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.

More problems?

Just got back from the hospital. This morning I have been to Fosters to pay her rent, pick uo her crochet stuff and a few more clothes. I also retrieved some mince pies from the freezer that have been there since last year.She likes mince pies and I am hoping she will eat them. Then I called in at West Heath for the 11-12 visiting slot

When I arrived I was asked if I could push her to the day room as they were still getting patients up. She objected at first but then when it was explained WHY she needed to be moved she agreed.
Before we got to the day room she showed me (and anyone else watching!) her catheter bag which I am happy to say was clear. But her legs are still very swollen.

Down in the day room it became obvious she had forgotten what we discussed yesterday becasue she was surprised (but very pleased) when I produced her crochet bag. And the mince pies seemed to be a hit as well. I have told one of the rehab assistants that they are from the freezer and not to panic about the expiry date (Dec 2008)

She had a drink while we were in the day room and after yesterdays accident (and the domestic implied other similar events) I was asked to watch her carefully. Which I dd and noticed she has a tremor in her hands. I mentiomed it to Mary and Sonia. When I suggeted to Mary it could be linked to the dementia, she reminded me that Salbutamol can cause a tremor. We discussed how much she is having and how log she has been having it. I pinted out she has been prescribed it for a long time - but it is a moot point how much she has actually had. But whatever the cause I have mentioned it and they will keep an eye on it.

I was very much remined of the phrase Carolyn used when she did psychometry on Edna's ring' Torrent of words'. She never really stopped talking. And some of what she was saying was actually rather critical of other people in the room - and she has a loud voice. There were some familiar themes in her chatter. Going to to the shops, relatives being able to eat on the ward if they pay, but most of the time she was talking about the people on the ward (or the people she imagines are on the ward?) Basically she was lost - but happy - on Planet Edna.

It was not a happy visit for me .

Tea and laundry

I got a call from the hospital today telling me Edna had managed to spill a cup of tea over her. Although it was really hot they had to complete an incident report form so they rang me to let me know. She wasn't hurt at all - but had to have a complete change of clothes. When I got to the ward she was fine from the accident but clearly generally down.

Her bottom is hurting, her legs are very swollen, and the contents of her catheter bag look very dark to me. I'm guessing the catheter is causing some irritation and there is some blood in her urine. The staff will be aware of it as they have to empty her bag . They have told her to drink lots and I suspect that could be why. She says she is..........but I doubt it

It will be another 3 weeks before she can start to weight bear. That feels like a long time. I am concerned about how she is going to cope.

She has asked me to take her crocheting in which is a good sign. But she is still talking about how she could decide to go home. Although when I pointed out she couldn't go home in wheelchair she had to agree.

She struggled to do up the top two buttons on her blouse today. She did one - then asked me to do the other. It is rare for her to ask me to help.

Planet Edna

I discovered today other people have been introduced to planet Edna. Pat was telling me about some of the things Edna was talking about in the day room. Its re-assuring to know the staff know how much she imagines.

Today she was giving me contradictory information about food. Pat said she is eating OK. Not brilliant but OK. And they are hoping to start to get her weightbearing in about a couple of weeks. It has to be at least 6 weeks after surgery which was on 5th September. I am sure Edna has no idea how tricky it is going to be for her to get mobile again. Rather worryingly she was talking abut making her own soup when she is back on her feet. I dont for a moment think she accepts she isnt going back to Fosters.

What worries me is her dementia means she doesn't remember what the staff have told her. She is convinced one of the doctors told her she didn't have to use all the nebuliser fluid if she didnt want to. I had quite a battle with her to make sure she got the majority of it tonight. If she confused what se has been told about mobilising when the time comes who knows what she may try to do. She may try to do more than she should OR she may be so tired that she will not as mch as is needed - and will swear the doctor told her she could/didnt have to - delete as appropriate.

One other thing Pat told me is that her bottom is red. Not broken but red. Problem is she has no padding - so although her waterlow score is officially too low to need a special bed - she has been given one. If her dementia means she doesn't remember to mobilise/ imagines she has been told she doesn't NEED to mobilise as much as she should that coudl be disastrous.

She is more tied than I have ever lnown her to be. They were putting her to bed went I got to the ward at 6.00 tonight. Normally she complains about getting into bed too early

A short visit

Todays visit was short. I bumped into Steve as I was on my way to the hospital and he decided to come with me. His comment was 'I've got the time now and it gets it over with' He is finding this a real strain.

Edna was pleased to see him. The other day she mentioned she had heard someone saying she needed a new or better bed. Today she has an air mattress not an ordinary one.So I guess they are concerned about pressure sores. The good point is she had heard and remembered correctly about her bed. I will take all the good points I can get

She wanted her hair cut . This has been an issue for sometime. But at least today she let me talk to the nurses to arrange it. But what she wanted was for me to bring some money in for her so SHE could book it and pay for the hairdresser herself. She doesn;t understand (or want to understand) that the system is the nurses pay the hairdresser so the money has to go to them to keep in the safe. So she wasn't too happy about that.

She was panicking about running out of money in her main account. She has 30,000 plus in that account ffs.

I cut the visit shorter than I would have done because I could see Steve was anxious to leave. He does find it distressing visiting her. She is so obviously unwell both physically and mentally.

Yet again at one point she said she wasn't bothered about anything any more. She was also complaining about eating making her very breathless . This has been her excuse for not eating much for months - since way before Alan died IIRC. It has been some time since she has mentioned it though. Not sure what that means or why it is an issue again. It could be that she is looking for a new excuse not to eat or it could be she has been trying to eat a normal sized meal and it genuinely has made her breathless. That could actually be a good sign. I will just have to wait and see what happens.

Brenda (her old neighbour) rang this morning and said she would try and visit her now she is back in West Heath. When I told Edna she was very unimpressed. Its worrying that she doesn't want to see an old friend like her.

A visit full of fantasy

Today's visit was very trying. The good news is she ate and enjoyed BOTH the cream slices. It was the first thing Sonia said when she saw me come down the ward. And Edna remembered she had eaten and enjoyed the cakes. Huzzah!

The rest of the visit was fairly naff. Almost everything she said was a fantasy from planet Edna. Other patients wnt out to the hairdrssers. A grocery shop is opening at the hospital (and Edna will use it) The hospital is something to do with nomads. She got woken last night by cows. The patient in the next bed knitted the bed socks Edna has (they actually came from Selly Oak)

These fantasies are harmless in themselves becasue she can't act on them. But I find it so distressing to know her brain is so scrambled she thinks these things. I know she is frightened by the fact that her memory plays huge tricks on her. I know that fear is probably at the root of all her nastiness to me .

Mrs Hyde never appeared thank goodness.

She did say one thing that caught my attention. I forget the exact wording but it was obvious she thinks she may not leave West Heath alive.

I left feeling pretty awful - with a suprsized chocolate craving.

A distressing visit

I went to see Edna this morning (visiting allowed from 11-12) She was in the day room. The first thing she did was complain about how long she had been in the day room - that it was 'too long' to force people to be away from their beds' Turns out she had been in the day room for all of 15 minutes.

I had taken her a couple of cream slices. She loves cream cakes and I reckon she needs the calories. She was pleased - but then said she would eat them with her afternoon tea. Eventually I suggested they should be put in the fridge to keep them fresh. She implied the nurses would steal them. Anyway I spoke to her nurse who wrote her name on the box and told me to tell the housekeepers to put them in the fridge. And one of the auxilaries is ging to make sure she is offered them with her afternoon cup of tea. I dont think she will eat those cakes at all.

At least in the day room a couple of other patients joined in the conversation which meant it was easier on me. Although Edna (or do I mean Mrs Hyde?) made a cuple of cutting remarks about other people cutting in on conversations.

It was quite weird- one moment she would be quite grump -a nd the next laughing at something or commenting about the cookery programme on the TV.

At one point she expressed some interest in being wheeled outside at some point, As it was really nice this morning I suggested I could take her outside then - but her immediate answer 'Oh no not at the moment'

It was one of those times when I felt I couldn't do right for doing wrong. Sonia (the auxilary who is going to make sure she gets her cake) had a chat with me as I was on the way out - and she said Edna is always telling people how good I am. I am trying to understand why she tells other people one thing - and yet gives me the opposite impression. The trouble is with dementia patients you never know what is real and what it fanatsy. Is she telling them the truth or is the face she shows me the real one?

Groundhog day

Thats what it felt like when I went over to Moseley to collect Edna's clothes and take them into Ward 11 for her. When I got there she seemed OK but I realised she was quite confused. She told me her bed had been bloodstained when she woke up this morning (it hadn't) I got accused of being mean when I said I wouldn't take sandwiches in for her because 'everyone else has them' (they don't) . Also we had an argument about money. Edna wanted me to give her some money. She wanted 10.00 but Pat (the sister) said that was too much and 5.00 would be plenty. She wasn't happy about that but she does now have some money.

