Predictable

When I explained to Edna this morning about Fosters not providing personal care services, her first reaction was that it didnt matter becasue she didnt need the care anyway. Totally predictable. It then went into a diatribe about how they didnt turn up early enough anyway. I've told her that is something we can discuss at the meeting on the 14th.

She was dressed when I got there just past 9.00 this morning. The carer turned up about 15 minutes later - by which time I had already given her a cup of tea and given her her morning medication.

She was consfused about what day it was and one point thought it was Monday and that she was off to Mosely Hall later. On the plus side at least the classes at MHH are now part of her routine.
However they had given her a booklet abour relaxation and stress and breathing. I dont know how I kept my temper when she said she didnt beleive in stress as a problem becasue no-one ever sufferred from stress in her day. She had admitted earlier to feeling angry about things, and I managed to get her to see that anger would be releasing the same chemicals as stress. The booklet went from being something she had bought home to show me, to being something she would read .

I wonder how they get on with her in the class? I sometimes feel sorry for the physios in charge of the class.

She is still refusing to go to the common room becasue she saysd the people dont talk to her and and snub her. I've done my best to convince her to at least try becasue she is complaining about no-one caring about her. Luckily the staff and other residents know she feels like that so I am convinced if she DID make the effort to go down they would talk to her. i think they would like to see her. I had a bit of a moan in the common room on my way out. I could get onto toruble with Edna for discussing her like that - but with any luck someone will tell her that her actions are upsetting me - and that may make her think again.

At least if she gets upset with me I know she will soon forget it. Even dementia has a silver lining I suppose

Worries

I intend to go and see Edna tomorrow if I can. The if is because I dont feel too well -and with real paranoia I am concerned I am coming down the flu. Its perfectly feasible. I have been in contact with contacts offlu patients. Of course it could just be that I am tired.

But flu is out of control in Birmingham and I am worried about Edma getting it. I am also worried about me being ill and not being able get over to her if she is ill. Additonally there is a heatwave warning for Birmingham with special concerns for elderly people with heart and /or breathing problems.

Paranoia is a dreadful thing - or is it my intuition giving me advance warning of a problem?

Some musings

I went for a walk this morning and combined the walk with listening to some of the meditation music tracks on my MP3 player. I found myself meditating about Edna and I have realised this change in policy at Fosters may have much more profound effects than just stopping the personal care services.

Fosters was never meant to be for the infirm. It was meant for the fit and self caring who needed the sceurity of help around in an emergency. They realised when they found themselves getting bad publicity because they refused to allow the wheelchair bound lady in number 6 back that they couldnt exclude people any more. So I think this new policy recognises that they are going to have a higher proportion of infirm clients, but sets imits on what they will do. Anything else must come from outside services (family or care workers)

What it may mean is that they have a higher threshold for saying 'you cannot stay here' Certainly if Edna turned round and started refusing the services I think Fosters would act very quickly. This is going to change Edna's relationship with Fosters I think. And I wonder if it will change her feelings bout staying there?

Changeing the care package

I managed to speak to the socila worker today and not only have I found ut why she wanted to talk to me , but I've also managed to make sense out of something Edna had told me. I now realise she had misunderstood what she was being told.

It seems that Fosters are no longer going to provide any personal care. Instead they will concentrate on things like shopping and cleaning. Domcare can take this over, but they have been refused a budget to pay for this extra visit. So Edna will have to pay- but she pays Fosters now.

The good news is all her other visits will still be free.

Edna had tweice mentioned that something was changing for the other rresisdents but not for her and one other resident (I'm guessing tha lady in flat 6 who is wheelchair bound) I now think what is happening is the prsonal care is still being provided by Fosters until other arrangments can be made. Obviously she didnt understand what she was being told.

This may mean she gets her shopping done again. That would be a releif for me. But I now have to face a meeting with Edna, the social worker, Domcare and Alma when it can be officially discussed and decided.

I am a little annoyed that Alma hasn't informed me of the change - but then the residents are meant to be independent and self caring and shouldnt need NOK to interpret for them.

I am also worried whether Edna will agree to pay. I think she may actually have understood more than she has let on because she was moaning about how much she had to pay for the morning visit.

The meeting is on July 14th - a good excuse for a day off work methinks.

