My friends dad who I have mentioned about fibbing to was at home and coping ok, he went in to hospital and had a blockage removed , he recovered well but they asked his daughter what care she could provide , she said a carer once a day (she was going to pay ) as she worked in London full time , they then had a best interests meeting and he was moved straight to a care home , so it may not be that they won’t ever accept Mum needs care , it might come about in a different way . Not that I want your mum to go in to hospital , sorry that hasn’t come out right , I mean she may go in for something not serious and they see how she is and things might go from there .
Yes @canary before second SW assessment they told my sister about direct payments as maybe an option and mentioned we cud use SS direct payments budget to block some of visits together if preferred but when SW came out she only mentioned them providing carers themselves. When she told us it had gone to brokerage my sister mentioned direct payments and us looking for carers ourselves but she said no. I think my sister said it was something to do with we could only have direct payments if they couldn't find anyone to do mums care. Which they did day after I told SW mum had got AA, although agency found couldn't do times SW had put for mums visits but SW thought close enough. Also couldn't do them because mum had been awarded AA and extra pension credit which took her over a limit for accessible income and we had to pay that to them and couldn't do direct payments then either.
We didn't really push it anyway though as after we thought about them we remembered trouble mum had opening her bank account years ago cos doesn't have proper usual id that's asked for and so we thought she wouldn't be able open another seperate account now to use for direct payment anyway which SS said needs to be a completely seperate bank account they pay their money into.
So we told SW not to organise carers, we'd keep the AA and extra pension credit mum got and arrange mums care visits for her two afternoons a week and pay for it with that, which we do and just pay SS each month for the day centre visits they'd arranged,
I know what you mean @Woo2 x I think that is probably one of only ways SS will decide she does need 24 hr care if has medical need, or emergency which I dread.
In a way I think that's part of reason I was wondering more about respite lately, as well as for a break , and a hope it might help get her out of the loops she was in and getting so upset about until last few days, it was also in a slight hope maybe they could give us a better idea of what support mum might need and what stage she was at. But the more I think about it I doubt they would tell us anything when just there for a week or two and I doubt SS would be interested anyway.
The SW are really not helpful to you, are they?
I think you are doing the right thing trying to get respite to give yourself a break. I know it won’t be straightforward but keep on trying.
Hoping that tomorrow is a good day for you all
I think they would assess her in respite and that may help with SS , there will be a paper trail too , I think you need a break and as you say it might do the trick and break the loop. Hope today has been ok X
Thanks @Starting on a journey@Woo2 xx
No, I am not a fan of SS so far in our dealings with them they've not been much help at all.
Hopefully mum will be feeling a bit calmer and less upset now her sertraline has been increased so hoping that it might help her when she gets in her loops about people dying and her having furniture at other peoples house and thinking she's in wrong house.
We're still looking at CH for respite after lockdown. Sis and I were looking last night and she's going to contact some to ask about top ups. Although we're quite worried mum might deteriorate when comes out as she'll have got used to people being with her all the time and then have to come home and be alone on a night again and we're not sure how she'll cope with that, or how I will for that matter. But we're still going to gather the info, it will probably be a while before we'd consider trying to get mum to go for respite anyway so we can keep thinking about it and have info ready if and when.
Mum was ok yesterday, but I was her friend from arriving in the morning. She asked me a few times things about our Andie and I told her I was me and she either smiled a 'not so sure if you say so smile' or said Are you? Oh right. But she soon went back to referring to me as friend. She was in a good mood though and fine when carer came.
Carer is having a week off soon and when she arrived yesterday she told us they have another carer lined up to come for the two visits that week, she's going to come with current carer and shadow her to meet mum before she comes on her own and carer was asking us if we were happy with that. I don't think mum took much notice, but I said Yes I think that's a good idea.
I think relief one coming with current one is a great idea as mum will spend time with her with current carer who she really likes and who will help conversation and things along, so it'll feel more like a friendly visit and then when she comes on her own mum will have already met her and hopefully won't feel as nervous or strange with a new person.
My sister asked me yesterday about if she should ring agency and ask if could do another afternoon. I said this may be good way to see how mum is with a new person. If she takes this in her stride it's one less thing to worry about if agency can do extra afternoon but would be with different carer to current one. Then all we'd have to worry about is if they had anyone free and how to tell mum we're having another afternoon and carer. 'ALL' lol
They def haven’t been very helpful , I am tempted if I need one to employ one . I too have had that thought .... we want to get away so I was looking at respite but I do have that worry that how will she be in return .. mum doesn’t do anything here though so it will prob make little difference but as hubby said , we need a break at some point and it’s something that we just have to deal with , it can’t be helped . I do think you are right to be aware about it and concerned but what choice do you have Unless sis can come and stay at yours and look after mum (you have to not be at home though or you will not get away from it ) there seems little option . Good that cover carer is shadowing for a week or two is good , gives mum a chance to get to know her . X
Everythings a worry isn’t it @Woo2 trying to work out if something will help or hinder is hard work. Hopefully if your mum comes back from respite and you’re all there with her it will help her settle back in
Worried a bit today if mum will be able stay on new dose of sertraline as it might be affecting her sleep. Yesterday mum told me she’d been awake till early hours thinking about the woman she thinks dad left her for after they got back together (she thinks) and why dad wanted her rather than mum.