I had a chat with Pat before I left and to my relief I discovered she is DNR. It will be some time before she is up and weight bearing so she is going to be in hospital for several weeks.

Back on the merry go round

Today worked out well in the end. because of the drama last night I decided to take time off work and visit Edna this afternoon. That meant I was there when transport came to take her to West Heath again. She is back on ward 11 in the oppsotie bedspace to the one she was in less than a month ago.

And when I left she was actually eating some soup. I also saw her eat some crisps while she was still at Selly Oak.

Physically she was better - but mentally she was worse than last night.

One good thing was that Edna spoke quite acceptingly of the idea of NOT going back to Fosters. But that is today............tomorrow Mrs Jekyll could be against the idea

She is on a normal mattress now so I hope West Heath can get her mobilising OK . I guess I have to trust them as they are the experts. But I have massive doubts how muc co-operation they will get from Edna.

One other sigh is that they will start getting her into normal clothes so the luandry is going to increase a lot now.

I feel quite down if I am honest - but then I have done a lot of rushing around today.

Not the best hospital visit ever

I turned up on the ward to discover Edna was in a dreadful state because she was feeling - and being - sick. I discovered she is on iron tablets , Erythromycin and Sando K all of which are renowned for making people sick. And did they write her up for an anti-emetic?

The good news is she has eaten more today than she has for several days. Also mentally she was better than she has been for several days. She could remember things she had been told earlier in the day and what day of the week it was. Also she will hopefully be moved to West Heath later this week

The bad news is they are keeping her on antibiotics for her chest so it obviously hasn't cleared up as well as they hoped.

I stayed much longer than I intended. But I still felt guilty when I left. On the one hand she was telling me to go. But on the other hand she said she wished I could stay with her all the time.

I feel very drained now I am home and and I feel as if I am getting a mouth ulcer. That visit raised my stress levels massively. I hope a good nights sleep and some calming meditation will restore my balance

Food and other things

Steve and I went to visit Edna. Steve hasn't seen her for a week and thinks she has lost weight since he last saw her. I can believe that because it is obvious from the food charts she isn't eating. And she was adamant that she wont be bullied into eating.

She seemed alert and orientated but told us that she had got herself up at about 5.30 this morning (which she isn't capable of doing) and had been sitting out since then. But she told Steve (while I was getting the chairs) that the nurses got her up about 8.30 - which sounds much more realistic.

She also told us that she had been poorly overnight and that her bed had got covered with blood from her wound. The sister looking after her knew nothing about anything like that - so I dont think it happened - although her wound IS oozing and it is possible she is exaggerating for effect, or that she hallucinated the blood soaked bed. She seems to be mixing fact with fantasy.

Steve is not a good or natural visitor - and his grandmother's state upsets him so we didnt stay long. I am gving myself another day off tomorrow so I wont see her until Tuesday.

She is better!!

Edna was much improved when I saw her today. She was MUCH more alert and responsive. She was in bed when I arived (previous 2 days she has been sat out) but she reacted to me appropriately when I roused her from her doze. She has also been drinking. She drank almost a whole glass of milk while I was there. She had also had some build up soup and a spoonful or two of forticreme mousse. She couldn't eat any more because she was so full.

She thankfully has stopped talking to invisible people and making all the weird hand movements. She is back to telling me things I know are not accurate - like the nurses making their own uniforms. So she is back to making up things to fit her world view for whatever mysterious purpose. it is amazing how many people are married to dentists in her world. It is a recurring theme - like people traveling long distances to work or working on a voluntary basis. I think i have figured out the dentist connection tho. David was training as dental technician.

She has an Hb of 7.5 so they are giving her transfusions. I bet I will find iron tablets now added to her medication.

She wont go to West Heath until they are sure her chest is clear . the antibiotics are due for review on the 14th so she wont move until the 14th at the earliest.

She is complaining of a sore bottom and kept trying to take weight off her bottom by taking her weight on her hands. She is on an air mattress to reduce the risk of pressure sores - but she isn't mobilising so they can't work miracles. I am sure they will be aware of the problem.

I should feel happy that she is better - but I dont. I still feel this is only going to end one way - and that Edna is going to go though some horrible times between now and then - whenever 'then' is.

another hospital visit

The nurses thought she was better than yesterday - maybe she was a touch more alert - but she was still very obviosuly poorly. Her IV had come out (did she pull it out despite the huge bandage on her hand) but I know it will be going back in. The consultant surgeon came round while I was there. One sure sign the Edna was poorly was that she didn't protest at him not talking to her. They are still focussing on her nutririon and suggested I bring in some favourite foods. I exoplained that I had been trying to get her to eat more for over a year. She doesn't WANT to eat or drink. I couldn't get her to drink anything other than a mouthful of Fortisip during the 2 hours i was there. And as for eating - there was no chance.

I get the feeling the orhopods know they are fighting a losing battle - but dont want to die on THEIR ward.

I think todays word is frustration

Euthanasia

There is debate going on at the moment about whether euthanasia/assisted suicide should be legal in this country. The argument used against it is that it could lead to vulnerable people being pressurised into opting for euthanasia by their families. It is a debate I can understand - but am quite clear in my views, I am against assited suicide.

Edna was much more confused today. She was hallucinating, talking to invisible people, eating invisible food and I think doing invisible crocheting. She is also on antibiotics for a possible lower respiratory tract . She was sitting out when I was there -mainly becasue they were worried she would fall out of bed. She is VERY restless and I can understand why they put her in the chair. She apparrently hasn't eaten or drunk much at all today - and she has an IV up again.

Overall she is incredibly poorly - and I found myself thinking the very unoriginal thought that we wouldn't let an animal linger on in that state. But everything is potentially treatable. If the antibiotics work her chest will be fine, if she starts drinking and eating her overall health will improve and both could improve her mental state. So they treat. She is back on nebulisers as well.

I know that if Edna was competent and was offerred a pill to end it all she would take it - but I am still against assisted suicide. If it was legal what on earth would I say if the doctors asked me what I wanted to do about Edna in her current mental state? It would be a terrifying responsibility.

I couldn't bear to see her linger on in her current mental state.

Back to West Heath

I went ot see Edna today. before I saw her the nurse told me she wasn't really eating, and clearly wa sn't going to eat - unless it was wine gums or crisps. She told me they would just stick to the build up soups for now. She re-assurred me that heroic acton like ng tubes would NOT be on the cards. She warned me Edna was quite confused. That proved to be an understatement. It was indescribably distressing to see her fiddling with things that were not there. At times she couldn't even work ot how to use the drinking beaker with her tea in. She also kept shuffling around the bed so she ended upwith her head off one side and her legs off the other.

She hardly drank anything while I was there - and ate nothing even though I offerred to get her some more wime gums. She had 3 half eaten packets of crisps on her trolley and wasn't interested in them either.

While I was there Dr Goodman came to see her. He is the geriatrician from West Heath who has now looked after her three times. He not only said she would be going to West Heath next week, but has also said he doesn't think she can go back to her flat.This is the first tine she has been under the care of one consultant for consecutive admissions - and he can see the same pattern I have seen. This gave me the chance to say I felt the same - but still have HIM take the flak. But now she can discuss the idea and with whatever bad grace she likes she can finally give way. She can tell herself she is only doing it because the doctor told her. The elephant in the room has finally been pointed out!

Whatever happens now, things are going to be much easier for me in the long run. In the short term they could be tricky .

I still dot see her being discharged from West Heath - it will take a miracle. But I feel as happy as I can be that nothing is or will be done against what I know her wishes to be. I am also happy we can sort out her DNR status when she goes to West Heath.

She was a LOT more confused today than she has been. I dont hink I have ever seen her quite so bad.

A night of reflection

I haven't slept very well - not really a surprise under the circumstances. I am not going to work today. I told Jane not to expect me this week - and that if I then COULD get back to work earlier it would be a bonus for both of us. This morning I am so tired I dont want to move. I normally do 30 minutes exercise each morning but this morning I can't face it. I know I need to get my mind and emotions sorted out before I try to go back to work. I will want to exercise when my mind is sorted is out.

So have I had any useful insights after thinking about the situation? Well I certainly haven't had a eureka moment where I have seen a strategy that could be the key to sorting everything out. But it is a complex problem . I have found my reiki very useful. I tried applying the 5 principles of reiki to the situation last night and it did help. Reiki is as much about spiritual growth as it is about healing

Just for today do not worry - well worrying doesn't acheive anything . Good advice - but hard to do. But I am NOT worried. I am scared of the unkown future however. But I have faith that whatever happens will be for the best

Just for today do not be angry - there is no point in getting angry with Edna - and one thing I have developed over the last year has been patience.

Honour your parents and teachers - Edna is both parent AND teacher. She is teaching me patience! I am honouring her by doing my level best to make sure her voice gets heard - and by trying to understand what her wishes are.