Paid assistant

I popped into to see Edna after work tolet her know abut the letter form the pensions people. I dont think she really understood or appreciated what it meant. I need to try and contact the social workers tomorrow to try and find out why they tried to contact me and to ask them what this increased allowance means we can do.

Some of what she told me today sounded as if she was fantasising again - well not fantasising but not having a good grip on reality. She felt she had been 'dumped' by some of the other residents - who dont talk to her any more. She apparently made cheese on toast for tea last night. She doesn't go to the commo room - but she goes and sits on the bench outside. I just cant beleive any of those is really true.

She also says that the class at NHH is for heart patoemts not respiratory patients. On the plus side she is still going to the classes - so she can be sensible when she wants to be.

She did admit she neds and assistant with her psot and paperwork, And today at least she is happy with the idea of me helping her. But she doesnt want any shoppping.

I did 5 minutes of meditation before I went in to see her today. I hoped it might make me more receptive to her needs and what she was feeling. I will try to do the same very time I go to see her. It can't hurt - and right now I will try anything I think might help

Benefits

I had a letter from DWP yesterday and they have agreed that Edna is entitled to the the fullcarers allowance. I am surprised to put it mildly. They also said they hadn't been told about her hospital stay and that she may have been overpaid as a result. But they will write directly to her about that.

I am anxious about how she will rract toboth these peices of news. I am also now anvxious to speak to the social workeres who tried tp talk to me on Friday but never rang me back.

I am off work tomorrow to help Steve with the final push on his house. I wil contact Domcare and see if they can give me the number of the social workers so Ic an ring them. Whatever they wanted it couldnt have been that important - but if they want to talk to me I certainly want to talk to them. I feel so ignorant about these things. I want her to have everything she is entitled to but I dont my way through this maze. I am sure the scoial workers could help with that

I am dreading my visit tonight already. I always do unless I have a specific purpose that I know Edna can't argue with. The sad truth is I dont really know her at all - because she never really lets anyone get close to her. She doesn't really trust anyone - even me. She might trust Steve rather more - but I think even that would vanish if he was trying to do the same sort of things fpr her that I am. Is that just her personality or is it the disease. I have no idea but it makes no difference. I still have to deal with her as I find her.

I think I need to meditate and do what I can to make myself as receptive as possible just before I go into see her - and that means in the car before I go in. Not ideal but I have no doubt me being calm is a much better start than me being uptight. I am also sure that listening properly is probably the key to getting her to hear me properly.

Communication is bound to be a problem with a dementia sufferer. I need to get those lines going now while she still has her cognitive functions intact. Then I should be able to keep them open easier as her cognitive functions get worse. At least that is the theory.

I am probably talking a load of drivel but it makes sense to me. It measn I have a plan and that always makes me feel better about things.

How much do I do?

Its the start of a busy weekend - in fact it started last night when Tony and I went over to Rachel and Tyler. The rest of my weekend is almost completely mapped out - and doesn't include a visit to Edna. Should it? Am I being selfish in not going over? Despite all her protestations does she really want me to spend more time with her?

I dont know but I am NOT going to let this spoil my weekend. I can ring her - and she can get company if she wants to make the effort.

The social workers tried to contact me yesterday about her care package. I couldn't talk when they first rang - but they never got back to me. I wonder if this is about payment? If it is I wonder how much she will be prepared to pay for.

Feeling helpless

I popped across to see Edna today after work. She says she is going to the hospital tommorrow. But she also says she always feels better on days when she has seen someone - but that it didnt happen very often. When I asked if she was going to the common room in the mornings I got a load of twaddle that she did admit was probably not true after I went through it logically with her.
But the bottom line I beleive is that she wont make the effort to go to the common room.

I thonk I am meant to go across more often to talk to her. But Maybe she is telling porkies about not going to the common room. Its quite possible.

I feel helpless to sort this out - becasue I cant. The bottom line is unless she is prepared to help herself - no-one else can help her. But I still dont know if this is really her being manipulative or the dementia coming out on top.

I am very fed up about this at the moment

Stubbornness v dementia

How the f**k to you tell the difference between them? She went to her hospital appointment yesterday. But she was 'Disgusted' and felt she was being treated like a child' The exercises they showed her are ones she had already been shown while in West heath (or was it during one of her earlier admissions to Selly Oak?) But she said something about yellow tape and walking along it? Now is she making that up or is it pasrt of the assesment? Apparently they all had to do it.