Memory clinic rang yesterday to ask how mum was doin on new dose, if had any side effects and if feeling any better. I told her Mum had seemed happier and calmer since weekend but told her about mum saying been awake thinking till early hours. She said to keep eye on mums sleeping which I said I would but I hoped it was a one off as mum said on monday morning she’d slept really well the night before. Memory clinic is going to ring back next week.
Worryingly Mum told me this morning she hasn’t really slept last night. She said at first she was wondering and asking herself where W (my dad) was and why he wasn’t in yet. She got up to check door locked cos he has a key but thought she would leave bolt off cos he can’t get in with it on. Then she was wondering how he slept here cos its a single bed and realised he didn’t live here and realised they split up. She said I’ll kill bloody K (woman dad lived with years after they split up) if I see her. I don’t know why he wanted her and then she went back in a home and he killed himself. Then I was thinking to myself I won’t really cos she’s in a home now and I’m not going to break in a home am I. I was sat laughing to myself, I bet her next door thought I’d lost it.
Mum still thinks her and dad splitting up just happened cos she said. I’ll probably keep thinking bout it for a bit till I get used to it cos it’s still new int it and I were with him over 40 year. (24 years together and split up 29 year ago)
She’d got a lot mixed up bless her. I hope she’s not going to keep not being able go to sleep cos she’s thinking and mixing things up at night. If so they may have to change her dose again.
Mum’s ok today, quite calm but is mixed up. Keeps asking me bout where they (her and dad) lived and keeps asking me where it was and where this house is and keeps telling me Our Andrea might know and does Our Andrea know where I am.
Good the memory clinic phoned to check @annielou, but a shame your mum didn't have a good night's sleep. When they phone back next week, is it worth asking for another assessment from them, or a bit of help in getting social services to be a bit more proactive. I know you don't want to think about care home imminently even for a spot of respite, but honestly it does sound as if your mum would be more settled somewhere where there were people to distract when she gets to worrying about where her furniture is or raking over what happened to her. I am a bit concerned she'll take it into her head to take off to go and find her furniture or to have it out with your dad.
In all of this remember to look after you. You and your husband are just as important.
I really don’t know what else to say that’s not been said, you really are doing a wonderful job, your keeping your Mum from being in care by the support you give her....you are keeping a lid on everything from blowing up.
And as long as you are happy to continue putting all the time you do in, then that’s all that matters, I just want you to remember to think about you and your husband too.
Remember to tell memory clinic about how Mum is on her bad days too, they need to know things are not good, and how much she has deteriorated and the difficulty it is for you too......don’t be blindsided by the good days.
Just think if your Mum didn’t have you at all, where would she really be today?
I think you need at least 2 weeks respite, completely away from any caring or being involved, and I hope it’s sooner rather than later.....not all care homes have had the virus.
You are a very special person and sacrifice a lot to care for your Mum, and I totally understand that you want to do it, and are happy doing it, but please be honest with yourself about when you need the help, and when your Mum needs more care than can be provided by family and carers alone.
Thanks @Woo2@Sarasa@DianeW xxx
I'm so hoping mum starts sleeping ok and isn't going to be up worrying and mixed up. On her increased sertraline dose mum does seem calmer and less upset when she is questioning and mixed up in the day but if side effect is that she's not sleeping because caught up in questioning mixed up loops over night then that's not good. I'll keep an eye, or ear out for if mum keeps saying she's not slept properly so I can let Memory clinic know when rings again next week. Fingers crossed it doesn't keep on as that's not fair for mum.
I don't know if memory clinic can do another assessment, I assumed once they diagnosed mum that was it assessment wise.
I did tell her yesterday a bit about mum not knowing who I am a lot of time, or that I'd been there and what she was getting mixed up about and how she gets in loops of questioning for hours. That she had seemed calmer and happier since weekend and less upset and more accepting when she was questioning things. I didn't know if I was supposed to be telling her that sort of thing or just saying if mum had had any side effects.
She suggested if mum was mixing me up and not recognising me now maybe we could try making a life book with photos and maybe comments so mum could see us progress and age over years to help bridge the gap. And maybe use a notice board or something with dates on and put that I'd been so she could see I'd been. I said we could try that, mum has photos of us but they're all mixed up and often will say recent photos of me are 'friend' so in a date order type book with names might help. I said not sure about writing down I'd been though as mums not good with remembering to look at things wrote down and in past we did try leaving note saying been and when going again and mum either forgot look or rung up asking who had wrote note but didn't believe it. But maybe could try it again.