Show gratitude for every living thing. Gratitude for Alan and his drinking? Gratitude for Edna and her stubborness? That is a tough one. But I have realised both situations have taught me things I needed to know. Also without Edna and Alan I would not have Steve. End of message

Earn your living honestly. Of course I dont earn a living in my dealings with Edna - but I do try to do it with honesty and integrity. It is frightening how much power I have in relation to Edna. The hospital would have accepted me signing the consent form for the operation. If Steve and I go and talk to the consultant and say we feel she should be 'not for resus' they would listen and probably accept. The fear of making the wrong decision keeps me honest in relation to that. I try NOT to take decisions unless I have no choice. That principle is at the heart of everything I do with regard to Edna.

I no lomger feel like acreaming - but yesterdays issues need calm thought - and the question of her competence is suddenly very crucial. Because if she is competent and refusing food do we have the right to overrule her? I dont want to consider the ramifications of her being judged incompetent.

Feeling like s creaming

I changed the title of the blog again today to 'demented life' because the phrase could apply to both Edna and myself - because my life has become fairly demented at times since this diagnosis was made.

Today I am concerned about both practical and philosophical issues.

The practical issues are she has pulled round from yesterdays very low point. I almost felt I would be going in to sit the deathwatch today - especially as all the nurses would say over the phone is that she was comfortable. But when I got there she was awake, quite alert - but out to play with the fairies most of the time. At one point she was complaining about me to me in the third person- telling me all about what 'Sally' was like and how she wouldn't get the shopping Edna wanted' But I think most of the time she knew who I was. But she was still constantly fiddling with things, and couldn't even work lout how to drink from her beaker at one point. In some way she has reverted back to infant status - and it is horrible.

The philosophical issues are tough. I asked the nurse (while I was on the way out) what odds she would give of Edna surviving this. ' Oh quite good as long as long as she starts to eat and drink' was the reply.

Now why I feel like acreaming is that I then tried to get across to the nurse that she isn't going to start eating and drinking enough. She hasn't been eating and drinking enough for over a year now. But when I tried to explain the problem how Edna hates being dependent on other people and and really doesnt want to live unless she can be independent all she said was ' A lot of old people are like that' I dont think she heard me at all.

So if eating and drinking is the key how far will they go to ensure her intake is sufficient? I'm guessing nasogastric feeding may come in. If they want to do that they will need consent. They probably wont ask Edna - which leaves me with a dilemma. But as Steve pointed out at least they will have to keep her in hospital if she has n/g feeding.

That also raises the whole thorny issue of whether they should resus her. Based on what the nurse said I am fairly sure the idea of her being marked as DNR wont be on their agenda. If I rasie it i look like an uncaring relative trying to get rid of tricky problem by letting her die because I can't be bothered.

Steve wants us to make an appointmnet with the consultant to discuss the issue and he will come along. He has no doubts - but I can see the ethical issues involved on both sides.


It is so easy to regard a person with dementia as just the dementia. What I am trying to keep at forfront of my mind is that Edna is STILL a person, with wishes even if she is unable to express them at times.

I have no doubt at times she feels like screaming as she tries to express herself

I cam't thinl of a witty title for todays entry. We went to see Edna and Steve got very upset - as did I once we were off the ward.

She is very confused - much worse than I have ever seen her. The fact that it is probably drug induced doesn't make it any easier. At one point she grabbed my hand, put my fingers to her mouth and started sucking them. I asked her if she wanted a drink and she said she did.

We didnt stay long. She kept on dozing off. Anyway it felt as if she wanst really there. Steve said it reminded him of how Alan was the night before he died.

Tomorrow I want to ask about her resus status. Apparently resus is automatically done within 48 hours of surgery. Do I have the right to say they should not attempt to resus her if she has a cardiac arrest?

The sister doesn'tknow me and when I said I was daughter-in-law (I dnt even bother with the ex bit - it confused things even more) i could see she was about to say 'What about her son' So i hastily cut in and explained both ehr sons were dead and that her only relative was MY son. Steve thinks making her DNR is the right option - but it is a huge responsibility.

Surgery

Edna is in theatre as I type this. I went in so I could walk down to theatre with her. She was very obviously highly confused. Almost the first thing she said when I got there was that she had found little Fred - and he was still little. I've never heard her talk about a Fred and dont know who he is.

I prsume they had given her something as a premed that was making her more confused than normal.

Thankfully she had remembered the important thing - that she was having surgery and she wasn't protesting about having it. She was clearly very unhappy about her situation - and I can't say I really blame her. She wasn't complaining abut being forced into it which was a relief for me.

Getting ready for the operation

Edna has to go and have surgery tomorrow. Without surgery she will die due to immobility. She will die if they do the opeartion they really NEED to do. So they are doing a halfway operation that should get her back on her feet sort of. She isnt fit enough to have a general anaesthetic so it is being sone under spinal. I am going in tomorrow so I can go down to theatre with her.

I have explained the op details to her so she was able to sign the consent form. I spent nearly four hours at the hospital today visiting Edna and waiting for the doctor to turn up. Ileft WAY after visiting had officially ended.

She was still confused - but better than last night.

She kept on fiddling with buttons on her nightie, fiddling with the entry ports o her IV line, fiddling with the blankets. fiddling with her ring......... you name it she fiddled with it. She was talking about thngs that couldnt have happened like seeing Alma this morning, the ward having concerts overnight, the ward becoming a restaurant over night. She thought she ought to be paying for things like drinks - food and even her operation. She thought people were talking about her. She told me she hadn't been offered any lunch. The list goes on. But most upseting of all was when I left and she panicked about her keys. i told her I had them and she asked how she could get into her flat tonight.

She does realise how serious things are. She doesnt want the operation but at one point said 'If I dont have the operation I'll die wont I' I was honest - no point in anything else really. She showed some fighting spirit - and that gives me a bit of hope - but there are so many things that can go wrong...........

They have already mentioned her living arrrangments - and when they realised she was NOT in residential care - they decided they needed to make a referal.

It will take a miracle to get her back to Fosters - but it will take a minor miracle for her to survive this anyway.

The doctor was prepared to use the consent form for incompetent patients - but I was happier with Edna signing her own form - although he still got me to sign as a witness. I feel I have to fight for people to actally talk to Edna. She does undertsnad when things are put in the right way -and the right speed.

I dont want to thnk about what I would have done if Edna has refused to sign the consent form............

How did we get here?

I am tred this morning - no surprise. but amidst the worry there is a feeling of anger and I might as well expel it here as anywhere else. She fell getting to the door entry system to let the carer in. She hadn't taken any sort of support with her to help her walk. OK it is possible she would have fallen even if she HAD had the zimmer frame, or her pusher or even the trolley with her. But with some support the fall might not have been as catastrophic as it is. She also said that she was trying to hurry.

Basically her stubborness has caused this. Her refusal to accept she is as disabled as she is, her refusal to consider leaving Fosters. And there is part of me that wants to say 'I told you so'. But it wouldnt do any good because I have no idea how much was her stubborness and how much her dementia. Doesnt change the fact that I feel like screaming is frustration, anger, worry, fear - you name it.

I feel surprisingly calm this morning all things considered - or maybe resigned is a better word. We are now in almost a worse case scenario - and it cna't get much worse. In a way I am almost TOO calm - I am suppressing emotion and I know that is not good.

Deja vu

Edna is back in hospital. She fell while trying to answer the door to the carer . She went without a walker of any sort, trying to rush to answer the bell and fell.

She has fractured her femur around the pin of the artificial hip she had about 8 years ago. This is not an easy problem to fix and I have no idea what the next move will be.

All I know is she is in hopsital, going to have a catheter - since there is no way she can be got onto any sort of toilet/bedpan without being in a lot of pain, and VERY confused due to pain/morphine /dementia - take your pick.

A small step in the right direction?

When I got home today Tony told me Edna had rung - something about a hopsital appointment she thought was tomorrow. I rang her back and she had found the letter from the mental health trust about her apppintment on the 4th (Friday) She thought it was tomorrow.

I reassured her, told her I would ring her to remind her on Friday morning. Then she came out with the immortal words

'Oh Sally I do get in such a muddle - I really really need someone to help me with things'

I have said I am happy to do it and and have said I will pop across tomorrow to see her. I was going to go across tomorrow anyway. Hopefully she wont have chnaged her mind by the time I get there and we can actually get some things sorted out.

The care package again

I have spoken to Barbara and Tracy (feom the carers) and we are in agreement that the care package is working as well as Edna will let it work. Everyone agrees that Edna can't be forced into using the nebuliser or eating if she doesn't want to.

I have asked Tracy to ask the carer's to remind Edna about her appointment on Friday. I will remind her on Thursday evening and Friday morning and hopefully she wont say 'No-one told me'

I am not optimistic though.

