A free weekend

Well almost free. I did ring Edna today - and happily she sounded very chirpy. She had been to the bring and buy sale in the common room and bought a wall clock for Steve.

I have realised that she only re-started her Rivastigmine 48 hours before she refused to admit the carers. It is possible that the levels hadnt built up enough after the gap in treatment to be really effective. Add that to a possible downswing in her condition and that could be an explanation for Thursday.

But have I really had a weekend free of the fall out from Edna's dementia? No because it is always there like the elephant in the room that no-one mentions. I have no idea when I talk to her if she will need /want me to go over to see her to sort something out. Next weekend Tony and I are going to a games convention in Birmingham. And I am already planning when and how I am going to fit in a shopping expedition for her without it interfering too much with our social life.

I worry a little at work because there is a very poor and intermittent mobile phone signal in the dispensary so there is no reliable way to contact me if I there is an emergency. That isnt a huge issue - but it is another niggling irritation

When the phone goes unexpectedly I am always expecting it to be Edna - or someone telling there is a problem with Edna.

None of the issues are massive, none are insoluble but Edna's illness means they are always there. I have to plan trips to Moseley. I have to allow for mkaing unexpected trips to Moseley. It is always at the back of mind that I may be needed 7 miles away

I can be contacted by the wardens, the home care team, and the district nurses. I can rely on the local pharmacy (who luckily are very good) to make sure she doesn't run out of medicine. They keep the repeats and put the request into the GP Sadly I cant rely on the GP to get the prescription to them on time. But even the pharmacy has my mobile number so I can be reached 'just in case'

How much of this is due to dementia and how much is just the normal effect of an elderly relative? The problem is no-one wants to let her make a decision without me there . I dont want her making decisons without me there.

Yje ossue just never ever quite goes away

Confusion again

Everyone knows that dementia involves confusion. What you dont realise until you are involved with a dementia sufferer is how confusing things can be for friends family and carers as well.

I went to see Edna tonight -with some shopping- so I could find out what went on yesterday evening. I still dont know. She said she wouldnt let them in becasue she didnt know who they were. She also said that she told Alma and that Alma said she did the right thing.

But then she went into a diatribe that pared down to the basics was all about her not having control over things.

She is is I suspected upset that her carers have been changed. She says has also been told she is going to ahve to pay. At the moment if she is told she has got to pay I can see her telling the carers where to go. I dont think they can start a care service and then say 'you've got to pay' without some notice and consultation. But her version of last night did ot aree with what the care team told me, and what she was telling me was so confusing, mixing uo past and present. She even went back to moaning about the way the hospital treated her.

So basically I was confronted by Mrs Jekyll. And I now dont know how much of what she has told me can be beleived.

I feel very despondent at the moment. DWLB is characterised by fluctuating symptoms. So is this a fluctuation or is it partially due to the week long gap in treatment?

I had got used to the feeling I could beleive what she told me - and now I am not sure.

Its horrible

One problem solved and another appears

I wnr over ot see Edna after work. She went to Moseley Hall for lung function tests -or something similar - today. She didnt get back until just past 4.00 and she was just finishing her meals on wheels salad when I got there.

She seemed OK . I didnt stay that long - juts a cup of tea and a quick chat. She finally has the spare key for her flat. She was pleased but then said it hadnt really mch on issue becasue she wasnt going anywhere. When I think of the fuss she made at some points about that key ............ well maybe the fuss was the dementia talking.

She mentioned something about having new carers. The other night I got a call from an eveing carer who didnt seem to know how to get in - I didnt think anything about it at the time.

But tonight I got a call from evening carer telling me Edna was refusing to let them in -saying she was OK. It turns out she HAS got new carers - a firm called Domcare who have a contract with Birmingham City council to do care visits. I suppose the good news is that no-one is suggesting Edna's care package is reduced/ the even better enws is that no-one is suggesting she needs to pay for her care.

But I am wondering what on earth made he refuse to let them in tonight. She seemed fine when I was there - perfectly normal. Luckily she was also well so I was happy to tell the carer not to force to issue.

I did express surprise that her carers could be changed without her or me being informed. I also suggested that possibly Edna was a bit annoyed that no-one had told her before the carers were changed.

