• We're currently experiencing technical issues with our newsletter software, so our Dementia Talking Point monthly updates have been put on hold for now. We hope to restart the newsletter soon.

    Find out more >here<.

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

Woo2

Registered User
Apr 30, 2019
2,653
South East
I agree with @Bikerbeth , wishing I could do it say something constructive ,you should be able to let SS know the development and they can step in before it happens , I feel though that they will do very little . I would email her though as you then have it down on paper . I’m sending more hugs and hoping you manage to at least get some rest 🤗 🤗 X
 

Pete1

Registered User
Jul 16, 2019
866
Hi @annielou, I'm so sorry to hear the latest developments - I know only too well what you are going through I went through exactly the same with Mum (deceased parent, not recognising surroundings, believing someone else is coming back to their house). As I mentioned before, I managed to understand eventually her concern when sun-downing was the 'home owner' coming back, I found saying I knew 'them' and they had asked for Mum to stay there and look after the place.....it worked for a while but eventually Mum started to try to get 'home' (she was extremely frail and on a walking frame at that time) - thankfully you have the door sensors so you will be made aware.

It does really affect your sleep, in fact it is impossible to have a proper nights sleep. You are now locked into that cycle that drains you of everything. I know you are doing absolutely everything for Mum and this phase is absolutely soul-destroying to go through, just don't forget your own health and wellbeing matters too.

I know you don't want to, but I do think you should explain to SS and MC the strain you are under and the awful anxiety that Mum is experiencing - you have details of the numerous calls now, and that is something that is happening every day (give them the log). The frequency of call is important but also the fact that Mum is very upset (not just confused) and frightened. It does feel as though things have moved on a stage further. I hope you can get the support that is required.
 

Sarasa

Registered User
Apr 13, 2018
1,696
@annielou, I hope you and your husband managed to get some sleep. I only had one occasion when mum was convinced she wasn't at home and phoned through the night threatening to get a taxi elsewhere. That was caused in part by her being really upset by something she thought my brother had done (he hadn't) which caused her not to eat and drink properly that day. I certainly felt that shaky feeling, and it didn't help that the next day mum had forgotten all about it and was bright and breezy when my brother called round to sort the thongs out she thought he'd done. If your mum hadn't had you and the carer there yesterday I would say try checking that she is drinking enough specially if it's as hot up there as it here in London. However although being hydrated might dial her upset back a little it wouldn't be a cure.
As @Pete1 says you do need to go back to social services and explain what's happening. {{{hugs}}}
 

annielou

Registered User
Sep 27, 2019
1,638
Yorkshire
Thanks for the replies and support @Bikerbeth @Woo2 @Pete1 @Sarasa xxxx
Mum has thought she is in wrong house a few times before on an evening, thinking it's her other house, she's thought she was at her mums house and was waiting for her to come home from holiday once a few weeks ago which I have told MC about and my sister put it on form for referral and told SW but not last two nights where she's been talking about going home and where she is not being her home.Both said if she did start going out they would step in and get involved. MC hope memantine may help settle her anxiety more and calm her down, I hope so. I'll tell MC about it when next talk to them and emailing SW to keep her up to date is a good idea, I'll tell my sister as she has her email details. Though I have a feeling they'll say can't do anything at moment. SW said on her report they will review after 6 weeks and she told us to keep a log of anything mum did that we thought might show was unsafe. Although our word over things mum has said and not done didn't seem to be enough evidence for them.
Its really scary and any positive feelings I was trying to have over mum being less aggressive and calmer last week have worn off.
Mum doesn't drink a lot she mainly has tea. I give her water with her tablets which she occasionally drinks rest of but mainly just has a bit with each set of tablets. She has a couple of cups of tea in morning, one with lunch, one in afternoon, either half glass of pop or cup with her dinner, and then one on evening. That's usually it. I get a glass of water as soon as I arrive and always have a glass near me as I drink it on and off throughout the day and try to encourage mum to drink some too but she never really has drunk much besides tea. I get a headache and feel woolly headed in the afternoon if I can't drink water and often told mum over the years when she's had a headache in afternoon not drinking enough water could be reason but she never listened before alzheimers and doesn't now. So it could be part of her problem.
Hubby and I are both shattered today as neither slept well and we had to be up a bit earlier today as hubby had early follow up call from DRs about the omneprazole they prescribed him for his gastric pains and I need to go over to mums half hour early today as OT is coming to do her road awareness test which I'm nervous about how mum will react to and how she'll be with me afterwards.
Mum'll have forgot he's coming when I tell her this morning, but may remember it vaguely when I say told her before. I dropped it into conversation on Wednesday. When I was giving mum her sertraline in morning she said I have to take these till I die you know. I said Oh that reminds me I've got to weigh you today mum for MC, they're doing a little review cos you've been on their books for about 9 months now, so they want to check you're doing ok. They want to check your weight and they'll probably look at tablets you're on and see if want to change anything and a mans coming on friday an OT to check your mobility how you get about. Mum said Oh right, well I can get about fine. I said Yeah you're ok so that'll be fine, he'll probably just want you walk around a bit check you're moving ok and you are so you'll be fine with that. She was fine with it then but what she'll be like today I don't know. I thought I'd plant little seed about him coming and about them looking at her tablet so when I tell her today I can say I told you other day and when start memantine I have reason they've added extra one cos they were reviewing her. I just hope he doesn't ask many questions I have to contradict her on and she doesn't go off on angry rant when he tries take her out for walk or at me after he's gone. 🤞
 

