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

deepetshopboy

Registered User
Jul 7, 2008
277
Thanks @deepetshopboy x
I think SW mentioned direct payments or something similar to sis when talked before reassessment. Think she said they put their money in and mum puts hers into a seperate account to mums usual bank account and then mum pays for care from it. I didn't understand it totally either and she hasn't mentioned it as an option since. We were bit worried if need to have seperate bank account for it mum would struggle to open a new account as doesn't have Id they require for bank accounts now so unless the bank she has existing account with would allow her to open another as existing customer without usual ID we'd be stuck and I'm not sure how mum would come across if we went in to ask, they could even think she isn't capable of looking after account she has if we go in talking about carers and mum is confused. Grrrrrr it all gets so blooming complicated.
Really sorry you're situation with dads carers still not sorted and struggling with SW x Hope you get somewhere positive with it all soon X
Hi I think some have company that deals with. Payments they do it on your behalf ie if you wanted to employ a personal assistant a payroll company will deal with it ie tax etc and direct payments so will pay a company on your behalf like agency's every authority is different .ss sometimes dont want to tell you too much as it becomes a headache for them to deal with i know one sw rolled her eyes when I mentioned it .in my dads case its a standstill now with the social worker ive more or less given up im tearing my hair out with stress as i dont understand they’re whole financial assessment thing which hadnt been done properly after them sending me forms which took 3 days to gather the required information ie bank derails bills rent etc all sent off-after xmas i then get another load of forms saying they never received the correct bank details yes they did im now having to do it all again i feel like binning it Ive been sent a letter stating my dad has to pay towards hes care they indicative amount of £75 a week then ss will pay the rest but i asked social worker to explain it she said because my dad doesn’t receive care over the treshold of the amount theres no point in them paying i said he has 1 carer 3 hours a week to take him out @66£ 1 carer who i have battled to get back from original 6 weeks free that now im paying @£32 per week surely that goes over £75 a week no she said you have to use out agencys so i said if you are getting direct payment you are allowed to get whatever agency you want are you ? thats the point of direct payments? !! Silly social worker doesnt know have to ask manager doesnt know anything !! So bloody frustrating ive tried getting more info via carers centre so what do they do ? refer my back to social worker! Then get the council finance team to patronise me about how i fill the forms in i said im more then. Capible of filling in the forms and employing and paying a agency ive been using private agencys for 1 yr for my dad grrr they have a good way of making people feel stupid I told them forget it i dont want any help
Its making me ill il just pay as i was its pathetic that a social worker and the people dealing with direct payments dont know about it ! Im also angry that the carer centre went behind my back and called them without consulting me first I originally rung her for advice about direct payments but she went back to sw who doesn’t know !! and through finance at the council who was patronising .im getting confilting advice saying oh you can use this agency ot that one but not that one .
trying to get my head around a very complicated system with zero help honestly i feel its deliberate now .on a better note my dads been put on melatonin a low dose afrer begging drs and memory clininc since nov for help its bern fairly good has settled him down about 5 per cent.im just angry as to why he was left with me asking constantly for help with hes behaviour i warned them as a carer and a human being i would not b able to cope with it hes behaviour was off the scale and if it further deteriorated then i will have to put him in a home i will not t be able to look after him mentally anymore im really quite angry i told the gp its like victorian times .i got a feeling money was the reason the drugs were witheld as my dads already on mementine and aricept:mad:
 
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Bikerbeth

Registered User
Feb 11, 2019
1,319
Bedford
So glad @annielou to hear that day care went well and really good that your Mum enjoyed herself and wants to go back again.
hopefully once the carers can be sorted out your Mum will also see the benefits.
 

annielou

Registered User
Sep 27, 2019
1,308
Yorkshire
Mum seems a bit less confused if that’s possible since she had been going .
That good. X I think it could well be that more intetaction and doing more has a positive effect
Maybe when mum feels brighter and more upbeat its easier to keep up with things than when shes low or bored. I feel like I dont offer mum enough stimulation as I'm with her most of the time and dont do much else so dont have much to talk about and often dont feel like doing much myself either so it must get boring and thats a lot of why I wanted mum to go to day centre. MW said to mum on last visit its good to interact and get her brain working, that positive stimulation is good.
 

