You have an army of us behind you @annielou - we will all be thinking of you all and wishing the very best care decisions for your mum. Let us know how it goes. We are rooting for you, hubby, sis and mum x
Thanks for your replies @Sarasa@DianeW@Pete1@Woo2@Palerider@Bikerbeth@imthedaughter xxxxxxx
I was really struggling not to cry when I posted this afternoon after sis messaged me about SW so I told mum 'just popping to the loo' and I went and had a little cry in bathroom for a minute, couldn't really be any longer in there without mum asking what I was doing so I had to paint a smile on and try not to think about it for rest of afternoon while with mum. Back home tonight I just feel really crappy. Poor mum. I spent some time when we first got in sorting through mums paperwork folder to get answers ready for financial assessment part of assessment and finding bank statements and that was ok, a practical thing to do kept my mind occupied, but after that I just feel like frightened mush. I literally can't remember what happens with mum, what the problems for her are and have no idea what to say or tell her. I'm absolutely dreading friday. When sis turns up mum will be surprised and then later on SW will turn up and mum will wonder why and when SW says daughters have asked for reassessment she will think we're plotting against her and sis has only come down for that.
I hate the fact we have to talk about mum in front of mum, about things she has no idea she does or doesn't do and things she has forgot she did. Its not fair for mum to have to listen to things like that, it will upset and anger her and then when SW has left and mum is upset and angry and thinks we've plotted behind her back she'll be left with nobody but us to comfort her and we then have to try care for her while she is upset with us. I understand SS want to assess mum by speaking to and seeing mum themselves, but I wish they could ask us about what mum is like and what we think her needs are and her check her answers separately.
I'm dreading SW's report coming back, whether it says they think mum does or doesn't require a care home place it's going to be upsetting. I thinks she needs it but I don't want her to.
Today was quite a good day, mum was snuffly again this morning, hadn't been in shower or washed her hair again by look of things, but she was in an ok mood. She mentioned my dad quite a few times today but mostly just things about him liking this, or doing that, not as much of Where is he, Is he dead, like usual, we only had a few of those. She did ask me this morning Is W dead? somebody said it's been 4 years is that right? So I said Yes, and Mum said I can't get it, it doesn't make sense cos I was sure he was with me at christmas.
A bit later mum said I kept crying yesterday, I asked why. Mum said Because I was on my own, I kept thinking nobody wants me, I haven't got a mum, I haven't got a husband, I haven't got nobody. I said you've got me and I come everyday. Mum said I know love but it's like on a night you know, I know I can put tele on but, Then she said It's nobodys fault, my mum lived on her own but our -(her brother) used to go for his dinner everyday. She'd forgot she'd rung me last night but I let it slip a minute later by accident and mum said So did I ring you last night? I'm sorry love. I said It's alright that's what I'm here for. Mum said I thought it was our Andrea. So she'd lost who I was then, but I think she has known I'm me a bit more today, I don't know if that's since I've had my hair cut which mum kept talking about, but she's not asked Where our Andrea is, or said our Andrea's not been has she, or Are you our Andrea, as many times as usual.
She only asked about her house a few times too today, one of times was to ask if her cooker was in kitchen or was it at other house when I was doing the dinner tonight. When I said It's here I'm cooking dinner in it smiled. She's not really mentioned her mum much either today. She mentioned her this morning when talking about being on her own and this afternoon Mum said I was just going to say I'd go visit my mum tomorrow but she's dead isn't she so I can't. I don't know I'm blooming mental. She was ok when we had dinner and left tonight and did call me Andie not long before I left.
Mum rang my mobile tonight about 20 to 10 and asked where she lived, I told her Where you are now and said address. Mum said I thought I live up -- (where her and dad lived) and I'd let my mum live here in this house but isn't she dead. I can't get it am I mixed up cos I thought I lived with W at -- (old house) and my mum lived here but they're both dead aren't they? I said Yes, you live there mum in that house, it's your house. Mum said How come I think I live up -- (old house) I said It's an old memory mum cos you used to live there but it was years ago. Mum said Why do I keep thinking it then if it's old, why don't I know where I live. I said You do a lot of time, it's just on a night when your brain gets bit tired it gets bit muddled. Mum said Oh ok. But isn't my furniture at -- (old house) I said No mum all your furniture is there where you are, it might look a bit different to what you remember cos you've bought new over the years. Mum said Did I? So this is my house? I told her it was and she said Well I can't believe I don't know that, are you sure? I said I was and then mum said Our Andrea would know, so I said I was her and mum asked if I was and then said sorry and asked if I thought she lived there then. I said Yes you're in the right house mum, that's where you should be. Mum said So it's my house? I said Yes, you're in right place, it's your house and all your stuff is in it so you're fine. Mum said Good, I looked and it's my clothes in the wardrobes not my mums.