I know that no-one else involved with Edna really knows that she just wants to die. I have mentioned it - but no-one is really listening to me. I know Edna feels no-one is reallylistening to her. Thats what I try to do - listen.

I dont feel overwhelmed by Edna today. In fact I feel very calm. If this is the result of the reiki training and self healing sessions then bring it on! Thats why I am not bothered by the fact that I dont feel I am being listened to or believed. It wont change anything whether I am beleived or not.

I know God is listening.

This whole experience is really making me think about the ethics involved and a patients right to self determination.

Getting help from the experts

Barbara the social worker is due to ring me tomorrow and I will be glad to speak to her because I feel I need her advice.

I know that Edna is NOT using her nebuliser. I am worried that she isn't eating much - but cant prove it. We had a minor spat about her shopping today and how I could presume to know more than SHE did about what she does and doesnt need bought. She still wants to keep as much control as she can.

But I am concerned she is losing any ability she might have to manage even the small things she still has control of. I discovered a mug put away in her cupboard still with sugar in the bottom. And her mug on the drainer also had sugar encrusted at the bottom. I am guessing Edna tried washing up and didn't see the sugar residue.

It is possible the carer's were very sloppy. That is on of the thimgs I need to check with Barbara. The other thing I need to check is how much we have the right to override her wishes. I dont want to force her to do things she doesn't want - but I dont want the line be crossed into neglect.

I came away feeling very emotional. Angry and upset. But I am not letting the emotion overwhelm me. Instead I am trying to listen to what the emotion is trying to tell me.

Dementia is a disease which steals a fundamental part of a person - their personaility. The personality may be very superficial - but it is the outemrnost part that is used to communicate with other poeple. And it is so easy to look at someone with dementia and think' What a waste - what is the point of their life' I know that is what gets to me.

But I realised today that this situation is almost certainly going to teach me something I need to know about myself, or other people. I dont know yet what - but I am confident that I will be able to use that knowledge/insight to help in some way in some situation in the future. Everything happens for a reason .

I can redeem what appears to be a pointless tragedy - by learning from it.

Keeping the balance right

I keep 3 blogs. One is all about my efforts to lose weight and my general health. I started this blog so 'Changing life and times' didnt get overwhelmed with Edna issues . I also started a third blog when I began trying to develop any psychic ability I may have to help me cope better with Edna and her problems. As a direct result of that attempt I started training as a reiki therapist on Saturday and things did not go well yersterday with my first attempt at self healing - which is the initial step before you can consider treating others.

Although I keep 3 separate blogs , sometimes they all cross over and today is one of those days. So I have cut and pasted the beggining of wieght loss blog into my other blogs .

'I got frustrated and annoyed with myself yesterday when my reiki meditation didnt go well. With some help I worked out that a bit of me was angry that I was giving myself something else to do. Do I really have time to learn about reiki when I have to work, do things for Edna , want to spend quality time with those I love....................

The answer is reiki is all about good health and balance. It is SO much more than just the mystical laying on of hands to treat an illness. It is also all about the health of the practitioner. In a way I have been trying to carry out the 5 principals of Reiki for 3 years without realising it.

This blog has been about my health - both physical and mental - during challenging times. Times are still challenging. I have to go and see Edna today and already I can feel my stomach tying itself up in knots as I wonder what I will find when I get there.

I need to be healthy to cope with everything.'

Edna unwittingly makes huge demands on my physical mental and spiritual strength. Reiki helps me support all three. It may possibly also help me help Edna more directly but that is highly unlikely. I really dont see myself uisng reiki on Edna . But the knowledge that I could if I was asked removes a lot of the feeling of helplessness that I have about the situation.

Food

Yesterday, having checked with Sue that the Fosters staff wil lNOT do Edna's shopping, I went to Edna's straight from work to sort out her shopping. I had asked Sue to tell her I would be over so she had drawn up a shopping list - but not put any ready meals on. I vetoed the bread she had put on the list becasue she already had 2 loaves in the freezer. But she hadn't put down any ready meals. She thought she would be having meals on wheels starting on Monday. So I explained once again that wasn't of her package, Then when I looked in the freezer I discovered she still had 3 ready meals left. I only saw 2 on Thursday when I did a quicl check It turns out she didnt have a meal at lunchtime yesterday because she had a Fosters breakfast - two eggs. I am betting she wont have had a hot meal yesterday evening and that the breakfast will be all she ate yesterday. I am also wondering how many other days she didnt have a hot meal.

I beleive there is an element of her controlling her food because it is about the only thing she feels she DOES have control over.

Ethically I am in a difficult situation because I believe she still has capacity to decide things for herself. If at some level she is choosing not to use the nebuliser or eat, is enforcing it the right thing to do?

If she doesnt have capacity - and that isn't my decision thank God - then that makes the situation even tougher because she will have her right to decide anything taken away from her . And it will put me in a situation I dont want to be in.

Fact or fantasy

I went to see Edna today after work. The carers were there when I arrived - and Edma had no teeth in.When the carer's left they said they would see her later. Edna said they needn't bother to come back. They said they would be back however.

There was a note on the communication file asking them to prompt her weekly alendronic acid. I didnt take a peek to see if she had taken it today. What I DID take a peek at while Edna was retreiving her teeth from the bathroom was the nebules. She came home with 2 boxes. One is by the machine the other is on the bottom shelf of the table by her chair. In theory this one is untouched - and from my quick peek it was still full. Definitley only one nebule has been taken out of the box by the machine so I reckon she hasn't used the nebuliser at all.

This doesn't surprise me - but I dont know what I should do next. Is she deliberately lying to me or does she really think she IS using it?

Another little problem is that Edna has tried to tell me Diane will do her shopping. I need to run that by the warden tomorrow as I really doubt if they are willling to do that. Since I doubt if Ed has the cognition to draw up a shopping list I dont think that is at all a good idea.

She didnt object to me going over - which is good. And she said she was always glad when I went over - which isn't always true - but I feel it was true today.

My problem for tomorrow is will the pharmacy have her prescription so they can deliver the new blister packs? And will they include the Alendronic Acid? If they do then the box sent by the hosital will have to be removed to make sure she doesnt OD - so I MUST see those blister packs - and somehow do it without upsetting Edna.

And for my next miracle................

Alendronic Acid

I have decided NOT remind Edna about taing her Alendronic Acid. If she remembers that will be wonderful - but I dont tink she really needs it - and I certainly dont think she needs the side effects. I will go and see her tonight and find out how things have gone. I can physically check things like how many nebs have gone and if any doses of tablets ave been missed by looking at the boxes. If what I see tallies with what she tells me that will be a good sign.

I dont know how to cope

I have been to see Edna and I have come away feeling totally out of my depth and wondering how on earth I am going to cope.

The carer turned up eventually (must contact them to ask if they can please ring someone if they get delayed in future) prompted medication and made her some breakfast - toast and jam- which she didnt eat. Looking at the communication sheet yesterday evening when the carer turned up Edna was cooking herself s couple of boliedf eggs but was very breathless. She was persuaded to sit down and let the carer finish the cooking.

I think the carer must have set up her nebuliser last night. I think the one this morning prompted her about it. However Edna said she had found a piece of plastic on the floor and wanted to know what it was. When she finally found it in her handbag - it was a vital bit of the nebuliser set up. So I went to replace it in the well where the liquid goes - and discovered it had liquid in it.That is not surprising as without that bit of plastic it wont nebulise properly. But Edna insisted she HAD used it and it HAD nebulised - and that it there was still liquid in it becasue the doctir told her she didnt need to take the full dose.

I got quite irate about that - but she did nebulise the rest of the dose. She insists she can remember how to use the nebuliser - but it is patently clear she can't.

Then she raked up a very old issue - about how she got very upset when someone told her I didnt want her any more. That happened MONTHS ago during her Selly Oak admission when they diagnosed the dementia.

Yesterday I had asked her if she wanted to put away her clothes herself. She said she did. But this morning they were still in the bags and I ended up doing it for her. I think she was happy for me to do it.

Thats the problem - I dont know what she is happy about - what she isn't happy about or what she really wants. One of things she said this morning was she wished everythig could go back to the way it used to be. She genuinley doesn't see how much help she needs- and doesn't believe she would be ill if she didnt have the help.

What really upset me was when she said she wanted to go and see ther bank manager. When I pointed out she had set everything up so I could sort her accounts out, she said she had had a letter from the bank telling her she could end the arrangement if she wanted to . I strongly doubt she has had a letter. She has in the past (and mentioned it again today!) implied that I too often take over. This normally only happens when she is feeling most resentful about all the help she needs. I'm afraid the fact that she implied she had given me rights on her accounts when she didnt really want to was just too much for me. I'm afraid I left - and she knew I was upset.

I dont know if she means to upset me - I dont think she does. But I can't be sure. And that is why I feel out of my depth..................

