Who am I ? I won't know myself soon!!!

Woo2

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Apr 30, 2019
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Hindsight is a wonderful gift, but the reality of living & caring for someone means that our emotional ties can prevent us from reaching out for help. The system doesn’t help either as it’s processes & box ticking make accessing help hard.
Please know you have tried everything possible & now this eventuality is the last resort.
((((((((Hugs))))))))
Thank you @DesperateofDevon , I have organised today a sitting service but it feels hard to actually let go and leave mum with someone else , I have to do it though as I need someone to sit with her when I have a family wedding in the summer . Sorry @annielou for hijacking your thread .
 

annielou

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Sep 27, 2019
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Yorkshire
Oh Annielou - what a terrible ordeal. I was speaking to you over on my other thread about my own mother not recognising me or my dad.

The situation is similar to what my mother was like. She constantly (90% of the time) thought my dad was her own dad or one of her two brothers and that I was her sister. She would not believe that we were really us. When we tried to tell her it was us, she thought we were impostors who had kidnapped the real us and were now planning to kill her. So we had to play along to prevent the imposter scenario.

She was constantly looking for us, hunting round the house, in cupboards, under tables - frantic because she couldn't find us. Looking out the window for us coming back, pacing around, searching through her address book to see who she could phone to ask where we were. It was awful - she was in a dreadful state.

We never had any kind of formal needs assessment carried out - social work visited the house once to see what the situation was, but mainly we dealt with the nurse from the memory clinic.

It was not sustainable, and neither is your situation. When we got to the point that we couldn't go on, we called the memory clinic and they sent two nurses to the house to collect her and take her to the psychiatric ward where she has been now for 4 weeks.

She won't be coming back home because we can't live the way we were living, constantly mistaken for someone else and her frantic and terrified.
Thanks x. Yes I remember reading your post, and seeing quite a few similarities, though I think your mum was at a more extreme stage than mum with it. Although I think mum may end up building up to it if things don't improve soon.
Has your mum been moved to the specialist dementia unit yet?
 

annielou

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Sep 27, 2019
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Yorkshire
Thanks for your comments xxx
No call from SW today, sis tried ringing SW who I missed call from on friday but they told sis she was engaged at time she rang so took a message to call us back but hasn't rung back today so will have to try again tomorrow and still heard nothing from memory clinic nurse either.
Mums still mixing me up switching me between Me, the other Andrea who isn't her daughter, and 'friend'. We did manage to get over to my house with me being me most of the way and through lunch.
Through the afternoon we were back to constant switching. i've done a lot of mmming and oh right as half the time I wasnt sure who I was supposed to be or what she was talking about but as she was quite calm it wasn't too bad.
But then she was getting into a bit of a state over our Andie just upping and leaving her without telling her and hoping she was ok and nothing had happened to her. And wanting to go home because it was dark but she didnt know where she lived or I lived and got quite upset about it.
Then she switched and realised I was Our Andie and couldn't figure out why she thought I had left and I was someone else. She was really upset that she was getting so much mixed up and didnt know what she was going to do. She asked if she lived alone cos thought she did and was worried about being on her own and what if she set something on fire or go out thinking she could walk to mine or something and get lost. She was really upset and confused about being confused. Wanting to know what was going to happen to her and what could we do. I gave her a hug and managed to calm her down eventually.
We got through dinner ok but then she was back to not knowing where she lived and thought she lived at her mums stil but also had moved into another house now her mum had died but didn't know where it was.
When brought her home she still didn't think she had lived here long and thought half her things were still at her mums house and was confused so I've stayed again which I thought I probably would have to after her being so upset earlier and still confused.
I've been' friend' since we got here and shes been talking bout not living in this house and that she has another house she has been living in but doesnt know where it is. She's going to ask our Andie tomorrow. But keeps trying to work it out but whatever I answer is wrong and she isnt happy with. Shes been in wardrobe checking her clothes all there but still not been living here.
And we just had an argument because she went to make cup of tea and came back in switching tv channels back and dorth thru same 4 and I asked what she was looking for. She got annoyed because apparently I told her to look for something else on tv and I havent picked anything to watch and I've been on phone all night so what do I care anyway.
Do I usually come on Mondays or is it usually a different night? Thats probably why she doesn't know wot I want to watch cos she doesnt usually come today. I was just here when she came here. Why did she have to choose and look for things why couldn't I instead of asking her to do it. So then she picked something that was just starting and shouted 'well I'm watching this now so there!!'
Funnily enough after shouting at me about tv I went back to being me.
Now that programmes finished shes going to bed but now she is wondering where friend is? did she just get up and leave? but how cos doors are locked? She now thinks friend was sat at side of me. I'm hoping will settle and we can get to bed sometime soon but she is currently counting dirty cups from our drinks and checking rooms and doors wondering whether 'friend' was here or not.
 

