Just thought...you can get memantine that dissolves on the tongue and according to mum tastes nice
Who am I ? I won't know myself soon!!!
- Thread starter annielou
- Start date
Hi @annielou, so difficult for you and your husband - the issues with your poor confused Mum are becoming more frequent and more urgent in nature. The need to 'go home' or find a missing loved one are a relatively new development but again, are now quite frequent. I remember it well with my own Mum, and of course inevitably she did go 'walk-about' (although we didn't have door sensors installed). I would be inclined to speak with the Police and the neighbours as you won't always be able to be there before the door sensors are activated at night. Is there any chance the service can activate two or three hours earlier which seems to be a trigger point for your Mum - after you have left (I have never used the service so I have no idea how it operates). I do think you need to explain this latest development to the social worker and the MC though as it seems it is a matter of time before your Mum does leave the house. I feel for you all, its a desperate situation. Stay strong.
Like @Pete1 I'm also really concerned that you only just managed to stop your mum going out looking for people. Definitely have that sensor come on earlier.
But I'm also more concerned about you and your hubby. How much longer can you continue this before you reach breakdown point? Please, please get others to help more. If you get ill (or just too exhausted) you won't be able to help your mum at all and if nothing else is in place, what will happen then?
Enough is enough. You need a better care plan and also an emergency plan if things go pear-shaped.
But I'm also more concerned about you and your hubby. How much longer can you continue this before you reach breakdown point? Please, please get others to help more. If you get ill (or just too exhausted) you won't be able to help your mum at all and if nothing else is in place, what will happen then?
Enough is enough. You need a better care plan and also an emergency plan if things go pear-shaped.
Thanks @Woo2 @Starting on a journey @Pete1 @Jaded'n'faded xxxx
When I arrived at mums this morning her neighbour was outside in her garden, the neighbour who mum had told she'd lost her daughter at the weekend, so I got hubby to drop me off above mums so mum didn't see me and I could pop and have a word with her bout mum. As I got out neighbour called me over and asked if could have a word. I was worried mum might come out n look for me and see me and get annoyed at us talking so I was watching mums door and trying not to be too long but wanted to let her know bit about mum. Neighbour said she didn't want to be nosey or me to think interfering or anything, but she could see where mum was going cos she had a brother who was same. Told me bit about her brother who she said was bad and was in a home now. But she recognised some of it with mum and could see where she was headed. I said I know where mums headed too, she's pretty bad, she has alzheimers. Neighbour talked bit about her brother and how he didn't recognise her and he started talking about having to go places to look for her when she was with him and didn't always recognise his wife, thought she was carer sometimes. I told her mum doesn't know me most of time, she often thinks I'm still a kid now and wants to find me. She keeps talking about going to find me or her other house cos she doesn't recognise her house a lot of time. Sometimes she gets mad and wants me to leave, especially at weekends cos I think she thinks she should be going out with our Andie but I'm not her so sometimes mum threatens to throw me out and if I don't leave she will, so I have to go sometimes, she might have noticed us coming and going more on a weekend cos she makes us go then wants us to come back later. I said we're worried now as mum keeps thinking I'm a kid and needs find me or she's in wrong house and needs to go home or somewhere else and I'm scared she'll go out and get lost. I said that was what happened at weekend she thought I was kid and I couldn't get her to stay in. She was mixed up all day and I was worried she'd go out looking when she was on her own so I'd stood on end of street till 9 when sensors starts cos was worried and we had to come back yesterday night and park down street cos we were worried again.I said she rings me on a night confused and its getting harder to reassure her as she can be in multiple time frames and realitys and if you go along with one you say something wrong for another.
Neighbour said she tries to talk to mum normal if she sees her and if she says anything odd she tries just to say oh and go along with it. She mentioned weekend and said if I wanted to leave my phone number with her she'd ring me if mum went out or she noticed anything worrying. I said thank you that would be good. I said I wasn't expecting her to look after her but if she spotted going out on street, not just garden or noticed anything worrying if she'd ring me that would be good and I'd be grateful. I told her sensor times so and we'd be contacted if she went out and didn't come back in then but if she spotted her too that would be helpful cos we're worried now cos mum kept going on bout its not her house and her kids and looking for people so we're really scared she might go out looking at any time. We think she needs someone with her all time but I cant stay cos gets mad and confused about who I am and that makes things worse sometimes. I stayed before but it was difficult and then she got medication for anxiety so I started staying home but it not's working now and she's more convinced I'm not me more often now. I said she won't try more carers or a home. Neighbour said You have keep trying to convince them of it. I said Mum dont think there's owt wrong with her, she doesn't recognise it she thinks she's fine but SS say cant put her in home unless mum agrees. They think she should be in a home but there's not enough evidence at minute to put her in one against her will. I said I don't want her to go in a home really but I think she needs one now but she won't agree so we're we all on red alert in case goes out or something happens.
I said I'd drop my number through letterbox when I left mums this afternoon so mum didn't see me as she doesn't come out when I leave and carers there. I got hubby to write it down and bring it with him and I posted it when I left. I feel a bit better now I had chance tell her bit about it.
When carer turned up today I popped out with mums bin so I could catch her for a minute before she went in. I told her mums really confused today we've had bad few days, she's mixed up with who's house she's in and thinks we're still kids and been wanting to go look for me or house so it could be confusing afternoon so if you need to call me today thats fine.
This morning it was none stop, confusion. I wasn't me and that wasn't her house I just went along trying to keep up with what she was saying. She thought dad had been there this morning and left. Our Andrea was kid and playing next door but one. Her house was hers, hers and dads, her brothers. it was switching second to second. Everybody had lived there but her. She thought might stay there away from W (my dad) but was worried he'd come back and she only had one bedroom and she had our Andrea so couldn't stay. I kept telling her W only went there cos she was at their house so if she stayed there then he'd stay at other house cos he'd be on own. Andrea was grown up now and married, she sort of believed that if acted like only just did it and was still youngish. It was round and round with all sorts of randomness without a minutes pause. I was getting shaky and thinking I'd have to hide in loo for a minute when day centre manager rang so I popped outside to answer phone.