Starting on a journey

Registered User
Jul 9, 2019
410
Good luck for today!!
You never know mum might respond better to a man?
My mum drinks about what your mum drinks but occasionally has an extra glass of squash (usually when I have just used the last). Maybe it’s to reduce toilet trips?
Again hope all goes well today
 

notsogooddtr

Registered User
Jul 2, 2011
941
I feel for you,your anxiety levels must be off the scale.Unfortunately SS won't really factor in your issues,it will be mainly about your Mum.When my parents were still at home and 'managing'I was in a constant state of 'fight or flight',not sleeping well,always trying to fire fight and sort out their problems.Looking back I was like the boy with his finger in the dyke!In the end I told SW that I was going to take parents to A&E and leave them there,that resulted in a full care package being set up.At least I knew that someone would be going in to them 4 times a day but there were still many hours during the day and night for things to go wrong.And they did!Looking back I wish I had stepped back and forced SS to see that my parents weren't managing,I was trying to manage for them.Both my parents are now dead,both ended up in full time care.I have never really recovered,I used to be a fairly optimistic and confident person,I am the opposite now.You are a young woman and your life is important and so is your husband's.I hope you get the help you need and deserve soon
 

Sarasa

Registered User
Apr 13, 2018
1,696
Hope the OT visit goes well/is going well. If possible don't say too much about it before he arrives. When someone from OT came to see mum I told her about 30 minutes before hand and that was enough time for her to get cross, tell me she was going out and wouldn't see them etc. etc. In the end she was charming to them, and thought she'd proved how fine she was (she hadn't). The OT may well be able to help suggest things on the home that will make life easier, though it sounds as though your mum's bungalow is pretty well set up already.
As for drinking, I drink a lot though I'm trying to cut back on my caffeinated tea drinking to see if it helps me sleep better. My husband is a bit of a lizard loves this really hot weather and has to force himself to drink. Just as lockdown started he had a couple of incidents of nearly collapsing which we put down to him doing a lot of exercise and not being properly hydrated. In one incident we were on a walk and he felt really faint. Someone in a cafe that was just shutting up for the duration gave him a drink for free as they'd cashed up. It helped him no end and we got home. We finally got to pay them back last month.
 

Woo2

Registered User
Apr 30, 2019
2,653
South East
Can you stand behind mum so you can nod or shake your head to his questions ? Hope it goes ok 🤞 I always blame dr for anything and everything , he ordered this that and whatever , he added /changed tablet .Hope new tablets are working well for Hubby’s pains . Can imagine you are shattered , hope tonight you can get some rest . Take care🤗
 

