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

[TNJJ]

Thank you for your replies @Starting on a journey @Woo2 @Sarasa xxx
I feel so bad for mum being on her own, she's so confused and I'm sure she doesn't understand why she is where she is and why she is on her own. Even when I'm there she's confused if she lives there and where dad is and also who I am but at least she's not alone. I feel like the worst person in the world for leaving her alone tonight. I don't want to go back to staying there on a fold up bed again, but she doesn't want to be on her own and I don't think she should be. I'm not sure how much help me being there would be as she still gets confused and upset when I'm there in the day but at least she wouldn't be alone and I'd know she was safe. I don't know if I could cope again I'm barely coping now but there seems no alternative.

Hi. You need to step back . Otherwise your mental health will suffer more.
Have you booked extra time with the carers yet? Maybe get them to come in the morning to give the medication so you get some time off.
Please keep a record for SS as I think your mum needs more care than you can give.
Keep going with LPOA.
As much as you want to “fix”(I do too)you cannot. Please think of you and hubby. You deserve it?

 

[Starting on a journey]

I echo @TNJJ , do not go back!! Mum needs more help than you can give her. You will be a wreck within days (remember none of us are that good at the moment), and then when you are in hospital or bed bound, who will look after mum?
It sounds like you are pretty near your limit now but love keeps you going. Speak to the memory clinic today and see what they say. Good luck thinking of you today.

 

[Pete1]

I don't want to go back to staying there on a fold up bed again, but she doesn't want to be on her own and I don't think she should be

Hi @annielou, sorry to hear about Mum, it must be seriously affecting you, I'm sure you are on tenter hooks just waiting for the 'phone to ring. I think if you go back and stay you probably won't get much sleep, I think your Mum is probably restless through the night until she finally manages to fall sleep and it won't make any difference to her confusion, that will still happen. I think you know that isn't the answer. I guessing you are already struggling to sleep with the anxiety that the 'phone can ring at any time - it really does affect your sleep pattern, which in turn really impacts on you too. It does sound as though Mum is in the next phase as, sadly, her behaviour does seem consistent. Your Mum and you need significant additional support, I hope the Memory Clinic can put some pressure on the Social Worker to progress Mum's care needs. I hope you get some support today. I get where you are at, it's an impossible situation to manage on your own. All the best.

 

[Palerider]

I empathise @annielou -I felt very guilty towards the end leaving mum alone while I worked. In the end it was too much for her to cope with, no one to reassure her or guide her on what she needs to do. As others have said, the situation is becoming one of needing more from you. But its also important to think about how this is for your mum too, knowing that even though you are trying your best its not enough for what she needs now, we have to think how a pwd may feel when alone and lost as well as ourselves. Lonliness becomes a big problem and can be distressing for a pwd. Its was a big turning point for my own mum, when she stopped being happy on her own and became very unhappy.

I hope you manage to get more support from the SW and find a way forward for both of you.

 

[canary]

Please dont do it @annielou . You are already heading towards a breakdown.
You have to get back to SS and tell them that you cannot carry on. I know that they said in the past that there was nothing more that could be offered, but things have changed.

 

[Woo2]

Oh @annielou i feel for you hugely , I don’t know what to say as there is no easy answer here . ?? Thinking of you all . Take care Xx

 

[Sarasa]

As we've all said don't go back to staying with your mum @annielou. It won't make her more settled and will just make you ill and have a detrimental effect on your marriage.
I think at the back of your mind you think there is something you can say or do that will help your mum see she is in a muddle over things, that she'll suddenly say of course your my daughter and I really live in this place and that all the things she frets about were sorted years ago. Unfortunately that won't happen. I think if she was in a home with people to distract her at all times of day and night and lots going on she'd still be confused but things will become calmer, and you can turn back into her daughter.
You are throwing everything you've got at this, and it is heartbreaking that she thinks you are not there for her.
You just have to be really tough and tell social services today you can do no more. I'll lend you my hard hearted/hard headed persona if it helps. It's the way I've got through mum moving into care and my brother being ill this year.