deepetshopboy

Registered User
Jul 7, 2008
653
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It is ! Ive resigned myself to i
No worries x i was wondering how things with your dad. Sorry still not got the help you want sorted. You dont seem to be getting anywhere with SS or councils which must be doubly frustrating. X
t now .nobody seems to have the answer or solutions im in no mans land ! My dads not immobile,can still go toilet ok can still switch tv on just about .Get dressed but if i wasnt around he be most definitely i would imagine in a home or have round the clock care due to wandering he’s definitely getting worse he’s mishearing most things im saying now its all what what im not sure if hes deaf he losing items on a daily basis now bus pass wallet keys i spend half hour each day playing hide snd seek searching the flat its soul destroying getting sundowns in evening saying is it ok if i go to the toilet were is it ? In hes own flat ! Is it ok if i make a cup of tea is it ok if i go to bed ? then oh ill be going home tomorrow ill take my jacket with me i used to argue and say you are st home now i dont bother i hear it so often .i dread taking him back to were i live in case he switches and turns aggressive as that is were he used to live across the rd for 25 yrs as i had the rampage incident just before xmas were he got into hes old flats in a case of confusion I ended up calling he police and ambulance. I haven’t heard from sw for two weeks got emergency carers in she does a bit of cleaning then sits in hes kitchen waiting for me to come back i get about 40 mins to myself in that time meant to be 2 hours but she comes at different times so i cant plan anything like gym swimming cinema i just end up going sitting in a cafe or walking about in the cold its not really working ive orginised a carer privately via agency to take him out for 3 hours on a Tuesday but me and my dad dont like her shes very bossy doesn’t listen not particularly friendly and seems to lack dementia experience had a few incidents with her in the two weeks shes been here but took 5 weeks for agency to get her in we are paying £23 a hour too grr
 

annielou

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Sep 27, 2019
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Yorkshire
Thank you @DesperateofDevon , I have organised today a sitting service but it feels hard to actually let go and leave mum with someone else , I have to do it though as I need someone to sit with her when I have a family wedding in the summer . Sorry @annielou for hijacking your thread .
no worries, not hijacking at all x x
Well done on sorting the sitting service x Did you get your mum to daycare today? If so how was it?
 
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annielou

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Sep 27, 2019
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Yorkshire
It is ! Ive resigned myself to i

t now .nobody seems to have the answer or solutions im in no mans land ! My dads not immobile,can still go toilet ok can still switch tv on just about .Get dressed but if i wasnt around he be most definitely i would imagine in a home or have round the clock care due to wandering he’s definitely getting worse he’s mishearing most things im saying now its all what what im not sure if hes deaf he losing items on a daily basis now bus pass wallet keys i spend half hour each day playing hide snd seek searching the flat its soul destroying getting sundowns in evening saying is it ok if i go to the toilet were is it ? In hes own flat ! Is it ok if i make a cup of tea is it ok if i go to bed ? then oh ill be going home tomorrow ill take my jacket with me i used to argue and say you are st home now i dont bother i hear it so often .i dread taking him back to were i live in case he switches and turns aggressive as that is were he used to live across the rd for 25 yrs as i had the rampage incident just before xmas were he got into hes old flats in a case of confusion I ended up calling he police and ambulance. I haven’t heard from sw for two weeks got emergency carers in she does a bit of cleaning then sits in hes kitchen waiting for me to come back i get about 40 mins to myself in that time meant to be 2 hours but she comes at different times so i cant plan anything like gym swimming cinema i just end up going sitting in a cafe or walking about in the cold its not really working ive orginised a carer privately via agency to take him out for 3 hours on a Tuesday but me and my dad dont like her shes very bossy doesn’t listen not particularly friendly and seems to lack dementia experience had a few incidents with her in the two weeks shes been here but took 5 weeks for agency to get her in we are paying £23 a hour too grr

