Losing things is probably the worst aspect of Edna's illness. When I got there today she was worrying becasue she had lost her crochet hooks. I found one , and the other one turned up tucked into a piece of crocheting. She is convinced someone is playing tricks on her.
She also has great difficulty remembering what day it is.
I think those are the factors that will make life tricky for her when (if???) she goes back to Fosters.
I tried to find out what progress was being made in getting her home and the answer seems to be none. The OT's have written in the notes that Fosters 'laughed' at the idea that Edna could care for herself. I am surprised because the OT I spoke to actually said that she would not take anything she said at face value. Clearly somoen in the OT department IS beleiving her.
Nothing has happened about changing her inhalers to the Easibreathe and ths sister on today didn't know about the change.
Worryingly the sister also suggested that Edna wluld cope with her medicines in a blister pack. But she also thought the Fisters carer's could deal with medicines - which they can't. But then I had reming her that somoene would need to deal with the Rivastigmne patch. It has to go ona differenty spot every day with no spot being used more than once every 14 days. Edna will NEVER manage that. So she has GOT to have some help to manage her medication.
Edna SHOULD be able yo manage her medicines in a blister pack - if she can remember what day it is . Otherwise she will end up either not taking them, or taking a double dose. She hasn't been coping with her medicnes in a blister pack - but will they believe either me OR Fosters .
I am very fed up becasue nothing seems to have happened about putting a care package together. I would love to know if the key safe has been fitted.
I have a nasty feeling that Edna is going to get bad tempered if things don't happen soon. Especially as her nice quiet neighbour has been discharged - and the new occupant is very noisy.
I have a VERY bad feeling about everything at the moment
Tuesday 31 March 2009
Monday 30 March 2009
Still no discharge plans
A much easier visit today, She was in a much happier mood even though discharge plans seem to be on hold. She has been told (I think) that Fosters feel she needs a vERY comprehensive care package. And for once she didn't try to protest that she didn't need help.
She is still loosing things, and get confused VERY easily. We discussed ways she can help herself to remember things when she gets home.
She even said that she didn;t mind staying in hospital and hinted that she enjoys the company. i took the chance to tell the tale of how Mum finally realised that company would be a very good reason to leave her house and go into a care home. I even suggested that it was something Edna MIGHT need to consider if she had difficulty coping at Fosters, and she didn't jump down my throat.
If she stays like this for the moment I think we will cope. The Rivastigmine seems to be having an effect on her even thought she still has delusions and fantasies.
I have made it plain I will be seeing her regulalrly when she is back home, and although at first she said 'no don;t bother' when I reminded her I had retired so I COULD have time for her, she seemed glad . I think she wants company rather more than she says she does.
She is still loosing things, and get confused VERY easily. We discussed ways she can help herself to remember things when she gets home.
She even said that she didn;t mind staying in hospital and hinted that she enjoys the company. i took the chance to tell the tale of how Mum finally realised that company would be a very good reason to leave her house and go into a care home. I even suggested that it was something Edna MIGHT need to consider if she had difficulty coping at Fosters, and she didn't jump down my throat.
If she stays like this for the moment I think we will cope. The Rivastigmine seems to be having an effect on her even thought she still has delusions and fantasies.
I have made it plain I will be seeing her regulalrly when she is back home, and although at first she said 'no don;t bother' when I reminded her I had retired so I COULD have time for her, she seemed glad . I think she wants company rather more than she says she does.
Sunday 29 March 2009
Genuine confusion - or manipulation
I had a tricky visit today. She is still plainly in fantasy land some of the time, but she is clued up on the fact that she is going home, that she is going to have more carers etc. She even seems to accept that we cna't say for certian whether she will go home on Monday, or Tuesdayor even Wednesday (please God no later than Wednesday!!)
But it all got very tricky when she said her sleeping tablets had been stopped. I investigated and t turns out it was true - but the nurse (who has been on reglar nights) said she had slept OK. So was trying to explain to Edna why from a medical viewpoint the doctors would have stopped her Temazepam. It ended with her saying those fatal words in that fatal tone ' Well you're very cinvincing Sally' So I said I didnt want to argue and thast I was going to go. She then got upset and asked me NOT to go and said how lonely she was, how she doean't really trust anyone, did I have any idea how hard things had been for her. We parted as friends eventually but she was also showing signs of resistance to the idea of helpers. ' I don't weant to be coddled'
I really am not sure if the emotion was genuine or if she was trying to manipulate me.
One worrying event was that she cluuldn't use her inhaler. When I told the nurse she said they were going to get an Easibreathe for her. Whether that will delay things I don't know.
I feel bad about today. I lost patience with her and I shouldn't - but I am still not sure how much is her and how much is the dementia. I know I'm not feeling too well becasue of this cold - but I don't want to do anything that might upset her or make her worse.
But how can I do ANYTHING if she doesn't trust me? How can anyone do ANYTHING to help her if she isn't going to trust anyone?
But it all got very tricky when she said her sleeping tablets had been stopped. I investigated and t turns out it was true - but the nurse (who has been on reglar nights) said she had slept OK. So was trying to explain to Edna why from a medical viewpoint the doctors would have stopped her Temazepam. It ended with her saying those fatal words in that fatal tone ' Well you're very cinvincing Sally' So I said I didnt want to argue and thast I was going to go. She then got upset and asked me NOT to go and said how lonely she was, how she doean't really trust anyone, did I have any idea how hard things had been for her. We parted as friends eventually but she was also showing signs of resistance to the idea of helpers. ' I don't weant to be coddled'
I really am not sure if the emotion was genuine or if she was trying to manipulate me.
One worrying event was that she cluuldn't use her inhaler. When I told the nurse she said they were going to get an Easibreathe for her. Whether that will delay things I don't know.
I feel bad about today. I lost patience with her and I shouldn't - but I am still not sure how much is her and how much is the dementia. I know I'm not feeling too well becasue of this cold - but I don't want to do anything that might upset her or make her worse.
But how can I do ANYTHING if she doesn't trust me? How can anyone do ANYTHING to help her if she isn't going to trust anyone?
Saturday 28 March 2009
No visit today
Steve has visited Edna today so I asked him to tell her I wouldn't go in until tomorrow. To be homset I feel rough today. The cold I have been fighting seems to have taken me over today and I feel very achy.
However I have been over to Fosters and had a long chat with Alma - one of the wardens. They have reservations about Edna going back there. Apparenbtly the OT's were saying that Edna had said she could do this and that and Sue (the other warden who took the call) told them not to beleive what Edna said. As far as I know the OT's already know this.
Alma made it clear that although tey can't refuse to accept her back at Fosters she will use every option she has to make it plain to Edbna that she has to accept the help being offerred. Since neither of us lknow what help will be available we both have a problem. Alma says they need to knwo what carers will be coming in and when so they can alert the central control who man the door when the wardens are off duty. I've said I am mofre than happy for them to contact the social worker on Monday.
Alma has also expressed concerns about the money Edna keeps in the flat. Usually several hundred pounds. We haev agreed that she should have no more than 30.00 - and it may be ebst oif I do her shopping. I am worried what she might tell the other girsl to get. But then that means I may have to persaude her she doesn't things she thinks she does. But will she agree to em doing her shopping or will she play her face up and insist the girls do it?
