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

annielou

Registered User
Sep 27, 2019
679
Yorkshire
In case anyone's interested and hasn't already heard of it, this is the grant I got via our local carer service 'making space'. It is from the carers trust and is a grant up to £300 for carers over 16 for items or activities that will benefit them in their caring role.
 

Bikerbeth

Registered User
Feb 11, 2019
910
Bedford
Pooling the blocks of time does seem like a good idea to give you a bit more space. Talking out of ignorance, as your Mum enjoyed day care would it make financial sense to fund another day there rather than carers coming in. Just another thought - you mentioned a carer coming in before your Mum went to daycare. I know the agency I used (as Mum was self funding) had a 15 minute grace either way in what time a carer could arrive so you may need to factor that in. I also found that they tended to give priority to those clients requiring personal care (understandably) for morning and evening slots. Frustrating though when they were short of staff and would put Mum on a 5.30pm visit to give her a tablet that made her sleepy (and to my mind increased her risk of a fall) even though they were told it was time sensitive medication. Sorry I don’t want make it sound all gloom and doom. Mum lived in an area that was short of carers. The carers she had were 95% fantastic and once accepted she really looked forward to their visits. Sorry I think I have gone a bit off track there.
 

annielou

Registered User
Sep 27, 2019
679
Yorkshire
Thanks @Bikerbeth x
That's really useful to know. I did wonder about the half hour before day centre visit, if carer was late, which obviously can happen, they may not get to mum before she left for day centre. Also they may not have anyone available at that time as like you say they are probably busy in a morning and also the same carer/s may not be available as in the afternoon which we'd prefer mum to have as few people as possible so she gets to know them. If that visit doesn't come off it won't be too bad as it was more an afterthought than the couple of afternoon visits and its only one morning a week.
It would probably be cheaper for mum to go to day centre than have carers at home and if mum does want to do extra days anytime we'll do it, but to be honest I'd prefer a couple of afternoon off where I can come home and stay home.
Its a bit of a faff on day centre day at moment, hubby drops me off at mums about 1/4 past 7 on his way to work, he has to set off 1/2 an hour earlier than normal to get to work on time. I give mum her tablets, check she's ready and make sure she locks up when leaves. When mum leaves on bus at 8.30 for day centre I go home on two buses which takes an hour getting home around 9.30. I have till about 2 at home and then I get 2 buses back to mums for when she's dropped off by bus around 3, hubby comes to mums after work about 6 and we have dinner together, either I cook or hubby brings in take away, then we leave to come home between 7 and 8 mainly nearer to 8.
Mum gets community transport bus to day centre but by the sound of it they only do certain areas on certain days so if mum went other days we'd have to arrange our own transport there and back. As I don't drive that would mean another day of hubby leaving early and dropping me at mums on his way to work, then me taking mum to day centre in a taxi before I went home either in the taxi, or a walk into town and then on a bus to mine and then I'd have to go back out again in afternoon to pick her up and stay at mums till evening, make dinner etc.
I don't mind doing that once a week and if mum prefers day centre to at home carer then I will do it more, but I'd really prefer a couple of afternoons off where I can go to mums in morning like I do now on non day centre days, but then come home in the afternoon and stay home while someone else stays with her in the afternoon and does her dinner, rather than have to go there and back twice in a day. Its 2 buses to mums from my house and takes an hour and I don't really want to be doing that too many more times a week as I lose quite a bit of time travelling.
I miss having dinner just me and hubby and eating things we like rather than always the same few things mum will eat. It might make trying to get jobs around house done easier too when I'm not clock watching ready to go back to mums and I might not feel as shattered in the evenings as by time we get in and settled its often 1/2 past 8 to 9 o'clock and then we feel like there's been no time to relax before bed. To have a couple of days I can be in my house before that time and hubby and I can eat the things we like would mean a lot to us.
Another reason I wonder if time with carer on an afternoon might be better than a morning/early afternoon out is because mum sundowns and tends to get more mixed up as the day wears on, she's usually has lost who I am by mid afternoon, some days like this week its even earlier, but as the day wears on she often gets more confused and anxious about it. I find it exhausting trying to keep track of who she thinks I am and what she's wanting to know, or what she thinks has happened with the statements she makes and questions she asks and its hard trying to think of the best way to react.
I think it can be quite upsetting for mum me being there when she's confused as sometimes she's aware that she has mixed me or something she has said up and then she asks more questions to try make sense of it, but she can't and she often gets more upset about it, especially the fact she didn't know I was her daughter. I might be wrong but I think maybe if a carer was there they might find it easier to distract her and she wouldn't be looking at me as a reminder that she should know me, or that she's got something wrong. Maybe she may not realise or it wouldn't matter as much so she may not get as upset about it.
Quite often around dinner time she will start talking about why hasn't our Andie been to see her or say that Our Andie said she was coming but hasn't. If I say she has she often doesn't believe me as she thinks I'm 'friend' and she has seen me all day so will say no you've been here all day haven't you you're not our Andie, but maybe if it was carer with her when she thought that and carer said I had been there then mum might just believe that and stop worrying as she would be looking at a different person than who was there earlier. When sis has been with her on an evening after I went home and she's said that to mum she has usually accepted it and not got upset or anxious and agitated about it.
I'd still be with her most afternoon/evenings but at least we'd both get a couple of afternoons without it hopefully. Or at least I'm hoping it works like that and mum is ok X
 