annielou

Registered User
Sep 27, 2019
1,308
Yorkshire
Hi I think some have company that deals with. Payments they do it on your behalf ie if you wanted to employ a personal assistant a payroll company will deal with it ie tax etc and direct payments so will pay a company on your behalf like agency's every authority is different .ss sometimes dont want to tell you too much as it becomes a headache for them to deal with i know one sw rolled her eyes when I mentioned it .in my dads case its a standstill now with the social worker ive more or less given up im tearing my hair out with stress as i dont understand they’re whole financial assessment thing which hadnt been done properly after them sending me forms which took 3 days to gather the required information ie bank derails bills rent etc all sent off-after xmas i then get another load of forms saying they never received the correct bank details yes they did im now having to do it all again i feel like binning it Ive been sent a letter stating my dad has to pay towards hes care they indicative amount of £75 a week then ss will pay the rest but i asked social worker to explain it she said because my dad doesn’t receive care over the treshold of the amount theres no point in them paying i said he has 1 carer 3 hours a week to take him out @66£ 1 carer who i have battled to get back from original 6 weeks free that now im paying @£32 per week surely that goes over £75 a week no she said you have to use out agencys so i said if you are getting direct payment you are allowed to get whatever agency you want are you ? thats the point of direct payments? !! Silly social worker doesnt know have to ask manager doesnt know anything !! So bloody frustrating ive tried getting more info via carers centre so what do they do ? refer my back to social worker! Then get the council finance team to patronise me about how i fill the forms in i said im more then. Capible of filling in the forms and employing and paying a agency ive been using private agencys for 1 yr for my dad grrr they have a good way of making people feel stupid I told them forget it i dont want any help
Its making me ill il just pay as i was its pathetic that a social worker and the people dealing with direct payments dont know about it ! Im also angry that the carer centre went behind my back and called them without consulting me first I originally rung her for advice about direct payments but she went back to sw who doesn’t know !! and through finance at the council who was patronising .im getting confilting advice saying oh you can use this agency ot that one but not that one
trying to get my head around a very complicated system with zero help honestly i feel its deliberate now .on a better note my dads been put on melatonin a low dose afrer begging drs and memory clininc since nov for help its bern fairly good has settled him down about 5 per cent.im just angry as to why he was left with me asking constantly for help with hes behaviour i warned them as a carer and a human being i would not b able to cope with it hes behaviour was off the scale and if it further deteriorated then i will have to put him in a home i will not t be able to look after him mentally anymore im really quite angry i told the gp its like victorian times .i got a feeling money was the reason the drugs were witheld as my dads already on mementine and aricept:mad:
Its so frustrating isn't it. Why does it have to be so hard. I think the same sometimes is it deliberate so we don't ask and take up services and cost money which is so short. All the going from one place or person to another doesn't help either does it, it would be so much easier if there was one person we could go to who dealt with all the others so they all know what is happening all the time instead of us seeing gp and telling them what happening and then SW and telling them and then memory worker etc etc its exhausting especially when we're stressed and exhausted caring for someone.
I'm glad to hear you got something for your dad hope it keeps helping, I must admit I do feel a but like that about mum and her sertraline. I told memory team months ago about mum getting anxious and agitated and aggressive and the OT actually mentioned it herself and said she'd speak to memory support worker and see if anything mum could take that might help her with it but when we went for diagnosis the memory doctor said mum only showed normal levels of anxiety. Erm yes she did here cos she's in hostess mode scared if she not on best behaviour you'll put her in a home. Even after I rang in tears when mum was really bad at christmas it took a few more calls and couple of weeks before they gave her them.
Hope your dad continues to get benefit from new tablet X All we want is them (and us) to have as happy, as normal and as comfortable a life as possible and I know thats not an easy thing to deliver but sometimes I feel like we're made to feel unreasonable by asking like we're not expected to even ask and just make do. I know money is a big factor as theres never enough but even so I think things could be handled a bit better and more sensitively at times. x
 
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deepetshopboy

Registered User
Jul 7, 2008
277
Its so frustrating isn't it. Why does it have to be so hard. I think the same sometimes is it deliberate so we don't ask and take up services and cost money which is so short. All the going from one place or person to another doesn't help either does it, it would be so much easier if there was one person we could go to who dealt with all the others so they all know what is happening all the time instead of us seeing gp and telling them what happening and then SW and telling them and then memory worker etc etc its exhausting especially when we're stressed and exhausted caring for someone.
I'm glad to hear you got something for your dad hope it keeps helping, I must admit I do feel a but like that about mum and her sertraline. I told memory team months ago about mum getting anxious and agitated and aggressive and the OT actually mentioned it herself and said she'd speak to memory support worker and see if anything mum could take that might help her with it but when we went for diagnosis the memory doctor said mum only showed normal levels of anxiety. Erm yes she did here cos she's in hostess mode scared if she not on best behaviour you'll put her in a home. Even after I rang in tears when mum was really bad at christmas it took a few more calls and couple of weeks before they gave her them.
Hope your dad continues to get benefit from new tablet X All we want is them (and us) to have as happy, as normal and as comfortable a life as possible and I know thats not an easy thing to deliver but sometimes I feel like we're made to feel unreasonable by asking like we're not expected to even ask and just make do. I know money is a big factor as theres never enough but even so I think things could be handled a bit better and more sensitively at times. x
Yes i agree with going through different people it’s exhausting especially when i feel im repeatedly saying the same thing to 3 different people about various issues sometimes on the same day ! Then one of hes relatives ring in the evening then ive got to expain it all over again ! Then the bug bear for me is the UTI were i get professionals explaining it to me when ive known about them for the last yr !! It feels patronising at times ..but i must not know anything about dementia as ive only been looking after my dad for 6 yrs last 1 yr 24/7 (being sarcastic)
I do hope they continue these tablets as im at a loss if they dont ;(
 