 

[annielou]

Thanks for your replies I really appreciate them when you've all got so much going on yourselves.
I just want my mum to feel safe and loved and feel like I'm not doing that for her now, but I'm all there is. She's mixed up and confused when I'm there but she's more so when I'm not and also seems scared. I'm not sure if me being with her all the time would work either as sometimes when she doesn't think I'm me she wants me to go so our Andie can come, or thinks I've out stayed my welcome, or I need to go home to my hubby and when I don't go that gets her agitated and angry and upsets her in different way to now but she's still in a state.
I think on nights she's scared and crying like last night she'd be relieved if I said I'll stay with you, whoever she thought I was, but on times she's more with it she'd be asking me when I was going home and saying she doesn't need a babysitter, but then if I went I might have to come back later when she starts worrying where my dad is or upset because on her own. Also if I'm there when she's upset but she doesn't know I'm me she'll still be upset that our Andea has abandoned her, and as I sometimes flick in between 'friend' and me that could just make her more confused, but at least she wouldn't be alone.
We decided to ring memory clinic a couple of week ago cos mum was getting agitated and angry more and was ringing me up on an evening after I left annoyed I'd not been and was more confused what had happened to her mum and my dad and we hoped that increasing her sertraline would help settle her down and fell less anxious. Which it seems to have done in the daytime, she's not as agitated and angry and calms down quicker when she's anxious but on an evening she seems to be more upset and it's gone on into bedtime too some nights. When she rang late saturday night and when she rang in evening yesterday she was sobbing down phone bless her.
I don't know what to do, SS don't want to help and at minute sis and I don't really want mum to go in home in current situation either but I do think if she could settle, which not sure she would, it could help her to have people there.
Other than that it's just me, I don't want to go back to living out of a carrier, sleeping on a fold up bed that is quite painful after a while and not being able to live in my own home with my husband and never having a moment to myself. I think mum might still be confused with who I am as more often that not I'm 'friend' or a friend named Andrea now so she'd probably often wonder why I was there and wonder where our Andrea was and I couldn't reassure her I am me and do see her which could cause more upset and confusion but I feel a bit like I use that as excuse because I really don't want to stay there.
Mum could come here so she's not alone, but we don't really want that or think it would work very well either. At first last september when she was upset in night we brought mum to stay here a couple of times and I got impression she would have been ok to stay here with us but we weren't ready for that then and I was worried about her on stairs then as was quite unsteady and had lost a lot of weight. So next time she was upset in night I went to hers to stay with her and ended up there for 3 months. When we came to stay at my house on Christmas eve so I could be at home for christmas she didn't settle at all. Partly cos she thought this was 'friend's house and she wanted to go to our Andreas, or go home to her house so Our Andrea could come. I think if she came here now she would be unsettled, she is by late afternoon when she comes for day and I don't know if she moved in if that would continue into night. She's already confused about where she lives though and doesn't think lives where she does so there may be no difference there. Hubby doesn't think we could cope with her living here now and I don't think we could either. I'm on constant alert for her on stairs as although she's stopped losing weight and is eating properly now and is stronger now, she's still not great on stairs and I'm scared she'll get up in night and go wrong way and fall down them so all day and night I'd be on alert for her on stairs as even in day if I leave her for a while to do something she comes looking for me.
I feel stuck, poor mum is confused and scared and I'm putting off helping her because it's hard for me. I really hoped the tablets would help her worry less and get less angry, anxious and upset as currently that seemed only alternative to me going to stay with her but they aren't working as well as hoped and nothing else is on offer.

 

[TNJJ]