I don't think the money will be a problem since she asked me to look after it some weeks ago. But the excuse will be that with so many people coming in we don;t want to take any chances.
It sounds rotten but if Fosters via Alma and Sue lay down the law to her about conditions for her staying at Fosters at least they will take the flak and not me.
While I was there I chcekd what food she had in , and also removed some unneeded medicines (some old and out of date) She had about 6 part used inhalers which I have removed, and I have put her nebuliser out of sight in her wardrobe cupboard while we decide what to do with it.
I have acted out of the best of motives to remove things which may cause confusion. But will she accuse me of taking over and throw a wobbly? Or will she even notice what I have done? Shoudl I tell what I have done? If I do will she remember?
So many questions and far too few answers at the moment. The reality of the situation is starting to have an impact
However I have been over to Fosters and had a long chat with Alma - one of the wardens. They have reservations about Edna going back there. Apparenbtly the OT's were saying that Edna had said she could do this and that and Sue (the other warden who took the call) told them not to beleive what Edna said. As far as I know the OT's already know this.
Alma made it clear that although tey can't refuse to accept her back at Fosters she will use every option she has to make it plain to Edbna that she has to accept the help being offerred. Since neither of us lknow what help will be available we both have a problem. Alma says they need to knwo what carers will be coming in and when so they can alert the central control who man the door when the wardens are off duty. I've said I am mofre than happy for them to contact the social worker on Monday.
Alma has also expressed concerns about the money Edna keeps in the flat. Usually several hundred pounds. We haev agreed that she should have no more than 30.00 - and it may be ebst oif I do her shopping. I am worried what she might tell the other girsl to get. But then that means I may have to persaude her she doesn't things she thinks she does. But will she agree to em doing her shopping or will she play her face up and insist the girls do it?
I don't think the money will be a problem since she asked me to look after it some weeks ago. But the excuse will be that with so many people coming in we don;t want to take any chances.
It sounds rotten but if Fosters via Alma and Sue lay down the law to her about conditions for her staying at Fosters at least they will take the flak and not me.
While I was there I chcekd what food she had in , and also removed some unneeded medicines (some old and out of date) She had about 6 part used inhalers which I have removed, and I have put her nebuliser out of sight in her wardrobe cupboard while we decide what to do with it.
I have acted out of the best of motives to remove things which may cause confusion. But will she accuse me of taking over and throw a wobbly? Or will she even notice what I have done? Shoudl I tell what I have done? If I do will she remember?
So many questions and far too few answers at the moment. The reality of the situation is starting to have an impact
Friday 27 March 2009
On the brink of a change
Edna is definitely being discharged early next week - maybe even on Monday. And she is SO pleased. She was in a very good mood today when I visited her. She evne apologized to me for being grumpy at times. Even her consultant is her friend today - and he was public enemy number 1 at one point.
I am cautiously optimistic. She is having a key safe fitted - with the agreement of the Foster's wardens - so that her carer's (in the plural) can get in easily. It will also mean I can get in easily as well. What I don;t know yet is what the carer's will be doing. I am hoping they will be qualified to manage her medication.
Edna herself seems quite happy with the level of support.. She certainly hasn't asked what they will be doing and tried to tell me she doesn't need help. We did have a chat earlier in the week when she gave me the impression she had realised she couldn't cope without more help.
She is going to have the meals on wheels again. But the dementia took over again when she was discussing how she need at least 50.00 to retsock her flat woth cleaning stuff and food. She was talking about bacon, eggs, a pound og tomatoes, spanish onions. I need to know what the carers will be doing before I try to plan what food she needs in. She wouldn't be cooking bacn and egss thats for sure.
The dementia was much in evidence today. The woman in the next bed is called Diane Stokes - but Edna insists it is really Doris Pilkington = except she doesn't want to be called Doris she wanst to be called Elizabeth. I lost track of a lot of what she was saying it got so involved - and was so obviously part of her perosnal world. But those sorts of delusions are harmless - and I just igmore them now. I have learned to distract her with some other topic.
I really don't know how much her cognition is impaired. The hospital clearly feel she is able to give consent on her own behalf becasue they spoke to her not me about her discharge. However they have clearly taken my concerns seriosuly becasue they would seem to be providing a comprehensive care package. I don't know if she will have to pay for the care or not.Some dementia patients can get free care due to their condition regardless of their financial position. I will doubtless learn more on Monday when I am sure the social worker and I will manage to talk. We kept missing today.
I also need to find out how her condition will be monitored. I have no doubt the wardens will be quick enough to contact me if they have concerns. I obviosuly need to visit her regularly. Visiting after work is the obvious time as I finish at 3.30. I envisaged going to Fosters straight from work on a regular basis - its one reason why I retired. What remains to be seen is how much she will NEED me to visit as opposed to WANT me to visit.
Time alone will tell
I am cautiously optimistic. She is having a key safe fitted - with the agreement of the Foster's wardens - so that her carer's (in the plural) can get in easily. It will also mean I can get in easily as well. What I don;t know yet is what the carer's will be doing. I am hoping they will be qualified to manage her medication.
Edna herself seems quite happy with the level of support.. She certainly hasn't asked what they will be doing and tried to tell me she doesn't need help. We did have a chat earlier in the week when she gave me the impression she had realised she couldn't cope without more help.
She is going to have the meals on wheels again. But the dementia took over again when she was discussing how she need at least 50.00 to retsock her flat woth cleaning stuff and food. She was talking about bacon, eggs, a pound og tomatoes, spanish onions. I need to know what the carers will be doing before I try to plan what food she needs in. She wouldn't be cooking bacn and egss thats for sure.
The dementia was much in evidence today. The woman in the next bed is called Diane Stokes - but Edna insists it is really Doris Pilkington = except she doesn't want to be called Doris she wanst to be called Elizabeth. I lost track of a lot of what she was saying it got so involved - and was so obviously part of her perosnal world. But those sorts of delusions are harmless - and I just igmore them now. I have learned to distract her with some other topic.
I really don't know how much her cognition is impaired. The hospital clearly feel she is able to give consent on her own behalf becasue they spoke to her not me about her discharge. However they have clearly taken my concerns seriosuly becasue they would seem to be providing a comprehensive care package. I don't know if she will have to pay for the care or not.Some dementia patients can get free care due to their condition regardless of their financial position. I will doubtless learn more on Monday when I am sure the social worker and I will manage to talk. We kept missing today.
I also need to find out how her condition will be monitored. I have no doubt the wardens will be quick enough to contact me if they have concerns. I obviosuly need to visit her regularly. Visiting after work is the obvious time as I finish at 3.30. I envisaged going to Fosters straight from work on a regular basis - its one reason why I retired. What remains to be seen is how much she will NEED me to visit as opposed to WANT me to visit.
Time alone will tell
Thursday 26 March 2009
Going home?
I haven't been to see Edna today. I did tell her I wouldn't be in every day this week - and I have the beginnings of a cold which I don't want to give her anyway.
I read some of the leaflets from the Alzheimers Society today. The descriptions of delusions was VERY familiar. In fact I was able to relate a lot of what I read to Edna's behaviour.
I have just rung the ward to let Edna know I won;t be going in, and her consultant is talking about her going home on Monday. They are not doing much for her - and she is very fed up. I think that was the cause of the paranoia that was so obvious last night.