JBK

Registered User
Feb 25, 2018
45
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.
:eek::eek:
 

annielou

Registered User
Sep 27, 2019
1,308
Yorkshire
I'm struggling a bit today, mum lost me by 2 oclock today , keeps saying she's annoyed with our Andrea because she not been to see her, it wouldn't hurt her as she only lives at ----she could just pop in for a bit. Might ring her and tell her she should come. You come every day so she could. :oops:
I've been her friend with same name as her daughter who lives in same place as her daughter but I'm not her daughter.
She also is back to thinking this afternoon that she's only lived here a couple of weeks and has another house somewhere and has furniture in it, or she stlill has her mums house to sort.
She's a bit fed up and moany today as she had a bit of upset tummy last night and this morning (ongoing bowel problems) so she daren't go out. We were going to go over to mine today but havent gone with her tummy being upset so I think shes a bit bored .
She has told me about her tummy countless times with how long she has had it varying quite a bit including her thinking its been upset all week which it hasn't .
She keeps moaning about being stuck in the house for days, I tell her we went out for walk to shop for a while yesterday afternoon and she was at day centre on Wednesday which makes her feel better about it for a bit but then she forgets and goes back to thinking she's not been out for days again :confused:
I keep trying to distract her by trying to change the subject but it doesn't last long and she either goes back to moaning about her tummy and being stuck in house for days, or moaning about Our Andrea not coming, or asking about her house and where lives . She's not got really het up or upset so far but she just seems negative and mixed up today and I'm finding it hard work today
 

Vitesse

Registered User
Oct 26, 2016
201
It’s strange isn’t it? You get the odd day when you think things may be getting better, and then you come back to earth with a bang!! I don’t mean the dementia gets better, but that the medication is helping, and then the moans and groans start again. Its the same old merry go round!!
 

Bikerbeth

Registered User
Feb 11, 2019
1,319
Bedford
Total sympathy regarding the boredom @annielou. Mum is the same saying she never goes out or does anything. When she was at her bungalow she went out maybe twice a week and one of those would be for appointments. Now she is out of the CH at least 3 times a week weather permitting and she certainly has more going on there.
It must be so frustrating for you to be with your Mum and then your Mum complain you never visit her.
 

