Anne’s story

Anne cares for her partner, Edie, who has dementia. It’s a demanding, full-time role, balanced with love, trust and commitment.

Anne: Edie is an amazing person and we were friends for 10 years before we got together. We’ve been together for 33 years now. Our relationship has always been one where there’s been a lot of love and a lot of trust. I think it was really difficult until we got the diagnosis as to what exactly was going on. The main feature of Alzheimer’s is memory loss. So the very first symptom that I noticed with Edie was that she was forgetting to give me messages. We’d arrange to meet and she wouldn’t turn up, and the remarkable thing about Edie was that she had an exceptional memory.

Being a carer is incredibly difficult. It’s very lonely. My entire day now is pretty much centred around Edie. You don’t have a lot of time to yourself. But what happens over time is that you gradually do more and more. It’s very demanding.

Friends that I have, the ones that I see regularly are essential, essential to my well-being because these friends, you can say anything to. I think trying to be a good carer on your own is really quite self-defeating. It’s really important to link in to whatever is available in your own local area.

From time to time she goes into respite care, I just really need some time out, and rest for myself. You can’t go on being available to somebody else 24/7.

It’s not all just hard luck and difficulties and problems. Edie will often say to me ‘I really appreciate everything you do’. She comes and puts her arms around me and thanks me, and that means so much when she does that.

Edie: No matter what places you travel to, what wonders you choose to see, I will always belong right here with you and you’ll always belong with me.

Anne: I do it because I love Edie, that’s my commitment to her. She’s been a wonderful partner to me and supported me in everything I’ve wanted to do throughout my life.

Edie made the comment that our hearts are bigger as a result of her having dementia and I think that’s a beautiful description really of what’s happened in our relationship.