I knew this would happen

I haven't gone to work today. I decided I needed a day to make sure Edna was sorted out. And its just as well. I have just a call from the wardens to say no carers have turned up this morning.

But I am not going to rush straight over - the wardens are there. If I am to be effective in helping Edna I need to try and destress -and that means focussing on all the issues and deciding what priorities are. I can't run around trying to solve everything.

So what are the problems? Her physical ability to care for herself which is limited by her COPD. Her weight loss -which I think we have to presume is due to her not eating well. He inabilty to remember things. Yesterday almost the first thing she told me was that no-one had told her she would be going home. However I know I told her several times - and Barbara the social worker spoke to her yesterday morning to get her to sign the form to say she consented to the care package.

The carers will prepare food for her - but no-one can force her to eat it. However I am guessing the carers will report if they have concerns about her food intake.

Her COPD wont really improve. As long as she gets her inhalers and nebuliser she should tick along ok - but she has to remember to use them - and in the case of the nebuliser remember how to set it up. I am not optimistic.

Her memory is really the key to everything - and that is the one thing no-one can do anything about.

This blog is not helping. All I can see is things I can do nothing about. And in reality that is my situation. I can't do anything except her shopping and providing her with some company and emtional support unless I take on much more hands on role - which is incompatible with work. This would be absolutely a last option for me.

Somehow she needs to be persuaded she needs top go into residential care because that is the only place she will get the help she really needs.

Should I make that my goal?

Home again

That coould refer to either Edna OR me as Ic ame back from my lovely weekend away today. I got home about 11.30. 3 hours later I was with Edna helping her to settle in - and the contrast between the holiday and helping Edna was incredibly painful and I found it very upsetting. It doesnt help that I am tired from the 125 mile drive, but I could sit and cry. I have no doubt a nights sleep in my own bed will do a lot of restore my equilibrium. But I am very unsure if I will make it to work tomorrow. Not only am I physically tired, but there are a lot of things I need to re-assure myself about her care package. I am nervous about whether it will all click into place the way it should.

They have added to her medication. As well as all the tablets she was on they have added Oxybutinin, Adcal , and weekly Alendronic Acid. I had no idea about the last two - and the weekly tablet has so much potential to go wrong. And then of course there is the nebuliser..................

I am not optimistic about her coping with all this. The only good thing is they have cut her Furosemide down from 60m a day to 40mg a day.

Hopefully tomorrow I will be reporting how everything has gone really well with the care package.

Therpeutic value of blogging

Blogging is very therapeutic. I can expend all my feelings on the blog - and often in doing so it helps me rationalise the situation and see solutions to problems.

This morning I have dashed around to make sure everything is as ready as possible for Edna's discharge so I can relax and have a good weekend away.

So I have been over to Fosters to make sure she has enough food in her flat, to remove one of her walking aids that she no longer needs, to arrange for delivery of the aids that NHS loanns tried to deliver on the 13th - and try to sort out what went wrong with that.

I also went through Edna's post and have paid 677 - 00 of overdue allowances paid to her, and arranged for transport to collect her for an appointmnet at the memory clinic. She also has an appopintment at the fracture clinic on 28th but she has the card for that so I can't arrange transport as I can't remember the time of her appointment or the telephone number to arrnage tranpsort.

I don't mind doing these things, but what worries me is how Edna will feel. On a good day she will be grateful. On a bad day I will be accused of treating her like an idiot.

I need to see ALL her post to help her sort it out. At the moment I cannot see any way to do that that doesn't involve me going over at least 3 times a week.

Plus I have to make sure she remembers to go to the appointments. I can't rely on her to remember on her own. But agian any attempt to help her may be seen as me accusing her of being 'daft'

I am not going to say I feel despair contemplating these issues. But I do have a high level of concern. I can't see any solutions at the moment.

So here goes with the therapy

AAAAAARRRRRRRRRGGGGGGGGGHHHHHHHHHHHHH

FFFFFFFFF@!^%$£%^^*^%%*(*(CCCCCCCCCCKKKKKKKKKKKKKKK

SSSSSSSSHHHHHHHHHHHHHH***********************TTTTTTTTTTTTTTTTTTT


If I could rely on her mental faculties and memory this situation would be much more manageable. As it is I can't, I can't even rely on her to accept my help.

I may as well be honest and admit I am dreading next week. I am probably going to have to go over every other day, maybe every day if she doesn't settle in well.

I am close to being in 'rabbit in the headlights ' mode - close but I am not going to go there. I am also not going to spend time worrying futlily over thangs that may never happens or that I can do nothing about. All I can do is meet situations as they arise.

I also have faith I will find solutions. ' The universe already has all the answers'. That is what psychics believe - and so do I except I use the code name 'God' All I need to do is ask in the correct way and I will find them.

I have no doubt I will find my new meditation techniques invaluable in coping during the next few weeks.

Mrs Hyde revenant?

Today has NOT been a good day Edna wise.

First of all I got a voice mail from the NHS loans people saying tey tired to deliver some equipment on 13th August but no-one was there. Well - of course no-one was there - Edna is in hopsital and I had no notification of the fact that they wanted to deliver anything. Let me guess - the wrote to Edna to let her know the delivery date!

I tried to get back to them but so far they have not got back to me .so that is a job for tomorrow morning. I'm sure they will be pleased to learn she goes home on Monday and needs the stuff by then. As long as they let the warden know they are coming, the wardens can take it in. I will go over to Fosters tomorrow (great start to my weekend away!) and sort out Fanny's flat and warn the wardnes what is going on.

So that was the first thing. Then when I got to the hospital she was in fighting mood. She made a mess of setting up her nebuliser, then blamed the nurse for watching her. Then she didnt want to keep the mask on for the full time., She tried to take it off after a minute and got cross with me when I told her she had to keep it for longer (like about 15 minutes longer). So she appealed to Derek (her favourtoe orderly) who told her she DID have to keep it on. That led to veiled mutterring s about hwo the doctor had told she didnt have to keep it on if she didnt need it and she would ask the doctor when she saw him.

The final straw came when she declared she didnt want the commode that the OT's feel she needs,and that the NHS loans place are delivering. This despite the fact that she agreed to having it, and thought it was a good idea just over a week ago. So she is saying she will refuse to accept it. I said I would talk to the OT's but she said no SHE would talk to the OT's. As it happens the OT's are away so she can't talk to them. It will be interesting to see how she reacts when she is her flat.

So it wasn't an encouraging visit. I think at a subconcious level she is worried about going home. But she wont admit it.

I am worried about the way she managed (or didnt manage) the nebuliser. But time will tell

The Sisters parting comment when I popped in to say goodbye was ' I hope she stays out of hospital longer this time' I think they know she will be heading back their way short of a miracle.

Discharge planning

I got a voicemail from Barbara the social worker telling me that she had a budget for a discharge package - and a 48 window to use it in. This meant discharge on Thursday with Tony and I going Pendle on Friday. While not ideal I felt if that was the only option then we would have to manage. However a few minutes later I got a call from her saying she had spoken to Tracy - who I think is in charge of the discharge team who provide the initial care. Tracy knew Edna and apparently knew me too so I guess she must have dealt with Edna in February. Tracy said that I was key to Edna's dicharge working, and to do it when I wouldn't be there would be silly - so the budget is being held over the weekend - and Edna is going home on Monday afternoon.

I can have my weekend away without worrying.

Barabara's comments on her being sent home on the nebuliser were forthright. She told me that a few minutes after they left Edna's flat after the home visit, Edna looked out of the window and said 'Oh I live round here' She seemed to have completely forgotten the visit and that she had been in her flat a minutes earlier. It was a relief to have someone from the hospital who could understand my concerns. I am sure when the nurses tell me she is coping OK with the nebuliser they are telling the truth. Edna herself said there is really nothing to it - but her statement did a ring of her trying to convince herself.. I am sure the nurses are standing over her a lot to make sure they CAN give a positive report because they need to get her out of the bed. I don't blame them- they are under pressure and once she goes home it is someone elses problem.But I wish they would at least acknowledge the problem her memory is going to cauase with the nebuliser.

Edna was very emotional - almost in tears at times. She said how much she loved me and how proud she was to have me as a daughter-in-law.

I have been trying hard to listen to her - and I think it is paying dividends

Nebuliser training

They have started training Edna today. They feel she is doing well with it. Tomorrow they are going to see if she remembers to use it at the right times.

They have a vested interest in getting her out of the hospital. - or am I being cynical in thknking this could colour their perceptions of how well she does

Nebuilser.......

It is definite they want to send Edna home on a nebuliser. I am trying to stay positive but have many concerns about this. Edna jst gets upset and says of course she can cope - but admits she doesn't remember the problems she had last time.

On the plus side last time she was trying to nebulise 2 drugs, and had undiagnosed untreated dementia. This time they only want her to have one drug - and of course she is now on treatment for her dementia.