But tommorrow morning I will have to ring Alma or Sue ad tell them what happened tonight and see if they can find out what she was up to tonight.

I may have to go over to see her tommorrow night. I hope not. It turns my 22 miles drive a day (11 miles to RHH and back) into a 36 miles drive ( 11 to RHH 18 from RHH to Moseley then 7 back home) I have to do a bit of shoppping for her - and I said I would go over on Saturday with it . Unless there is a pressing reason to change plans that is what I am going to stick to.

The emotional effect on me

I may as well be honest and admit Edna's problems are taking an emotional toll on me. Its been bad this weekend not because I've been with her a lot but because I have had to sit out the bank holiday before I could contact the doctor about her Rivastigmine supplies. I dont deal with stress by throwing myself into work. That doesnt work for me. But a wonderful book called 'Change your life in 7 days' did just that for me a few years ago and gave me a new outlook on dealing with problems. I cope best when I can break up a large problem into small manageable problems that I can deal with one at a time. In this case I havent been able to do anything about the problem becasue of that outdated and anachronistic british instution the bank holiday. Edna hasnt needed me personally so far - although I have a feeling I may end up going over today. But not being able to make that one phone call has eaten away at me.

I can see Edna's problems eating into work this week. I may well be late to work tomorrow becasue my priority will be to ring Dr Ostler . That may well mean I leave for work too late despite the fact that traffic will be light as its half term. Also I booked myself onto a SAGA finance advise programme on Friday to see if they can give me any guidance about Edna's financial situation. I did that when I wasnt exepcting to be working . I have to decide whether to cancel the SAGA appintment or tell work I cant be there on Friday. My instinct is to tell work I cant be there. I need to give Edna priority over work at the moment- but I will see what happens tomorrow. I have no doubt I will feel better once I have spoken to Dr Ostler - assuming she is in next week. If I dont get an asnwer on the number she gave me then I will have a major task on to contact someone else in her team. I have a plan in my head for how to find out how to contact them - but putting it into action will definitely be time consuming!!

Cleaerly Edna's situation is full of unkowns - but I am not wasting my time saying 'what if' Sanity demands I deal with issues one at a time not try to be prophetic and deal with all potential problems. I can honestly say I haven't at any time sat down and tried to answer a lot of 'what if' questions. But having a plan B for tommorrow if plan A doesnt work is sensible planning ,not paranoid extrapolation into the future.

I feel I have been called to look after Edna. In a way this is driven by guilt that I didnt help Alan, and wasnt able to help Mum. Also it is something I can do for Steve. I couldnt leave him to cope with this ! I beleive I will find the resources to deal with each situation as it arises.

I am very aware that I will be no use to Edna unless I am well myself. That means both physically and mentally fit. The two go together. This blog is a way keeping myself mentally fit . I have discovered blogging can help me resolve issues by helping my clarify my thoughts. Writing is very therapeutic, Emotion can be expelled harmlessly onto the blog - a kind of written primal scream.

So far I have been lucky. I have only had to deal with emotions as a result of being with Edna. This is the first time an issue has persisted this way. I am sure it wont be the last time.

Time for a primal scream

It wouldn't help but it would be very therapeutic.

I have done Edna's shopping - and found as I was putting it away she had asked me to get stuff she didn't need. I have already said that next time I will help her draw up the list . I know I may have some arguments with her about what she odes and doesnt need - but I would be failing her if I didn't try to prevent her wasting money on foood she wont eat.

I paid with the card on her and my joint account - and as she had requested got 25.00 cash as well which was for petrol money for me. So I gt 25.00 cashback. I gave her the receipt - and she immediately asked me how much money she owed me. So I sadi it had come out of her account, and she immediately started worrying whether there was enough money in the account. There is over 30,000 in that account!!. It is worrying she couldnt remember She has always been very acute about her money situation.

I saw Alma when I arrived and she told me Fosters is NOT being taken over. So clearly Edna was surmisng again when she told me that. Also when I told Alma about the medicine sitation she said she had taken the blister packs to her this morning. So she had no medication yesterday at all.