She asked again why she thought that she wasn't and how did she not know where she lived, so I told her again about brain getting tired and muddling up old memories and missing bits out. I said Don't worry about it tonight, you're where you should be, with your things, it'll all come back to you tomorrow and you don't need to know it all tonight. Mum said Will it? I said Yes and mum said Ok. I said Just relax and don't think about it and I'll see you in morning. Mum said Will you? I said I would be there in morning and mum said Ok love and we said love you lots etc and hung up. She was confused but not as upset as previously been lately.
I understand what you mean about talking to the social worker in front of your mum. It is horrible but not for your mum as she will soon forget or think it was “friend”.
Read through all your posts and make those bullet points so you know what to say. Don’t be afraid to cry/sob , you have been through so much.
If you can get mum into a home, even just for respite she will have someone with her all the time and you can rest!!
Good luck with Friday, really glad your sister can come down.
Dad's social worker had a quick chat with us together then suggested I make dad a coffee and went into the kitchen with me to chat about dad’s needs without him having to listen to it all. He was happy watching TV in the lounge. Would something like this work for you @annielou ?
I don’t how these things work but could sis sit with mum and you go out in garden with SW ? I too feel this way with mum and don’t talk in front of her but when she has her annual review we have to and she has never said anything about it after or been upset /angry , even with my dad when it was him talking so maybe as @Starting on a journey days says mum won’t remember . @Diane w did an example a few posts back so maybe between you and sis you can make one , you were in the process of sending sis info wasn’t you ? It doesn’t matter if you cry Friday , they will see the situation for what it is , just got to get over to them how unsafe mum is becoming alone , if she doesn’t go In to a care facility it is going to become even more demanding trying to keep her calm and you will be moving in before you know it . Sending you huge hugs and all the strength you need Like others have said , you have an army of us right behind you. Xx
When mum had her assessment to move to her care home I told her the manager and customer services manager who turned up to do it were a couple of friends that knew I sometimes visited mum, and had phoned me on the off chance I was there when they happened to be in the neighbourhood. Pre-dementia mum would have smelt a rat but mum had a lovely time chatting to them. It was different to your situation in that mum was self funding, but I wouldn't tell your mum who she is exactly and try and treat it as a few friends having a chat. @Bunpoots and @Woo2 ideas that you take social worker off to see 'something' is a good one, as is a bullet point list of your concerns that maybe sis could do and email over today.
I have a feeling from your last post you are beginning to think that things aren't that bad really and you can carry on. You can't.
Thanks @Starting on a journey@Bunpoots@Woo2@Sarasa xxxx
Unfortunately mums house is so small you can hear wherever you go, we’d have to whisper for mum not to hear and with social distancing that's impossible. If we went out of room mum would want to know why, she hates if she is not 'in on it'. If I go out of room with hubby or sis, or a couple of times at beginning of carer visits I did it with carer, mum thinks we're talking about her and shouts to ask or comes to see. She can hear you anyway unless you whisper.
She's coming in full PPE and mum knows people aren't really visiting at moment so won't think she's a friend popping in, plus at moment neither of us have any who would.
The two SWs who came before told mum who they were and why there. Last one told her her daughters had asked them to reassess her as thought she was struggling more. Mum was not happy with me for saying things about what she did or didn’t do and wanted me to go after SW did. She was really angry with me .
Sis tried to explain later that mum needed help and I couldn’t be there all the time helping her and after that she decided sis was bad one and thought that sis had told mum she couldn’t come to my house anymore, which sis never said. For a while afterwards mum kept thinking she wasn’t allowed to see me or come to my house, then it wore off a bit, but recently she said it again and this time mum said hubby had agreed with sis but I'd ignore them both and kept seeing her, but she didn’t want to come to our house or see us that day.
Last SW said they are assessing mum so she needs to be there. So it needs to be done with mum there when we’re talking about her so we’l ljust have to do it and live with consequences I suppose. Hubby thinks that may be on purpose as they hope you will feel too uncomfortable to say too much negative stuff in front of loved ones. I think maybe its a chance to see both sides so they ask mum and then us same things, but a part of me thinks same as hubby. I suppose sis put things in referral that gave our point of view a bit before she comes.