It sounds awful. You'd think after police incident at his old address SS would do something wouldn't you. It seems a bit like you can have carers to help with physical problems but they dont seem to offer help or dont know what to do when its not as much physical help but help with their emotional and mental wellbeing we need .
Mum often cant remember where she puts things or keeps things either I'm constantly going round noticing things that are in wrong place and putting them back where they should be or tracking down things mum has lost that I missed noticing were in wrong place. Halfway through looking mum will forget what looking for but carry on looking even though its now in front of her but now she doesnt recognise it. Also she will go looking for one thing and find something else take that and leave that somewhere else so later on thats another thing we can't find.
When my sister has stayed a few nights and I come back there's always quite a few things we have to look for because mum has forgot where put them and sis doesn't notice things are in wrong place like i do as she's not as used to where mum used to keep things. I worry if I'm not here things will go properly missing as some of the places she puts things are really odd.
Mum also asks what I've said a lot of the time, i think sometimes its not so much she doesnt hear me as she doesn't understand me.
Your carer situation sounds almost like its more trouble than its worth. Which is rubbish as you need a break where you know your dad is safe and well cared for for long enough to take a bit of time out for you.
I hope something works out for the better for you soon. I'm really sorry you're having such s tough time on all fronts X
 

Woo2

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Apr 30, 2019
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South East
no worries, not hijacking at all x x
Well done on sorting the sitting service x Did you get your mum to daycare today? If so how was it?
Hmm I did get her there , to find it was closed , they couldn’t get the shutters open . Trying again on Friday. I’m sorry you had a mixed day . X
 

Pete1

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Jul 16, 2019
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Hi @deepetshopboy, sorry to hear about the difficulties with Dad, sun-downing can be a very frustrating time for sure.

Do the Home Care Company specialise in supporting clients with dementia? For the money you are paying you should be able to get that specialist support. I had to change Mum's Home Care provider twice to ensure the right level of support (as the dementia progressed a different level of care was required). If the current company aren't meeting you expectations I would suggest speaking with the Operational Manager and explaining what isn't working. If they aren't equipped to deal with someone with advanced dementia then you should look to source a more suitable provider, one that can meet those needs.
 

Pete1

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Jul 16, 2019
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Hi @annielou, another challenging day for you. I hope you have better luck with Social Services - there should be an emergency number that you can call - if you don't get any joy through the usual route, I would be inclined to call that. Hopefully you will get some joy from the memory clinic - there must be someone out there to help in your time of need!!!:mad: Stay strong - all the best
 

Help!