I felt a bit calmer after I'd been outside for a bit on phone but poor Dc manager made mistake of asking how I was and I tripped over my mouth trying to say I'm ok and I ended up saying well I'm not really and told her mum was really struggling and confused now and I was really worried bout her. I said I didn't think she'd be going back to DC for a while if at home as she was so mixed up. I said she used to sundown and get mixed up in afternoon, and she said she remembered cos mum did it at DC, I said but now it was all time I'd rang at 10.30 and usually arrive at that time and she was like it more and more then now. I told her little bit how she thinks I'm a kid and she's in wrong house and keeps wanting to leave to go home or find me or someone else so we're really scared. She asked if still under MC and I told her yes and they'd just prescribed memantime which we were hoping would help with her getting so worried and anxious.
She'd rung to say were sending mum an activity bag to try which came bout 1/4 to 2 so we opened it and I wiped everything over. Mum was saying it was for kids and moaning a bit so I said just do bits you like like puzzles and colouring sheets. I thought it was a fun bag really so I kept talking about stuff in it and she was more interested but then when carer came told her it was for kids.
Before I left mums carer mentioned cleaning and ironing and mum said it was too hot and they weren't doing it. She also mentioned what was dinner options today so I said what there was mum said I might have the stew but didn't know if W would be back. I said No he'll not come back now. Mum said pulled a face and said Mm we'll see. Carer changed subject and we chatted for few minutes before I left. I think the afternoon will be hard work for carer bless her.
My sister said she was going to email SW to see what happened in 6 weeks because on her report SW put review in 6 weeks. Sis didn't know if that was just her leaving it open for 6 weeks in case heard from us that mum agreed to try respite or they got any evidence that helped their case and if didn't get any would just shut it case like before or if she'd contact us in 6 weeks to see how things were. Sis said she'd also put mum had got worse with wanting to go out etc on email.
When I arrived at mums this morning her neighbour was outside in her garden, the neighbour who mum had told she'd lost her daughter at the weekend, so I got hubby to drop me off above mums so mum didn't see me and I could pop and have a word with her bout mum. As I got out neighbour called me over and asked if could have a word. I was worried mum might come out n look for me and see me and get annoyed at us talking so I was watching mums door and trying not to be too long but wanted to let her know bit about mum. Neighbour said she didn't want to be nosey or me to think interfering or anything, but she could see where mum was going cos she had a brother who was same. Told me bit about her brother who she said was bad and was in a home now. But she recognised some of it with mum and could see where she was headed. I said I know where mums headed too, she's pretty bad, she has alzheimers. Neighbour talked bit about her brother and how he didn't recognise her and he started talking about having to go places to look for her when she was with him and didn't always recognise his wife, thought she was carer sometimes. I told her mum doesn't know me most of time, she often thinks I'm still a kid now and wants to find me. She keeps talking about going to find me or her other house cos she doesn't recognise her house a lot of time. Sometimes she gets mad and wants me to leave, especially at weekends cos I think she thinks she should be going out with our Andie but I'm not her so sometimes mum threatens to throw me out and if I don't leave she will, so I have to go sometimes, she might have noticed us coming and going more on a weekend cos she makes us go then wants us to come back later. I said we're worried now as mum keeps thinking I'm a kid and needs find me or she's in wrong house and needs to go home or somewhere else and I'm scared she'll go out and get lost. I said that was what happened at weekend she thought I was kid and I couldn't get her to stay in. She was mixed up all day and I was worried she'd go out looking when she was on her own so I'd stood on end of street till 9 when sensors starts cos was worried and we had to come back yesterday night and park down street cos we were worried again.I said she rings me on a night confused and its getting harder to reassure her as she can be in multiple time frames and realitys and if you go along with one you say something wrong for another.
Neighbour said she tries to talk to mum normal if she sees her and if she says anything odd she tries just to say oh and go along with it. She mentioned weekend and said if I wanted to leave my phone number with her she'd ring me if mum went out or she noticed anything worrying. I said thank you that would be good. I said I wasn't expecting her to look after her but if she spotted going out on street, not just garden or noticed anything worrying if she'd ring me that would be good and I'd be grateful. I told her sensor times so and we'd be contacted if she went out and didn't come back in then but if she spotted her too that would be helpful cos we're worried now cos mum kept going on bout its not her house and her kids and looking for people so we're really scared she might go out looking at any time. We think she needs someone with her all time but I cant stay cos gets mad and confused about who I am and that makes things worse sometimes. I stayed before but it was difficult and then she got medication for anxiety so I started staying home but it not's working now and she's more convinced I'm not me more often now. I said she won't try more carers or a home. Neighbour said You have keep trying to convince them of it. I said Mum dont think there's owt wrong with her, she doesn't recognise it she thinks she's fine but SS say cant put her in home unless mum agrees. They think she should be in a home but there's not enough evidence at minute to put her in one against her will. I said I don't want her to go in a home really but I think she needs one now but she won't agree so we're we all on red alert in case goes out or something happens.
I said I'd drop my number through letterbox when I left mums this afternoon so mum didn't see me as she doesn't come out when I leave and carers there. I got hubby to write it down and bring it with him and I posted it when I left. I feel a bit better now I had chance tell her bit about it.
When carer turned up today I popped out with mums bin so I could catch her for a minute before she went in. I told her mums really confused today we've had bad few days, she's mixed up with who's house she's in and thinks we're still kids and been wanting to go look for me or house so it could be confusing afternoon so if you need to call me today thats fine.
This morning it was none stop, confusion. I wasn't me and that wasn't her house I just went along trying to keep up with what she was saying. She thought dad had been there this morning and left. Our Andrea was kid and playing next door but one. Her house was hers, hers and dads, her brothers. it was switching second to second. Everybody had lived there but her. She thought might stay there away from W (my dad) but was worried he'd come back and she only had one bedroom and she had our Andrea so couldn't stay. I kept telling her W only went there cos she was at their house so if she stayed there then he'd stay at other house cos he'd be on own. Andrea was grown up now and married, she sort of believed that if acted like only just did it and was still youngish. It was round and round with all sorts of randomness without a minutes pause. I was getting shaky and thinking I'd have to hide in loo for a minute when day centre manager rang so I popped outside to answer phone.