Good luck for tomorrow . Definitely a good idea to email over concerns/ bullet points to SW today . When mum was assessed I sent info to them first so when mum said that she showered daily, of course she changed clothes etc, they were aware of the truth. You must also stress that for your own health, and hubby's that you can no longer support your mum.. Write that you are at breakdown and that the duty of care is on SS. Explain that your mum will be really angry with the family for asking for assessment and could they say this is an annual check up that people over a certain age have..
Could you ask them to say that they are there to see what help your mum needs if for example you were ill/ on holiday etc so couldn't come over.
Hope it goes well. I remember how tough it is and the guilt I felt, but remember it is what your mum needs, rather than what she wants.
Sending big hugs xx
I understand it’s going to be really really difficult to speak in front on Mum, I agree to email bullet points very clearly.
Note also that it is going to be difficult to speak in front of Mum as it will upset her and you as you do feel guilty that you can’t carry on helping and caring for her....but that you are at breakdown and can’t go on.
Ultimately you will need to reply honestly even in front of your Mum to the questions (please don’t play it down).
You will need to be honest with your Mum if she pushes you and is upset with you, tell her the truth......she won’t likely remember for long and will forget.
But it needs to be said to have any chance of getting your Mum the help she needs......don’t think about the better days think of the bad days.
There is no easy answer to this but your Mum needs 24 hour care.......you and family and visiting care can not provide enough to keep her safe.
Once a Care home is agreed things will feel better, but you have got to loose this guilt, please and remember you don’t have a choice here.....you don’t have a choice, you are doing this to ensure your Mum is safe.
Thanks @anxious annie@DianeW xx
I know it has to be done. Mum gets upset with me for no reason, I suppose I don’t want to give her a reason to be upset with me as well , but it needs to be done so I’ll have to put my big girl pants in and do it. Mum needs help and she’s not going to ask for it so we need to.
Your right @annielou she does need more help and is never going to ask so it falls to you and sis to fight for it for her . You can do this You have done so much for mum but it’s got to the stage where she needs 24 hr professional help , with all the will in the world we aren’t professional trained , well rested carers . Please try and send an email with all the important points and also that you will find it hard to talk in front of Mum, they should understand that , can you stand behind mum so when they ask questions you can nod or shake your head instead ? I do this with mum and did it for dad too , when he was largely economical with the truth . We will all be with you virtually and willing you on .Xx
Have you ever been on holiday and woken up in the morning then for just a moment you think 'Where the heck am I?'
Then your brain/memory clicks into gear and all is well again. I think (maybe) that for people with dementia that brain pathway gets completely broken and the person remains in that state of bewilderment and confusion: why am I here? This is not my house! Or is it...? If this is my house, where is X & Y?
Hi @annielou, it is certainly challenging, what I will say is that you may find it quite distressing and Mum may become a bit agitated at the time. But the next day Mum won't remember the detail or perhaps even the visit. The same as those traumatic days/nights, where we are distraught and can't sleep then when we go round the next day there is no recollection of the previous days/nights events. If you email the Social Worker those bullet points and have a hard copy to hand to him/her in case they haven't read it will help - they should also be sensitive to your Mum and should be trained not to create distress, I wish you all the best for tomorrow.
Im coming to this late, but I agree with everything everyone else has said.
Please stay strong - the SW may try and convince you to continue looking after your mum. Just remember how she gets when she cant remember who you are and orders you out of her house.
You cant keep her safe now, and it will hrder as her dementia progresses.
Ill be thinking of you tomorrow
PS dont agree to top-ups, they can become cripplingly expensive.
OMG Mum kicked off at me and carer this afternoon and wanted us both to leave, shouting at us and opening door for us to go.
It happened because I was talking on my own to carer cos she'd asked about weekend visits for tablets. I took her in kitchen to show her where box and tablets were, I told mum it was just in case she ever had to give mum tablets I was showing her where they were, and mum didn't seem too bothered. She was looking through knitting needles and patterns and din't take much notice. Carer realised that there wasn't a drug sheet in mums folder cos they've never done drugs at mums before so went out to look in her car for one. Mum was sorting through knitting needles and busy so I said I'd pop out check if carer was ok. Thinking I could have little chat in private.