Registered User
Sep 23, 2019
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I am so tired of being called that blooming womans name!!!!!
Mum has been getting me mixed up with other people on and off for a while but for the past fortnight shes been mixing me up with a woman who was partly responsible for mum and dad splitting up.
The woman was part of a couple mum and my dad were friends with about 40 years ago up to 29 years ago when mum thought something was going on between the friend and my dad (there was evidence) and mum and dad split up and mum and the friend haven't been friends since.
But now for the last two weeks mum keeps calling me her name and often talks about my husband as if he is the womans husband and thinks my house is the couples house. My furniture is theirs, Even my Christmas tree which I only bought last year is their tree they have had for years and years.
She keeps telling me (as the old friend) she is going to ring our Andrea, or our Andrea hasn't been to see her, or you've no need to come tomorrow --- because I'll be going to our Andreas. She is constantly refering to our Andrea as someone else not me.
She gets quite annoyed and won't believe that I am her daughter Andrea when I, or hubby, or my sister when she was here last weekend, explain I am not the old friend. She keeps saying she will ring our Andrea and ask her or ring --- and ask her who I am. Then she looks in her bag for something to say who I am or reads her address book to see if it says there who I am. She will read out my address and say you cant live there 999 letsby avenue because our Andrea lives at 999 letsby avenue and you live near me or in (friends village)
The most upsetting and annoying part is that obviously I'm not a fan of the friend and neither was mum for last 29 year so when she realises who she's talking about she isn't happy. It's awkward reminding mum why they are not friends, that her and dad split up 29 year ago and he died 4 year ago. There's no way to avoid telling her either as she gets so confused while talking about things that it has to come out who I am and she gets so het up asking questions about it that you have to answer and reveal I'm Andrea her daughter not the friend. It doesn't sink in properly though and just gets more and more confusing for everyone as she calls me both Andrea and --- in the same sentence.
It's wearing me out, constantly answering questions on the same thing and mum not believing who I am. She just won't stop going round n round it can go on for hours.
It happened a couple of times a day for a few minutes at a time at first, then more times and for longer each day and for the past week she thinks I'm this woman most of the time. And I have the same conversation about fifty times a day now with mum constantly not believing me, getting annoyed and aggressive and then upset.
My sister said at the weekend she was sick of hearing about the friend and didn't know how I could stand it all the time as she couldn't believe how long mum went on for and how confusing it all got.
I am starting to feel like I am going mad and soon won't know who I am.
Sorry for the long ramble but I just wanted to get it out, I have been writing it during another round of --- why hasn't our Andrea been to see me. Do you stay here? Well why isn't our Andrea looking after me. I'll ring her and ask her to do it.
My dad calls me mum during the night only. He calls out like a child in a low tone help me mum ,I can't bare the fact that he forgets who I am ,once he's up during the day I do remind him and he asks ,who? I call you mum,of course I know your not. .Before this he kind of referred to me as his wife ,he stopped that and the mum started ..I repeat and repeat myself to him about things and when up to him 4 times during the night at times it can be exhausting and so must have patience of a saint during the day which to be fair isn't easy ,I have a rant to my sister's to let of steam mainly 2 sisters out
Of the 4,who both say they don't know how I do it but totally understand how I feel but also the eldest tells me to ignore him when he wants to cause a row or if he shows he's angry but I say it's hard when your trying your best and as I said at times I do react too to any verbal abuse on the plus side too he is so very grateful and half the time knows he's kicked off and says sorry but doesn't stop saying sorry which then just goes on and on and can be just as annoying ,and then there will be days that are good and he just seems like his old self with a bit of banter and making jokes and singing .with this new drug I am going to give him I just hope it doesn't cause any aide effects as the other did. I want him alert and focused and just to be settled and happy.
 

annielou

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Sep 27, 2019
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Yorkshire
@Woohoo what a shame all that effort for it to be shut. I do hope you manage again and its open next time X
@Pete1 hopefully we'll hear from someone today X
@Help! Sounds a real dilemma with the tablets for you, i hope the new ones have a positive effect. X I'm thinking when memory nurse gets in touch they will review mums medication. She's on galantamine at mo. I didnt see any inprovement apart from in first couple of week she seemed a bit more motivated. She did some housework a couple of times and started knitting again, only a simple scarf, but when she went wrong she carried on whereas she would have given up and pulled it out before. I don't think its made her any less confused or agitated or upset in fact her confusion is worse with her mixing me up so much and so her agitation and upset seems more too. Before she used to get upset and agitated at me mainly over being bored and about housework (her not doing housework and me trying to) but now we have it over who I am and where I am when I'm not me etc as well as odd bouts still about boredom and housework.
I was hoping the memory team could give her something else or swap her tablets to help her feel calmer and not as frequently confused but I don't know if theres anything that can do that and reading all the side effects people are having on the drugs is very worrying isn't it.
Good luck with your dads new medication x
 

deepetshopboy

Registered User
Jul 7, 2008
653
0
Hi @deepetshopboy, sorry to hear about the difficulties with Dad, sun-downing can be a very frustrating time for sure.