annielou

Registered User
Sep 27, 2019
1,308
Yorkshire
Thanks @Vitesse @Bikerbeth xx
Yes its a merry go round isn't it. A little bit of better time and then back to it. I read about your husbands money worry being non stop this week over on another post. Its so tiring isnt it and I never know what to do once these things starts. I try all sorts but some days nothing seems to work. I do think mums been calmer and easier to settle since on sertraline but some days are still worse than others and nothing seems to work like today.
Its been a questiony confused day, from just before 2 this afternoon untill hubby and I left at 20 to 8. Most of the day was it why hadn't our andie been to see me, then asking if i was andie and was I married, where I lived, had she been to my house etc..... Occassionaly she would ask if I was our andie and then when I said yes she'd ask was I lying to her and then Did I love her , she'd be really quite sad and upset looking then and I kept trying my best to be reassuring and tell her I loved her lots. She also kept asking about how long had she lived in current house, did she still have her old house, what did she do with her furniture, did she still have things in her mums house, where did andie and sis go, when did they move out etc....
Then at teatime we had an hour and half of mainly the same question, who was she going to supermarket with tomorrow and what time? If I said me and hubby, she'd say oh I thought our Andie said she was taking me. If I said Andie and hubby she would say oh I thought it was 'friend and hubby' so I'd say oh well it might be. She'd ask again and again and each time whatever I answered was wrong and she'd say oh i thought it was ..... so I then tried just saying well why don't you wait till tomorrow I'm sure they'll let you know, somebodys doing it but if nobody else does I'll take you, or I'm sure one of them will ring you in morning and tell you, but that didn't work either, she'd just ask again. I kept trying to draw her attention to tele or talking about dinner I was making, nothing worked she would ask her question, say opposite of my answer, and then ask me it again straight away.
I'm sorry to say I did get grumpy and ask her why she kept asking me the same question if she didn't believe my answer. She said she hadn't it was only second time she'd asked and then asked again. I said mum can we just leave it till tomorrow and she replied, why whats the matter with you I'm only asking a question and then I got grumpier and said no mum you aren't ,you've been asking the same question for an hour and half but won't believe my answer so why keep asking me. I've asked you to leave it and wait till tomorrow but you won't. I don't know what else to say to you now so can you just stop asking.
I know I shouldn't snap, I know she thinks its only her first time of asking and cant make sense of it, I know its no good trying reasoning but I still did it anyway and then I felt bad about it. I did say sorry for snapping and getting annoyed but mum just sat quiet and sulky for about ten minutes. I tried a few times to talk to her about something else but she just ignored me. Then it was time for hubby and I to leave to go to inlaws and I was a bit worried about leaving her upset and or annoyed but luckily by the time we'd been to loo, got boots and coats on etc mum was answering me again and we hugged and said bye and she asked if I was coming tomorrow and I said yes.
I wasn't sure who she thought I was when we left so I rang her from car at in laws saying Hello mum its Andie, I told her where I was and that I'd see her tomorrow and she said ok see you tomorrow and we both said love you lots and bye. I was on tenterhooks at in laws in case she rang me. as she has done each time I've been since I started going again a few week ago, but she didn't so I'm hoping that means she settled down after we left and was ok. 🤞
 

Vitesse

Registered User
Oct 26, 2016
201
Thanks @Vitesse @Bikerbeth xx
Yes its a merry go round isn't it. A little bit of better time and then back to it. I read about your husbands money worry being non stop this week over on another post. Its so tiring isnt it and I never know what to do once these things starts. I try all sorts but some days nothing seems to work. I do think mums been calmer and easier to settle since on sertraline but some days are still worse than others and nothing seems to work like today.
Its been a questiony confused day, from just before 2 this afternoon untill hubby and I left at 20 to 8. Most of the day was it why hadn't our andie been to see me, then asking if i was andie and was I married, where I lived, had she been to my house etc..... Occassionaly she would ask if I was our andie and then when I said yes she'd ask was I lying to her and then Did I love her , she'd be really quite sad and upset looking then and I kept trying my best to be reassuring and tell her I loved her lots. She also kept asking about how long had she lived in current house, did she still have her old house, what did she do with her furniture, did she still have things in her mums house, where did andie and sis go, when did they move out etc....
Then at teatime we had an hour and half of mainly the same question, who was she going to supermarket with tomorrow and what time? If I said me and hubby, she'd say oh I thought our Andie said she was taking me. If I said Andie and hubby she would say oh I thought it was 'friend and hubby' so I'd say oh well it might be. She'd ask again and again and each time whatever I answered was wrong and she'd say oh i thought it was ..... so I then tried just saying well why don't you wait till tomorrow I'm sure they'll let you know, somebodys doing it but if nobody else does I'll take you, or I'm sure one of them will ring you in morning and tell you, but that didn't work either, she'd just ask again. I kept trying to draw her attention to tele or talking about dinner I was making, nothing worked she would ask her question, say opposite of my answer, and then ask me it again straight away.
I'm sorry to say I did get grumpy and ask her why she kept asking me the same question if she didn't believe my answer. She said she hadn't it was only second time she'd asked and then asked again. I said mum can we just leave it till tomorrow and she replied, why whats the matter with you I'm only asking a question and then I got grumpier and said no mum you aren't ,you've been asking the same question for an hour and half but won't believe my answer so why keep asking me. I've asked you to leave it and wait till tomorrow but you won't. I don't know what else to say to you now so can you just stop asking.
I know I shouldn't snap, I know she thinks its only her first time of asking and cant make sense of it, I know its no good trying reasoning but I still did it anyway and then I felt bad about it. I did say sorry for snapping and getting annoyed but mum just sat quiet and sulky for about ten minutes. I tried a few times to talk to her about something else but she just ignored me. Then it was time for hubby and I to leave to go to inlaws and I was a bit worried about leaving her upset and or annoyed but luckily by the time we'd been to loo, got boots and coats on etc mum was answering me again and we hugged and said bye and she asked if I was coming tomorrow and I said yes.
I wasn't sure who she thought I was when we left so I rang her from car at in laws saying Hello mum its Andie, I told her where I was and that I'd see her tomorrow and she said ok see you tomorrow and we both said love you lots and bye. I was on tenterhooks at in laws in case she rang me. as she has done each time I've been since I started going again a few week ago, but she didn't so I'm hoping that means she settled down after we left and was ok. 🤞
I totally understand how you feel, with the same thing being asked over and over. I’ve mentioned before that the doctors tell me to go into another room, or just not get into the conversation, but I haven’t been able to find a solution like that. We only have a two bedroom flat, there‘s not many places to hide! And like you, I hate seeing him upset, so try my best to be patient. I went through a phase where I couldn’t avoid snapping, and shouting at him, mainly out of frustration, but now I am trying hard to avoid confrontation. He told me his wife used to shout, so this new woman is trying to be calmer. Yesterday was very difficult and I did get cross, but went into the kitchen and left him to it for a while. Hope today is better.
 