The worrying thing is the Rivastigmine still isnt in. So she has been without that for at least 2 days. And it will be at least Tuesday before I can even speak to someone about the situation. She may if I am lukcy have some by Tuesday evening but I wouldnt bet on it.

The difference in her is noticable. She does not look well and says she doesnt feel well. She seems much more lerhargic and less alert. Undoubtedly mising her normal meds - especially the furosemide and digoxin will have an effect on her well being. But undoubtedly she feel less mentally alert off the Rivastigmine . That wont be making her feel any better.

I am worried. I dont know how or why the supply of her normal medication failed - and of course I cant start to find out until Tuesday. I I may have to take charge of ordering her repeats. Alma does it bt it isnt really Fosters job to do that. I dont want to insert myself into the system - but I need to have confidence that her medication will be there when she needs it. Luckily her pharmacy isnt far away from Fosters so visiting them isnt a problem. But until I know what went wrong this time I cant figure out how to prevent it happening again.

Alma was saying that Edna seemed fine this morning when she dropped the nomads off. I think she was trying to suggest that the malaise Edna complained of to me wasnt real. I am worried that Alma still feels most of Edna's problems are in her mind and not really real. I dint know if it matters that she doesnt beleive its real - but it will alter how she acts towards Edna . I dint know how muchthe behavious of others affects a dementia patient tho. Probably it doesnt have a signifcant effect.

I suddenly feel overwhelmed by Edna's illness again. I know it will pass. I will get in some quality meditation time over the weekend.

I will be glad when Steves exams are over and he is finally settled in at number 6 because then I will feel more able to involve him in things. At the momemnt he needs support from me . Thank goodness I have Tony to support me or I would be totally loopy

No medicine

I went o see Edna after work today. She seemed a bit off. She was telling me that Fosters is being taken over by the council - which I dont believe at all. But I also found out (but only when the home care team turned up) that she was out of medication . There were two empty MDS's from Evergreen but no sign of an MDS with the Rivastigmine in at all. I dint think they are yet combined into one - so I am wondering how many doses she has missed. That could be why she seemed a bit off today.

So tommorrow I need to ring the pharmacy and find out what is going on with her drugs.

She has also agreed officially that I wil do her shopping for her. Alma told me weeks ago that the girlds would no longer havt time to do her shopping - plus we had concerns about whether the orders she put in would be appropriate. DShe has given me a list whihc I have some concerns about - but I will get what she has asked for and review when I do the next list for her.

So this is the first real increase in my direct involvment. the first long term commitment.

Diability allowance

I went to see Edna today and she was pleased to see me and seemed quite with it. But she said she was having a bad day.

I didnt get to see the letter from MHH - but one letter I did see was from the DWP about her disability allowance. There was a form to fill in to assess if she is entitles to a higher allowance becasue she needs night time care. We have filled it in as best we can - and I am going to send it off with a covering letter. My dilemma is when does night time start. She agreed that she can get confused at night if she wakes up, she agreed some help getting undressed could be nice and she also agreed she needs some help with her medicines - except she does take any late at night.

Unless she needs help after 10,00pm I dont think she will meet the criteria - but the home care people turned up while I was there and they said to make the cliam anyway - as they can always say 'no' I dont know if the diagnosis of LBD means she may qualify anyway.

I wondewr how many more forms I will have to fill out in the future..................

I had a thought the other day. I am wondering if Edna isnt worrying about the long term consequences of the dementia becasue she assumes that she will die before it becomes a problem. Now how do I tackle THAT in a conversation?

A bit of a gap

I have been at my new job for 3 days now, and I haven't had time to contact Edna. But I rang her tonight. She was glad to talk to me, and said she had wanted to ring - but didnt want to trouble me. She sounded OK, but did say she had some letters one of whihc was about an appointment at Moseley Hall Hospital. I thought it might be the memory clinic - but I now realise that is based at QE. I think it could be to do with her COPD. I know I cancelled an appointment at MHH for her while she was in SOH. I am worried whether she has read and understood the letters properly so I am going to see her straight from work tommorrow. She said not to worry - but I will go over if onlt to get a feel for how practical it is for me to do an after work visit.

I think she DOES want me to go over - but doesnt want to be a nuisance. But I musnt make assumptions.