Mum was ok today mood wise but besides telling me she'd not really slept last night due to wondering where my dad was and thinking about him and woman she thinks he left her for and about them as a couple. She said she'd also thought she'd lost her wedding and engagement ring and had been worried about that. I suggested if she's thinking and wondering about things on a night to write it down to look at in the morning and then she can think I don't need to worry about that now I'll sort it tomorrow. She thought that was a good idea but really I don't think she'll remember to do it as I've told her lots of times in past but she hasn't really done it only a few times. I helped her find her rings where she usually keep them this morning and came across a pad and pen while doing it so I left them on bedside table just in case.
On and off all day she's asked quite a lot about our Andrea, where she is and if she knows where mum is. Asked me as Our Andrea where I live and if she's been to my house, how she gets there, how long I've been married etc, when did she last see me. She's asked a lot about when her and dad lived together, where was it, where is this house, did he live there with her. Lots about when and how they split up and when he met K and where they lived. What happened to her furniture from her other houses etc.. She has been calm about it and sort of accepted what I say without argument just said things like Oh I thought it was recent or I didn't know that and has also said quite a bit how weird or odd it is that she can't remember these things. She's not gone on continuous loops for ages today, mainly she's just asked a few questions at a time, then left it a little while before asking them again, or asking one of other questions so it's not been as full on questioning but still on and off most of time I was there.
I am pleased that the meds change has meant your Mum has been calmer and you have had an ok day. I hope the not sleeping is only a short term problem.
I did create a photo book for Mum with limited photos in it - so about 6 photos of Mum at different significant ages, the same for me and brother then a couple each of grandchildren/nieces, her Mum/Dad, aunts/uncles some significant friends and places. I found then I could use the photos easily as a reminder of who was who. Although we did not create the album together we had spent the year going through her old photos and labelling them up. I hope it might help you and your Mum.
Wishing you an OK or good day and some time for you this afternoon
I didnt do an album for mum, but I did try a whiteboard, which got the same response as your mum. Im not sure how well notices/whiteboards etc work. My experience is that they either get forgotten or ignored.
If your mum starts worrying a lot about her rings it might be a good idea to take them back home with you for safe-keeping. Then when she starts worrying you can just say "oh, Im looking after them, mum, to keep them safe" My mum worried constantly about her rings and was convinced that they had been stolen - it seems to be a common thing with women.
We never tried whiteboards with mum as her eyesight was so bad she wouldn't have been able to read it. Mum used to use a very basic calendar and circled things in thick felt tip, but after a while she lost where she was in the month as her sense of time totally went. Photo albums would have been the same, though mum did like the album my husband had made about her 90th birthday party. I appear to have lost that in the move to the care home, though we could reproduce it. I can see making an album might be a good activity, and give you a chance to keep it in your mum's mind that you are Andie and not that woman. Maybe worth a whirl.
Certainly when they phone back, give them the unvarnished truth, including how you are feeling.
Thanks for your replies @DianeW@Bikerbeth@canary@Sarasa xxxx
Calenders, whiteboards and notes might be worth a try but I do doubt it will work for long if at all with mum. We have tried notes on the mantelpiece, notes on the side of fridge you can see as you walk in kitchen, notes at side of bed, mum sometimes writes down I've been and the time I'm going next day after she's rung me to ask but she can still ring again ten minutes later to ask same thing. All notes have either gone unnoticed or she's forgot about them since last saw them and rung up asking about what's on notes or forgot to do what it says. On Wednesdays I've been leaving her a note with time and channel of programme she likes on, I've stood it up on mantelpiece facing her, left it on seat next to her and last time left it on arm of chair right next to her and showed her it just before I left. She knew it was there and there was only 3/4 of an hour before programme started but Mum forgot it each time and didn't notice it till a lot later so missed the programme. I didn't bother leaving note yesterday just told her about it before I left.
I bought her a day and time clock for her kitchen ages ago as when she used to cook her own dinners she would ring me up to ask if stuff was in date as she didn't know the date. She also constantly rang to ask what day of week it was when she put tele on so she knew what page to look at in tv guide. The clock helped for a little while with the food but then she forgot to look at it and it never helped with day of week for tv guide as she was in living room then and didn't think to go in kitchen and look at clock. I think the same will happen with whiteboard and calender saying I've been to see her, she'll be ok if thinks to look at it and understands what it means, but most of time she'll forget to look at it, or wonder who wrote it as she has before.
The photo book might be useful for me to get out and show mum when she says I'm not me and I don't look like our Andrea but I doubt she'd think to look at it or it would help her understand if on her own. I think I'll start going through my photos and see what I can find of us all and pick a few.