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?