I felt a bit calmer after I'd been outside for a bit on phone but poor Dc manager made mistake of asking how I was and I tripped over my mouth trying to say I'm ok and I ended up saying well I'm not really and told her mum was really struggling and confused now and I was really worried bout her. I said I didn't think she'd be going back to DC for a while if at home as she was so mixed up. I said she used to sundown and get mixed up in afternoon, and she said she remembered cos mum did it at DC, I said but now it was all time I'd rang at 10.30 and usually arrive at that time and she was like it more and more then now. I told her little bit how she thinks I'm a kid and she's in wrong house and keeps wanting to leave to go home or find me or someone else so we're really scared. She asked if still under MC and I told her yes and they'd just prescribed memantime which we were hoping would help with her getting so worried and anxious.
She'd rung to say were sending mum an activity bag to try which came bout 1/4 to 2 so we opened it and I wiped everything over. Mum was saying it was for kids and moaning a bit so I said just do bits you like like puzzles and colouring sheets. I thought it was a fun bag really so I kept talking about stuff in it and she was more interested but then when carer came told her it was for kids.
Before I left mums carer mentioned cleaning and ironing and mum said it was too hot and they weren't doing it. She also mentioned what was dinner options today so I said what there was mum said I might have the stew but didn't know if W would be back. I said No he'll not come back now. Mum said pulled a face and said Mm we'll see. Carer changed subject and we chatted for few minutes before I left. I think the afternoon will be hard work for carer bless her.
My sister said she was going to email SW to see what happened in 6 weeks because on her report SW put review in 6 weeks. Sis didn't know if that was just her leaving it open for 6 weeks in case heard from us that mum agreed to try respite or they got any evidence that helped their case and if didn't get any would just shut it case like before or if she'd contact us in 6 weeks to see how things were. Sis said she'd also put mum had got worse with wanting to go out etc on email.
It’s great news that the neighbour will phone if she sees anything. Very kind of her and it’s another set of eyes. Apart from that I would tell sis to e Mail soon as mums behaviour is escalating again.
Glad you managed to talk to the neighbour. My mother's neighbour's were very useful when things got tricky and I couldn't et over to see her straight away. I'm with @Jaded and faded that you need to get more support sorted out. You and your husband can't keep chasing round trying to keep your mum safe. I's also agree with @Starting on a journey that you need to flag up to social services that things have moved on. I know you don't want her to go into care, but I do think they are rather hiding behind your mother not wanting to go. I know my mother was self-funding but she would always say she wouldn't want to move to a care home. She would also say she could cope fine on her own, and like your mother she couldn't.
Thanks @Starting on a journey @Sarasa xx
Sis emailed and SW said we still need to get her into a home, then she will come out and reassess her and confirm her for full time care. Needs to be before september, she needs to close case then. Said she was really sorry we're having a terrible time and mum really needed care but her hands were tied. So it seems SW still not able to act..
Today went downhill too. Mobile rang 17.19 was carer almost whispering, can you ring your mum, I said is she bad? and carer said bad. I rang mums, mum answered. I said hello mum its me andrea are you ok? Mum said I'm coming. I said Coming where? Mum said Home to my house, where I live with W (my dad) and if he's in I'll tell him to ****** off and if he's not in he wint be getting back in so I'm coming love. I said I'm not with W. Mum said I know you're not but I'm going home. I said Stay there mum you're living there now. Mum said I'm not I only came to do some work I'm going back to mine and Ws house. I said You don't live with W now you said earlier you were going to stay there now cos preferred it. (we'd talked about that in her many muddles this morning, she would stay there cos better than being with W) Mum said I didn't. I said You did you don't live with W now. Mum shouted I do! I'm going now! I panicked and said You don't mum you split up years ago, he's dead now. Mum said Who's dead W? I said Yeah. Mum say No he didn't. I told her He is mum you split up years ago and he died few year ago, you're not with W now so You can stay there. Mum said I know I'm not with W now, I mean HIM, him I live with not W. I tried explain She lived there now so cold stay there and mum shouted Oh Andrea don't start I'm up to here with it I'm going home! I said Well stay there and I'll come and take you up there. Mum said I'm not a baby I can go on my own! I said I know but it's a long way up there and its really hot, you don't want to be walking in this heat and so far so let us take you. Mum said Well how long you gonna be? I said Not long only bout 1/4 of an hour. Mum said Ok then but then I'm going home.
Luckily hubby had finished work officially at that time though he was still working but he was able to take me over. I just left everything as it was apart from turning plugs off on fan and iron and we went over to mums. Mum was sat next to carer and carer was touching mums hand trying to calm her down. Mum had her shoes on, had got her cardi out and had turned tv off. I said hello and mum said straight away she was going home. I said let us have a minute cos its boilling in car. Mum got up turned fan off and was shutting blinds and curtains and locking back door and then stood in room with keys in her hand and puzzle book ready to go. We tried all sorts to put her off saying it was hot so could we put fan back on to cool down, traffic was bad so could we wait a bit. Tried going along with it and suggesting mum stayed where she was and left W in other house, tried saying that's what she decided earlier in day, she preferred this house. Mum was really agitated kept saying no to everything and she wanted to go before he went out to pub so could tell him to go. I said He's not in, we drove by and it looked in darkness nobody was in. Mum asked if we'd seen him I said no he wasn't there, didn't look like he'd been there for a while so may have already gone. No need rush cos he wasn't in so why don't we stay here.