The carers can prompt treatment - but not administer it. But what are they going to do if they prompt it and Edna then can't or wont set the nebuliser up and do it?

I need to talk to the OT and see how they think Edna will cope. But I must be careful not to sabotage anything. Edna has already muttered about me removing all her confidence to cope. She threatened to discharge herself at one point.

But is her confidence real or founded on false dementia memories?

I just have to wait and see. I have been thinking a lot about faith lately. I need to have faith in Edna and in the staff teaching her. if she is meant to go home on a nebuliser it will be alright. if she isn't then it wont happen .

Small infection - big effect

Edna was much better today. Among the ramblings she said that her eye was still being treated. I suspect her eye infection was just making her feel lousy.

I THINK she is back on the nebuliser - but I am not sure. One of the incidents she told me about was a nurse who had tried to take her inhalers off her. And she had her blue inhaler in a pcoket on her blouse - as if to make sure she didn't lose it. Something has happened with her treatment but without asking to see her drug chart I dont know what.

The leg brace is off - but she has to go back on August 28th. Will she be home by then??? Time will tell

She started talking today about how she had done some laundry and washed her knickers. I am 95% certain that isn't true - but I wouldnt put it past her to try to wash her knickers to save me work.

When she was telling me the inhaler incident she siad she had told the offending nurse that she needed to listen to hat patients are saying.

I tried my hardest to listen today and her whatever she wanted me to hear - but I am not sure I succeeded.

I meditated before I went in to see her to make sure I was in the best frame of mind

Going downhill?

Edba looked porrly today. She was asleep when I got there and when she woke up it was obvious her left eye was VERY red and looked infected. I was a bit annoyed because I had mentioned yesterday that her eye looked red and the doctor was supposed to look at it - and didn't. Luckliy Laura was on and she could see why I was a bit annoyed. Edna's arm now has another dressing on and it seems the problem is the ssme sort of of blister she gets on her legs. That cannot be good news.

She also complained about feeling tired all the time. She has also lost more weight while she has been in. She has lost 1kg. She wanted to know, and then got upset when i told her because she says she has been eating well - and that everyone tells her she has been eating well.

One of the sisters chatted to me about getting Edna to use a nebuliser. I think i have scotched that one - and once they knew what inhalers she nmormally takes, they decide to write her up for those and see how she gets on. So that was one positive thing from todays visit.

The tiredness is so reminiscent of what happened to Mum just before she died.

Hospital visit

I went to see her tonight at hospital. I realised she looked very gaunt, with sunken eyes . One eye seems to have an infection as it is very red. She has a sore on her arm that is covered by a dressing, and her chest is very rattly.

Physically she looks dreadful suddenly. hadn't really seen how sunk her eyes were before. It was probably because she didn't have a glasses on when I arrived. It was a nasty shock

Much as I expected, she didnt seem to remember a lot about the home visit - and she seemed unhappy about some of the decisions especially the removal of meals-on-wheels. She feels she is losinf control of her life. And sadly she is - but that is because she isn't in a state to really control things. On one level she does realise that - but oh how it grates on her.

She commented at one ppint that if Alan had behaved himself we wouldn;t be in this state now. I got no argument about that at all. At one point she was insisting that she could still make decisions and get rpivate care if she wnated it. At anoether point she was saying sh'ed move down to Devon to be near Len.

I think she is panicking about the situation.

The home visit

The home visit went OK. The plan is she will have 4 visits a day but no meals on wheels and a commode for her to use over night.

She also needs at least 2 nebuliser doses a day. Quite how that is going to be organised remains to be seen. And really she needs 4 doses a day - but that is impossible.

I am reasonably happy with the result. Its the best we are going to get until she decides to she needs full residential care. The OT agrees with me that is what she really needs.

Shopping will be a larger taks since I will have to get the ready meals that the lunchtime carer will cook for her.

All things beig equal she will be home next week

Hospital visit

I went to see Edna today. She was asleep when I got there and it was quite difficult to wake her up. She was on her bed again - this has been a trend for the last few days. She has only been sitting out once in the past week I think. Of course I dont know what happens when I dont see her.

She was very rattly and chesty. She says she is coughing up green phlegm. But I am not sure whether to beleive her or not. I didnt get the chance to ask the nurses. I am sure they have noticed her chest.

One of the first things she said was that she had been looking at holidays and trying to decide where to go. She didnt want anywhere too quiet. She wanted somewhere with a theater because she likes the theatre. I didnt ask where she had been looking for holidays. She was also convinced she had been moved several times and said the nurse would know. So I di ask the nurse - who clearly said she didnt know about it. But it was obvious to Edna that Malou agreed with me that she hadn't been moved. She got a little upset but then said Malou had been away for days.

She said several times she just didnt care about things. I worry this is because she feels she has no control over her life.

Occupational therapy

The OT tried to contact me on the way to work - but I hadn't got my handsfree kit on so I missed the call - and then couldn't get her on the number she left for me. They had an MDT meeting yesterday (I found that out from the nurse tonight) and obviously they want to talk to me about a home visit and aids for Edna.

When I got to the hospital Edna had been moved to the next bay down so she now has a new named nurse. According to her she had been moved 3 times - but I doubt it. I'm not sure why she was moved .

She told me she was going for a home visit (probably true), she told me she was pleased she was finally walking again (undoubtedly true) but that she had only just started walking (not sure if that is true or not - certainly she had a zimmer frame by her bed for the first time in a couple of days. But I am sure she has been walking with help. The nurses wouldnt wheel her to the toilet or bring her a commode when she is supposed to be mobile)

She was asking me to bring in some biscuits so she can offer biscuits to people at coffee break. This one had me puzzled. I wasn't sure if she toguht she was back at work or not. When I ponted out she had buscuits in the tin, she said tey were for HER, but she wanted bsucuits to offer other people. I got well confused with that one.

I got the usual information about the staff which I can't check if it is true or not - but suspect it is not. According to her almost ALL the staff have other family members who work at West Heath. Now I know that can happen - but not as often as Edna seems to think.

She had a nightie in her handbag, that she said was there becasue she thought it belonged to one of the other ladies. Its things like that that really worry - because that si when se seems totally out of touch with reality.

I would love a professional assesment of her cognition so I ahd some idea of how she is really getting on

Lack of control

I realised some years ago that I am happiest and at my best when I am in control of events. I also realised I had to take responsibility for my life and my feelings. Happiness is a choice we make not something we struggle to reach.

In many respects Edna's situation is the ultimate in lack of control because there are so many unknowns. The state of her mind, the rate of deterioration, her other medical conditions are all things I can do nothing about - but all have an impact on my life. Because when something goes wrong, it is me that gets the phone call - and it can be at any hour of the day or night. Its like being on call 24/7.

This blog is part of my coping strategy because the thought process involved in blogging often reveals useful insights and can help me keep a sense of perspective. What I said in my last entry about me not coping is true - but responding to an email from Jane made me realise that statement gives a distorted view of what is going on.

There is no doubt Edna's problems do cause me stress. The insane chocolate cravings I was getting after visiting her are a clear sign of that. For someone who is trying to lose weight a chocolate craving is NEVER a good thing. I dont always sleep well and that leaves me little energy for my exercise routine. I havent excercosed this morning yet - but I am determined to do some before I go to work. Edna's crises almost inevitably cause me physical problems. Her first hospital admission -almost a year ago - caused an attack of cystitis that took weeks to fully clear up. Recent events have triggerred IBS.

But I take a appropriate measures and medication when I need it, and somehow I am succeeding in losing wieght (very slowly) dont have high blood pressure or diabetes and unlike so many women of my age I am not on a regimen of regular medication. So my health is prety good.

It isn't the physical aspects of Edna's situation that cause the most stress. I retired and went part time so I would have the time for that. It is the mental/spiritual aspects. Because what I want to acheive is what is best for Edna - not what is best for me. I have to somehow get inside her skin and work out what the torrent of words she bombards me with at every visit really means and help her to be as happy as possible. I have to be so careful not to impose solutions on her. I need a high degree of intuition almost bordering on telepathy. And I dont have that at the moment. I am however taking steps to increase my understanding/intuition so I have more confidence in my abilities. That is the bit I am not yet coping with

I am scared of failing her, scared of being in a postion where I could force a solution onto her that works for me but doesn't work for her. My prayer is always that I will have the wisdome to make the right decsion for Edna. Because however much Edna may dislike it, unless the hospital know I am in agreement with the discharge plan and care package, they can't discharge her.

Its scary having that sort of power over another human beings life

The morning after

I still feel as if I could just sit in a corner and howl. So in terms of the title of my blog - at the moment I am not coping well.

I am have always maintained I am not really Edna's carer. But I read through the form Barbara gave me last night and I realised there are a lot of things I do that are valid to go on that form. So I will complete it and see what happens. After all I got the full time attendance allowance for her which I didnt expect. It is possible there is something I could for me. And at the moment I need to do something for me (see other blog!)