Follow up to the doctors visit

I popped across to see Edna today. It wasn't entirely succesful. Her meal had been delivered but she wasnt really hungry. She had a late breakfast for one thing, and I think she is constipated. She also had a bit of an upset stomach after having stewed apples and rhubarb yesterday - at least that is what she said.

The home care team worker arrioved while I was there - and duly gave her her second water tablet. I am SO glad they are there to do that. I am sure she wouldnt take it if it was up to her.

We did discuss Dr Ostlers vist but apart from saying she isn't too keen on the idea of the memory clinic she didnt really say much. She didnt disgaree with anything I said about her having a diagnosed problem in her brain that was causing her problems, that without the medication she would be a lot worse than she is. She mentioned how some days she is great - and I reminded her that LBD is like that - good days and bad days (I didnt use the D word) .

She doesnt feel she is any better for the medication. She has been told by lots of people (icluding me) that she is a LOT better than she was. I told her that she is the best I have seen her for MONTHS. I think that did register.

I think yesterdays discussion HAS registered, that she DOES know she has dementia - and that it isnt going to get any better. I dont think she wants to discuss it at the moment.

I'm not sure whether I am worried or relieved

An interesting meeting

Well Dr Ostler - who is a lovely SHO working for Professor ....somebody or other, came out to se Edna.

She discussed the illness with her, including using the word 'dementia' and tried to explain what was happening in her brain. She explained what the Rivastigmine does - and as a bonus the prescription for that is gping to go direct to Evergreen pharmacy so the Rivastigmine can go into the same MDS as all her other drugs.

She gave her the MMS test again. Last time her score was 26, this time it was 24 - but LBD fluctuates - thats one of the characteristics - so that small drop isnt significant unless it is indicative of a trend.

She is going to go to the memory clinics as well - which is where they will re-test her. The first one is in about 8 weeks time.

Dr Ostler also gave me a booklet for carers that I need to work through at some point. She has also said they will raise the issue of establishing a power of attourney when they see her next.

Tomorrow I must ring the home care team and find ut what is supposed to happen in terms of a review of the care pacakge.

For the first time in 3 weeks, work is on the horizon again. HCA may have a booking for me at Russels Hall, but I've also contacted PPLS about a 20 hour week vacancy they have somewhere. I suspect I will be back at work next week . We will have to wait and see how everything works out.

I feel fairly optimistic - especially as the 'D' word is out of the closet. It means I can have much more open discussions with her.... at least I hope so.

New information

The change in title says it all. Today for the first time I had a chat with Dr Ostler and she said they think Edna has Lewy Body dementia - and may have some risk factors for vascular dementia as well. That deosnt rule out Alzheimers at some point of course - but it should make discussing treatment with Edna MUCH easier. She is terrified of the 'A" word.

I need to look up LBD . Dr Ostler is seeing Ednba tomorrow - and wants mew to be there as well. She has promised to bring me some information.

I dont know if this makes a difference in what we can exepct in the future. But at least I know have some solid information to go on.

A good visit

I popped over to see Edna today and she seemed much better. She made me a cup of tea while I was there. We discussed whether she needs any shopping - and she doesn't. But we did discuss possible further outings for her.

She did say one or two things that had me wondering if she was living in fantasy land again - but there was thankfully NO sign of Mrs Hyde.

Her memory is clearly still very bad - and that does worry me but she is a lot better ion herself than she was and seems to be caring for herself better. I even have credible intelligence that one evening she cooked herself scrambled eggs on toast.

I am still concerned about continuity of her medicine supplies. Alma is going to make sure her inhaler is somewhere in the system - and if they are not then I wil ring the surgery and try to sort it out. I will also ring Dr Ostler who ois prescribing and monitoring the Exelon to tery to make sure supplies arrive on time in future. Whiel missing a day wouldn't really matter that much, missing regular doses is going to be unhelpful to sya the least. And the wardens cant really have input on that - it will have to be me.

I can uyself getting ore and more involved with her medication supplies - almost inevitable I suppose given my profession.

I dont really feel I can judge how well things are working until I am back at work again - but there is currently no sign of a booking. The other key date is the review of her care package. I presume they will contact me in advance to discuss that.

I am still in limbo really. But with more confidence about the future