annielou

Registered User
Sep 27, 2019
1,638
Yorkshire
Thanks for all replies.xxxx
Mum was ok when said I was on way this morning and OT coming.No mention of last night. She was surprised when I mentioned OT was a man so not sure if I told her that when mentioned it on Wednesday or not, but it could be that she was thinking bout. could be anything with mum.
OT came and as usual mum was fine at first saying she is ok and everything is ok, does everything herself all was well, but once I answered questions he asked me mum went off on one saying I was lying , not her daughter, I don't do anything and I like to make out she’s mental so she wasn’t going to be my friend anymore and I could go home and not come back.
I tried agreeing with her and tried calm things down a bit and she’d be ok for a bit but soon as he asked me anything again or suggested her having help to do anything she got annoyed again. Denied ever calling me on a night or being confused where she lives and said she’s fine on her own on a night. She’s used to it as her husband was always at pub and she was in on own most nights, she likes it cos if he was in he wanted watch what he liked on tele instead of what she liked.
OT did manage to get her back on side after a while of chatting nonsense so she stopped telling me to go and that I was lying, but she wouldn’t go for a walk with him no matter what we suggested or said so he’s coming back next week. Mum told him she might not be in cos her mums just died this week and it might be funeral then or she might be upset.
She spent most of visit telling him about her mum just dying and her and dad splitting up recently and what he was like. She answered all the questions she thought she knew answers to but if didn’t know she looked to me to answer, or rambled on with an excuse instead.
He suggested carers coming to keep her company during sundowning on evening but mum said no (as expected) cos she’s fine. He asked if I thought if they put them in place would mum accept them so I said maybe but if you ask her she’ll say no. I told him SWs said carers can only come for short visits to do tasks n mum likes hers cos come mainly to keep her company but SW said we can’t keep mums carers if we have theirs. OT was suggesting someone coming to sit with her for reassurance on evening when sundowning at worst and said they can work with SS and sometimes can work round it. He said they can work round her best interests and thinks we need share out the caring with someone without the emotional connection and allow me to have a bit of a life again as its putting a big strain on me he can tell.
Will have to wait and see how next week goes but knowing mum she’ll put him off again next week, she always says she’ll do stuff tomorrow or next time.
 
Last edited:

Woo2

Registered User
Apr 30, 2019
2,653
South East
I’m sorry you had a hard time after answering questions , but glad he managed to pull it back , and offered a glimmer of hope , it’s good as he will have it documented and that all adds up as evidence needed , I wouldn’t worry if she refuses to go with him next week either . I have everything crossed that you can get some more help . Hope the afternoon passes off peacefully and with no problems . You are doing brilliantly in a very difficult situation 🤗 🤗 X
 

annielou

Registered User
Sep 27, 2019
1,638
Yorkshire
Thanks @Woo2 x mum was away in her own Mixed up past and very annoyed at me but she calmed down thankfully, he was good about it all. By some unusual miracle when I came in from seeing OT out and chatting to him a few minutes at door I managed to distract mum from telling me off for talking about her when I came back in room. I ignored her angry face and joked about his ppe and him having to take it off outside on street and she did actually forget to tell me off and laughed about him in his plastic apron.
She still Keeps talking about her mum having just died and she’s fidgety and not very relaxed. Shes warm which isn't helping but wont put her fan on. 🙄🙁 its gonna be a long day and possibly another long evening too. Hey ho Just keep plodding on Andie.
hows your mum today @Woo2 is she tired again after DC again or is she having better day today? I hope you’re doing ok x
 

Sarasa

Registered User
Apr 13, 2018
1,696
I misread that as pipe rather than ppe @annielou and had images of a guy in tweeds with a pipe sticking out of his top pocket a bit like my dad when he was a young man in the 1950s! It seemed an odd look for an OT.
Anyway I think that visit went as well as it could. It's good he could see your mum's confusion and that she often doesn't realise who you are. I think him feeding his views into SS will add a bit more clout to getting extra help, though I still think the only thing that is really going to make a difference is your mum going into care.
It's interesting that she really doesn't want to go out. Wandering was the thing that most put my mum in danger, so it's good even if your mum is threatening to go 'home' she isn't putting that into action.
 

annielou

Registered User
Sep 27, 2019
1,638
Yorkshire
Lol @Sarasa that would be on odd look nowadays especially on hot day like today 😀
He did get to see some of her confusion, temper and lack of insight to her needing help with anything.
mum hasn’t been anywhere on her own for about a year and since covid has only been to my house DRs and hospital and been reluctant to go out at all. I told OT I think it has worked in our favour in respect that doesn’t want to go out as has stopped her when she thinks about going to her other house or her mums. but I am worried that she will forget that worry at times, like when she has tried to leave my house to walk home and last couple of nights when she wanted to go home it was more the dark stopping her. I’m worried that as she’s talking about going home or to her mums house more and more and is more confused now she will actually try one day and worry its getting closer.
 

Woo2

Registered User
Apr 30, 2019
2,653
South East
Don’t ask her just put the fan on , I would . Mum says she doesn’t want a drink , I just make it and leave beside her or I put it in her hand and she see’s me drink and will copy . I’m going to be a positive Polly and hope that after a busy morning she will crash out later and you will get a peaceful evening 🤞 x
 
Last edited:

Jaded'n'faded

Registered User
Jan 23, 2019
889
High Peak
I take my hat off to you @annielou.