Carer had said mum wouldn't have any dinner so I suggested we stay and have dinner here but she said no, I want to go check. Had he had any dinner? I said He wasn't there. Mum said Bet he's gone to pub. I want to go now are we going? We kept asking can if could put fan on cos we'd been boiling in car and carer was melting. Mum said just kept saying No she wanted to go home. We said why don't we stay here for dinner and go later. Mum said No I'll have my dinner at home. Told her it was melting in car and traffic busy we could just wait a bit. She kept saying No or Are we going. I said Just let me have five minutes with fan on mum its so hot I feel yucky. She said Oh go on then put it on. I put fan on and she started asking again if W was in and if had dinner and saying she was hungry and wanted to go for her dinner. We kept saying why don't we have it here and then go then cos we're hungry and it'll take ages in this traffic. Carer hubby and I kept trying and eventually half an hour after we arrived mum sat down again and said Ok then we'll have dinner and then go.
I went in kitchen and put it on straight away. Tried to talk about what having and heat to get mum of subject of going. Mum still kept saying she was waiting go and when are we going I want to go get my dinner. I kept reminding her I'd put dinner on and we were having it here first. I went to check on dinner and carer came in on pretext of asking what making and she apologised about ringing me and me having to come back. I told her I half expected it she's been like this for days. She said she really tried to calm her down and distract her but just couldn't, I said I know you would have, I get it, it's terrible. We had little chat about how mum had been lately and I told her how worried we were about her going out looking for me as kid, or her house, etc and how hard it is to convince her to stay put That she was mixed up much more of day now in fact more or less permanently. I told her little bit of what SW said and OT and new tablet starting tomorrow. Hubby had sat next to mum in room and got her chatting and managed to get her to put keys and puzzle book down and let him put tele on, so she didn't hear us or notice we were both in kitchen and kick off. Mum did ask what doing couple of times first time carer said asking what making and second time I said she was hot and wanted to stand at back door for some air so I got keys and unlocked it and we stood on steps for few minutes before going back in room before mum got snappy.
Carer stayed a bit longer trying to chat with mum and us and showed mum and us some photos on her phone of garden and we all tried to get mum to settle down. I'd told carer when I arrived and also in kitchen that she could go now we were there it was ok, but she stayed till her usual 6.30 time bless her. Mum was much calmer when we'd gone back in room and less shouty and angry than she had been first half hour we were there, though she still kept saying she was going back home after we'd had dinner.
She calmed down more over dinner and we reminded her man was coming tomorrow to mend her loo and we said You'd be better off staying here cos got to come back tomorrow. Mum said Oh I'll have to come down early then just in case, We managed to convince her that it be better to just stay there cos it seemed silly to go home and come back. She said Ok I think I will but my mum will be mad at me. I'll go back next day though. She'd been on about going home to her and Ws house up to then but now was her mums, we didn't say anything. She took her shoes off cos feet hot so I got up and put them back in bedroom and fetched slippers quick in hope settle her more. We kept chatting about tv programme and things and each time she mentioned going up home we reminded her better to stay cos coming fix loo tomorrow. We suggested cup of tea bout 1/4 to 8 when she looked thoughtful and bit fidgety and kept being upbeat and not mentioning anything about houses or my dad or her mum.
We waited till 1/4 to 9 and then said we were going home and I'd come back in morning before loo man came. She said ok and waved us off moaning about heat.
We'd just got on our street when my mobile went, mums door senor had gone off and they couldn't reach her over box or by phone. I said We've just left her a bit ago so we'll turn round and go check on her. I wondered if mum had spotted neighbour while she was at door waving us off or if she might have sat outside on her bench to cool off or if she had gone looking for someone or somewhere. I kept ringing mum on way back there but got no answer, one time I rang and we were half way back there, as phone was ringing a voice came on saying please hang up an emergency call is coming through. I told hubby I bet sensor gone off again and its box triggering to ask her whats matter, so she might have come back in. I gave it a minute and rang mum again and she answered, Mum said she'd sat outside on her bench cos warm but it was as warm outside so come back in and box was talking to her. I said Yes they'd rung me to say couldn't get you. Are you going to lock up and stay in now? and she said Yes love. We said see you in morning and night night. Just as hung up controller called me back and told me mum was back in and what she'd been doing . I told her we'd just talked to her and thanked her. Hubby and I came back home.
Mum rang house phone at 9.21 Are kids with you? Are they at your house? I said Yeah we're all in we're ok. Mum said Are they at your house our (my sister ) and our andie? I said Yeah they're here we're all ok. Mum said Oh good thanks love, ok I'll see you tomorrow. then we said night.
Rang again 9.25 saying I can't work my phone, talking about green and red lights being on. I didn't know if meant on lifeline box or her phone base unit and as she was on phone I wasn't sure what was working. It took bit of questioning but think she noticed the number for answer machine messages flashing cos I'd left a message and possibly lifeline had too and she meant the little power indicator light and answer phone on lights. It took a few goes at explaining it was ok they should be on its fine before mum said Ok love. Then she asked Are kids there? I said Yeah, mum said Have they gone to bed? I said Yes. Mum said Its a bit early int it. I said They were tired and its hot so they went, we might go soon too. Mum said It is hot isn't it and it's tiring. I said Yes so think we'll go too. Mum said Ok then love night night.
Sis emailed and SW said we still need to get her into a home, then she will come out and reassess her and confirm her for full time care. Needs to be before september, she needs to close case then. Said she was really sorry we're having a terrible time and mum really needed care but her hands were tied. So it seems SW still not able to act..
Today went downhill too. Mobile rang 17.19 was carer almost whispering, can you ring your mum, I said is she bad? and carer said bad. I rang mums, mum answered. I said hello mum its me andrea are you ok? Mum said I'm coming. I said Coming where? Mum said Home to my house, where I live with W (my dad) and if he's in I'll tell him to ****** off and if he's not in he wint be getting back in so I'm coming love. I said I'm not with W. Mum said I know you're not but I'm going home. I said Stay there mum you're living there now. Mum said I'm not I only came to do some work I'm going back to mine and Ws house. I said You don't live with W now you said earlier you were going to stay there now cos preferred it. (we'd talked about that in her many muddles this morning, she would stay there cos better than being with W) Mum said I didn't. I said You did you don't live with W now. Mum shouted I do! I'm going now! I panicked and said You don't mum you split up years ago, he's dead now. Mum said Who's dead W? I said Yeah. Mum say No he didn't. I told her He is mum you split up years ago and he died few year ago, you're not with W now so You can stay there. Mum said I know I'm not with W now, I mean HIM, him I live with not W. I tried explain She lived there now so cold stay there and mum shouted Oh Andrea don't start I'm up to here with it I'm going home! I said Well stay there and I'll come and take you up there. Mum said I'm not a baby I can go on my own! I said I know but it's a long way up there and its really hot, you don't want to be walking in this heat and so far so let us take you. Mum said Well how long you gonna be? I said Not long only bout 1/4 of an hour. Mum said Ok then but then I'm going home.
