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.

End of days

Today almost the first thing that happenened when I got to the ward was that the consultant summoned me into the office. I had been told that if ROH hadn't come through he would be taking action. In the event what he did was to show me the x-ray which showed the artificial hip is at 90 degrees to her femur. He agreed with me that the best option for Edna was to call a halt, accept that she isn't going to make through this time and just keep her comfortable.

We agreed it would e better for Edna to die on a ward where she is known, she knows them and she is happy there. A move would distress her so much in so many ways.

I cried - depsite the fact I wanted this decision. Barbara (the social worker) was so kind and listened to me ramble on and cry for about 30 minutes.

I spent most of the day at the hospital but left when I couldn't cope emotionally with seeing her any more.

I wont be going back tonight unless she deteriorates a lot.

She is as comfortabkle she she can be. not eating not drinking and having morphine for pain releif. When I left they were going to move her to a side room and had also called a physio to see if there was a plint they could use to immobilis her leg so she can be moved easier. Its a long shot - but I appreciate they are doing their best to keep her out of pain.

The next few days are going to be very difficult .

The pain goes on

I went back to the hospital at 6 - and got let in about 10 minutes early. Mary saw me and let me in. I feel I am being given the special treatment reserved for relatives when the patient is ill. I got a cup of coffee - and I think if I had asked to stay after visiting I would have been allowed to.

There has been nothing from ROH. In fact Mary said they needed to unpack her stuff - then changed her mind and suggested I take most of it away so it doesn't have to be unpacked then re-packed when (if?) she does move.

The vist was very diffcult. She had to be persuaded to keep her mask on for her nebuliser. Getting her to take her tablets was a very long winded affair. It was obvious she had hardly touched her dinner. She created a fuss when I started trying to sort out her bags and said she didn't want me to do it. She got quite aggressive.. But when I said I would be in trouble with sister if I didn't do it she gave way.

She started hallucinating talking to people who were not there - and one point asked if Steve would tell his Dad what was going on. She was taling to Doris at one point.

I left at 8.00. I wasnt doing anything - and I know they will call me back if anything happens. I wanted to tell Mary about the halucinations when I left but she was busy and said she would talk to me later. I told Derek (one of the rehab assistants) and I know he passed the message on becasue Mary rang me later to apologise for not being able to talk to me before. She has told me Dr Goodman is going to start chasing ROH is they dont hear anything tomorrow. I had considered contactin ROH PALS, but I reckon Dr Goodman will carry more weight. I told Mary I had considered the PALS route and she said it could be a good idera. I will wait and see what Dr Goodman can do though

I have this awful thought that ROH know they can't really do anything - and dont want her to die on their ward which is why they are stalling about the bed. I do hope I am wrong. I am almost sure I am - but it is horribly plausible.

waiting...................

I went to see Edna tis morning hoping to hear that the move to ROH was being organised. There is a real chance it will not happen until tomorrow. It is now 4.00pm and the ward said they would ring me as soon as they had any news. I did offer to stay with Edna (and the ward would not have kicked me out even during meal times) but she was adamant she didnt want me to saty - and I wasn't really doing anything useful.

She was in pain and is on Oramorph as well as Co-codamol 30/500. It is obvious the staff are all concerned about her - but equally obvious they can't see what the orthopods can do.

All I can do is wait, pray and try to stay sane. It looks as if I missed a days work for no reason today since clearly I am not going to be spending much (if any) time getting Edna settled. But would my mind be on work if I was there? I don't think I would.

She was more confused today (undoubtedly the Oramorph) and we are back to Doris being on the ward. An oldy but goody.

I will pop in to see her again tonight if the move doesn't happen to try and cheer her up.

A major problem

The fracture has re- fractured. She has been referred back to the orthopods. Originally she was going to be moved back to Selly Oak tonight but I have literally just been contacted by West Heath and the plan has changed . She will be going to the Royal Orthopaedic Hospital tomorrow. This has the advantage that it is within walking distnace of home. But the disadvantage that she doesn't know the ROH and so her confusion will increase. I will be able to get to the ward when she is transferred - and frankly will have to be there for everyone's sake.