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Caryl's story

There is so much people don't understand. I think people tend to think that when someone has dementia they only lost their memory, but the impact is much, much greater. You really lose a person. When you grow older one of the huge joys is to share memories. We can no longer share the joys of our grandchildren.


Caryl's husaband Tom has dementia and she gave up work to care for him full time. Recently, Tom deteriorated so much following an infection that he was admitted to hospital and is now in a nursing home. Caryl still cares for Tom, but now also needs the help of the staff in the nursing home.


Caryl said:

"I visit Tom at least once a day and sometimes two. It seems that he will not let the carers clean his teeeth so I have to do that. It is quite a challenge as he doesn't understand who I am or what I want to do. I also generally give him at least one of his meals as he seems to prefer that and I like to help him with it.

At this stage of his illness he can no longer feed himself so has to be assisted with meals. He cannot follow anything on television but does still like to listen to classical music.

When you have been married to someone for nearly 50 years it is very hard to lose them in the way one does to dementia. Of course there are sometimes flashes of his old self - the sense of humour - but really is not able to communicate and doesn't know us.

The financial pressures of being a carer are immense, you give up work. Carers Allowance is only designed for carers who look after one person and not two, and barely covers any living costs.

Some people think caring ends when your loved one goes into care. But I find it harder now. You need to be there with them because it is hard to trust them to someone else's care and you need to let them know that you love them and make sure they are not frightened."



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