Luckily hubby had finished work officially at that time though he was still working but he was able to take me over. I just left everything as it was apart from turning plugs off on fan and iron and we went over to mums. Mum was sat next to carer and carer was touching mums hand trying to calm her down. Mum had her shoes on, had got her cardi out and had turned tv off. I said hello and mum said straight away she was going home. I said let us have a minute cos its boilling in car. Mum got up turned fan off and was shutting blinds and curtains and locking back door and then stood in room with keys in her hand and puzzle book ready to go. We tried all sorts to put her off saying it was hot so could we put fan back on to cool down, traffic was bad so could we wait a bit. Tried going along with it and suggesting mum stayed where she was and left W in other house, tried saying that's what she decided earlier in day, she preferred this house. Mum was really agitated kept saying no to everything and she wanted to go before he went out to pub so could tell him to go. I said He's not in, we drove by and it looked in darkness nobody was in. Mum asked if we'd seen him I said no he wasn't there, didn't look like he'd been there for a while so may have already gone. No need rush cos he wasn't in so why don't we stay here.
Carer had said mum wouldn't have any dinner so I suggested we stay and have dinner here but she said no, I want to go check. Had he had any dinner? I said He wasn't there. Mum said Bet he's gone to pub. I want to go now are we going? We kept asking can if could put fan on cos we'd been boiling in car and carer was melting. Mum said just kept saying No she wanted to go home. We said why don't we stay here for dinner and go later. Mum said No I'll have my dinner at home. Told her it was melting in car and traffic busy we could just wait a bit. She kept saying No or Are we going. I said Just let me have five minutes with fan on mum its so hot I feel yucky. She said Oh go on then put it on. I put fan on and she started asking again if W was in and if had dinner and saying she was hungry and wanted to go for her dinner. We kept saying why don't we have it here and then go then cos we're hungry and it'll take ages in this traffic. Carer hubby and I kept trying and eventually half an hour after we arrived mum sat down again and said Ok then we'll have dinner and then go.
I went in kitchen and put it on straight away. Tried to talk about what having and heat to get mum of subject of going. Mum still kept saying she was waiting go and when are we going I want to go get my dinner. I kept reminding her I'd put dinner on and we were having it here first. I went to check on dinner and carer came in on pretext of asking what making and she apologised about ringing me and me having to come back. I told her I half expected it she's been like this for days. She said she really tried to calm her down and distract her but just couldn't, I said I know you would have, I get it, it's terrible. We had little chat about how mum had been lately and I told her how worried we were about her going out looking for me as kid, or her house, etc and how hard it is to convince her to stay put That she was mixed up much more of day now in fact more or less permanently. I told her little bit of what SW said and OT and new tablet starting tomorrow. Hubby had sat next to mum in room and got her chatting and managed to get her to put keys and puzzle book down and let him put tele on, so she didn't hear us or notice we were both in kitchen and kick off. Mum did ask what doing couple of times first time carer said asking what making and second time I said she was hot and wanted to stand at back door for some air so I got keys and unlocked it and we stood on steps for few minutes before going back in room before mum got snappy.
Carer stayed a bit longer trying to chat with mum and us and showed mum and us some photos on her phone of garden and we all tried to get mum to settle down. I'd told carer when I arrived and also in kitchen that she could go now we were there it was ok, but she stayed till her usual 6.30 time bless her. Mum was much calmer when we'd gone back in room and less shouty and angry than she had been first half hour we were there, though she still kept saying she was going back home after we'd had dinner.
She calmed down more over dinner and we reminded her man was coming tomorrow to mend her loo and we said You'd be better off staying here cos got to come back tomorrow. Mum said Oh I'll have to come down early then just in case, We managed to convince her that it be better to just stay there cos it seemed silly to go home and come back. She said Ok I think I will but my mum will be mad at me. I'll go back next day though. She'd been on about going home to her and Ws house up to then but now was her mums, we didn't say anything. She took her shoes off cos feet hot so I got up and put them back in bedroom and fetched slippers quick in hope settle her more. We kept chatting about tv programme and things and each time she mentioned going up home we reminded her better to stay cos coming fix loo tomorrow. We suggested cup of tea bout 1/4 to 8 when she looked thoughtful and bit fidgety and kept being upbeat and not mentioning anything about houses or my dad or her mum.
We waited till 1/4 to 9 and then said we were going home and I'd come back in morning before loo man came. She said ok and waved us off moaning about heat.
We'd just got on our street when my mobile went, mums door senor had gone off and they couldn't reach her over box or by phone. I said We've just left her a bit ago so we'll turn round and go check on her. I wondered if mum had spotted neighbour while she was at door waving us off or if she might have sat outside on her bench to cool off or if she had gone looking for someone or somewhere. I kept ringing mum on way back there but got no answer, one time I rang and we were half way back there, as phone was ringing a voice came on saying please hang up an emergency call is coming through. I told hubby I bet sensor gone off again and its box triggering to ask her whats matter, so she might have come back in. I gave it a minute and rang mum again and she answered, Mum said she'd sat outside on her bench cos warm but it was as warm outside so come back in and box was talking to her. I said Yes they'd rung me to say couldn't get you. Are you going to lock up and stay in now? and she said Yes love. We said see you in morning and night night. Just as hung up controller called me back and told me mum was back in and what she'd been doing . I told her we'd just talked to her and thanked her. Hubby and I came back home.