The OT's are trying to get hold of me - but not the social workers as far as I know. I just hope this discharge IS planned properly - and that help will be available, and that Edna will be agreebale to accepting the help.
At least the nebulisers have been replaced with inhalers - so her medictaion will be easier for her. But life would be so much easier if the Fosters staff could supervise medication.
I read some of the leaflets from the Alzheimers Society today. The descriptions of delusions was VERY familiar. In fact I was able to relate a lot of what I read to Edna's behaviour.
I have just rung the ward to let Edna know I won;t be going in, and her consultant is talking about her going home on Monday. They are not doing much for her - and she is very fed up. I think that was the cause of the paranoia that was so obvious last night.
The OT's are trying to get hold of me - but not the social workers as far as I know. I just hope this discharge IS planned properly - and that help will be available, and that Edna will be agreebale to accepting the help.
At least the nebulisers have been replaced with inhalers - so her medictaion will be easier for her. But life would be so much easier if the Fosters staff could supervise medication.
Wednesday 25 March 2009
Entering the fantasy
One of the most consistent pieces of advice I have been given about dealing wih a dementia patient is that you have to join them in THEIR world. This is o am sure very good advice. What no-one can advise me about is how to cope if their fantasy is potentially harmful to them.
Today Edna was in a state when I got there. She was very agitated and told me that the three biro's I had taken in for her on Saturday had all vanished. I did manage to find two of them in the seat of her walker. While she was relieved I found them, there was then the inevitable question - how did they get in there? I didn't attempt to answer that but themn got treated to an account of all the tings that had gone missing (her bag, her cardigan, the pens, her purse) only to all turn uo unbder mysterious circumstances. Edna is convinced someone is playing tricks on her - and possibly on other patients in the ward. And she is upset and wants to know why - and she thinks it is the staff. I don;t feel 'entering the fancy' when it undermines her confidence in the staff looking after her is a good idea.
Today she had a diatribe against her consultant for accusing her of putting on symptoms for his benefit. Worryingly she was also convinced I had been on the ward laste one evening in a nurses uniform. When I tried to re-assure her it hadn't been me that I wouldn't ignore her her comment was 'You are very convincing at times Sally' said in a tone that left me in no doubt she didn't beleive me.
Today I have been going over horribly familiar ground with her. 'No-one can force me to say in hospital if I don't want to' At least you agree with me this is a hopsital' I want to do some business at Lloyds that concerns you' (I think she thinks she is changing her will - but has forgotten she told me to take it out of Lloyds and keep it for her)
She was very out of touch with reality today . I felt so unhappy that we were re-running scenes that first played weeks ago at West Heath. We even went to back her wuerstioning why she was in hopsital in the first place.
I have managed a phone call to social services today. Edna's social worker is on leave but I spoke to the duty social owrker who looked at the file and told me there had been no developments in Edna's case so nothing was being discussed about her discharge.
I feel everything took a step backwards today and I to say I am dissappointed is putting it mildly
Today Edna was in a state when I got there. She was very agitated and told me that the three biro's I had taken in for her on Saturday had all vanished. I did manage to find two of them in the seat of her walker. While she was relieved I found them, there was then the inevitable question - how did they get in there? I didn't attempt to answer that but themn got treated to an account of all the tings that had gone missing (her bag, her cardigan, the pens, her purse) only to all turn uo unbder mysterious circumstances. Edna is convinced someone is playing tricks on her - and possibly on other patients in the ward. And she is upset and wants to know why - and she thinks it is the staff. I don;t feel 'entering the fancy' when it undermines her confidence in the staff looking after her is a good idea.
Today she had a diatribe against her consultant for accusing her of putting on symptoms for his benefit. Worryingly she was also convinced I had been on the ward laste one evening in a nurses uniform. When I tried to re-assure her it hadn't been me that I wouldn't ignore her her comment was 'You are very convincing at times Sally' said in a tone that left me in no doubt she didn't beleive me.
Today I have been going over horribly familiar ground with her. 'No-one can force me to say in hospital if I don't want to' At least you agree with me this is a hopsital' I want to do some business at Lloyds that concerns you' (I think she thinks she is changing her will - but has forgotten she told me to take it out of Lloyds and keep it for her)
She was very out of touch with reality today . I felt so unhappy that we were re-running scenes that first played weeks ago at West Heath. We even went to back her wuerstioning why she was in hopsital in the first place.
I have managed a phone call to social services today. Edna's social worker is on leave but I spoke to the duty social owrker who looked at the file and told me there had been no developments in Edna's case so nothing was being discussed about her discharge.
I feel everything took a step backwards today and I to say I am dissappointed is putting it mildly
Tuesday 24 March 2009
Is there any progress?
I saw Edna today for the first time in 2 days.hoping I would be able to detect a change if there was one. To my disaapointment I don't really have anything to report.
She told me she felt depressed. She seemed very down compared with how she had been . Is that cogniton returning or is that a side effect of the treatment.
She aso told me she had lost weight. This seems possible but I am not sure if it is real of one her 'surmisinings'. If it IS real , again anorexia is a known side effect of the drug.
Accvording to PICS she should have been discharged on the 20th March - so I went in expecting to find plans being made for her discharge but no-one said anything to me.
She is still talking about seeing Doris, and being moved about the ward so obviously she is still surmising things.
So I am very unsure what is going on. I need to talk to a nurse and a social worker.
She told me she felt depressed. She seemed very down compared with how she had been . Is that cogniton returning or is that a side effect of the treatment.
She aso told me she had lost weight. This seems possible but I am not sure if it is real of one her 'surmisinings'. If it IS real , again anorexia is a known side effect of the drug.
Accvording to PICS she should have been discharged on the 20th March - so I went in expecting to find plans being made for her discharge but no-one said anything to me.
She is still talking about seeing Doris, and being moved about the ward so obviously she is still surmising things.
So I am very unsure what is going on. I need to talk to a nurse and a social worker.
Sunday 22 March 2009
Fast asleep
Edna was alseep when I got there today - and althoughI did try to rouse her gently she clearly was quite deeply asleep so I left a message with the nurse and left.
I won't see he tomorrow although I will ring the ward to get them to remind her that I won't be in.
By Tuesday I think we should all have a better idea if the patch is working. And with a 2 day gap, if there IS a difference it should be more noticable than if I had seen her every day.
I won't see he tomorrow although I will ring the ward to get them to remind her that I won't be in.
By Tuesday I think we should all have a better idea if the patch is working. And with a 2 day gap, if there IS a difference it should be more noticable than if I had seen her every day.
Saturday 21 March 2009
A litle light reading
A think envelope plopped through the letter box this morning. It was the leaflets promosed my by the Alzheimer Society. I have had a quick read of them - especially the ones that are specifically about dementia . I recognise a lot of the symptoms and some of the advice on how to talk to and deal with a dementia sufferer was also useful. I need to go through them all slowly and carefully.
Steve came with me today to visit her. He said she was a LOT better thsn when he lsdst saw her (Sunday) She looked better than she did yesterday. I had a quick word with the sister when we got there. (Edna was dozing) I got the impression she didn;t feel the Rivastigmine was making a great deal of difference. I just wush I knew how long it should take to see some results. The staff on the ward won;t know becasue they've never the patch before.