I was trying to tell her quickly why we wanted them to come at weekends, just for tablets and that she's been wanting me leave when I go on weekend mornings but was better later on so we're hoping to avoid confrontation. When we came in mum asked if we'd been talking about her and we said No just looking for a sheet and carer made joke about seeing a good looking fella for mum and mum laughed. I followed carer in kitchen saying needed wash my hands now been outside.
Carer was filling sheet in and making note of number for combination and I was showing her box etc. I went back in room for minute as mums thumb had locked in position (done it quite a bit lately) and and we talked bout that for a minute then I said not be a minute and went back in kitchen.Carer finished sheet and was putting some pots in the sink. I was telling carer bit about mum being upset more recently and ringing upset on evening, not recognising me, and she was talking about when mum rang me during her visit the other week. I said not to feel bad it happens a lot, she even does it when I'm there as thinks I'm not me. Carer was saying mum keeps talking bout her mum and husband and if they're dead. And I said I know it's stuck in her head at moment she can't stop. I told carer she seems to had downturn and was having another assessment tomorrow so we'd see what was said after that.
Mum shouted in once Are you two talking about me and I said No mum just washing our hands and talking bout carers paperwork. But a minute after mum came in shouting YOU TWO CAN BOTH GO!! Go on get out and she opened back door for us to leave. She was shouting we don't come in her house talking about her whispering in corners. We told her we hadn't we were just washing hands and putting pots in sink and chatting. She didn't believe us and for a good twenty minutes she was really angry with us and wanted us to leave. Hubby had arrived when mum was shouting at us in kitchen so me, carer and hubby tried to explain we'd just been in kitchen at same time and got chatting, we weren't talking about her, we weren't doing anything nasty. Mum was adamant we were, she said we'd gone outside to talk about her, I said carer was looking in car and as mum was looking at her knitting stuff I popped out to see how she was doing. She kept saying why were you in kitchen together? We said we were just washing hands after being outside, hubby told her cos we're supposed to after touching stuff outside so don't bring germs in. We said we'd just got chatting cos we like chatting and mum said she was supposed to have come to look after her not talk to me. I said it was ok for her to talk to me for a bit too we weren't ignoring her cos she was busy and we always chat together before I go. Mum said we shouldn't and she was going to ring office and tell them what she'd done.
She was sure we'd been plotting about her and even if we hadn't she didn't want us talking in her house without her and she wanted us all to go. Carer kept trying to say we're friends and you know how much I like to chat so we just chatted while we were in kitchen. Hubby and I kept saying you like carer coming you like spending time with her she's done nothing to hurt you. Carer said I thought we were good friends you and me. Mum said she did like her but not when we were talking about her. She wasn't budging so I told carer she could go if wanted, I'd ring office later and tell them not her fault. She hung on for a while and asked mum if she could stay but mum still said No I want you to go today. We'd tried distracting her by talking bout other things but mum wasn't having that either. After a go at distracting her talking about her knitting, Mum said she wanted her wool which I offered to pass her but mum said No I'll get it myself and made me move so she could get to corner for it. Carer asked again if she could stay again which mum said no to again, so carer said Ok I'll go then, She said I'll see you next week to mum which Mum ignored. Hubby said aren't you going to say bye to carer and mum ignored him. So I said Mum are you going to say bye to angela, she's come to see you and she's not done anything wrong and neither of us meant to upset you but it's rude to ignore her and not even say bye. Mum turned round as carer had stood up and she looked at us then walked nearer to carer touched her arm and said I'm sorry and then sat down. Carer said so I can I stay then and mum nodded and carer said thanks.
We stayed a bit longer trying to guage how mum was going to be with carer and get mum chatting. Carer said We've no need to do cleaning today if you don't want or I can do some and you can knit if you like . We'd been talking about cleaning when carer first came and mum had said she wanted to knit and me and carer had said do some for a bit and then knitting can be your reward which mum had sort of agreed to. When carer said they'd no need to do any now mum said I am knitting but we can if you want. Then she looked at me and said Sorry. I made a joke and said Did you just want to get out of cleaning mum eh. Mum laughed and said no we can do some. We all chatted for a few minutes and then I asked so Are you ok if I leave now and mum and carer said yes. I told carer see her next week and mum tomorrow and we left.
