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.