Blogging for an audience

I have told the ward about this blog and several people have asked for a copy of it. I have just re-read it as I try to focus on a suitable ending.

The standard dementia story is the caring wife/husband/child who lives with the patient. But Edna cannot be the only dementia sufferer who lived alone. Someone else must have been in my sort of situation before. But it felt as if the systems just didn't quite work for us.

Maybe that is my perception born of the frustration of the yo-yo admissions before the dementia was diagnosed. Could it have been diagnosed earlier ? Would it have made any difference?

I think the importance of communication is the message of this blog. And communication is a two way process - listening as well as speaking.

Edna felt she wasn't listened to by me and by other people.

Edna often complained that she hadn't been told things - sometimes she just forgot . But sometimes she had been told but not in a way she understood. I think one of my triumphs was explaining her surgery to her in such a way that she understood and was happy to sign the consent form.

I felt totally inadequate as I struggled to communicate with Edna when the dementia was bad. I also felt frightened because to someone who didn't know her - like NHS workers meeting her for the first time - my fears about her ability to cope at home must have seemed ludicrous. I felt I wasn't being listened to either.

I am unfailingly and forever grateful to those people who DID listen to me .