Thanks for your replies I really appreciate them when you've all got so much going on yourselves.
I just want my mum to feel safe and loved and feel like I'm not doing that for her now, but I'm all there is. She's mixed up and confused when I'm there but she's more so when I'm not and also seems scared. I'm not sure if me being with her all the time would work either as sometimes when she doesn't think I'm me she wants me to go so our Andie can come, or thinks I've out stayed my welcome, or I need to go home to my hubby and when I don't go that gets her agitated and angry and upsets her in different way to now but she's still in a state.
I think on nights she's scared and crying like last night she'd be relieved if I said I'll stay with you, whoever she thought I was, but on times she's more with it she'd be asking me when I was going home and saying she doesn't need a babysitter, but then if I went I might have to come back later when she starts worrying where my dad is or upset because on her own. Also if I'm there when she's upset but she doesn't know I'm me she'll still be upset that our Andea has abandoned her, and as I sometimes flick in between 'friend' and me that could just make her more confused, but at least she wouldn't be alone.
We decided to ring memory clinic a couple of week ago cos mum was getting agitated and angry more and was ringing me up on an evening after I left annoyed I'd not been and was more confused what had happened to her mum and my dad and we hoped that increasing her sertraline would help settle her down and fell less anxious. Which it seems to have done in the daytime, she's not as agitated and angry and calms down quicker when she's anxious but on an evening she seems to be more upset and it's gone on into bedtime too some nights. When she rang late saturday night and when she rang in evening yesterday she was sobbing down phone bless her.
I don't know what to do, SS don't want to help and at minute sis and I don't really want mum to go in home in current situation either but I do think if she could settle, which not sure she would, it could help her to have people there.
Other than that it's just me, I don't want to go back to living out of a carrier, sleeping on a fold up bed that is quite painful after a while and not being able to live in my own home with my husband and never having a moment to myself. I think mum might still be confused with who I am as more often that not I'm 'friend' or a friend named Andrea now so she'd probably often wonder why I was there and wonder where our Andrea was and I couldn't reassure her I am me and do see her which could cause more upset and confusion but I feel a bit like I use that as excuse because I really don't want to stay there.
Mum could come here so she's not alone, at first last september when she was upset in night we brought mum to stay here a couple of times and I got impression she would have been ok to stay here with us but we weren't ready for that then and I was worried about her on stairs then as was quite unsteady and had lost a lot of weight. So next time she was upset in night I went to hers to stay with her and ended up there for 3 months. When we came to stay at my house on Christmas eve so I could be at home for christmas she didn't settle at all. Partly cos she thought this was 'friend's house and she wanted to go to our Andreas, or go home to her house so Our Andrea could come. I think if she came here now she would be unsettled, she is by late afternoon when she comes for day and I don't know if she moved in if that would continue into night. She's already confused about where she lives though and doesn't think lives where she does so there may be no difference there. Hubby doesn't think we could cope with her living here now and I don't think we could either. I'm on constant alert for her on stairs as although she's stopped losing weight and is eating properly now and is stronger now, she's still not great on stairs and I'm scared she'll get up in night and go wrong way and fall down them so all day and night I'd be on alert for her on stairs as even in day if I leave her for a while to do something she comes looking for me.
I feel stuck, poor mum is confused and scared and I'm putting off helping her because it's hard for me. I really hoped the tablets would help her worry less and get less angry, anxious and upset as currently that seemed only alternative to me going to stay with her but they aren't working as well as hoped and nothing else is on offer.

Ask for more carer visits. You organise it yourself don’t you? So try to get a couple of more in.

 

[canary]

Im going to be blunt here and I hope I do not offend you andrea, but you have convinced yourself that SS wont help, that a care home wont help, that only you can help (but you know deep down that you cant).

I know that the SW said that there was nothing else to offer, but how long ago was that? This is not written in stone. Things have changed. Many of us have had to push for more support, but you dont seem to want to. Because of what the SW said you now seem to feel that it is not possible at all. Your mind and body is saying "enough", but you are not listening - you seem to think that you have to deal with it yourself. Its not true. You are not "all that there is". Im sure your mum would settle in a care home with people constantly around.

Please forgive my lecture. I am truly worried about you. I can almost see the crisis looming.

 

[Starting on a journey]

@canary is spot on!
You need all your energy to fight the SW, ask for another one; more senior; more experienced with PWD...your mum is deteriorating before your eyes and you need to act.
I think that with all the testing they have done care homes are probably as safe as they are ever going to be. Visits are starting to be allowed outside so I would put all my energy to social services to get them to take responsibility for her, even just for two weeks respite care....Then you would have the opinion of the homes carers to support you.
Might be worth ringing the Alzheimer’s society helpline to see if there is any help in your area with advocacy...explain that you find it difficult to deal with these people, an independent advocate would have challenged a lot of what was said last time. It’s hard to challenge when it’s you and your mum involved.