Do the Home Care Company specialise in supporting clients with dementia? For the money you are paying you should be able to get that specialist support. I had to change Mum's Home Care provider twice to ensure the right level of support (as the dementia progressed a different level of care was required). If the current company aren't meeting you expectations I would suggest speaking with the Operational Manager and explaining what isn't working. If they aren't equipped to deal with someone with advanced dementia then you should look to source a more suitable provider, one that can meet those needs.
Hi pete 1 there are meant to specialise in care for dementia but I really think the lady in question has no proper experience in somebody like my dad for example the first time she came she stayed for a hour poo pooed the idea of taking my dad wanted me to stay in /homebased for a couple of were the whole idea and the original reason i asked was for respite the agency was aware of it i wasnt happy about her attitude i told the agency and and they said they would call her and make it clear shes to take my dad out every Tuesday out not in the house im not going woth them or staying in with her then the 2 nd week she came she walked in barely spoke later on said to my dad lets go walkies like he was a dog !! Called him by wrong name ! I had to correct her again poo poohed the idea of taking him to the community centre i had pre arranged for him to go to every 2 nd Tuesday like she know best
more then i know shes suddenly the expert on my dad after meeting him once i told her im hes carer i live with him 24 hours a day .she took him out that day it was new yr eve afternoon ihad arranged to met bf for a few hours so i was waiting for her to say im not taking him out you got to stay i was going politely tell her to leave !
anyway she took him out but was joking my dad has sense of humour likes to flirt he will ask nurses to marry him etc not rude just old fashioned charmer everybody always laughs ..we were laughing as we left him with her i said your going for coffee but not that coffee joking ..and was trying to break the ice anyway when i got back she said oh your dad thought we were on a date had to make it very clear we wasn'ti said no hes not like that she oh i can take a joke like the rest of them she went as far as writing it in the care book , doesn’t she know hes got dementia for god sake then i was fuming after she left but deceided to leave it for a few weeks to continue she also rung me three times id given her my number as emergency but she even rung me to ask how she could get home ie what bus and rung me when i was 5 minutes late asking if she could go even though it was written in the care plan i said no dont leave him i was back within 10 minutes now she’s saying ring the agency if im going be late and are you going be here when i get back make sure you leave my folder in a designated place make sure your dad has hes bus pass he always losing it i said i cant guarantee i will as hes leaves it she’s patronising and a bully I really dont like her so i think ill have to contact the agency and ask them to find someone else else but there saying they do try n work the problem out and dont change carers ☹️Im too nice thats my problem
 

Mandy76

Registered User
Jul 25, 2019
50
0
Thanks x. Yes I remember reading your post, and seeing quite a few similarities, though I think your mum was at a more extreme stage than mum with it. Although I think mum may end up building up to it if things don't improve soon.
Has your mum been moved to the specialist dementia unit yet?

My mother is still at the hospital. They have said she is moving either at the end of this week or the start of next week. Yesterday at the hospital she thought the sitting room was my house and she was annoyed that there were people coming in and out of my house (it was other patients and their visitors also in the sitting room). She kept telling me to offer them all a cup of tea and she couldn't understand why they were just coming in and sitting down.

They've put her on a tablet called Lorazepam to try to calm her but it is making her so tired. She is struggling to keep her eyes open. A nurse told me that she walks and walks and walks up and down all day long so is making herself extra tired.

At least she knows us now and isn't thinking we are her dad and sister. That stopped as soon as she went into the hospital. There is no explanation for that, apart from the different environment.
 

Pete1

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Jul 16, 2019
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Hi @deepetshopboy, I can certainly understand your dissatisfaction - that certainly is not an appropriate, never mind professional, approach. What I can say is not all agencies/carers operate in that fashion. You rightly need a break and they should only contact you in an emergency. As that clearly isn't working for you, get someone else to assist and perhaps sit down with them and outline your expectations, there is absolutely no harm in doing that. There should be a care plan in place that they work to - your expectations should be laid out in that care plan too. All the best.
 

deepetshopboy

Registered User
Jul 7, 2008
653
0
It sounds awful. You'd think after police incident at his old address SS would do something wouldn't you. It seems a bit like you can have carers to help with physical problems but they dont seem to offer help or dont know what to do when its not as much physical help but help with their emotional and mental wellbeing we need .
Mum often cant remember where she puts things or keeps things either I'm constantly going round noticing things that are in wrong place and putting them back where they should be or tracking down things mum has lost that I missed noticing were in wrong place. Halfway through looking mum will forget what looking for but carry on looking even though its now in front of her but now she doesnt recognise it. Also she will go looking for one thing and find something else take that and leave that somewhere else so later on thats another thing we can't find.
When my sister has stayed a few nights and I come back there's always quite a few things we have to look for because mum has forgot where put them and sis doesn't notice things are in wrong place like i do as she's not as used to where mum used to keep things. I worry if I'm not here things will go properly missing as some of the places she puts things are really odd.
Mum also asks what I've said a lot of the time, i think sometimes its not so much she doesnt hear me as she doesn't understand me.
Your carer situation sounds almost like its more trouble than its worth. Which is rubbish as you need a break where you know your dad is safe and well cared for for long enough to take a bit of time out for you.
I hope something works out for the better for you soon. I'm really sorry you're having such s tough time on all fronts X
Yes my dads exactly like your mum he will help me look for things he lost but will give me a newspaper if im looking for a dvd or a pair of glasses if im looking for a remote control he's mixing objects up as well as words .this week hes lost a dvd i just bought him went as soon as he come in the door he sat moaning all weekend there was nothing on tv i said thats why i bought you the dvd he really really got on my nerves he lost hes bus pass twice i had to get a replacement bus then said pass turned up hes bank card turned up too yesterday after missing for a month and my ordering a new one he's like a magician he hides stuff then turns up in hes hand or table or wallet after ive checked them a million times ..
And yes its very frustrating with the carers it not consistent and if im lucky to get a carer they not trained and the hassle seems not worth it im thinking of just advertising privately on a website like gumtree .yes its all immobile based care /personal care it like no-one needs help if they are not bed bound problem is sw is not dementia trained just adult social care so will be dealing with all problems not just solely dementia which is another thing needs changing all sw working with adults should be trained in dementia its such a complex illness
 