She said one male patient asked her if she was going to bother going back on Thursday (the implication being he wasn't) She told me she had decided to see how it went for one more session.


So was she disgusted? Was she just being stubborn and making the point that she cans still decide what she goes to - or doesn't go to? Or was the whole tale a fantasy born out of dementia?

All this was over the phone so I had no body language to give me any clues. I have no idea if she is going to go on Thursday or not. At this point I think she DOES mean to attend. But I am going to see her tommorrow after work, so I may get a better idea then.

I am almost tempted to offer to go with her on Thursday just to see what goes on.

Its only Tuesday and already I am thinking ahead to the weekend and how I can fit in anything I need to do for her. Saturday Steve wants to go shopping for curtains and things, and he has invited Judy along as well - so this is my first chance to meet her. Sunday is Fathers Day and Steve will be coming over to give Tony a Father;'s Day present - something he has never done before. So if anyone thinks I am missing THAT they have another think coming, and Tony and I are going out Friday night and Sunday night. Thursday may be my only chance to do things for her.

I may just tell work I am taking the day off even if Edna doesn't want me to go to Mosely Hall with her. The manager knows I have a elderley relative who needs my time so I wouldnt have to give long explanaitions. I'll think about it.


If she does need some shopping I can get it and deliver on Friday on the way to where we are going. It is almost on our direct route to Rachels. Friday is not being cancelled - it is Tony's first chance to meet our godson Daniel.

As a working Mum I often used the analogy of being a juggler trying to keep plates spinning on poles. This isnt like that - but it is as if I am waiting to see if I have to go on stage to do my juggling act. I am nervous aboutwhether I will get the call to do it, and nervouse about whether I will be able to give an adequate performance.

I gues sit comes down fear of the unknown.

Unsure

That sums up how I feel at the moment. Edna was just getting dresses when I got there - and seemed very unwell. Luckily the Domcare worker arrived just after me so she was able to do her job i'e help her get dressed do her some breakfast and give her her medication.
She soon seemed much better - so I yet again pointed out to her tat it would probably hekp if she waited for the carers to arrive so they cluld help her get dressed. This is old ground - she wont listen and I know she wont listen.

Alma told me she was already to go to her appointment on Thursday, but decided not to go. Apparnetly she had also been already on Monday - but she wasn't due to go on Monday. So she WAS aware that it was twice a week not every fortnight - but confused about the start date - I think. The truth is I dont have a clue what she did or didnt undertsand. I offerred to go with her on Monday bt her commnet was ' What is there to be afraid of? Nothing really' So I am going to ring her on Monday at 11.30 and make sure she is ready to go.

I also founf out the girls had done some shopping for her. She couldnt give them a list becasue I had already got that -but they did get some tomatoes and other stuff for her. Now Ednas version is the girls offerred. Alma's version 9whihc I beleive) is that she told the girsl she didnt have any food in. However in front of Edna Alma said that the girls do NOT have time to do her shopping. I have told Edna I can do little bits and pieces for her when I go over if she is running out.

I have no idea what actually happened to make Edna not go on Thursday. I dont know if she will go on Monday or not. What I DO know is when I persauded her to let me go through her papers I found an unpaid Meals on Wheels invoice that was due on 8th June that she has no idea if she has paid or not.

I will sort that out on Monday - before I ring her to remind her of her hopsital appointment. I hope they open before 9.00 or I will have to ring from my mobile - which costs a bomb. I need a contract not PAYG.

Edna's problems are re-arranging my life.

Have I done the right thing?

Its a sure sign that I am worried that my first action is make an entry in THIS blog . My normal blog is about weight loss, and life changes and quite philosophical at times. I started the demetia blog to try and keep that issue seperate. i try to keep Edna and her issues out of 'Changing life and times ' Normally my first move in the morning is to blog there about the previous day. Today I know I couldn;t do that because I need to talk about Edna as my main priority.