My mum was incredibly similar for a long time. Even the conversations you have could have been me and mum, word for word. How well I remember the loops about her seeing her husband (my dad, dead 20 years) and having to go to her mum's house. Whenever I explained she'd say, 'Well nobody told me!' That familiar dementia logic of I can't remember it therefore I must never have been told about it. She was equally confused about her children (just me and bro) and was always asking was it just us or did she have other childen. She'd completely forgotten my children and insisted she'd never seen them and again - why hadn't I told her I had children? Even the stuff about 'that's not my furniture, XX took my furniture.' It amazes me to read your thread - I almost feel like I know your mum!

The difference - and it's a big difference - is that my mum was in a care home and I was only visiting (and having to deal with it all) for an hour at a time. I would arrive to 'Where have you been? I haven't seen J (me) for months. Have you seen her?' Then would follow all the complants about 'this place' which was variously 'the other place' or not the other place or the place she was before when her mother came/went. Sometimes she was in a boarding house, or on a ship, other times they were all being chucked out and she had nowhere to live and they'd taken all her keys. And her bras. By the time I left I was exhausted and couldn't get out the door quick enough. It would take me the rest of the day to get over every visit.

So how you manage is totally beyond me. I think you are Superwoman. But even superheroes need time off, help and support otherwise they lose their super powers.
 

Bikerbeth

Registered User
Feb 11, 2019
1,556
Bedford
I hope the follow up call for hubby with GP went well and hopefully his gastric pains are less.
My Mum is about the same as yours drink wise and will only drink coffee and tea in about the same quantity. She used to drink water with a cooked meal but stopped that about 2 years ago. It is a worry but it is out of my hands now.
visit by OT seemed positive in some respects. I hope his assessment adds weight. It would indeed be fantastic if you could get a bit more of your life back. And you Annielou did a brilliant job distracting your Mum from telling you off.
 