Steve and I had a very lucid converstasion with her all about the 3 piece suite he had just bougfth and the carpets he is hoping to organize and order on Monday. But interposed with that was some stuff from 'Planet Edna' The most outrigeous was the botom end of the ward is a club in the evenings. Mind you earlier in the week she was telling me the ward opened for waifs and strays overnight. The lady in the bed next to her is her friend Doris Pilkington - although the lady (real name Diana Stokes) doesn't admit she knows Edna. Edna doesn't want to push the matter with her.
But at least she was pleasant and friendly. It makes a nice change.
I took a quick trip to Fosters today to take one of Edna's walkers back to her flat. There were some of the ladies in the common room and one of them asked me how Edna was. I wasn't sure what to say. I can't explain what is wrong with Edna, but obviously she isn't OK or she wouldn't still be in hospital. So I settled for a rather evasive 'She is OK ish'.
I have told her brother Len what she has been diagnosed with and will tell June (her niece) when i get hold of her. They are her family and in my opinion need to know. But I winder what Edna would say ?
I need to think very carefully about what I do and say in relation to Edna and ne very sure I am doing what SHE would want if she wa she was in posession of her faculties.
Steve came with me today to visit her. He said she was a LOT better thsn when he lsdst saw her (Sunday) She looked better than she did yesterday. I had a quick word with the sister when we got there. (Edna was dozing) I got the impression she didn;t feel the Rivastigmine was making a great deal of difference. I just wush I knew how long it should take to see some results. The staff on the ward won;t know becasue they've never the patch before.
Steve and I had a very lucid converstasion with her all about the 3 piece suite he had just bougfth and the carpets he is hoping to organize and order on Monday. But interposed with that was some stuff from 'Planet Edna' The most outrigeous was the botom end of the ward is a club in the evenings. Mind you earlier in the week she was telling me the ward opened for waifs and strays overnight. The lady in the bed next to her is her friend Doris Pilkington - although the lady (real name Diana Stokes) doesn't admit she knows Edna. Edna doesn't want to push the matter with her.
But at least she was pleasant and friendly. It makes a nice change.
I took a quick trip to Fosters today to take one of Edna's walkers back to her flat. There were some of the ladies in the common room and one of them asked me how Edna was. I wasn't sure what to say. I can't explain what is wrong with Edna, but obviously she isn't OK or she wouldn't still be in hospital. So I settled for a rather evasive 'She is OK ish'.
I have told her brother Len what she has been diagnosed with and will tell June (her niece) when i get hold of her. They are her family and in my opinion need to know. But I winder what Edna would say ?
I need to think very carefully about what I do and say in relation to Edna and ne very sure I am doing what SHE would want if she wa she was in posession of her faculties.
Friday 20 March 2009
A slight improvement?
Today's visit was easier than some of the previous have been. She seemed more lucid, but towards the end of the time what she was telling me was clearly not real. But her personality was much nicer. She was much more like the old Edna. I never felt threatened or felt I had to watch my words to make sure I didn't upset her. So maybe I am being optimistic but I think the Rivastigmine is starting to have an effect.
Unfortunately she told me she didn't well last night - and insomnia is one of the reported side effects. . Alos the physio came to take her for a walk but it had to be abandoned becasue Edna felt dizzy. This is another side effect of the drug - although dizziness in a old lady can be due to a number of things of course.
Overall in herself she seemed better and happier than she has been. She even at times showed some insight into her condition. But some of the things she was telling me about events on the ward were still clearly her own fantasy. But much more plausible than previous fantasies have been. So although it is early days I am cautiously optimistic.
I have contacted the Alzheimers Society and they are going to send me some leaflets - and can arrange an outreach visit to me if I want to talk to someone. I have also contacted the social worker to try to arrange a meeting , so I am starting to get organised.
Also from some of the things Edna has said recently I am beggining to think she may not be totally against some sort of residential care after all.
So things COULD be starting to move in the right direction. However I am sure I have to be prepared for setbacks in the short term .
Unfortunately she told me she didn't well last night - and insomnia is one of the reported side effects. . Alos the physio came to take her for a walk but it had to be abandoned becasue Edna felt dizzy. This is another side effect of the drug - although dizziness in a old lady can be due to a number of things of course.
Overall in herself she seemed better and happier than she has been. She even at times showed some insight into her condition. But some of the things she was telling me about events on the ward were still clearly her own fantasy. But much more plausible than previous fantasies have been. So although it is early days I am cautiously optimistic.
I have contacted the Alzheimers Society and they are going to send me some leaflets - and can arrange an outreach visit to me if I want to talk to someone. I have also contacted the social worker to try to arrange a meeting , so I am starting to get organised.
Also from some of the things Edna has said recently I am beggining to think she may not be totally against some sort of residential care after all.
So things COULD be starting to move in the right direction. However I am sure I have to be prepared for setbacks in the short term .
Thursday 19 March 2009
Confusion
I am confused but thankfully do not think I have early dementia.
Finally 10 days after the psychiatrist recommended it, Edna has started treatment with the patches. She was still 'surmising' a lot today. On the occasions when I did try to correct her she showed signs of becoming grumpy. But one positive sign is she has said she will consider taking all help that is available, and was also considering going to a home for convalescance for a bit. She also didn't react unfavourably when I pointed out that she has been fine in hospital but run into problems at home. So today at least she was agreeable to the idea of help. I wonder what her attitude will be tomorrow?
But at the end of my visit she was exepressing doubts about the fact that I have access to her bank acccounts. It isn't tnat she thinks I am going to take her money (thank god!) and she knows she can't get to the bank. But she doesn't feel in control becasue she casn't manage her money herself. That thudding sound is me banging my head against a brick wall. I sometimes feel I can't do anything right. But I suppose it is a good sign that she has started talking about wanting to be in control.It has been some time since she has used that phrase.
I was annoyed about the long delay in getting the drug so have asked PALS to investigate what happened. I am sure it is a systemic failure in some way, and I do feel uncomfortable about setting Pals on my friuends and ex colleagues but 10 days was FAR too long.
It was during the talk with PALS that I became confused. I asked if they were up to date with Edna's case. They dsaid they were, but were very surprised when ~I mentioned dementia. All tney had picked up was the medical staff saying she was fantasising a lot. Maybe I am putting too much importance on the fcat that PALS didn't have the same diagnosis as I did. they are not medical people after all. But they hadn't even been given the dementia diagnosis.
I am also once again petrifed that she will be discharged without sufficient care and that I will be elft to pick up the peices as I have after every hospital admssion.But I am paranoid because doctors didn't pick up on the problems I was concerned about in earlier admissions - and the yo=yoing in and out has left me cyncial and sceptical. But I must remember this is a different team who specialise in elderly care.
Edna is still showing worrying signs of a lack of cognitive ability. She was having real problems filling in her menu again today. She ticked coronation chicken as one of her choices - and she doesn't like anything spicy. And she hadn't selected anything at all for one meal. One of the auxillaries helped her get it sorted out. Its when I see her unable to do simple things like that , thsat I despiar about how she will cope with her medication - escpecially her nebuliser - at home on her own. Unless the Rivastigmien has a miraculous effect her medication could be the determining factor in whether she can go back to Fosters or not. I really muct contact the social worker and have a talk about what help can be available for Edna if she is prepared to accept help.