Bikerbeth

Registered User
Feb 11, 2019
1,319
Bedford
I really feel for you both @annielou and @Vitesse as the repeated questions seem relentless. I now feel fortunate that Mum will ask the same questions perhaps only 4 or 5 times a day depending on what she is worrying about so I do get a ‘change of subject’. You are both doing so well.
@annielou i hope you have a relaxed shopping trip today
 

annielou

Registered User
Sep 27, 2019
1,308
Yorkshire
Thanks @Vitesse @Bikerbeth xx
I sometimes hide in the bathroom for a bit but often mum will follow me or just talk to me through door and I don't like to leave her on her own for too long when she's upset either. Its so hard isn't it. Being constantly told his wife has died when its you must be so hard x Mum often thinks I've just upped and left, abandoned her in favour of my new boyfriend, or sometimes she worries something has happened to me because I wouldn't just not come see her, but I am still alive to her so far.
I've not been me since half twelve today when we got to my house after supermarket. Although I can't say for certain I was me when we were at hers or at supermarket before then, but she didn't say otherwise and seemed to know me then. When we pulled up at mine she said this is our Andies house. That started ten minutes of who we were and why we were here and who's house it was. She was calmer about it though, unlike a month ago when she would demand to be taken home and get really aggressive over it.
She did look quite scared when she was sat in room while we put shopping away and then she fiddled with her lunch for a few minutes before saying she couldnt eat it. She wouldnt or couldnt say why, she didnt seem to want to tell me why, then she sat staring out of window for a while and seemed to not want to talk to me. I assume she was confused about who we were and why at Andies house if I'm not her and she was probably a bit scared and upset too.
After a bit she seemed ok and about an hour after the failed lunch had a cup of tea and slice of cake but she still wasnt sure who I was and hasn't really known who I was all day. She asked about hubby a few times too as she thinks he is 'friends' hubby and cant decide if I am friend or if I am who say I am her daughter then am I now with 'friends' hubby and if so are we married and for how long.
And at one point she said I must have lots of kids, I thought only had two but there's our Andie, sis, you and friend calls me mum sometimes too so she might be one and i'm not sure if theres another one too.
She also didnt know where she lived and was sure she had been living with her mum again and her furniture was still there, or her bed was but the rest was in her house cos she left it there cos her mum had all other stuff, but she thinks she might be dead now and she still had key to mums she didnt know which it was, but had been to her mums and used it but no one was in, she didnt have keys to her house though cos not been there for a while.
About 5 she said I ought to go home but I'll get drenched walking up there.(everywhere is always 'up there' or 'round backs' from wherever she is, my house, her house, friends house) I told her we'd take her back later in car and why didnt she stay for dinner, She stayed for dinner and ate it all and told me thanks 'friend' that was lovely. Then about half six she said same thing about going home but getting drenched going up there so I told her again about us taking her in car later so she sat playing with her keys for a bit but she did watch tv a bit and then hubby came in after loading dishwasher and asked if we wanted a cup of tea and mum said yes and sat back and ended up staying till 8.
While we were getting ready to take her home she wasnt sure if we'd know where to take her home as she only been there a few weeks and so if easier we could take her to her mums. In the car she asked if her stuff was in her house or her mums and then when we got in to hers she said this is my house but I've got another too. She did seem quite calm though and by time we'd put her heating and tv on, then put her shopping away she seemed quite relaxed and just asked if I would see her tomorrow, but she did ask if I wanted her to walk up to mine or if I would be picking her up so I said pick her up. When I rang when we got home she was fine said just about to ring me to check ok and she'd see me tomorrow and night night.
It must be so scary not recognising people and thinking something completely different to whats really happening. Mum tries really hard at times to understand whats happening but its impossible for her to get it and I find that really hard to deal with and I'm sure mum must.
 