annielou

Registered User
Sep 27, 2019
1,638
Yorkshire
Thanks @Woo2 @Jaded'n'faded @Bikerbeth xxx
I did think of doing that @Woo2 and should have done really. I almost did, when she went out to washing line I thought I'll just get fan out of cupboard and put it on and fib and say I thought she'd told me to when I'd mentioned it, but on the odd occasion we put it on it's very rare that she doesn't constantly moan about it annoying her and being noisy and I just couldn't be bothered listening to her moan about it, I wasn't too bad where I was sat so I left it where it was. I did mention it couple of times but got same answer of It annoys me, so I just said So does being hot, I suppose it depends which annoys you most the heat or the fan. Mum said Fan so I left it where it was.
Mum did drink a bit of her water from her morning tablets while OT was there this morning. All that telling him about her husband who'd just left and her mum who'd just died and telling him I wasn't her daughter and I lied and made out she was mental must have made her thirsty. :oops: I also got her some fresh one of the times I refilled mine and she drank a bit cos when she was saying she was warm one time I said have drink of your water cos its cold, but mostly its just been tea again and coke at dinnertime. She's always been the same with drinks.
Years ago (before dementia) mum was having trouble with her waterworks and was referred to a local clinic, she had to write down what she drank and measure her wee. They told her she wasn't drinking enough and also that she should wait till needed go to loo and wait to make sure finished rather than rush off. We went back after while and mums trouble had gone as she was going to loo better but they still thought she didn't really drink enough water. I had tried and kept telling mum that so I told them I'd been trying to get her to drink water, I drink a few glasses a day but mum doesn't really have it and she said Least you tried love but you can take your mum to water but you can't make her drink. It gave us a laugh at the time and I'm afraid though I do mention drinking water and drinking more to mum I don't make a big thing over it really.
@Jaded'n'faded That does sound very like my mum. It's mind boggling some times I often feel like my head is going to explode with trying to keep up with all the things she comes up with and I'm drained by the time I get home on a night and can't concentrate on much, even tv if we watch it has to be simple most of the time. Especially when on red alert that mum might call in middle of it. I'm more pooper woman than superwoman though as usually feel like poop and feel like doing poop job.
I am actually quite pleased with myself @Bikerbeth that I was quick thinking enough today to distract mum from going off on one at me over talking to OT at door. She was looked at me very grumpy faced when I walked back in and had got her address book on her knee, probably looking for my phone number. I just rabbited on about OT stripping off his pinny etc outside and how horrid it must be in this heat having mask and plastic gloves on while grinning at her like a loon and soon she was laughing and smiling and had forgot she was mad. I'm not often that quick to think of something like that but today I was lucky.
Had 4 calls from mum tonight. The last one at 25 past 10 Mum asked if I was at home I said yes, she said was I ok and I said I was then she asked if W (my dad) was there I said no. Mum said Oh, mind you its only 25 past 10 he'll be at pub still he should be back later so will you be alright? I said Oh yes I'm fine and then mum told me she'd been at her mums house, well it was her house but she'd let her mum have it and she'd not come back home yet but it was bit late now so would I be ok there at home and she'd come back tomorrow? I said Yes I'm fine, you stay there tonight and I'll see you tomorrow. She asked me if I was locked up, I said I was and asked if she was and mum said yes she was, Mum said I think W will be back soon he usually sets off back about 11. I said Yes ok. She asked if I'd be ok there on my own and I said Yes I was fine I'll see her tomorrow. Mum said Ok I'll come back in the morning, I came to see my mum I thought she'd be here but she's not so I'll stay in her bed tonight and come back up in morning. So I said Yes you do that I'll see you tomorrow. Then she said Ok love I'll see you tomorrow night night. She must have thought I'm only a kid and we all still live together.
The first two calls tonight were a bit bizarre, they were hard to figure out what she was talking about so I could come up with answers and the third one she was asking where I was. .
The first call tonight was around 8 when she asked me You know that house we were staying in well I haven't got the keys for it. I came back here today I think it was with you or it might have been our Andrea but I'm not sure what I did with the keys cos I can't find them Do you know where I put them? Did I lock up? Then she said Maybe she'd posted them through the letterbox. She said she'd been all through her coat pockets, bag and purse but didn't have the keys. I wasn't exactly sure what she was meaning really and what her worry was and it took me a while to come up with something to say but I told her she only had her keys for the house she was at now, she would have locked other house and put keys through letterbox. Then mum said But he might not be able to get in if I've locked it. I said Who? and mum said W I don't know where he's living but if he wants to get in and I've locked it he won't be able to get in and it's his house. I said He'll have his own keys if its his house and he's living there so don't worry about it. Mum said Oh aye he will won't he. I said Yeah so he'll be fine don't worry about it its sorted. She said Ok then love night night.
The second call at 20 to 9 was even more confusing to work out, mum was asking me who had been with her earlier when she'd come there. A girl about 16 she thought, maybe a relative, was it me or am I older, I told her I'd been there with her today. Mum thought it was another person, had someone else been there with us, she thought there was a girl and that she was looking after her where she was before, that she'd been staying with mum and mum was looking after her at other house before she had come back to this house but maybe she was mixed up. I said maybe a bit, mum said maybe she'd been asleep and thinking about a story thing, but then said But I keep thinking a girl was here, maybe a relative, I knew her. I said Yes maybe you dreamed it. I wasn't really sure what she was on about so tried to find excuses for it to settle her. I said I was there earlier and we were talking about when I was young so it could be me she was thinking of. We'd also been talking about taking sisters kids to seaside and holidays cos I had some old photos on my facebook memories I'd shown mum this afternoon from a day at seaside with them and we'd talked about that day and also about us taking niece and nephew to butlins once so I said we were talking earlier about that. Mum said she could have got it wrong she is going bit daft. I told her she wasn't daft but sometimes I nod off and dream about things I've talked about or seen and remember it when I wake up so it could be that, She said it could be and then I tried change subject but mum went back to it and said I wonder who it was and where she is though, or am I going mental and mixing it up. I said it she wasn't mental but she might be getting a bit tired and mixing things we'd talked about up especially if she'd been nodding but it wasn't anything to worry about. She said Ok love your probably right. Then she asked if I was ok, where I was and with who, was I married to him and did she come to wedding. I told her yes and she looked lovely and described her outfit and talked bit about wedding which seemed to distract her and she asked if she could look at our photos sometime and I said yes course you can I can show you tomorrow if you like, mum said yes and then said see you tomorrow then love and night night.
The third call at 20 past 9 Mum asked where I was and when I said at home she asked whose home, so I said mine and she asked where it was and if I was with someone and when I said -(hubby) she said oh good you could have stayed here with me but if you've got someone that's ok. Then she said Ok then love I'll see you later night night.
She was confused on each call, not making a lot of sense, but wasn't really upset. She obviously feels something is wrong and she's not sure she's in right place though. Which is sad and scary.
 

annielou

Registered User
Sep 27, 2019
1,638
Yorkshire
Forgot to say @Bikerbeth hubby's been fine on Omneprazole so DRs think nothing serious medically but stress, they’re giving him another prescription for this month but said carry on taking one each day for fortnight then one every other day for fortnight and if ok stop. If comes back can go back to them. Fingers crossed goes ok 🤞
 

canary

Registered User
Feb 25, 2014
13,411
South coast
Yes, it is sad and scary, but at least you managed to persuade her to stay there and didnt end up in all the loops about who had died and when and where her home is...........