I was surprised when I got given that form. I think is is a sign that someone is looking out for me and that I am meant to fill that form in.

Planning for discharge

I've just got home after te meeting at the hospital with the Social Worker - where I had Steve to support to me. As ever I have come home with craving for chocolate. I am sitting here now and I could just burst into tears. It isn't that the meeting went badly or that anything really upsetting happened - thats just the effect visiting Edna has on me.

The meeting went OK I think. There was te usual questions about what Edna can't and cannot do which she answered more or less honestly. She even said that having meals on wheels was a major help. The only major disagreement was when the nebuliser was being discussed. Although at one point she dud say she had found problems managing them, for most of the time when that was being discussed she insisted she could manage to use the nebuliser. I think she is confusing a number of things. First of all she thinks managing the nebuliser means just putting the mask on, plus I realised during a later conversation she was remembering the time nearly 2 years ago when she had a nebuliser for 14 days when she was being assessed by the Lung Function clnic.

She got a bit upset after the social worker left when we were discussing the nebuliser issue, also when I refused to bring her in some cold meat to make a sandwich. the conversation then got very confused and it seemed that everyone else on the ward has family bringing them in ecatly what tey want to eat and ' I just want to know I can have things to eat when I want them' Guilt trip or what!

She did say somethings during the meeting that surpised me. She admitted to being 'browned off' As one of the questions she had to answer was 'Have you sufferred a bereavement' they can guess that she probably is depressed. I have to trust that they are used to interpreting information given given by old ladies with a degree of dementia. But I dont trust them. That is soemthing I share with Edna. She doesn't trust anyone - me included. And I feel bloody useless as a result.

When she was asked where she wanted to go from hospital she made it clear she wanted to go back to Fosters. But she also said she would like to get out more and maybe go to a club. She even said she knew one or two (not sure that is correct) But I know she wont make the effort even to go down to the common room.

She did (to be fair) say that I had offerred many times to take her out in a wheelchair but she had refused.

This time I got given a form to fill in as a carer. I dont know if that is a good thing or a bad thing . I think I got it because I do her shopping.

All we can do is wait and see what happens . I have to bebhonest and say that is clincially they feel she needs nebulisres, Fosters is not going to work unless they can get medically trained carers who can do the nebuliser for her.

The meeting could have gone a lot worse than it did - so I suppsoe I ought to feel hopeful - but I dont

Nebulizers

I got home today to be greeted by the news that the hospital had rung to ask if Edna had a nebuliser at home, becasue they want tos end her home on one. Now clinically I am 100% sure she needs s nebuliser- but she can't cope with it. She can't manipulate the nebules, she gets confused when trying to manipulate the mask and stuff.

Then of course there is the small maer of her remembering to use it.

It would be a DISASTER. It won't work. So I rang the ward to exprrss my views as politely as possible and got told they wondered if the carers could do it.

Dont they know what social services carers do? If anyone should know THEY should Or are they hoping I can pop round 4 times a day to give her her nubuliser???

We have the meeting tommorow to start discussing her care package for when she goes home so I can raise the issue then thank goodness.

I did ring the ward and tell them that she DOES have a nebuliser- but that IMO it was a non starter and gave them a bried resume of my reasons - so I don't feel TOO frustrated - but I do have a nasty feeling of deja vu about all this
.

Not so well today

got a call about lunchtime from the hospital telling me Edna had been sufferring from chest pains, so they had given her an ECG and a GTN spray. I had been planning on going to see her today anyway so all that did was mean I went in as early as possible rtaher than leaving it until later.

When I got there she was on the bed, asleep, with a vomit bowl near her. When she woke she was glad to see me, and appreciated the Frangipan cakes I had got for her as per her request yesterday. She insisted I had one, but couldn't finish the one she was eating, Her chest sounded rattly and she was coughig up phlegm a lot. She said although the pain was better it hadn't gone.So when the nurses came out of report I buttonholed Malou and asked about the ecg and things. She is having blood tests tomorrow but Malou thought the pain had gone. I said according to Edna it hadn't and asked if the idea of a chest infection had been considered. Hopefully tommorrow the regular team will consider that.

After about 45 minutes Edna said I needn't stay. She denied feeling tired, or not feeling like talking, but I think that she didnt want company so I left.

I wasn't going to go in tomorrow but I will pop in at least for a few minutes to see if she is any better.

Whatever is wrong with her today, I think it started yesterday - so a chest infection is much more likely than heart problems .

'They could make something up'

Just come back from hospital visiting. She wasn't as perky as usual and although she was sitting on the chair when I came in she lay on the bed for most of the visit.

She is convinced the lady in the next bed is a) filthy rich and b) lives in Billesly Lane. Since she said she hasn't really got to know anyone on the ward I wonder how she knows. But the lady in the next bed also remarked (as I was putting away Edna's clean clothes) that Edna ewas lucky to have somone to do thigns for her, that all her relatives lived too far away to help. So when some visitors turned up for her, Edna tried to imply that her neighbour had been lying. Ednba did concede that the visitors didn't HAVE to be relatives.

The conversation then turned to visitor behaviour. Edna said sometimes people turned up, said 'How are you then just sat there for an hour. ' They could make something up to say' was her ccomment. Is it possible that she is talking just becasue I am there? I dont think she is deleiberately making things up to fill silence - but maybe that is a clue to what is going on in her mind.

She told me she had noticed an extra tablet in among her regular medication the other day, and hadn't taken it until she was sure it was correct. This was soemthing I was able to check on, and it turns out that apart from the Oxybutinin (whihc is still being given BD ) the only chnage has been to reduce stop her lucntime Furosemide dose. This was part of their stratgey to prevent her askig to go to the loo every 15 minutes. They are monitoring her legs and although they are a bit worse, they are still manageable- but the dose WILL have to go back up eventually - and probably sooner rather than later. I am convinced the reason she stayed out of hospital so long this time was becasue she was taking her water tablets regularly- probably for the frst time in years (barring hospital admissions)

She liked the pictures of Steve's proposed new cat, and our holiday hotel in Cornwall. She will probably remember about both those bits of news. I can understand why Alma found it hard to beleive she really had a problem because she is very selective about what she can and can't remember.

If it is really important in her world paradigm I beleive she will remember it. If it isn't then she won't.

I must test that theory over the next few weeks. If I am right I am not sure how helpful it will be but anything that helps me understand her has got to be a help

Laundry

Went to see Edna today - took her some laundry back and of course collected another load to wash. She seemed OK. In quite good spirits. but she was sure she had been somewhere to a surgery or another hospital. She hadn't of course - but she HAS stratde walking with a zimmer frame. I think she has been to the gym with the physios

She seems not to be bothered about her memory loss any more - but I dont quite buy that idea. She seemed very resigned to everything . I should be re-assured but I'm not.

She was very out of touch with reality at times. She was a bit concerned about money - but then said she wouldn't argue with me about it.

The truth is I dont have a clue how much of what she tells me is real - and how much isn't. I have no idea how good or bad her cogition is. How on earth am I suppposed to know if she is safe to go back to Fosters? And if she isn't how on earth am I supposed to persaude her to do what is best for her?

Tomatoes

For some reason Edna has a bee in her bonnet about tomatoes. She insists she wants a pound of tomatoes at the hospital. We almost fell out about it, with her going very huffy and saying she would get someone else to buy them.

Trouble is I dont know if she realised when she said it that she was in hospital not at Fosters. She has admitted she gets confused about where she is sometimes - and blames that on the fact that they look alike (they dont of course)

At one point this evening she was saying that her memory wasn't that bad- that she didnt forget important things because she wrote them down. Then she spoiled things a little by saying she hadn't had any important phone calls recently. I don't think she realised she doesn't have a phone.

Apart from that it was the normal 'torrent of words' probably meaning nothing - except I know they DO mean something to her. I just wish I could decode it. Or maybe she is worse than I thought and it is all fantasy.

I have to beleive that she is still in there somewhere tryig to comminicate properly with me.If she isn't then this is all so futile.

A torrent of words

That was the phrase Carolyn used when she was describing her feelings about Edna. Thats excatly what I had at the hospital today.

When I got there she had just spilled tea over herslef. She had fallen asleep with her cup in her hand and lost her grip on the handle. Its the second time she has done that to my knowledge - the forst time beig at Fosters.

She was absolutely convinced that she had been for a heart test this morning - that two porters had taken her out. The sister (who I knew from her days on Ward 7 at BWH!) assured me she hadn't been anywhere. I also discussed her drugs and bladder issues with the sister. Currently Edna is on 2.5mg BD od Oxybutinin. But we are agreed that the doctors should be encouraged to reduce it to 1 od. She is fine overnight. Its only during the day she has issues. I'm not certain it will work because I dont think she has detrusor muscle problems. Its all in her mind sadly.