I have located a source of professional help for me via the local Age concern office. I must ring her tomorrow as I still have no idea how to handle Edna.
Finally 10 days after the psychiatrist recommended it, Edna has started treatment with the patches. She was still 'surmising' a lot today. On the occasions when I did try to correct her she showed signs of becoming grumpy. But one positive sign is she has said she will consider taking all help that is available, and was also considering going to a home for convalescance for a bit. She also didn't react unfavourably when I pointed out that she has been fine in hospital but run into problems at home. So today at least she was agreeable to the idea of help. I wonder what her attitude will be tomorrow?
But at the end of my visit she was exepressing doubts about the fact that I have access to her bank acccounts. It isn't tnat she thinks I am going to take her money (thank god!) and she knows she can't get to the bank. But she doesn't feel in control becasue she casn't manage her money herself. That thudding sound is me banging my head against a brick wall. I sometimes feel I can't do anything right. But I suppose it is a good sign that she has started talking about wanting to be in control.It has been some time since she has used that phrase.
I was annoyed about the long delay in getting the drug so have asked PALS to investigate what happened. I am sure it is a systemic failure in some way, and I do feel uncomfortable about setting Pals on my friuends and ex colleagues but 10 days was FAR too long.
It was during the talk with PALS that I became confused. I asked if they were up to date with Edna's case. They dsaid they were, but were very surprised when ~I mentioned dementia. All tney had picked up was the medical staff saying she was fantasising a lot. Maybe I am putting too much importance on the fcat that PALS didn't have the same diagnosis as I did. they are not medical people after all. But they hadn't even been given the dementia diagnosis.
I am also once again petrifed that she will be discharged without sufficient care and that I will be elft to pick up the peices as I have after every hospital admssion.But I am paranoid because doctors didn't pick up on the problems I was concerned about in earlier admissions - and the yo=yoing in and out has left me cyncial and sceptical. But I must remember this is a different team who specialise in elderly care.
Edna is still showing worrying signs of a lack of cognitive ability. She was having real problems filling in her menu again today. She ticked coronation chicken as one of her choices - and she doesn't like anything spicy. And she hadn't selected anything at all for one meal. One of the auxillaries helped her get it sorted out. Its when I see her unable to do simple things like that , thsat I despiar about how she will cope with her medication - escpecially her nebuliser - at home on her own. Unless the Rivastigmien has a miraculous effect her medication could be the determining factor in whether she can go back to Fosters or not. I really muct contact the social worker and have a talk about what help can be available for Edna if she is prepared to accept help.
I have located a source of professional help for me via the local Age concern office. I must ring her tomorrow as I still have no idea how to handle Edna.
Wednesday 18 March 2009
Frustration
I wen to see Edna today. Most of the time she was OK but we had one or two dodgy moments . She insisted that one of the hospital staff was 'from Alma's' i.e. Fosters where she lives. When he said he didn'tknow Alma she got huffy with me. Then she asked me for some money. The 5.00 that vanished on Monday is still missing. She INSISTTED she had had to miss out on a shopping trip becasuse she didn't have any money. With some trepidation I have left her another 5.00 - and told the sister on duty what I had done. I just hope to goodness she doesn't lose it.
She still hasn't started treatment, The patches have been ordered form the company. the expectation is that they will get to QE tomorrow. Which means they shoudl get to Selly Oak on Friday at the latest. But it has been a week since she was diagnosed and the psychaotrist reccomended the treatment. That is a week lost to see how well she will react to it. A week when I could have been spared Mrs Hyde,
The sytem shouldn't be that slow. What I don't know is whether Pharmacy hace cocked up or whether the medical staff ignored the proper protocol. I may contact PALS about this - but its tricky as I'm challenging freinds and former colleagues about their work - just as I am about to start work back with them.
I feel very annoyed, frustrated and upset. I am not exactly over the moon about having come home with more laundry for her. My washing machine is lut of action at the moment due to the renovations in the downstairs cloakroom so I can't do anything for a couple od days anyway. I am really hoping I can accymulate anough for a half load so I can do hers on their own.
I still don't have a clue how to talk deal with her when she is clearly 'surmising' (her word for getting things wrong) .
I was also very worried about how she coped with completeing the menu card. She was going to have cottsage cheese salad with brussel sprouts. Certainly the last time I saw her complete a menu card she was much more with it.Also it we presented with one of the 3 meal selctions (Friday breakfast) folded over so she ignored it , Then when I pointed it out to her she said she she never normally filled in a menu for breakfast.
I get the impression she is worse than she was last week.
She still hasn't started treatment, The patches have been ordered form the company. the expectation is that they will get to QE tomorrow. Which means they shoudl get to Selly Oak on Friday at the latest. But it has been a week since she was diagnosed and the psychaotrist reccomended the treatment. That is a week lost to see how well she will react to it. A week when I could have been spared Mrs Hyde,
The sytem shouldn't be that slow. What I don't know is whether Pharmacy hace cocked up or whether the medical staff ignored the proper protocol. I may contact PALS about this - but its tricky as I'm challenging freinds and former colleagues about their work - just as I am about to start work back with them.
I feel very annoyed, frustrated and upset. I am not exactly over the moon about having come home with more laundry for her. My washing machine is lut of action at the moment due to the renovations in the downstairs cloakroom so I can't do anything for a couple od days anyway. I am really hoping I can accymulate anough for a half load so I can do hers on their own.
I still don't have a clue how to talk deal with her when she is clearly 'surmising' (her word for getting things wrong) .
I was also very worried about how she coped with completeing the menu card. She was going to have cottsage cheese salad with brussel sprouts. Certainly the last time I saw her complete a menu card she was much more with it.Also it we presented with one of the 3 meal selctions (Friday breakfast) folded over so she ignored it , Then when I pointed it out to her she said she she never normally filled in a menu for breakfast.
I get the impression she is worse than she was last week.
Tuesday 17 March 2009
A guilt trip
Today I ended up sorting out a skip to get rid of combined rubbish form Steve's and my house - mainly caused by all the renovation work at Steve's. I used that as an excuse to not visit Edna. I rang the ward and asked them to give her message - and emphasised they should tell her I was doing some stuff for Steve's house. Since Steve is still the absolute centre of her world I know she won't mind.
I've used it as an excuse because I couldn't face going into see her. Am I being selfish and uncaring or am I (as I hope) making time for myself to re-charge my batteries ready to face the next difficult conversation.
Tony said he didn't blame me. I know Steve won't blame me. But I am on guilt trip. I'm not going to change my mind about going in. I am too tired after helping to shift rubbish into the skip and doing gardening.
I've used it as an excuse because I couldn't face going into see her. Am I being selfish and uncaring or am I (as I hope) making time for myself to re-charge my batteries ready to face the next difficult conversation.
Tony said he didn't blame me. I know Steve won't blame me. But I am on guilt trip. I'm not going to change my mind about going in. I am too tired after helping to shift rubbish into the skip and doing gardening.
Monday 16 March 2009
Meeting with the consultant
Well the meeting was to put it mildly interesting. Edna ended up attending the meeting because (as she rightly said) it wasn't right to discuss things behind her back. Fortunately when we got called she needed to go via the toilet and didn't object to me going in without her. Then she took AGES to find her way in, so I had plenty of time to express my concerns. Dr Main then put my concerns to her - snd aslthough she didn't accept them exactly, sher was less aggressive than she wuld ahve been if I had been saying the same things.