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Bikerbeth

Registered User
Feb 11, 2019
910
Bedford
Sorry @annielou i was thinking day centre would give you more time. However as you say if you have a carer several afternoons then you would be able to go home and stay home and also have some time just you and hubby.
I had forgotten about the time it takes on the 2 buses as well. It sounds like you have a good plan and I hope the care agency can make it work for you to give you that break.
 

Woo2

Registered User
Apr 30, 2019
1,054
South East
I get that completely , the day centre is much better value for money but I need to have someone that can be here to look after mum if I need them . We have lost contact with friends as we can longer go out and socialise and have friends round here . It’s hard . At least with paying for carer we are going to have the same lady so she can build up relationship with mum & us. It must be so much harder for you having to rely on buses, that takes a big chunk out of your precious time . Xx
 

Woo2

Registered User
Apr 30, 2019
1,054
South East
It was a good point @Bikerbeth , I do have mum go two days a week but lucky that I live quite central and have a car. There is no perfect answer , every option has its difficulties and just have to balance the compromises . Life eh ! Xx
 

annielou

Registered User
Sep 27, 2019
679
Yorkshire
Thanks @Bikerbeth @Woohoo xx
It was a really good suggestion X It would give me more time and cost less but it's just not at time of day I think I'll get most benefit from. She'll still go on wednesday and if she ever says wants to go more days then I'd arrange it as its her money and I want to do what makes her happiest.
At moment I leave home about 9 and get to mums about 10, but on day centre days hubby and I leave at 7 which means hubby leaves over half hour earlier than usual so its saves me an hour bus ride which at that time would be even longer as there's less buses before 8. Although I have longer away from mum when she's at day centre 2 hrs of it is spent travelling and by time hubby and I get home about 8.30 to 9 we're shattered. If we have carer come in I'm hoping to leave mums about 2 which would mean I'd be home about 3, I can have a few hours before dinner time, hubby can go to work at normal time and cut a good 1/4 an hour off his drive from work to our house instead of mums, we can have a dinner we like and then we're already at home well before 8.30/9pm.
It would be cheaper too at day centre as it's just short of £40 plus a few pounds for lunch and then there'd be about £6 for taxi each way, not including my travelling time I get about 4 and 1/2 hours for that where as a carer will be £20 an hour so for a similar time it will be more expensive. But I'm hoping it's worth it and mum gets on with carer coming ok. Thinking about it if I add in extra 2 hours I set off earlier on a morning when its day centre day it won't be quite as much of a difference.
Mum didn't go to day centre this week as she had diarrhoea and she does get trouble fairly often with it so we could miss a few more days through it as when she's has it she prefers to stay at home. So I stayed at mums with her and didn't get to go back home till evening, if it had happened on a day a carer was coming in afternoon I could have still gone home as mum'd have been at home and she's usually settled down by the afternoon with it so I'll be less likely to miss my time off.
I don't know if its right thing to do or if it will help any of us but I'm hoping so as I'm really struggling with being there all day every day into the evening and hubby is struggling with every evening too. I feel bad for thinking and saying it but hubby and I want a bit more time together without mum.
Mum being 2 bus rides away is a pain, I should have learnt to drive years ago when I was going to, I have never wished I could drive as much as I do now.
 

