Real stories

We need more understanding and support for people who live on their own with dementia

I have a strong family history of dementia. Each generation down both sides of the family had some form of dementia and I was a carer for them.

Even people with the same type of dementia don’t have the same difficulties so there is no ‘one size fits all’. Everyone is a unique individual.

When I started doing things that weren’t normal for me, I began to wonder if I was developing dementia, so I went to my GP who asked questions and referred me to the memory clinic.

Eventually, I was diagnosed with mixed dementia – Alzheimer’s disease and vascular dementia. Getting a diagnosis was a relief rather than frightening.

I have no family or carers

By this time I had no family anywhere in the world and no carers. Actually having the disease gave me an entirely different perspective on what it’s like – very different from the difficult job of being a carer.

Two people I trusted already had powers of attorney for me, but they aren’t my carers and we don’t always know where each other is.

They are my ‘supporters’ – a term we prefer rather than ‘family and carers’ when you don’t have any. 

They are now stepping in to help me with budgeting, as I’m inclined to make mistakes.

I’m fortunate to have a lot of insight, but that will go as the disease develops. I know that as faculties disappear they won’t come back, which can be upsetting. There are days when I get completely confused, so I shut myself away until a better day.

My decisions about dementia

One big difference if you are alone is that other people have nobody else to ask for information about you. Any information has to come from the person themselves or via things they have written down – a fact not always appreciated by workers.

I have filled in a ‘This is me’ booklet to take with me as needed. It helps people to know how to relate to me and gives basic information they might need.

As a very pragmatic person, I have planned ahead. 

I have found myself a support group, who know me well and will be able to notice when things are going wrong. I have made sure the people I’ve appointed through powers of attorney know in writing what my future wishes are.

Unless something gets me first, I know and accept that I’ll eventually have to go into a care home and have done a bit of research into that.

More living alone with dementia

With the fragmentation of society and families, more people now live alone with dementia. 

Dementia advisers tell me they are getting more calls now from people who are living alone with dementia and have different needs. When I speak to other people, including professionals, they say this is an area that needs looking into much more.

I have a lot of coping strategies so people don’t always realise I have dementia, but it sometimes shows itself now.

I have a strong Christian faith and I know God will come with me as things deteriorate. I see this as another phase of life. 

Many things I used to do have gone, but I enjoy meeting up with people I know and doing what I can.

Don’t write me off – I’m still me! I’m living differently, but well with my dementia.