Bikerbeth

Registered User
Feb 11, 2019
1,319
Bedford
Another tough day for you with your Mum confused. Not quite the same but Mum did ask me not so long ago how many children she had. I said 2 as far as I knew and did get a bit of a laugh from her.
 

Pete1

Registered User
Jul 16, 2019
779
It must be so scary not recognising people and thinking something completely different to whats really happening.
Hi @annielou, yes it must be extremely frightening, I do feel for your Mum. I found it really difficult to comprehend when my Mum was scared in her own house (which should have been a comfort), but when I put myself in Mum's shoes I could understand her fear - it also made me feel incredibly sad. At the moment your Mum hasn't reached the stage of trying to get 'home' that was the point when I realised my Mum needed 24/7 care as she was no longer safe (and she needed constant reassurance when sundowning). Stay strong.
 

Hazara8

Registered User
Apr 6, 2015
440
Thanks @Vitesse @Bikerbeth xx
I sometimes hide in the bathroom for a bit but often mum will follow me or just talk to me through door and I don't like to leave her on her own for too long when she's upset either. Its so hard isn't it. Being constantly told his wife has died when its you must be so hard x Mum often thinks I've just upped and left, abandoned her in favour of my new boyfriend, or sometimes she worries something has happened to me because I wouldn't just not come see her, but I am still alive to her so far.
I've not been me since half twelve today when we got to my house after supermarket. Although I can't say for certain I was me when we were at hers or at supermarket before then, but she didn't say otherwise and seemed to know me then. When we pulled up at mine she said this is our Andies house. That started ten minutes of who we were and why we were here and who's house it was. She was calmer about it though, unlike a month ago when she would demand to be taken home and get really aggressive over it.
She did look quite scared when she was sat in room while we put shopping away and then she fiddled with her lunch for a few minutes before saying she couldnt eat it. She wouldnt or couldnt say why, she didnt seem to want to tell me why, then she sat staring out of window for a while and seemed to not want to talk to me. I assume she was confused about who we were and why at Andies house if I'm not her and she was probably a bit scared and upset too.
After a bit she seemed ok and about an hour after the failed lunch had a cup of tea and slice of cake but she still wasnt sure who I was and hasn't really known who I was all day. She asked about hubby a few times too as she thinks he is 'friends' hubby and cant decide if I am friend or if I am who say I am her daughter then am I now with 'friends' hubby and if so are we married and for how long.
And at one point she said I must have lots of kids, I thought only had two but there's our Andie, sis, you and friend calls me mum sometimes too so she might be one and i'm not sure if theres another one too.
She also didnt know where she lived and was sure she had been living with her mum again and her furniture was still there, or her bed was but the rest was in her house cos she left it there cos her mum had all other stuff, but she thinks she might be dead now and she still had key to mums she didnt know which it was, but had been to her mums and used it but no one was in, she didnt have keys to her house though cos not been there for a while.
About 5 she said I ought to go home but I'll get drenched walking up there.(everywhere is always 'up there' or 'round backs' from wherever she is, my house, her house, friends house) I told her we'd take her back later in car and why didnt she stay for dinner, She stayed for dinner and ate it all and told me thanks 'friend' that was lovely. Then about half six she said same thing about going home but getting drenched going up there so I told her again about us taking her in car later so she sat playing with her keys for a bit but she did watch tv a bit and then hubby came in after loading dishwasher and asked if we wanted a cup of tea and mum said yes and sat back and ended up staying till 8.
While we were getting ready to take her home she wasnt sure if we'd know where to take her home as she only been there a few weeks and so if easier we could take her to her mums. In the car she asked if her stuff was in her house or her mums and then when we got in to hers she said this is my house but I've got another too. She did seem quite calm though and by time we'd put her heating and tv on, then put her shopping away she seemed quite relaxed and just asked if I would see her tomorrow, but she did ask if I wanted her to walk up to mine or if I would be picking her up so I said pick her up. When I rang when we got home she was fine said just about to ring me to check ok and she'd see me tomorrow and night night.
It must be so scary not recognising people and thinking something completely different to whats really happening. Mum tries really hard at times to understand whats happening but its impossible for her to get it and I find that really hard to deal with and I'm sure mum must.
A simplistic commandment in the whole dementia debate is NEVER CONTRADICT - however bizarre or obscure might appear the response from the one living with any of the dementias which have damaged the brain/mind in such a way that their
"reality" is as real as yours, despite everything. The 'repetition' is a common trait and an indicator of short term memory being compromised to such an extent that a question posed and answered simply dissipates within often seconds and the same question is thus posed again and again. A dear lady l knew in the Care Home l frequent as a volunteer , would often ask me who she was or what was her real name. That question was once asked 25 times in one session. I answered each question as it was the first. In a domestic situation ( at home) this can be exhausting and frustrating and frankly debilitating when you have numerous other chores to carry out - making or changing beds, preparing meals, shopping, incontinence events , medication hiccups ....etc etc. So this whole relationship with a loved one who is being manipulated by the mischievous nature of dementia, is one of the most demanding areas of care and responsibility that one can imagine. But
"Imagining " is the luxury of specialists , doctors, social workers etc. , unless they have experienced this caring role directly! Even siblings who pay regular visits and who might get a snapshot of that reality, cannot know the full impact of the continuity of care which consumes a 24 hour day and the very vulnerable depths of your heart and mind. So we make that first and very important step. We step into the " reality" of the one afflicted by dementia. If " uncle Jack" died years ago and "mother " asks when is he coming to see her, you go with that " reality" and work with it. I.e. " Uncle Jack is on holiday but is coming next week...". By which time all is forgotten..until the next time, which might be in ten minutes time? None of this is easy and if you are one- to- one, it can be frankly a nightmare. Dementia can present in many forms and Alzheimer's is a very familiar one. But each case is different and there are no pat answers. Comfort, empathy, patience beyond the call of duty, continuous awareness of the fact that behaviour and response, however seemingly antagonistic or aggressive or just plain off the wall - all of this is the lot of a carer and it is an immense challenge. And it will change you in positive ways. It will underline the true meaning of " love", the true meaning of care and the true meaning of life. Later on, when the journey reaches its destination, you will see those changes in yourself. The trick is in maintaining energy and stability as you travel that road and always being aware that the one who LIVES the dementia journey is an innocent in your care and who can never return unlike you, from the one way path which we term dementia. One day, we trust, they will.
 

