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 .

RIP

Edna died this afternoon very peacefully. I was with her at the end - not doing anything just sitting with her. That kind of sums up my relationship with her. I didnt do much physically - but I was there when she needed me

Body and soul

I have just spent a night at the hospital after I got a call to say she had deteriorated. She is now on a syringe driver so should be pain free. I am sure she is - but there are times when she behaves as if she was in considerable distress. But I have come to the conclusion that she is not in disress from pain but from hallucinations.

Edna's body is still alive - but I feel her soul is elsewhere. Sitting watching someone die leads naturally to some philosophical thoughts. I couldn't say at what point her soul left her body - but the person lying on that bed now is NOT Edna. Between the dementia and the drugs

I got to the hospital just after 10 last night and left just after 7.00 this morning. I managed to doze a bit while I was there. I have had some more sleep this morning but will be be back at the hospital this afternoon - unless I get a message to say she has deteriorated/died.

I am trying to be practical and I have already got loads of paperwork from her flat. Somewhere among the mass of envelopes is (I hope) the details of her pre-paid funeral plan. The trouble is her dementia seems to have made her re-arrange her paperwork so many times that I dont have a clue where it is . I knew where it WAS - but it has been moved or maybe even thrown away if in her confusion she didn't recognise it for what it was - which is sadly all too possible.