canary

Registered User
Feb 25, 2014
11,602
South coast
I actually think thats a good plan @annielou . Yes, its more expensive, but it gives more benefit IMO. Dont feel bad for saying that you and hubby need more time - arrangements have to fit in with everyone not just the person with dementia
 

anxious annie

Registered User
Jan 2, 2019
252
Hi Annielou.
I'm just catching up on reading a few threads. I hope you manage to get carers sorted for a couple of afternoons for your mum so that you and your husband can spend some time together at home. As Canary says it needs fit in with you too, not just your mum's needs, although I know that you are rightly trying to do what's best for her.
 

Woo2

Registered User
Apr 30, 2019
1,054
South East
Absolutely you should not feel bad about saying that @annielou , you and hubby are just as important and need your time together . It doesn’t matter what anyone thinks, you need to do what’s best for you . We had carer this morning , she was lovely and bubbly and just came in and sat down and started chatting to mum . All good . Hope you get on the same . Xx
 

Woo2

Registered User
Apr 30, 2019
1,054
South East
Thank you , I hope the same for you , if the day centre is anything to go by it will be fine and we worried needlessly . Hope your weekend is good . Xx
 

Bikerbeth

Registered User
Feb 11, 2019
910
Bedford
Glad to hear your carer worked out well today @Woohoo . I think you are right sometimes we worry to much.
@annielou I totally agree what the others have said you should not feel bad wanting time just for you and hubby. I hope you have had a reasonable day today
 