Treatment STILL hasn't started - for reasons I understand but Dr Main clearly doesn't. One of the junior medical staff has that as a top priority to sort out tomorrow. My guess is it maye turn up tomorrow at QE, in which case she may get her first dose on Wednesday.
The bottom line from the meeting is that there is no pwer on earth that can force Edna to accept help if she doesn't want it/accept she needs it. Dr Main said that yo-yo admissions may be more acceptable than other options. That is all very well for HIM to say - I am not so sure.
On the plus side she will be discharged home with the new treatment which should get her cognition better so hopefully she will care for herself better and may be able to manage her medication better. Aso Dr Main has suggested reviewoing her medication and stopping anything that isn't totally necessary so that will make things better as well.
I had a quick word with the social worker - but need a longer one I think. She knows there are limits on what I can do - but also knows I am willing to do as mch as I can if that makes the difference between her staying at Fosters or not.
Edna has ifetn mentioned that she might like to go into a private nursing home 'for a while' I may try to suggest to her that she might like to pay for more help at home to make her life easier. Trouble is carers can't do medication - and my big concern is she will manage that even if it is simplified. Someone has got to make sue the uses her patch AND uses her nebuliser. Tat may well be ther definign factor in what happens to her when she leaves Selly Oak.
Sadly she us still living in her own little world. She has lost a 5.00 note from her purse - and thinks the nurses have stoeln it.In the course of searching for the money I discovered a disgusting smelly gone mouldy peice of cake in the pot where she soaks her false teeth. Again she blamed the nurses for putting that in there.
It was clear all the people in the meeting realised how confused she is and are not going to take what she says at face value. That is a relief.
I will be interested to know what srt of response they get from the wardens when they ask them about Edna.
Treatment STILL hasn't started - for reasons I understand but Dr Main clearly doesn't. One of the junior medical staff has that as a top priority to sort out tomorrow. My guess is it maye turn up tomorrow at QE, in which case she may get her first dose on Wednesday.
The bottom line from the meeting is that there is no pwer on earth that can force Edna to accept help if she doesn't want it/accept she needs it. Dr Main said that yo-yo admissions may be more acceptable than other options. That is all very well for HIM to say - I am not so sure.
On the plus side she will be discharged home with the new treatment which should get her cognition better so hopefully she will care for herself better and may be able to manage her medication better. Aso Dr Main has suggested reviewoing her medication and stopping anything that isn't totally necessary so that will make things better as well.
I had a quick word with the social worker - but need a longer one I think. She knows there are limits on what I can do - but also knows I am willing to do as mch as I can if that makes the difference between her staying at Fosters or not.
Edna has ifetn mentioned that she might like to go into a private nursing home 'for a while' I may try to suggest to her that she might like to pay for more help at home to make her life easier. Trouble is carers can't do medication - and my big concern is she will manage that even if it is simplified. Someone has got to make sue the uses her patch AND uses her nebuliser. Tat may well be ther definign factor in what happens to her when she leaves Selly Oak.
Sadly she us still living in her own little world. She has lost a 5.00 note from her purse - and thinks the nurses have stoeln it.In the course of searching for the money I discovered a disgusting smelly gone mouldy peice of cake in the pot where she soaks her false teeth. Again she blamed the nurses for putting that in there.
It was clear all the people in the meeting realised how confused she is and are not going to take what she says at face value. That is a relief.
I will be interested to know what srt of response they get from the wardens when they ask them about Edna.
Sunday 15 March 2009
Laundry
A longer visit today. She seemed to be in a lot of pain - there was certainly a lot of ouching and grimacing. But it somehow didn't ring true. Both the warden have in the past expressed the view that she often put on problems as a bit if attention seeking. I have a sneaky feeling the pain today was a bit like that. Certainly the nurses paid no attention to her obvious moans and groans.
Also somehow she had managed to lose not just one but BOTH of her ID bands. I don;t have a clue how she could have done it - but the nurses wouldn't take them off. She was given an alarm pendant when she was discharged lat month. The wardnes told me it ended up in 3 pieces after she took it apart. She would appear to have a compulsion to fiddle with things.....whihc is potentially very dangerous.
Today I was regaled with the tale of her night lut with Doris Pilkington lat night. She hasn't spoken to Doris for years after they fell out when Edna felt she was being sponged on. Edna actually believed Doris had died. Doris has been a persistent feature in her tales - even more so than Alan. I am wondering if she fantasises about her because she has some unfinished business. She said today that she was glad she and Dorid were talking again - even though they hadn't discussed what happened, I wonder if subconciously she wants to apologise to Doris. I do find it interestong that the one person she has NEVER mentioned seeing is Doug (her husband) and David (her elder son) . Either their deaths are ingrained into memory - or she has no unfinished business with them.
Today I had another bag of luamdry left by the nurses. At the moment I have some of her stuff drying, some in the washer, and now some more to go in with my next load. Its such a small thing to find annoying but I do. I am wondering if I should take more clothes in so I can do ALL her laundry in one load . I need to get on top of the luandry issue so I feel incontrol of it -not it in control of me. Its the one thing I haven't yet worked out how to manage.
She wasn't agrressive today - but I still felt I was visitng Mrs Hyde - which I preusme emans the Alzheimers was on top. There was an element of deliberate manipulation and a slyness about her attitude that I found unsettling. Almst as if she was humouring me by NOT disagreeing with me - but would be telling everyone what she really thought when I was gone.
I suppose I hmour her by entering her world when I don't try to get her to realise that Alan is dead, or that the woman down the ward isn't really Doris Pilkington. I wonder is she realises on one level that I am doing that?
One thing she said whihc I do need to find out if it fantasy or not is that she has been weighed (probably correct) and that she has lost another stone (unlikely to be true - although I can beleive she has lost more weight). I hope they have weighed her. Her BMI is almost certainly arounf 18 or 19 - possibly even lower. But she is an high protein diet and having fortisips so they are trying to stem the tied.
I really need to talk to the nurses - but it is so difficult to do it while I am on the ward since it is likely to bring out her paranoia and turn her into Mrs Hyde. I still don't know how she is going to react to the fact that the consultant wants to see me tomorrow. The fact that it is the consultant who has requested the meeting should make it all OK - but I wouldn't bet on it.
Also somehow she had managed to lose not just one but BOTH of her ID bands. I don;t have a clue how she could have done it - but the nurses wouldn't take them off. She was given an alarm pendant when she was discharged lat month. The wardnes told me it ended up in 3 pieces after she took it apart. She would appear to have a compulsion to fiddle with things.....whihc is potentially very dangerous.
Today I was regaled with the tale of her night lut with Doris Pilkington lat night. She hasn't spoken to Doris for years after they fell out when Edna felt she was being sponged on. Edna actually believed Doris had died. Doris has been a persistent feature in her tales - even more so than Alan. I am wondering if she fantasises about her because she has some unfinished business. She said today that she was glad she and Dorid were talking again - even though they hadn't discussed what happened, I wonder if subconciously she wants to apologise to Doris. I do find it interestong that the one person she has NEVER mentioned seeing is Doug (her husband) and David (her elder son) . Either their deaths are ingrained into memory - or she has no unfinished business with them.