Mum rang house phone at 9.21 Are kids with you? Are they at your house? I said Yeah we're all in we're ok. Mum said Are they at your house our (my sister ) and our andie? I said Yeah they're here we're all ok. Mum said Oh good thanks love, ok I'll see you tomorrow. then we said night.
Rang again 9.25 saying I can't work my phone, talking about green and red lights being on. I didn't know if meant on lifeline box or her phone base unit and as she was on phone I wasn't sure what was working. It took bit of questioning but think she noticed the number for answer machine messages flashing cos I'd left a message and possibly lifeline had too and she meant the little power indicator light and answer phone on lights. It took a few goes at explaining it was ok they should be on its fine before mum said Ok love. Then she asked Are kids there? I said Yeah, mum said Have they gone to bed? I said Yes. Mum said Its a bit early int it. I said They were tired and its hot so they went, we might go soon too. Mum said It is hot isn't it and it's tiring. I said Yes so think we'll go too. Mum said Ok then love night night.
This is terrible,it really does sound as though your Mum needs full time care now.What happens if you breakdown?That sounds like a real possibility.If carer can't cope where does that leave you.I really hope medication helps.Take care.
Oh @annielou ? ? What a day
you must be absolutely wrung out, I can’t imagine how you felt as I know I panic when mum got like that , you did so well to turn it around and get her to stay indoors . It feels like your sticking plasters on . Im sorry SS are going to close case soon if mum doesn’t go in and you will have start whole process again. Sending hugs and strength and support in equal measure . X
you must be absolutely wrung out, I can’t imagine how you felt as I know I panic when mum got like that , you did so well to turn it around and get her to stay indoors . It feels like your sticking plasters on . Im sorry SS are going to close case soon if mum doesn’t go in and you will have start whole process again. Sending hugs and strength and support in equal measure . XI am amazed at social services....have to close the case by September, you need to get her into a home ......thought they were there to help you?
Perhaps the care agency can also file a report with the social worker?
I hope you are keeping copies of everything that they write to you in the event of any issues.
Maybe now is the time to ask social worker for any suitable homes that are within local authority limits and set the ball rolling for any assessments. It seems to me that she will have to have care shortly because you are going to be unable to prevent something. The memantine may make her less agitated so you might be able to get her moved then.
I am so sorry that you are not getting the support you need and deserve so that your lovely mum can be looked after by a team rather than one frazzled daughter
Perhaps the care agency can also file a report with the social worker?
I hope you are keeping copies of everything that they write to you in the event of any issues.
Maybe now is the time to ask social worker for any suitable homes that are within local authority limits and set the ball rolling for any assessments. It seems to me that she will have to have care shortly because you are going to be unable to prevent something. The memantine may make her less agitated so you might be able to get her moved then.
I am so sorry that you are not getting the support you need and deserve so that your lovely mum can be looked after by a team rather than one frazzled daughter
Hi @annielou, what an awful day for you all. I hope starting the memantine might make your mother a bit more relaxed, but it isn't going to help her understand how confused she is. I do wonder if she has got a UTI as this confusion seems to have really built up over the last few days. Even if she has and the new medication helps, she needs to move to a care home however much she and you don't want that to happen.
I'm a bit confused by what the social worker said. Is it that she's thought all along that your mum needed a care home but couldn't put that in motion until other options had been tried. Now she thinks all those options have been used up so she can start organising something. That doesn't seem to square with I can't do something until your mum agrees, unless she is now admitting that your mum has lost capacity. Either way I can't see putting an arbitrary deadline on things helps.
Another thought if you don't get anywhere with SS, can the neighbour phone them and report their concerns about your mother. Just another voice adding evidence might be helpful.
Whatever happens {{{{hugs}}}}
I'm a bit confused by what the social worker said. Is it that she's thought all along that your mum needed a care home but couldn't put that in motion until other options had been tried. Now she thinks all those options have been used up so she can start organising something. That doesn't seem to square with I can't do something until your mum agrees, unless she is now admitting that your mum has lost capacity. Either way I can't see putting an arbitrary deadline on things helps.
Another thought if you don't get anywhere with SS, can the neighbour phone them and report their concerns about your mother. Just another voice adding evidence might be helpful.
Whatever happens {{{{hugs}}}}
Hi @annielou, sorry to hear about the latest emergency - you are now fighting daily to stop your poor Mum go on 'walkabout'. So far you have been able to get round there quickly to attend to Mum, realistically that won't always be the case.
On a practical note - I was wondering whether your Mum might be dehydrated too (which can make confusion far worse), with the extreme heat she would need to drink much more, I wonder if she is?
I have to say the Social Workers advice is rather strange, they can't 'close' an ongoing case, which your Mum's is. They need to arrange an appointment now really. Ideally in the correspondence your sister should state clearly that your Mum now presents as a serious safeguarding risk and that you have extreme concern for her welfare under the current care provision which does not meet her needs, and that you are formally raising this with the Social Services Team - that may elicit some action.
All the best. Stay strong.
On a practical note - I was wondering whether your Mum might be dehydrated too (which can make confusion far worse), with the extreme heat she would need to drink much more, I wonder if she is?
I have to say the Social Workers advice is rather strange, they can't 'close' an ongoing case, which your Mum's is. They need to arrange an appointment now really. Ideally in the correspondence your sister should state clearly that your Mum now presents as a serious safeguarding risk and that you have extreme concern for her welfare under the current care provision which does not meet her needs, and that you are formally raising this with the Social Services Team - that may elicit some action.
All the best. Stay strong.
Thanks for replies @notsogooddtr @Woo2 @Starting on a journey @Sarasa @Pete1 xxxxx
When she did mums assessment a few weeks ago SW said she thinks mum needs full time care but they do not have enough evidence to get a court order to put her in one against her wishes. She said mum has fluctuating capacity and is still able to make her own decisions even though they may be unwise ones. She said the only thing they can do is if we get mum to agree to respite she will go in to home and re assess her and try talk mum into agreeing to stay and she she should then be able say mums warrants a care home setting and mum is willing to stay. Because of this she has left mums case open for 6 weeks from last assessment but if nothing changes in those 6 weeks she'll have to close case and she'll no longer be assigned to it. Then it will be as we were before, because they are not currently providing any care we won't have an open case and assigned SW, only the respite weeks will stay on offer till its reviewed n a year. If we think we need anything else from SS we'll have to apply for a reassessment as new case again like we did this time.