I felt so sorry for carer leaving her wondering how mum was going to be. Chances were once she'd come round mum would have been fine but carer has never seen that side of mum before and she looked really shocked when mum came in kitchen shouting at us and afterwards when we went back in room too. I wasn't sure if she was ok to stay but I'd told her a few times she could go and I'd stay and she'd hung on and asked mum if she could stay so I hope she was. It was quite a shocking incident though.
MC rang while I was at mums and left message saying would ring again tomorrow afternoon so I rang office when I got in and asked her to ring me back today if possible as had meeting tomorrow afternoon. She rang back a bit after. when she asked how things were I told her still not good I told her a bit about incident with mum, her calling on evening, crying about being on own, not knowing where lived, the careline door sensor call the other day, trying to leave my house on her own sunday before last, wanting me to leave on a morning sometimes, saying she'd seen dad, not knowing who I was etc etc. I told her we were having another SS assessment tomorrow and we talked a bit about care and mums medication. She is going to speak to DR tomorrow about mums current medication and if alternatives as she's not really benefitting from them same now but she's on highest dose and not sure if alternatives. She asked me to let her know how tomorrow goes. We were on half an hour again poor womans ears must bleed when I'm on phone but she is really kind.
Mums DC manager rang in between me ringing MC and her ringing back, DC manager said they're hoping to reopen week after next and wanted to know if mum wanted to go back and to tell me about new way of doing things. I said I hoped mum would go back as she had enjoyed it before and I thought did her good but I told her mum had got a bit worse and her medication had been upped recently but still wasn't really helping. She said well we can put her down as coming and when we get finalised date I'll get back in contact and we can see how she is then we can always take her name off list if she's not up to it. W talked bit about how mum had took to it and how things were going to work before we hung up. I thought best keep all these options open and there at moment as not sure how things are going to go yet.
By the time I'd got home after being late from mums, rang MC, then mums DC rang, then MC rang me back, It was almost dinner time and I'd not done any of the housework jobs I wanted to do today. So I put dinner in and did some of them round it and now after posting this I'm going to read last two SS assessments in hope of having an idea what they might ask and try to think what to say. I'd hoped to be able to do this earlier in day and maybe discuss it with sis but it's a lot later than I thought I'd be. I came on here while printing old assessments off and having a cuppa to have a little breather before I start, but to be honest my brain is mush again so I don't know how much will go in. I've copied and printed of @DianeW ideas what to say from the other day so at least I have that as it may well be a case of just answering on spot tomorrow.
I’m sorry you had an upsetting time , I am not saying here that it’s your fault so please don’t think that , just wondering if mum is picking up on your feelings of distress and upset about tom ? Mum mirrors me and if I am feeling anything other than calm and happy she will be the same .
If the worse comes to the worst and you don’t get time can you just print off some of your recent posts and make some bulletin points off that . They really should be able to do assesment without mum realizing too much. Could you try and get sister to distract mum in garden or with some task while you wait at door and have a quick chat with them beforehand ? Can imagine your tummy is in knots tonight , hope you manage to get some rest , notice you have been posting really late some nights . Thinking of you. X
Listen you can really do this, you have had a bad day again and tomorrow will be worse I expect, just be honest to social worker and if questioned by Mum tell her this happens when she gets muddled and everyone is working to make it better for her and to help her...... won’t like it but it must be done.
Mum will probably shout and rant at you, but she doesn’t realise what’s happening to her.....just take it as it comes, if she throws you all out then you can talk to social worker outside, they will understand.
But you must must must stress you can’t keep this up, your sister lives away so can’t help and your at breaking point, and that Mum is tormented and needs 24 hour care.
If mum asks why they are coming tell her it’s to check she is ok and how she is managing living on her own....then be honest how hard it is, don’t be afraid to cry or get angry...it’s to be expected.
Like I said have stuff written down and a copy for you too....bullet points will do, you just need to make them aware Mum will disagree because she has no concept of reality for the most part of the day, her aggression is increasing etc etc etc.
She is unsafe alone ........and needs constant support to keep her safe.
Tell them you know your Mum and even though you hate accepting how your Mum has deteriorated...she needs to be kept safe and visiting carers won’t do that.
Tomorrow is going to be stressful, we are all here, read through this last few weeks posts and make notes for your paperwork.
I so wish I could be there with you....it will be fine.
I always only intend to post a few encouraging words.....but sorry you got war and peace again!!!!
@annielou, no advice, just that I'll be thinking about you tomorrow, and please don't be fobbed off or think that you can continue to manage. You can't and your mum now needs more than one frazzled person and a couple of carers can give.