annielou

Registered User
Sep 27, 2019
679
Yorkshire
I am constantly surprised and amazed by how alzheimers affects mums thinking and memories and how strong some false memories can be.
This morning mum and I were looking at paint samples and a rug she bought a few week ago as mum wants me to redecorate her living room. The tester pot colours mum had picked didn't go as well with the new rug as mum thought so she said' well I didn't buy it for here originally I bought it for ....road (the house we lived in when her and dad split up 29 years ago and she hadn't lived in for about 23 years) but then I came back here so thought I could use it here but it doesn't really go'.
She started on with her tale of how she had split from dad about 13 years ago and she'd took on this house and furnished it but then dad had asked her to go back to him and she had, she wasn't sure when that was but more or less straight away, a long time since anyway(they never got back together). Her and me had been living with dad ever since up until 4/5/6 weeks ago (it varied during chat) when she'd decided she couldn't live with him anymore, she doesn't know why, thinks he was annoying her. She didn't know what I had done as I couldn't live with her in this house as its only one bedroom and when she'd told me she was going back there I'd got upset and said what about me? She didn't know where I had gone but I was courting my hubby so she thinks I had probably gone to stay with him (I've been married and we've had our own house for 27 years).
This house she lives in now had been left with her furniture she'd bought in it for all those years we'd been back with dad with no one paying rent on it or anything, which she thought sounded odd but must be true because she knows she hadn't paid any.
While we were living with dad at ... road, dad was working at the pit (he did work at pit for many years but had been made redundant and was working for himself when they split up,) I worked at the job I had from 17-30. Mum didn't work while living with dad but thought that when she had left dad and got this house 13 years ago she had been working (at the job she'd got when they did actually split up) because she could remember going to work from there but thinks she stopped when went back to dad (she'd never worked while living in this house as she'd been made redundant from another job before she moved in and had retired a few months after). My dad had died after she'd come back to this house though she didn't know exactly when or how (he died over 4 years ago).
Now she was back living in this house she needed to let council know she was living here again and sort out a tv licence, rent etc and get her and dads furniture out of his house because now he's died it was just sitting in ... road house (dad moved out when they split up, mum had stayed there along with me and sis for a while and then she'd lived there alone a few years before moving somewhere else, mum had kept most of their furniture when they had split up and taken it with her when she moved and over the 29 years has replaced most of it, dad didn't live there when he died either he had been living with someone else for about 24 years in a completely different house when he died and so the furniture he had was theirs not mums)
When she thought something didn't sound right she would say it doesn't seem right but it must be, but I'll ask our Andie she'll know.
I sort of understand that she may forget about her and dad splitting up, me moving out, mix up jobs and times etc and remember old memories as if they are new ones or mix different memories together but the whole her going back to dad, me being upset and saying what about me? when she left him again has never happened and doesn't bare any resemblance to anything that did, yet she often says it with such belief it is true. There are holes in her story a mile wide and lots of contradictions but she doesn't notice them and even if she does she's so convinced she's right its amazing.
Its been a weird day again where I've flitted between being a friend called Andrea but not her daughter Andrea this morning, then after lunch I was the 'friend' I often am, along with being myself a few times too, sometimes both at the same time.
This evening while I washing up mum said something to hubby about wondering where our Andie was so hubby said she's in the kitchen washing up. Mum said No thats not our Andie thats your missus. Yep thats Andie yer daughter who I am married to. Mum said No you're married to 'friend' Hubby realised she'd got me mixed up again so shut up and then mum got her address book out and said she was looking for our Andie.
When I came back into the room mum took phone and address book into kitchen, hubby told me what had just been said so when she rang my mobile I just went along with things. She asked me if I would take her to supermarket tomorrow and so I just said yes we'll come for you in morning, then she asked and can I come to yours after, so I said yes course you can, so she said thank you love, then we said night and love you lots like we normally do and after she hung she came back into room and didn't say anything just started talking about tv like normal.
When hubby and I left tonight mum said I might not see you tomorrow 'friend', so I just said ok and acted like things were normal and when I said bye I just said I'll ring you in the morning rather than see you tomorrow. She seemed ok about things when we left and waved us off ok and didn't ring while we were at inlaws with any questions.
Hubby can't get over how she can go into another room and talk to me on phone and not realise its me sat in the room. It is almost a funny situation to think about us both on phone a room away from each other , but its also very sad and I think its so cruel that her brain does this to her. The look on her face when she is confused and worrying about things and trying to work things out is so heartbreaking to see.
 
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Woo2

Registered User
Apr 30, 2019
1,054
South East
The brain is amazing isn’t it , I find it remarkable how it alters memories and makes new ones when it can’t remember , not always good but still it is amazing . I’m glad after the confusion you could go home feeling relatively comfortable . Hoping for an ok weekend for you . Mum is in a huff and puff mood again today so it’s going to be a loooong day . Xx
 

