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
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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