, so although I didn’t know all the answers, I knew where to go. And family, friends and my employer, DMH Stallard, were supportive.

If you have not yet been involved in some way in elder care, you will be, as people live longer and have children later.

You can’t cater for all eventualities but you need to plan for those you can. If possible, have that difficult conversation with your parents now. Have they got wills and powers of attorney in place already? What do they want to do about their care as they get older? Are their finances in order?

It might be a tricky conversation now, but it will be a lot trickier when ‘in theory’ becomes reality.