 

[Rosettastone57]

I agree with others, the best place for your mum is in a care home. Nothing will change unless you push SS . It saddens me that I might be reading the same thread in 6 months time with the same advice and nothing further has happened unless some sort of crisis has occurred. You need my invisible suit of armour that I used to deal with officialdom to stop the draining knock backs . I'll send it right over.

 

[imthedaughter]

I agree with @canary - @annielou the only difference between you and I is that I moved across the country for work, so when Dad got poorly and confused like your mum is, I couldn't do what you are doing. Had I stayed in the town I grew up in, we could be twins.
My dad is the same, as you know, he had his ideas and confabulations and I'm not sure where he gets them from (although I am blaming the TV now) and he gets up in the middle of the night not knowing where he is or thinking it's breakfast time. But because he's in a home there's always someone to reassure him and make him a cup of tea, a slice of toast and he goes off to bed, and I only hear about it when I call the home to check in with him, and sometimes I have a nice chat with dad.
I want this for you too. It's not perfect but I can have a life with my husband, and work and not think about Dad 24/7.

 

[DianeW]

I absolutely agree wholeheartedly with above posts, you can’t help your Mum anymore...no matter how hard you try, it’s impossible now and she needs a Care home.

I don’t think visiting care will be enough anymore, and if you moved back in you would be in crisis within a few days.

You need to accept this and I know it’s hard I really do......but you need to shout and rant and stand up for your Mum now, that’s how you can help her now....

I think your Mum would thrive in a care home once she had settled in, I really do, I don’t think she is safe now to be on her own.

 

[Woo2]

In the meantime could you change the time you give mum sertraline ? Could you give one in morning and one late afternoon , or give it to her in the evening ? Apart from that I have no ideas, I agree that mum does need more care now but I also get how you feel , it’s a very very hard decision to come to . I mean this nicely but your sister has no idea how hard it really is as she only saw it for a day or two at a time and mum has deteriorated since then so if you as main carer have done as much as you can then there is really only option available . You will need to scream and shout (not literally ) to get mum help , maybe even get a private SW to help . Sending you big hugs ? X

 

[annielou]