It is getting harder and harder to stop mum going off on her search, she was shouting and looking frantic. Its getting harder to talk her into staying put and her confusion the rest of the time is more or less constant now. I'm so scared something is going to happen to her,I'm scared to leave her alone or even with carer now, but I'm also scared when I'm with her as I'm scared I'm not going to be able to convince her to stay put.
I don't think mums neighbour would want responsibility of getting involved with SS and giving evidence which would be a big thing to get involved in and her and mum aren't friends just neighbours.
I don't like the idea of mum going in a CH especially at moment, but I do think its what she needs, but I don't know how we'll ever get her to go in one. My sister has been in touch with one in next village to me that doesn't have top up fees and they said we may be able to go for look round after monday. Sis had also rung another one in town that doesn't have top ups and they had a place when she rang but can't visit it and SW mentioned she had been to another one recently that didn't have top up fees. Normally though it seems our SS don't tell people about or help people find homes, it's up to family to do that, they just have a list on their website which they didn't even tell us how to find properly. The online list is also from 2 years ago and one of the homes doesn't exist anymore. They really aren't very helpful from my experience.
Mum might have a uti and also might be dehydrated, mum doesn't drink much only tea,she never has, I've been trying to get her to drink more but she hasn't really. I tried getting a sample a few times but its been as successful as all the other things I try to get her to do, a failure. I'm going to take test strips again today along with hubbys BP monitor and try telling her MC has put her on another tablet and I have to monitor her BP and wee for any effects so we need to do a test when she starts then today. I used similar approach last week when I needed to weigh her for MC to prescribe memantine and told her they were doing a review and that was why OT was coming. It worked last week but she was in quite a good calm mood that morning so I'm really not sure if it will work today as she has been confused and agitated even on a morning lately but I'll try.
When she did mums assessment a few weeks ago SW said she thinks mum needs full time care but they do not have enough evidence to get a court order to put her in one against her wishes. She said mum has fluctuating capacity and is still able to make her own decisions even though they may be unwise ones. She said the only thing they can do is if we get mum to agree to respite she will go in to home and re assess her and try talk mum into agreeing to stay and she she should then be able say mums warrants a care home setting and mum is willing to stay. Because of this she has left mums case open for 6 weeks from last assessment but if nothing changes in those 6 weeks she'll have to close case and she'll no longer be assigned to it. Then it will be as we were before, because they are not currently providing any care we won't have an open case and assigned SW, only the respite weeks will stay on offer till its reviewed n a year. If we think we need anything else from SS we'll have to apply for a reassessment as new case again like we did this time.
It is getting harder and harder to stop mum going off on her search, she was shouting and looking frantic. Its getting harder to talk her into staying put and her confusion the rest of the time is more or less constant now. I'm so scared something is going to happen to her,I'm scared to leave her alone or even with carer now, but I'm also scared when I'm with her as I'm scared I'm not going to be able to convince her to stay put.
I don't think mums neighbour would want responsibility of getting involved with SS and giving evidence which would be a big thing to get involved in and her and mum aren't friends just neighbours.
I don't like the idea of mum going in a CH especially at moment, but I do think its what she needs, but I don't know how we'll ever get her to go in one. My sister has been in touch with one in next village to me that doesn't have top up fees and they said we may be able to go for look round after monday. Sis had also rung another one in town that doesn't have top ups and they had a place when she rang but can't visit it and SW mentioned she had been to another one recently that didn't have top up fees. Normally though it seems our SS don't tell people about or help people find homes, it's up to family to do that, they just have a list on their website which they didn't even tell us how to find properly. The online list is also from 2 years ago and one of the homes doesn't exist anymore. They really aren't very helpful from my experience.
Mum might have a uti and also might be dehydrated, mum doesn't drink much only tea,she never has, I've been trying to get her to drink more but she hasn't really. I tried getting a sample a few times but its been as successful as all the other things I try to get her to do, a failure. I'm going to take test strips again today along with hubbys BP monitor and try telling her MC has put her on another tablet and I have to monitor her BP and wee for any effects so we need to do a test when she starts then today. I used similar approach last week when I needed to weigh her for MC to prescribe memantine and told her they were doing a review and that was why OT was coming. It worked last week but she was in quite a good calm mood that morning so I'm really not sure if it will work today as she has been confused and agitated even on a morning lately but I'll try.
You are an angel!
it all seems very wrong to me. I just think the social worker is hiding behind the fluctuating capacity.
I do think you need to continue searching for homes as it may be difficult to place your mum as she will need a secure dementia unit. Let’s face it, it took three of you to calm her yesterday so she will need somewhere with sufficient staffing. If she goes to the wrong category of home they will fail to cope with her.
Maybe a call to the Alzheimer’s society helpline again? They might suggest something else ?
Might be worth notifying the local police team that she is vulnerable (in advance...like you I think the Herbert protocol is for when they go missing).
Just in case they are in the area and see her going out.
When the OT comes again let them know everything, copy your latest posts as they are comprehensive. They may be able to advise something else to help.
Failing that if she gets really bad and you can’t calm her, ring for an ambulance, they would be able to check she is physically ok and probably take her in for assessment.
Other than that you have my warm wishes and hope that a solution will be found soon
it all seems very wrong to me. I just think the social worker is hiding behind the fluctuating capacity.
I do think you need to continue searching for homes as it may be difficult to place your mum as she will need a secure dementia unit. Let’s face it, it took three of you to calm her yesterday so she will need somewhere with sufficient staffing. If she goes to the wrong category of home they will fail to cope with her.
Maybe a call to the Alzheimer’s society helpline again? They might suggest something else ?