Today I had another bag of luamdry left by the nurses. At the moment I have some of her stuff drying, some in the washer, and now some more to go in with my next load. Its such a small thing to find annoying but I do. I am wondering if I should take more clothes in so I can do ALL her laundry in one load . I need to get on top of the luandry issue so I feel incontrol of it -not it in control of me. Its the one thing I haven't yet worked out how to manage.
She wasn't agrressive today - but I still felt I was visitng Mrs Hyde - which I preusme emans the Alzheimers was on top. There was an element of deliberate manipulation and a slyness about her attitude that I found unsettling. Almst as if she was humouring me by NOT disagreeing with me - but would be telling everyone what she really thought when I was gone.
I suppose I hmour her by entering her world when I don't try to get her to realise that Alan is dead, or that the woman down the ward isn't really Doris Pilkington. I wonder is she realises on one level that I am doing that?
One thing she said whihc I do need to find out if it fantasy or not is that she has been weighed (probably correct) and that she has lost another stone (unlikely to be true - although I can beleive she has lost more weight). I hope they have weighed her. Her BMI is almost certainly arounf 18 or 19 - possibly even lower. But she is an high protein diet and having fortisips so they are trying to stem the tied.
I really need to talk to the nurses - but it is so difficult to do it while I am on the ward since it is likely to bring out her paranoia and turn her into Mrs Hyde. I still don't know how she is going to react to the fact that the consultant wants to see me tomorrow. The fact that it is the consultant who has requested the meeting should make it all OK - but I wouldn't bet on it.
Saturday 14 March 2009
No medication yet
Just a quick visit to see Edna today. Steve was with me and he finds it too distressing to say for too long so we only stayed about 30 minutes, Edna understood that he had work to do.
Mr Hyde Or should that Mrs Hyde?)surfaced very briefly when I had to make it plain I was NOT going to bring her any money so she could go shoe shopping. But as Steve was there she decided it wasn't an argument although she insisted she WAS allowed out of the hospital and said she could always go to the bank to get some money out. I hate it when I have to enforce reality on her. Maybe I should just say yes - and hope she has forgotten about the money next time I go to see her :-(
I managed to find out today that her treatment hasn't started yet for a reason I had actually worked out . The teratment they wanted (Rivastigmine patch) isn;t on the hospital formulary so the pharmacy don;'t keep it and won't get it. I asked if they were planning on substituting a different form - or a different drug - I know they have Aricept at QE - but the sister said that decision would have to wait untl the consultant was back on Monday. She was on Quetiapine for a short time but that seems to have been stopped to my releif. Atypical anti-psychotics in dementia have a dodgy reputation.
I am avxious to see what difference drug treatment masy make to her condition. I need to keep a record of how she is before and during gtreatment so I have an objective way to decide if it is working or not. OK I know the doctors must have a methid to assess the success or failure of treatment = probably repeat MMSE assesments - but I don't wnat to rely just on medical advice. After all I know Edna better than they do.
Until she starts treatment we are in 'wait and see ' mode. So all I can do is keep up with the laundry
Mr Hyde Or should that Mrs Hyde?)surfaced very briefly when I had to make it plain I was NOT going to bring her any money so she could go shoe shopping. But as Steve was there she decided it wasn't an argument although she insisted she WAS allowed out of the hospital and said she could always go to the bank to get some money out. I hate it when I have to enforce reality on her. Maybe I should just say yes - and hope she has forgotten about the money next time I go to see her :-(
I managed to find out today that her treatment hasn't started yet for a reason I had actually worked out . The teratment they wanted (Rivastigmine patch) isn;t on the hospital formulary so the pharmacy don;'t keep it and won't get it. I asked if they were planning on substituting a different form - or a different drug - I know they have Aricept at QE - but the sister said that decision would have to wait untl the consultant was back on Monday. She was on Quetiapine for a short time but that seems to have been stopped to my releif. Atypical anti-psychotics in dementia have a dodgy reputation.
I am avxious to see what difference drug treatment masy make to her condition. I need to keep a record of how she is before and during gtreatment so I have an objective way to decide if it is working or not. OK I know the doctors must have a methid to assess the success or failure of treatment = probably repeat MMSE assesments - but I don't wnat to rely just on medical advice. After all I know Edna better than they do.
Until she starts treatment we are in 'wait and see ' mode. So all I can do is keep up with the laundry
Friday 13 March 2009
Just back from hospital visiting
I was nervous about visiting Edna today. She was so aggressive yesterday. Today Dr Jekkyl had replaced Mr Hyde and the visit was much easier. There were only 2 difficult moments.
She had lost her purse. I had searched high and low in the all the usual places where she might have put it by accident. Knitting bag, sponge bag, among her clothes in the bed...... It was nowhere to be found. So I reported it the a nurse and very quickly a second nurse came over and said when she had mislaid her purse yesterday it had been in an inside zipped pocket of her handbag that I didn't know existed. It was in there - but Edna subsequntly said to me (not the nurse!) that she thought the nurse had conjured it back in there with sleight of hand - implying the nurse had stolen it. I tried as gently as I could to say she had done no such thing, and lucklily Edna said it wasn't worth arguing about. Clearly though it was easier for her to think the nurse had been involved in its dissappearnce than to accept that she hadn't checked that pocket when she was looking. Thinking about it she only said she had lost it when I commented that I couldn't see it in her bag when I was going though it looking for the pen I gave her (which also seems to have vanished. Maybe I started the whole upset!! But she does mislay things SO easily.
The other upsetting moment was when she was talking about Alan being further down the ward. She did realise she had upset me talking about him. I didn't even try to convince her that he was dead so couldn't be there. However upsetting ,it was easier to enter her world .
The obvious hallucinations are the hardest things for me to accept. It is such a horrible sign of how bad she is. Confusion, poor memory and losing things are the sort of things we ALL do. Hallucinating is something else altogether.
Also the personality shifts are very hard to cope with. Looking back I can see these have been happening on a smaller scale for some time. The childish behaviour in West Heath was probably part of the same thing. But now I know the diagnosis, it somehow seems more obvious. I just hope I can modify my behaviour so Mr Hyde says hidden. Her aggressive side comes out when she is contradicted on something she firmly beleives, or when she is scared. At keast I think that is what happens. If I can allow for that in my responses ,hopefully she won't get aggressive so often - and I might be able to sooth her if Mr Hyde shows signd of taking over
I have tried to contact the sociial worker - but she was out . But she will contact me on Monday. Also Edna's consultant wants to see me on Monday so hopefully I will start getting some idea about how bad she really is and what sort of options they consider reasonable for her
Edna herself is resigned to whatever is going to happen. At least she is today. Tommorrow it may be a different story.
She had lost her purse. I had searched high and low in the all the usual places where she might have put it by accident. Knitting bag, sponge bag, among her clothes in the bed...... It was nowhere to be found. So I reported it the a nurse and very quickly a second nurse came over and said when she had mislaid her purse yesterday it had been in an inside zipped pocket of her handbag that I didn't know existed. It was in there - but Edna subsequntly said to me (not the nurse!) that she thought the nurse had conjured it back in there with sleight of hand - implying the nurse had stolen it. I tried as gently as I could to say she had done no such thing, and lucklily Edna said it wasn't worth arguing about. Clearly though it was easier for her to think the nurse had been involved in its dissappearnce than to accept that she hadn't checked that pocket when she was looking. Thinking about it she only said she had lost it when I commented that I couldn't see it in her bag when I was going though it looking for the pen I gave her (which also seems to have vanished. Maybe I started the whole upset!! But she does mislay things SO easily.