Bless you all for your replies xxxxxxx It really does mean a lot that you posted them. I agree we can't go on like this much longer, it's not good for mum and it's not good for me or hubby either.
I spoke to memory clinic this afternoon and I said things weren't good. I told her mum had been up again on tuesday night last week thinking about dad and K and had got up looking for him, she'd not gone out, just checked door and took bolt of so he could get back in because he had a key. Then she'd realised he didn't live there and she'd been upset about it and wanting to go get K. I told her she'd rung in tears at 5 to 1 on saturday thinking she was all alone and upset because my dad and her mum were dead and she didn't see me. That she'd rung yesterday a couple of times and been in tears again thinking I'd only seen her for 5 minutes first time and then next time asking where dad was cos thought he lived with her again.
I told her she has been coming up with things she thinks are true but aren't like living at her mums and her brother having lads in and that she'd had a bill for my uncles house, who had died before I was born, from dad and K living there when she hadn't. I said that she is calmer quicker now when I say it's sorted mum or whatever but she will go back to it as she forgets what she and I have said but she is calmer in day now and less angry. I told her at night though mum's getting really upset and its now seems to be moving up to bed time some days too. I told her a bit about how she used to ring after I left to see if I'd been and been angry at times but had been ok at bedtime for a while but now she wasn't.
I said mum hadn't been cleaning as much for a while and now didn't really suggest doing anything herself and got angry about it when I did. I said we'd gone down to about once a week for a bit and now we were lucky if she let me do something once a fortnight and then when she agreed she switched after a little while and would shout at me to go and threaten me and say I'd come in telling her it's dirty which I don't approach it like that. I said she had let cleaner do some last week but she tried put her off too at first and usually, to both of us, she'd say it didn't need doing as there's only her, or she'd say she'd done it and could get nasty about it. I said last Monday she dusted and hoovered room on her own so I was hoping sertraline had motivated her a bit as it had when she started on it before. It got her doing more then, but apart from letting carer clean and helping her after a bit of persuasion last week she has been same since as before, not wanting do anything other than wash up and put washer on. I told her she wasn't going in shower as much now and wasn't washing her hair as much too, though she had washed it again today cos she forgot did it sunday and thought she'd not done it.
She said she would talk to doctor tomorrow and see what they suggested but she was sorry didn't have an answer for me. She'd see what they could come up with for us but she didn't know if they could. She'd made comments as I was talking about mum not retaining things now and mixing times up and being upset and had made notes to relay to Dr. She said they expect it to deteriorate over time but unfortunately they can't stop it as the science isn't there yet. But she'd see if there was anything they could suggest and get back to me after she'd spoke to doctor tomorrow. She was really nice and sympathetic even when I was rambling on.
I can't remember exactly what I said as I was emotional and I got upset and ended up crying towards the end which was embarrassing. She didn't say if she could tell I was crying but she did ask me if I had any support so I think she'd probably noticed. I told her I had hubby whose ear I talked off and I was on a forum which I didn't know how I'd manage with out. She said that was good and mentioned the making space carer support service and local alzheimers and dementia charity for some peer support. I told her SS had referred me to making space who had helped us fill in AA form and a carer grant for me which I've not spent and told me about coffee mornings they held but I don't have time to go to and they've stopped now anyway. She said they are still on phone she thinks so I could ring them if I need to. She told me she'd ring me after she spoke to doctor and to take care of myself. I felt a bit daft as I was supposed to be talking about mum and she ended telling me to take care of myself.
So we'll see what she says tomorrow, tablet wise I'm not sure what more they can do so she may well not have much news for me tomorrow but I'll wait and see.
Mums not been too bad today although when I arrived this morning she told me I could go away. I asked why and she said you can go away cos you never come. I told her I go everyday which she didn't believe and then I said I was here yesterday which she still didn't believe and I probably shouldn't have said it but I said I do mum, I was here yesterday and when I went home last night you rang me upset I'd not been and when I told you I had and what we'd done you were sorry for saying it. Mum thought a moment and said Oh well I'm sorry then love. I said it's ok and went off to wash my hands as normal and came back her tablet and water and a smile and Mum said sorry again, I told her not to worry about it and then got chatting about other things.
She was ok rest of time I was there, she even called me Andrea till lunchtime but then I switched to 'friend'. Carer came at 2 with one who'll be coming next week so I told mum why she was here and so did usual carer and mum seemed ok with it. We chatted a bit till hubby came for me. Usual carer was telling relief one what mum likes to do and what she tries do when here for mum. She told me they'd cleaned last week and I said thanks , carer said I did this and yer mum did that didn't we (mum) and mum said we did and I've done it now. So I don't think she was in mood to do any today. She looked okay talking to both of them when I left so I hope she was. Be interesting to see what if anything she says tomorrow about it.
I'll see what if anything memory clinic can suggest tomorrow and if mum goes on okay with carer next week sis can ask if can do extra afternoon. Although if still getting upset on evening that might not help much and will see what else we can do. Sis mentioned she may come down for few days soon which we thought might not do cos of virus but if she can I may let her and then we can talk about mum and LPA and respite and maybe see what SS say again.

 

[Woo2]

I think that’s a very good idea for sister to come down and give you a break and you can have a good talk , sorry memory clinic couldn’t offer much help , they do at least know how things are though and will have made notes hopefully . I hope you manage to get some decent rest tonight ? X

 

[canary]

I expect it was hard telling the memory team all of that.
Im glad you managed to do that, though, and it sounds like she was really listening and will start to get the ball rolling.
xx

 

[annielou]

Thanks @Woo2 x
Hopefully they'll have a suggestion tomorrow but I suppose there is only so much can do medication wise. Sis said today if nothing to help maybe we can go back to SS again. Think I'll need all those invisible suits of armour etc I've been offered today for that. ?
Hows things with you?

 

[annielou]

Thanks @canary x She was very good and sympathetic and said she'd made notes of what I'd said to tell Dr and said she would get back to me when spoke to them.