Vitesse

Registered User
Oct 26, 2016
201
Thanks @Vitesse @Bikerbeth xx
I sometimes hide in the bathroom for a bit but often mum will follow me or just talk to me through door and I don't like to leave her on her own for too long when she's upset either. Its so hard isn't it. Being constantly told his wife has died when its you must be so hard x Mum often thinks I've just upped and left, abandoned her in favour of my new boyfriend, or sometimes she worries something has happened to me because I wouldn't just not come see her, but I am still alive to her so far.
I've not been me since half twelve today when we got to my house after supermarket. Although I can't say for certain I was me when we were at hers or at supermarket before then, but she didn't say otherwise and seemed to know me then. When we pulled up at mine she said this is our Andies house. That started ten minutes of who we were and why we were here and who's house it was. She was calmer about it though, unlike a month ago when she would demand to be taken home and get really aggressive over it.
She did look quite scared when she was sat in room while we put shopping away and then she fiddled with her lunch for a few minutes before saying she couldnt eat it. She wouldnt or couldnt say why, she didnt seem to want to tell me why, then she sat staring out of window for a while and seemed to not want to talk to me. I assume she was confused about who we were and why at Andies house if I'm not her and she was probably a bit scared and upset too.
After a bit she seemed ok and about an hour after the failed lunch had a cup of tea and slice of cake but she still wasnt sure who I was and hasn't really known who I was all day. She asked about hubby a few times too as she thinks he is 'friends' hubby and cant decide if I am friend or if I am who say I am her daughter then am I now with 'friends' hubby and if so are we married and for how long.
And at one point she said I must have lots of kids, I thought only had two but there's our Andie, sis, you and friend calls me mum sometimes too so she might be one and i'm not sure if theres another one too.
She also didnt know where she lived and was sure she had been living with her mum again and her furniture was still there, or her bed was but the rest was in her house cos she left it there cos her mum had all other stuff, but she thinks she might be dead now and she still had key to mums she didnt know which it was, but had been to her mums and used it but no one was in, she didnt have keys to her house though cos not been there for a while.
About 5 she said I ought to go home but I'll get drenched walking up there.(everywhere is always 'up there' or 'round backs' from wherever she is, my house, her house, friends house) I told her we'd take her back later in car and why didnt she stay for dinner, She stayed for dinner and ate it all and told me thanks 'friend' that was lovely. Then about half six she said same thing about going home but getting drenched going up there so I told her again about us taking her in car later so she sat playing with her keys for a bit but she did watch tv a bit and then hubby came in after loading dishwasher and asked if we wanted a cup of tea and mum said yes and sat back and ended up staying till 8.
While we were getting ready to take her home she wasnt sure if we'd know where to take her home as she only been there a few weeks and so if easier we could take her to her mums. In the car she asked if her stuff was in her house or her mums and then when we got in to hers she said this is my house but I've got another too. She did seem quite calm though and by time we'd put her heating and tv on, then put her shopping away she seemed quite relaxed and just asked if I would see her tomorrow, but she did ask if I wanted her to walk up to mine or if I would be picking her up so I said pick her up. When I rang when we got home she was fine said just about to ring me to check ok and she'd see me tomorrow and night night.
It must be so scary not recognising people and thinking something completely different to whats really happening. Mum tries really hard at times to understand whats happening but its impossible for her to get it and I find that really hard to deal with and I'm sure mum must.
I just want to say that you and your husband are marvellous! So many people would just have given up by now. you both deserve a medal!!!
 