The other upsetting moment was when she was talking about Alan being further down the ward. She did realise she had upset me talking about him. I didn't even try to convince her that he was dead so couldn't be there. However upsetting ,it was easier to enter her world .
The obvious hallucinations are the hardest things for me to accept. It is such a horrible sign of how bad she is. Confusion, poor memory and losing things are the sort of things we ALL do. Hallucinating is something else altogether.
Also the personality shifts are very hard to cope with. Looking back I can see these have been happening on a smaller scale for some time. The childish behaviour in West Heath was probably part of the same thing. But now I know the diagnosis, it somehow seems more obvious. I just hope I can modify my behaviour so Mr Hyde says hidden. Her aggressive side comes out when she is contradicted on something she firmly beleives, or when she is scared. At keast I think that is what happens. If I can allow for that in my responses ,hopefully she won't get aggressive so often - and I might be able to sooth her if Mr Hyde shows signd of taking over
I have tried to contact the sociial worker - but she was out . But she will contact me on Monday. Also Edna's consultant wants to see me on Monday so hopefully I will start getting some idea about how bad she really is and what sort of options they consider reasonable for her
Edna herself is resigned to whatever is going to happen. At least she is today. Tommorrow it may be a different story.
Thursday 12 March 2009
How it all began
Its 5.00 and I can't sleep. The day before yesterday I heard a word that will change my life radically for the remaining months /years of my ex mother-in-laws life. She has been diagnosed with dementia and the plan is to start her on Rivastigmine so I deduce she has Alzheimers.
The fact that she has always been frightened of getting Alzheimers is a very bitter irony under the circumstances.
Edna is 87. She was widowed 20 years ago, and has tragically also outlived both her sons. Her elder son died back in the 60's. Her younger son - my ex husband- died in March 2008 . Her elder sister died in November 2007, her brother-in-law died in March last year and his funeral was on the same day as her sons. Her younger brother lives 400 miles away and is not in good health. So her only active family is myself and my son who is 20 and in the socnd year of univesity.
She lives in a small flat in a warden controlled complex. Like me the wardens have been increasingly concerned about her since last March. But like me assumed her bereavment was the root cause of her depression and forgtefulness. I can't beleive the bereavement is not one of the causatove factors but really does it matter?
The past year has been one of increasing worry. I used to go and see her with my son once every couple of weeks. Since Alan's death I have seen my time with her increase from 2 visits a month to 2 or 3 visits a week. I have been her next -of -kin for some years because her son had a drink problem which left him estranged from her. But it has only been since August last year that this role has become a major one. It was in August that she had her first of what was to be a succession of yo-yo admissions to hospital with a variety of complaints. Prior to Alans death her main problem was COPD which left her very breathless, restricted her mobility and left her unable to eat large meals. She also had some arthritic pain. Since Agust we have added pulmonary embolus and atrial fibrillation to her illnesses - and now dementia
Even before this diagnosis, it was obvious that Edna was going to need much more input from me. So partly becasue of that and partly for other reasons I took early retirment form my job as a pharmacist working in a local hospital. My intention was to work part time as a lcoum and I am getting that sorted out at the moment. I know don't know how much input Edna may need from me, if I will be able to do any work.
The most distressing thing is not the Edna forgets things gets confused and sometimes hallucinates. It is that she says such hurtful things to me. She has several times implied or said straight out she thinks I am only after her money , or am trying to dump her and don't care about her. She was doing this befiore I got the official diagnosis. At least now I know it isn't really her talking.
Although the diagnosis has stunned me - and no despite my medical backgoround I didn't suspect it- it is aso a relief because now I know she can't be discharged back to her flat with an inadequate care package because she dislikes accepting help.She is a fiercly independent woman who doesn't like the idea that she can't do things the way she would like to. However now I know they won't just accept her word for what she can and can't do .
I have so many concerns about how she can best be cared for - but I am determined that she will stay at her flat for as long as possible. In many ways I am amzed she still alive. She gave up wanting to live after Alan died I think. At 87 her life expectancy can't be measured in decades anyway. In some ways I hope she doesn't survive too long since I know she is now in her nightmare scenario.
I want the remainder of her life to be as happy as possible and I will do what I can to ensure that it is
The fact that she has always been frightened of getting Alzheimers is a very bitter irony under the circumstances.
Edna is 87. She was widowed 20 years ago, and has tragically also outlived both her sons. Her elder son died back in the 60's. Her younger son - my ex husband- died in March 2008 . Her elder sister died in November 2007, her brother-in-law died in March last year and his funeral was on the same day as her sons. Her younger brother lives 400 miles away and is not in good health. So her only active family is myself and my son who is 20 and in the socnd year of univesity.
She lives in a small flat in a warden controlled complex. Like me the wardens have been increasingly concerned about her since last March. But like me assumed her bereavment was the root cause of her depression and forgtefulness. I can't beleive the bereavement is not one of the causatove factors but really does it matter?
The past year has been one of increasing worry. I used to go and see her with my son once every couple of weeks. Since Alan's death I have seen my time with her increase from 2 visits a month to 2 or 3 visits a week. I have been her next -of -kin for some years because her son had a drink problem which left him estranged from her. But it has only been since August last year that this role has become a major one. It was in August that she had her first of what was to be a succession of yo-yo admissions to hospital with a variety of complaints. Prior to Alans death her main problem was COPD which left her very breathless, restricted her mobility and left her unable to eat large meals. She also had some arthritic pain. Since Agust we have added pulmonary embolus and atrial fibrillation to her illnesses - and now dementia
Even before this diagnosis, it was obvious that Edna was going to need much more input from me. So partly becasue of that and partly for other reasons I took early retirment form my job as a pharmacist working in a local hospital. My intention was to work part time as a lcoum and I am getting that sorted out at the moment. I know don't know how much input Edna may need from me, if I will be able to do any work.
The most distressing thing is not the Edna forgets things gets confused and sometimes hallucinates. It is that she says such hurtful things to me. She has several times implied or said straight out she thinks I am only after her money , or am trying to dump her and don't care about her. She was doing this befiore I got the official diagnosis. At least now I know it isn't really her talking.
Although the diagnosis has stunned me - and no despite my medical backgoround I didn't suspect it- it is aso a relief because now I know she can't be discharged back to her flat with an inadequate care package because she dislikes accepting help.She is a fiercly independent woman who doesn't like the idea that she can't do things the way she would like to. However now I know they won't just accept her word for what she can and can't do .
I have so many concerns about how she can best be cared for - but I am determined that she will stay at her flat for as long as possible. In many ways I am amzed she still alive. She gave up wanting to live after Alan died I think. At 87 her life expectancy can't be measured in decades anyway. In some ways I hope she doesn't survive too long since I know she is now in her nightmare scenario.
I want the remainder of her life to be as happy as possible and I will do what I can to ensure that it is
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