So she is still out of touch with reality. I decided my best option was just to listen to the torrent of words - so I did. I still can't work out if there is any hidden message about her feelings in what she says. But I do know she gets upset if she realises she has forgotten something, or has 'surmised' something. She didnt say much when I told her she hadn't been for a heart test -except to say she would speak to the porters.

At least she is feeling neglected or feelig that I want to 'dump' her. I hope we don't get a repeat of that

A short visit

I popped in to see Edna last night . She seemed OK. They still haven't got confirmation from the doctors that she can weight bear and mobilise but one of the team will be on the watd today and they are hoping to get confirmation from him today. I wonder if I ought to make a fuss about the total lack of information in the notes? She would have been mobilising 3 days ago if they had done wnat they should have done.

I have decided visiting every other day is the most practical option. So far she hasn't had any episodes of feeling neglected by me. If that starts up again I will have to reconsider. Its funny how its worked out by I am guessing she will be being discharged about the time I am moving placements. That meas I can negotiate new hours and terms or maybe take a break at exactly the time it is needed.

Phone calls

My new contract phone and hands free kit came in handy yesterday as I phoned Dr Ostler to let her know Edna was in hospital. It turns out she DID have a memory clinic appointmnet on the 17th July. I was never awar of a letter turning up. I have to assume Edna goit the letter but ignored it or forgot to tell me. So I have GOT to do something about that when/if she goes back to Fosters. I have also told the ward that Edna is under Professor Padross for her dementia. Hopefullt they will call him in becasue I know the nurses are worried about he increasing confusion.

I will be going to see her tonight. I can already feel my stomach knotting up.

Thought for the day

When baby-proofing a room, what is the best way to do it? You get down on the ground and see the world through the eyes of your baby. Never before have such dangers and opportunities for mischief been so apparent! The same is true with relationships. Many times you may try to empathize with a person by saying "I know how you feel." But do you really? When a person cuts you off in traffic, do you curse them under your breath or throw an angry gesture? What if that person is really just having a hard day, dealing with an unruly toddler in the backseat? Attempting to view the world through another person's eyes builds empathy and thus a deeper understanding of that person. Think about others you conflict with before jumping to conclusions.

Two hospitals in one day

Today was Edna\s appointment at the fracture clinic. I had ro meet her there so the ward didnt need to lose a member of staff to escort her. Almost the first thing that happened was that she said she was desperate for the loo and 'nearly wtting herself' So two nurses got her on to a bedpan and she did actually use it. They took off the plaster and s ent her for an X-ray. While we were waiting to go in, she said she needed the loo again. I pointed out she had onyl just been and suggeste she distrtact herself by talking to me. Whiel she was being positioned for the x-rays (whihc she found painful) she complained again that she was 'nearly wetting herself' By this time I had realised that she had a pad on, so I tried to calm her by saying it didnt matter and she wouldn't be in trouble if she set the trolley she was on.

When we got back to the clinic ,she had a knee brace put on becasue they have decided she did NOT have a fracture and the problem was OA) and just before the ambulance crew turned up to take her to West Heath she was 'desperate to have a wee' and got put on the bed pan again.

As I was waking back to my car I was thining about her bladder issues and found myself hoping they didnt try to put her on Oxybutinin or anything like that.

I popped into to West Heath briefly becasue I had soem clothes to return, and during my visit she medtioned she had ben given a blue pill. On checking with the nurse it turns out she HAS been put on Oxybutinin - but the nurse said she didnt think they would keep her on it. That explains the dry mouth she waa also complainig about today. I can't decide if I am pyschic - or just know too much about how doctors think.

But if we can't get on top of the bladder issue - even though she can mobilise now - it is going to be a major problem becasue she will hate it if she has to wear pads and she will either cut down on her drinks OR try to avoid taking her water tablets.

I have told the nurses how concerned I am about her mental deterioration. they have noticed the same thing -s o it is not just me. An example is we saw a poretr in X-ray - and immediatley Edna told me what a nice man he was, that he had 3 daughters who all worked in the hospital. I wish I could work out WHY she feels the need to look as if she knows about everyone? It obviosuly meets some need in her psyche .

I hope that now she is able to mobilise she will feel a little less helpless and dependant - and she may then improve a little.

But I ended up the bag bad wolf ,public enemny number 1 today when I didnt immediately give in to her toilet pleas.

I am very fearful about the future . I am worried she will be shipped out of West Heath without proper care plan or care package. I am worried about whether she will be able to mobilise properly.

She has to go back to the fracture clinci on August 14th. Will she be home by then or will she still be in West Heath?

Post visit primal scream

I am siting here eating a double chocolate chip muffin. That is my therapy to stop me giving vent to an actual primal scream. The visit was stressful to put it mildly

When I got there she was upset and complained that the staff wouldn't let her go to the toilet. It seems she has been asking to be taken every 15 minutes - which isnt practical. I think the problem is she remembers about the accident she had on her first day at West Heath. And she is so anxious to avoid that all she is thinking about is making sure she asks to go in time. Of course this means she is constantly thinking about whether she needs the loo - with the result that she feels as if she does - even if she doesn't. At least my visit distracted her. She didnt ask to go once while I was there.

I checked on her medication and she has been having her Rivastigmine. So the deterioration is real - and very frightening. I must ring Dr Ostler tomorrow and let her know Edna is in hospital. I may be able to get some sort of advice from her about whether this means she needs an increase in dose or if indeed anything can be done .

I suspect most of what she told me during the visit was fantasy/delusion/displaced memory /hallucination. But once we got over the issue of the toilet (and when I sided with the nurses I was not popular) she was happy enough.

At one point she said she didnt have any idea what was going to happen to her. It felt very reminiscnet of Mum asking me if I knew what was wrong with her tha last time I saw her -one week before she died.

Not a nice thought.

Deformed people walking through the ward?

Just got back from visiting Edna. It was a trying visit in many ways. She was up and in her chair and seemed fairly bright. But I have really no idea how much in touch with reality she was.

Many of the themes were very familiar. Had I got her keys?

She had lost ................. and I needed to re-assure her that whatever it was (and there were quite a few) that it was at her flat 'Thats another thing I can cross off my list and stop worrying about'

The meal times were being mixed up.

She had told off a member of staff but not reported her to matron

But it was when she pointed out to me what she thought was a trap door and insisted there were people hiding behind it that I got very concerned. She insisted that she had seen deformed people come out from behind the trapdoor in the ceiling (aka light fitting) OR from behind a door in the wall further down ther word. She insisted she had seen them walking through the ward.

That is far and away the worst delusion/fantasy/hallucination she has ever had to my knowledge - and I am worried.

She has an OP appoitnment at SOH fractiure clinic on Tuesday at 10.00. The nurses have asked me if I can meet her there so they dont have to send an escort. I will tell work on Monday that I wont be there on Tuesday.

Another afternoon at the hospital

I have just got back from visiting Edna. I left home just after 2 and I have got home just afer 4. Every hospital visit takes at least 90 minutes out of my day. This is one reason why I find it all so tiring.

Another reason is that I find the visits themselves tiring. I am trying to work out why . I find talking to her so difficult. She often gets lost in the middle of a sentence and then she gets frustrated and upset. That is usually followed by a statement of resignation. I can't beleive I have been so slow to realise this but that is undoubtedly the reason she has stopped going to the common room at Fosters. She HATES the fact that she forgets things.

She looks around the ward all the time I am there smiling at people as if she knows them. Half the time I am sure she doesn;t But when she has stopped smiling at them she then tells me things about them. Apparently Gabriel (male rehab assistant) has 4 children - 3 girls and a boy. Now it is possible she HAS discussed things like that with him - but it seems unlikely because he is afrocarribean - and her attitude to all non-white races is sadly anachronistic - and very un pc. At times the things she says embarrases me. So I find it diffcult to beleive that she would have that sort of converstaion with him. It is even more unlikley that she would remember such details.. So I am sure that when she tells me things like that they cannot be true.

What I am puzzled about is why she thinks she HAS been told these things? Or even worse why she is deliberately making them up. I am guessing its because it gives the illusion of normality in her life.She is a bit of a nasey parker and always likes to know what is going on round her.

Today she made a very telling statement. She said she doesnt belive in life after death - but that hell is here on earth.

She came out with other stuff that cannot be true -like somone doig laundry for her. I think she was getting mixed up with the girls at Fosters. I think a lot of the thigns she tells me are like that. They are things that have happened - or that she has been told - but not in the time and circumstances she attricutes it to when she tells me.

I feel I am damned if I do and damned if I dont as far as correcting her ins concerned. If I DO manage to find a flaw that makes it obvious that what she has said isnt true, she gets upset. If I accept what she says at face value - and then it becomes obvious to her that she MUST have been wrong, she will get upset that I haven't corrected her.

I think the visits are so tiring because of the mental effort and stress or talking to her.

Pretty obvious really

Dear God where will all this end?