Sarasa

Registered User
Apr 13, 2018
1,420
You are amazing @annielou. I can only manage seeing my mum for an hour or two once a week and she is in a care home. Even when she was at home I only went over twice a week and never stayed that long.
Mum only once didn't recognise her own home and that was after a very stressful day for her when she'd forgotten to eat and drink due to getting so worked up about what had happened (I'd accidently mucked up a supermarket delivery and she had far more stuff that she wanted). I don't know how mobile your mum is, but if she does start going off in search of her old house, I think that is when you need to insist on Social Services putting some respite in place with a view to a permanent placement.
 

White Rose

Registered User
Nov 4, 2018
634
Funny thing happened yesterday evening. My partner of 17 years standing next to me while I was typing on the laptop suddenly said he'd like to get a girlfriend!! Guess I'm just not playing the part properly these days - well I am rather more like his mother than a girlfriend that's for sure.
 

imthedaughter

Registered User
Apr 3, 2019
315
A simplistic commandment in the whole dementia debate is NEVER CONTRADICT - however bizarre or obscure might appear the response from the one living with any of the dementias which have damaged the brain/mind in such a way that their
"reality" is as real as yours, despite everything. The 'repetition' is a common trait and an indicator of short term memory being compromised to such an extent that a question posed and answered simply dissipates within often seconds and the same question is thus posed again and again. A dear lady l knew in the Care Home l frequent as a volunteer , would often ask me who she was or what was her real name. That question was once asked 25 times in one session. I answered each question as it was the first. In a domestic situation ( at home) this can be exhausting and frustrating and frankly debilitating when you have numerous other chores to carry out - making or changing beds, preparing meals, shopping, incontinence events , medication hiccups ....etc etc. So this whole relationship with a loved one who is being manipulated by the mischievous nature of dementia, is one of the most demanding areas of care and responsibility that one can imagine. But
"Imagining " is the luxury of specialists , doctors, social workers etc. , unless they have experienced this caring role directly! Even siblings who pay regular visits and who might get a snapshot of that reality, cannot know the full impact of the continuity of care which consumes a 24 hour day and the very vulnerable depths of your heart and mind. So we make that first and very important step. We step into the " reality" of the one afflicted by dementia. If " uncle Jack" died years ago and "mother " asks when is he coming to see her, you go with that " reality" and work with it. I.e. " Uncle Jack is on holiday but is coming next week...". By which time all is forgotten..until the next time, which might be in ten minutes time? None of this is easy and if you are one- to- one, it can be frankly a nightmare. Dementia can present in many forms and Alzheimer's is a very familiar one. But each case is different and there are no pat answers. Comfort, empathy, patience beyond the call of duty, continuous awareness of the fact that behaviour and response, however seemingly antagonistic or aggressive or just plain off the wall - all of this is the lot of a carer and it is an immense challenge. And it will change you in positive ways. It will underline the true meaning of " love", the true meaning of care and the true meaning of life. Later on, when the journey reaches its destination, you will see those changes in yourself. The trick is in maintaining energy and stability as you travel that road and always being aware that the one who LIVES the dementia journey is an innocent in your care and who can never return unlike you, from the one way path which we term dementia. One day, we trust, they will.
The problem, I have found, with attempting this, is that the confusion and conflation is not constant. Dad will know he has grandchildren one hour, and not the next. So it's hard to know when we can talk about them as he may or may not have them in his reality at the time. I can be sister or daughter, but I won't know which until it's too late. Are hai parents alive or dead at this moment? Dementia sufferers do not reside in another place and time as we are sometimes led to believe by the media, it's always shifting and it's this which I can't always keep up with and I can see @annielou also trying to keep pace with her mum's fluctuations too. I don't even live with dad or see him that often! You could say, ask them about their parents or brother or whatever before you speak but in a home setting it's very difficult to remember this every time.

Anyway - that's just a thought and my experience.

Agree with Annielou it must be horrible to be constantly wondering where you are and who you are with...