deepetshopboy

Registered User
Jul 7, 2008
653
0
Hi @deepetshopboy, I can certainly understand your dissatisfaction - that certainly is not an appropriate, never mind professional, approach. What I can say is not all agencies/carers operate in that fashion. You rightly need a break and they should only contact you in an emergency. As that clearly isn't working for you, get someone else to assist and perhaps sit down with them and outline your expectations, there is absolutely no harm in doing that. There should be a care plan in place that they work to - your expectations should be laid out in that care plan too. All the best.
I dont think said carer has even botherd reading the care plan !
 

Woo2

Registered User
Apr 30, 2019
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South East
I want to say let’s hope it’s a better day but we all know that’s not going to happen . I feel completely out of my depth this week, Mum was watching Holly & Phil earlier (don’t usually have tv on in morning but I watched Boris to see his comments on social care ), she then jumped up and went to stand in the hallway , asked what was wrong and she said she was on the tele, she now thinks they can see her as she can see them . Tried to reassure her but didn’t seem to work so I have switched it off and radio is back on . I hope for periods of peace and calm for you . X
 

canary

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Feb 25, 2014
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South coast
she said she was on the tele, she now thinks they can see her as she can see them .
Oh I remember this time. Mum began to think that everything on the TV was happening in the room and that the people could see her and were talking to her. I had to censor what she watched at that point.
 

Help!

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Sep 23, 2019
51
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@Woohoo what a shame all that effort for it to be shut. I do hope you manage again and its open next time X
@Pete1 hopefully we'll hear from someone today X
@Help! Sounds a real dilemma with the tablets for you, i hope the new ones have a positive effect. X I'm thinking when memory nurse gets in touch they will review mums medication. She's on galantamine at mo. I didnt see any inprovement apart from in first couple of week she seemed a bit more motivated. She did some housework a couple of times and started knitting again, only a simple scarf, but when she went wrong she carried on whereas she would have given up and pulled it out before. I don't think its made her any less confused or agitated or upset in fact her confusion is worse with her mixing me up so much and so her agitation and upset seems more too. Before she used to get upset and agitated at me mainly over being bored and about housework (her not doing housework and me trying to) but now we have it over who I am and where I am when I'm not me etc as well as odd bouts still about boredom and housework.
I was hoping the memory team could give her something else or swap her tablets to help her feel calmer and not as frequently confused but I don't know if theres anything that can do that and reading all the side effects people are having on the drugs is very worrying isn't it.
Good luck with your dads new medication x
thankyou ..the same as my dad ,in boxing day he was up and helping with wiping up and trying to carry the table out ,he seemed more like his old self ,then into the new year he has more sudden anger and emotional whereas he also gets very emotional anyway and wants to be able to freely walk to the corner shop as he used to do and then also he knows used to drive and misses all of that ,he very much relied on his car and a banter with the women in the corner shop who sold up and left just before his Dimentia so I can understand how frustrating it is not being able to do just the simple things that he always took for granted. Yes I really hope things work out this time. And as you say with your mum it is really hard to know if there is any improvement as some days are better than others even when as now being off the last drug. ..he also thinks the people on the telly are actually talking to him and waves .