Bikerbeth

Registered User
Feb 11, 2019
910
Bedford
You are so right @annielou. The false memories can be so convincing especially to outsiders. On a smaller scale Mum had told CH staff that she had hand made the dress she was wearing and her duvet covers despite them having branded tags in. She was adamant that she had made them with her Mum.
I think you do so well coping with the mix up between friend and daughter. Although it is easy to rationalise logically (its the illness) I think it must still hurt
Hugs to you
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
152
I am constantly surprised and amazed by how alzheimers affects mums thinking and memories and how strong some false memories can be.
This morning mum and I were looking at paint samples and a rug she bought a few week ago as mum wants me to redecorate her living room. The tester pot colours mum had picked didn't go as well with the new rug as mum thought so she said' well I didn't buy it for here originally I bought it for ....road (the house we lived in when her and dad split up 29 years ago and she hadn't lived in for about 23 years) but then I came back here so thought I could use it here but it doesn't really go'.
She started on with her tale of how she had split from dad about 13 years ago and she'd took on this house and furnished it but then dad had asked her to go back to him and she had, she wasn't sure when that was but more or less straight away, a long time since anyway(they never got back together). Her and me had been living with dad ever since up until 4/5/6 weeks ago (it varied during chat) when she'd decided she couldn't live with him anymore, she doesn't know why, thinks he was annoying her. She didn't know what I had done as I couldn't live with her in this house as its only one bedroom and when she'd told me she was going back there I'd got upset and said what about me? She didn't know where I had gone but I was courting my hubby so she thinks I had probably gone to stay with him (I've been married and we've had our own house for 27 years).
This house she lives in now had been left with her furniture she'd bought in it for all those years we'd been back with dad with no one paying rent on it or anything, which she thought sounded odd but must be true because she knows she hadn't paid any.
While we were living with dad at ... road, dad was working at the pit (he did work at pit for many years but had been made redundant and was working for himself when they split up,) I worked at the job I had from 17-30. Mum didn't work while living with dad but thought that when she had left dad and got this house 13 years ago she had been working (at the job she'd got when they did actually split up) because she could remember going to work from there but thinks she stopped when went back to dad (she'd never worked while living in this house as she'd been made redundant from another job before she moved in and had retired a few months after). My dad had died after she'd come back to this house though she didn't know exactly when or how (he died over 4 years ago).
Now she was back living in this house she needed to let council know she was living here again and sort out a tv licence, rent etc and get her and dads furniture out of his house because now he's died it was just sitting in ... road house (dad moved out when they split up, mum had stayed there along with me and sis for a while and then she'd lived there alone a few years before moving somewhere else, mum had kept most of their furniture when they had split up and taken it with her when she moved and over the 29 years has replaced most of it, dad didn't live there when he died either he had been living with someone else for about 24 years in a completely different house when he died and so the furniture he had was theirs not mums)
When she thought something didn't sound right she would say it doesn't seem right but it must be, but I'll ask our Andie she'll know.
I sort of understand that she may forget about her and dad splitting up, me moving out, mix up jobs and times etc and remember old memories as if they are new ones or mix different memories together but the whole her going back to dad, me being upset and saying what about me? when she left him again has never happened and doesn't bare any resemblance to anything that did, yet she often says it with such belief it is true. There are holes in her story a mile wide and lots of contradictions but she doesn't notice them and even if she does she's so convinced she's right its amazing.
Its been a weird day again where I've flitted between being a friend called Andrea but not her daughter Andrea this morning, then after lunch I was the 'friend' I often am, along with being myself a few times too, sometimes both at the same time.
This evening while I washing up mum said something to hubby about wondering where our Andie was so hubby said she's in the kitchen washing up. Mum said No thats not our Andie thats your missus. Yep thats Andie yer daughter who I am married to. Mum said No you're married to 'friend' Hubby realised she'd got me mixed up again so shut up and then mum got her address book out and said she was looking for our Andie.
When I came back into the room mum took phone and address book into kitchen, hubby told me what had just been said so when she rang my mobile I just went along with things. She asked me if I would take her to supermarket tomorrow and so I just said yes we'll come for you in morning, then she asked and can I come to yours after, so I said yes course you can, so she said thank you love, then we said night and love you lots like we normally do and after she hung she came back into room and didn't say anything just started talking about tv like normal.
When hubby and I left tonight mum said I might not see you tomorrow 'friend', so I just said ok and acted like things were normal and when I said bye I just said I'll ring you in the morning rather than see you tomorrow. She seemed ok about things when we left and waved us off ok and didn't ring while we were at inlaws with any questions.
Hubby can't get over how she can go into another room and talk to me on phone and not realise its me sat in the room. It is almost a funny situation to think about us both on phone a room away from each other , but its also very sad and I think its so cruel that her brain does this to her. The look on her face when she is confused and worrying about things and trying to work things out is so heartbreaking to see.
@annielou, my mum told me recently that she isn't married to my dad, he just lives with her because she was actually married to his brother who had turned out to be gay!! Sometimes she accuses my dad if being gay and having his boyfriend staying in the back bedroom. All complete rubbish, no idea where it comes from but it's very upsetting for my dad, they have been married almost 59 yrs. Alzheimer's is such a cruel disease not only robbing people of their memories but creating false and upsetting ones. You're doing such an amazing job looking after your mum, I know I would never have that degree of patience with mine.
 