Might be worth notifying the local police team that she is vulnerable (in advance...like you I think the Herbert protocol is for when they go missing).
Just in case they are in the area and see her going out.
When the OT comes again let them know everything, copy your latest posts as they are comprehensive. They may be able to advise something else to help.
Failing that if she gets really bad and you can’t calm her, ring for an ambulance, they would be able to check she is physically ok and probably take her in for assessment.
Other than that you have my warm wishes and hope that a solution will be found soon
Hi Annielou,how much care is your Mum receiving now?How many visits per day?I know it's hard but it's now about what your Mum needs not what she wants.She will never 'want' carers or a care home but definitely needs one or the other.I think it's time for some tough love,at the moment you are 'enabling' her by running round to her house at the drop of a hat.Could you not switch your phone off when carer is there?As for fear of Mum leaving the house,this will likely escalate so she is ringing 24/7,can you cope with that?And can your husband who is also trying to hold down a job?I would be tempted to call the police next time,tell them your Mum is vulnerable ,threatening to leave the house and THAT YOU CAN'T GET TO HER!!!
I know this sounds harsh but you need to make SS sit up and take notice.
I know this sounds harsh but you need to make SS sit up and take notice.
Hi @annielou
This all just sounds so worrying. You must be exhausted trying to help your mum, who is getting more, and more confused.
Like others, I too feel it won't be long before your mum starts wandering, and you won't be able to get there in time to help and protect her.
I thought SS had to help find homes, unless you are self funding.
Please keep bombarding SS with your posts, copied from here, about what is happening and stress that this is a safeguarding issue as you cannot guarantee to get to your mum in time.
Please get sis to email her concerns too. Keep doing this, then surely SS can't close her case.
As, others have said, ask care agency to report to SS too.
Your mum's neighbour is willing to help, she will know the situation, having been through it with her own brother, and am sure she wouldn't consider it a bother to report to SS or Police , when your mum is wandering.
Make sure you are looking after yourself too, you will not be able to continue to help, but will become ill yourself, and who will be there for your mum then?
I don't want to add to your stress, but am really concerned about your situation. Sending love and hugs, xx
This all just sounds so worrying. You must be exhausted trying to help your mum, who is getting more, and more confused.
Like others, I too feel it won't be long before your mum starts wandering, and you won't be able to get there in time to help and protect her.
I thought SS had to help find homes, unless you are self funding.
Please keep bombarding SS with your posts, copied from here, about what is happening and stress that this is a safeguarding issue as you cannot guarantee to get to your mum in time.
Please get sis to email her concerns too. Keep doing this, then surely SS can't close her case.
As, others have said, ask care agency to report to SS too.
Your mum's neighbour is willing to help, she will know the situation, having been through it with her own brother, and am sure she wouldn't consider it a bother to report to SS or Police , when your mum is wandering.
Make sure you are looking after yourself too, you will not be able to continue to help, but will become ill yourself, and who will be there for your mum then?
I don't want to add to your stress, but am really concerned about your situation. Sending love and hugs, xx
Had to leave mums tonight mid sundowning she got mad said shes had enough dont want us there tried to stay n tried talk her i to it but she kept sayin she’d go if we didnt. Tried to stand in way of door she pulled me out of way. Went outside back door n wudnt come in till i sed i wud go. Got her kept tryin convince her but was getting worse. So came home. My sister rang to tey talk to her but she didnt like what sis was sayin and hung up. Mum rang me and wanted me but was talkin load of rubbish bout where lived n my dad and me being child. Hung up when tried talking to her to calm her down. Rang her back minute later she wanted me go take her to her house. I told her bit of truth simply and in her house as going along with her reality hasn’t worked today. I tried get her calm down saying memory mixed up stay there get a sandwich and cup of tea and I’d have my dinner with hubby and ring her back later, cos we’d not had it at hers. Thought she’d calmed down bit even though didnt believe me but then started asking bout my dad again and her not living there. I told her again about having something eat might help her feel better and she went. I’m so scared she’ll go out. I’m scared to go back cos she is adamant I’m not me snd its friend who has been. But she is all upset on her own and was crying.
when she was telling me to go or she would earlier and talking about going back to other house on first call when i got in i told her to stay there and if she went out I’d call police and have her arrested. I don’t think that was my best idea but i was panicking and didnt know what to say.
My sister tried ringing memory clinic see if could give any advice or do snything they should be someone there till 8 but it was closed, probably due to everyone doing different hours for covid.
i don’t know what to do. Stay at my house and ring her again soon and hope for best and she settles down. Go over and try sit with her till nearly time for sensor again. Go back and stay with her. Risking her not recognising me and being back in same boat as earlier where i leave or she does??
its only just after 7 sensor doesnt come on till 9 and she’ll be up for hours yet. This is sh@@
when she was telling me to go or she would earlier and talking about going back to other house on first call when i got in i told her to stay there and if she went out I’d call police and have her arrested. I don’t think that was my best idea but i was panicking and didnt know what to say.
My sister tried ringing memory clinic see if could give any advice or do snything they should be someone there till 8 but it was closed, probably due to everyone doing different hours for covid.
i don’t know what to do. Stay at my house and ring her again soon and hope for best and she settles down. Go over and try sit with her till nearly time for sensor again. Go back and stay with her. Risking her not recognising me and being back in same boat as earlier where i leave or she does??
its only just after 7 sensor doesnt come on till 9 and she’ll be up for hours yet. This is sh@@
Hi. Breathe!!! 1. Have you done the Herbert Protocol??
2 . Any chance of phoning the company to get her sensors on the door earlier? I would say about 5 as that is when she seems to get agitated.
3. Stay where you are. She will get more agitated by you being there.
4 . There is nothing you can do at the moment. As much as you want to there is only so much you can do.
It sounds harsh but your mum doesn’t recognise you so you have to step back.
I find it easier to do things in steps. It makes it clearer...((hugs)))you need them..
My thoughts are with you all.
You have done all you can. If she becomes violent then I would call 999 and ask for help. For all of you
You have done all you can. If she becomes violent then I would call 999 and ask for help. For all of you