Yesterday I spoke to Moseley Hall about the missed appointment. It turns out Thursdays apppointment was the first of a series of twice weekly appointments to hep her with her breathing. Edna had clearly misunderstood becasue she told me they were every 2 weeks - and didnt know what they were for. I am sure she had been told but had either forgotten or not understood. I explianed she had forgotten the appointent due dementia, apologised and said what do we do know. ' Oh we've discharged her. It was the second appopintment she had missed' I realised they were including the March appointment when she had been in Selly Oak. I explained that she had been in hospital at that time, and I also explained that I could remind her of appointments to ensure she turned up. The freceptionist then went to talk to the person in charge of the classes and after a LONG time (I dread to think what that cst on my mobile) the receptionist came back and it was clear they were reluctant to take her on again, having pigeonholed her as a 'problem' thay they ddnt want to cope with. 'So I got a ot of waffle about whether she would benefit from the class , waffle about transport costs and it ended with the words. ' ts uo to you whether you think she would benefit' My immediate response was ' No actually it is up to YOU to decide if you wnat to help her or not' So Edna is back on the course starting on Monday.

I have to tell her this today when I go over with the shopping. I have decided to volunteer to go with her on Monday if she wants me to. I've already warned work I may have to take to her hospital (Boy am I glad I am a locum and dont have to grovel and apply for time off!) I am not sure how she will react. I may well be ringing them on Monday to cancel her from the course! She is going to be upset that she misunderstood the letters and infoirmation they gave her. She is also liley to say she doesnt want to bother 'becasuie her breathing wont get any better anyway' Well no it wont if she refuses all the help - just like painillers cant help if they stay inthe packet. God she is so stubborn sometimes .

I am alson worried about what other important information she may not have picked up from her post and I really feel I need to take charge of ALL her aperwork but cannot see a way to manage that. She is so determined to save me trouble - and doesnt realise she is causing me trouble by trying to save me work.

I got so mad at the Mosley Hall people . With the one mention of the word 'dementia' they didnt want to know about her any more. I appreciate that they couldnt know that I am health professional and wouldnt be trying to send her to them if I didnt think she would cope and benefit. I think if I can persuade her to go she WILL benefit becasue she has doen breathign excercises in the past and is quite proud of the fact that she still does them. But it was so clear that one word meant she was classified as a 'problem'

You would think an elderly care hospital (which Mosely hall is) would know that 'dementia comes in a variety of types and that not all sufferers are gibberring drooling wrecks who can't hold a rational conversation. I was SO angry about that

The conundrum is how do I ensure she gets treated as a proper person and not get hidden under an umbrella ;abelled 'Demntia' when I am feeling I cant let her do something as fundamental as dealing with her own post.

I am dreading this visit. I intend to meditate before I go so I am in as calm a frame of mind as possible. The meditation may also give some insights in to how to handle the communication with Edna - but I have to go in about an hour so I need to start getting ready.

First post for some time

I went to see Edna after work tonight. She really wasnt well and clearly was on a downswing with her memory. She was supposed to go to Mosely Hall today for soe Lung function tests but forgot. But she doesn't have a letter or anyhting that I can check whats going on. So tommorrow I will ring them and hope I can get through to the right deprtament and find out if she DID miss an appointment, and when her next one is. I have told her I can keep track of her appointmnets and ring her to remind her on the day.

I have also suggested she leaves all paperwork to me. She had a statemnet from Nat West that she was worried about becasue it showed all the withdrawals from her account where I had done shopping for her with the card. She then said would I be sure not to let her run out of money. I pointed out she has WELL over 10,ooo in the account (Nat West are not happy about all that money in a current account and have tried to get me to change it - but she wont and it is her money)

We alos discussed shopping. Sghe had made a list in the hope that she could get one of the Fosters girsl to do it- although I think she knows she won't. Anyway she has decided she needs to shop for teo weeks rather than one to save me making too many trips. So I took the list and immediately crossed some things off because I know she doesn't need them. She had small tins of baked beans down, She must have 10 tins already in the cupboard. I have conceded on the 2 bags of sugar and the butter but have refused to buy teabags. She wanted 160 - but she rhas an unopened pack of 80 and a part used pack tat is still quarter full. She wasnt happy.

She was very down physically and mentally today. She was very huffy and puffy and oo's and ouches. But the next minute she could be as bright as a button and asking about Steve's huse and his girlfriend. So I'm not 100% sure all the ill health was real - and I am wondering what lies behind the behaviour if some of it was an act.

Telepathy of some sort would be SUCH a usefu; skill at times.