annielou

Registered User
Sep 27, 2019
679
Yorkshire
Thanks for your replies xxx
@Woohoo I think calling me from other room made things a bit easier yesterday when it came to us leaving as I think that mum felt reassured I would come next day and comfortable in what she was thinking and it was quite easy for me to go along with it that time, which it isn't always.
I hope your mums huff and puff mood doesn't last and you have a better day than expected. Its very hard when they're in one of those moods and often you never find out why, I think often they don't know themselves much of the time. Great description of it by the way 'huff and puff mood' Wishing you lots of luck for a good day 🤞

@Bikerbeth aww bless your mum, did she used to make things with her mum when young or is it a complete wrong memory? I'm always a bit embarrassed on mums behalf when she says something to someone that's obviously mixed up, though hopefully care home staff will be used to it but its still an odd feeling isnt it knowing they are saying something that is wrong. I think instinct is to tell them so and correct them which is hard not to do.
Mum took a parcel in for next door yesterday and later took it round. After she came back she said I told her I was back here now and she said oh lovely, I told her 'dads name' had died but I dint say owt about leaving him first or anything cos well she dunt need to know all that does she!':oops:
I couldn't actually hear the conversation so not sure exactly what was said but who knows what mums neighbour must have thought. She moved in a few years after mum had and they say hello and odd thing when passing but have never been close so she doesn't know a lot about mum, but will know that she has never left there. I don't know if she'd realise mum was talking about dad and remember that he died years ago as I'm sure she probably did know that, but it sounds like she didn't let on to mum that she was saying anything odd.
Mums neighbours don't know she has alzheimers but I think are aware she has been having problems as a couple of them mentioned to me they'd noticed a couple of things when I bumped into them last year.

@CardiffGirlInEssex That must be awful for you, and your dad especially, its very hurtful even though you know its disease not her real feelings thats causing her to say it but it is hard to seperate the feelings.
Not in the same league but my sister hates the fact that the 'friend' mum thinks I am most of the time is actually an old friend out of a couple her and dad were close friends with when we were growing up and the bit that bothers sis is 'friend' was involved in mum and dad splitting up.
She had often mentioned that she fancied my dad over the years and then they were seen out driving and parked up together a few times by different people, friends, family and mum on one occasion which they never mentioned that they had been and then dads mobile phone bill had lots of calls to friend that they both wouldn't explain either when asked. None of us have spoke to friend since mum and dad split up 29 years ago.
Sis will say of all the bl@@@y people to mix you up with it has to be her! We used to call her the 'poison dwarf' as she looked a bit like an older version of Lucy Ewing on Dallas and that was her nickname. So sometimes to make a joke out of it sis will say' have you been poison dwarf again today?' though to be honest she doesn't really find it funny.
 

Bikerbeth

Registered User
Feb 11, 2019
910
Bedford
Hi @annielou how has your day been? Mum was in fact a very good dress maker including wedding dresses etc so not a totally false memory. She packed up any real sewing about 20 years ago because she had arthritis in some of her fingers. It is sad though as we will go into clothes shops now and Mum will say it could look really nice if I just alter it ‘ by doing this or that’. Since being in the CH she did say she would be content back in her bungalow doing her sewing and knitting like she did last year- unfortunately I just thought ‘only in your dreams’ :(
I know what you mean about being a bit embarrassed on their behalf but only have I come across one person who was unkind.
Hope your day was not too long @Woohoo
 

Woo2

Registered User
Apr 30, 2019
1,054
South East
Hi, thanks both, the huff and puff mood didn’t last too long , she got up and an hour and a half later went back to bed for a couple of hours and woke up happier , just going to bed now . It hasn’t been too bad a day, weekends hubby around and we are doing jobs so not stuck sitting around so much . I have never been so inactive and I am piling on weight sitting around and eating cake ! :rolleyes:. How have your day’s been @Bikerbeth @annielou ? X