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

[annielou]

Thanks for your replies xxxxx
I agree I do think mum needs full time care and I feel incredibly guilty for leaving mum alone overnight because I don't want to keep staying there overnight and also because when I'm with her and she is confused I seem to add to that confusion. Also that when I'm upset because I'm finding it difficult to keep up with what shes saying and asking I can't always contain it and my upset and stress shows and that doesn't help mum.
I don't like the idea of mum going into a CH but I do think she needs one, I think she needs someone with her all the time, somebody better at distracting her when she is sundowning and worrying, rather than me who seems to actually remind her shes confused because she cant work out who I am.
But SW who reassessed mum a few weeks ago says mum doesn't need a CH and SS will only provide 3 x 30 minute visits a day for prompting to eat and take medication and a day at day centre a week and 4 weeks respite a year.
BUT again, and this is the biggest BUT, SW also says thats all dependant on mum accepting those things and if mum refuses them or wants to leave when goes to day centre or respite then she can and they will be withdrawn. Mum has told her that she doesn't want them but sis and I asked SW to put them on careplan and we'd try to get her to try them.
Mum told her and last SW that she doesn't want carers and doesnt want to go to day centre and wont go in a home. When she told last SW who assesed her in october that she wouldn't let the carers in she didn't put them on the care plan but this one has but has said if mum keeps refusing them they will remove them from plan.
So I'm stuck and more importantly so is mum

 

[Starting on a journey]

You feel stuck with no way out, that is very clear. Now you are ill, all of us living with a PWD know the shakes but when it gets that bad you can’t sustain caring and your health. Go to your GP ASAP, call 111, get a doctor to visit you when you are with your mum, they will see the problem immediately. If you are taken Ill who looks after mum? I am sure your sister helps but she can’t come full time.

Look after yourself!

 

[Woo2]

I don’t know the answer but I do know it’s not your fault and I understand why but you mustn’t feel guilty , you have done everything you possibly can and more . You deserve and need some time away from the situation . Please be kind to yourself . It’s very hard to know how to cope and you have had no training , you are doing the best you can . SS will wait for a crisis I feel . If you ring them and tell them you cannot cope and are at risk of carer breakdown then they will have a duty of care to a vulnerable adult and hopefully will have to do something . Would getting an independent mental capacity assesment help ? Maybe others will be advise on this . Mum has failed 2 recently so is deemed to have lost capacity . We had a private psychiatrist perform them. Sending more hugs @annielou , you are doing a great job in a very hard situation . Take care . X

 

[Woo2]

I know it’s short notice but could your sister come and take mum to day centre ? I feel that mum may need more than that now but it might be a start and gives you some time away . X

 

[Sarasa]

Hi @annielou, social services have to go through all the steps. From what you’ve said your mum has no capacity to make decisions, however the only way SS will see that would be if you stepped right back. I think you should phone them say you are ill and won’t be able to visit her for a week and leave them to sort it out. My mother was much less confused than yours when she was deemed to not be able to make sensible choices about living arrangements.
It very very tough, but if you don’t do something now you will be out of action for much more than a week.
Bash that guilt monster over the head if you can. More {{{hugs}}}.

 

[Pete1]

I do think you need to go back to the Social Worker as clearly they are operating a 'tick box' approach, and there are cases that need to be fast tracked (rather than trying home care 3 visits, then 4 visits etc) on the basis of safeguarding and your Mum is one of those cases @annielou, Worst case scenario, I think they offered respite care previously, take that offer up and at least you will have some breathing space and they will also be able to assess whilst Mum is in the home.

 

[Palerider]

Thanks for your replies xxxxx
I agree I do think mum needs full time care and I feel incredibly guilty for leaving mum alone overnight because I don't want to keep staying there overnight and also because when I'm with her and she is confused I seem to add to that confusion. Also that when I'm upset because I'm finding it difficult to keep up with what shes saying and asking I can't always contain it and my upset and stress shows and that doesn't help mum.
I don't like the idea of mum going into a CH but I do think she needs one, I think she needs someone with her all the time, somebody better at distracting her when she is sundowning and worrying, rather than me who seems to actually remind her shes confused because she cant work out who I am.
But SW who reassessed mum a few weeks ago says mum doesn't need a CH and SS will only provide 3 x 30 minute visits a day for prompting to eat and take medication and a day at day centre a week and 4 weeks respite a year.
BUT again, and this is the biggest BUT, SW also says thats all dependant on mum accepting those things and if mum refuses them or wants to leave when goes to day centre or respite then she can and they will be withdrawn. Mum has told her that she doesn't want them but sis and I asked SW to put them on careplan and we'd try to get her to try them.
Mum told her and last SW that she doesn't want carers and doesnt want to go to day centre and wont go in a home. When she told last SW who assesed her in october that she wouldn't let the carers in she didn't put them on the care plan but this one has but has said if mum keeps refusing them they will remove them from plan.
So I'm stuck and more importantly so is mum

Its so difficult especially when the SS won't play the game and also hard to keep going with this as well.

I guess the first port of call is carers coming in to the home, but as you say your mum refuses them (mine was the same, she'd rarely let them in). But they weren't withdrawn and I made it clear that there had to be a visit even if it was just a wellbeing check (which of course they don't do normally). I think the SW is going to have to relent here a little as it sounds like she is pushing the rules to the limit. Loneliness and isolation are a reason for a CH, its obvious you can't be there all the time as well.

I sometimes wonder if the SS push these matters because of being unsure about capacity? Mums SW was filled with dread at the prospect of placing mum in a CH (mum having been so difficult about everything), a CH was agreed finally as mum had got worse and started to wander as well as becoming anxious about being alone. In the end you have to make the decision for someone with dementia, it may be that you have to wait until things get worse and the sense of your mums awareness has changed. But how long do you wait for? I would be pushy @annielou and contact the social services manager and make it clear this can't continue, your mum is confused/disorientated and can't be left alone anymore -its unsafe.

 

[Jaded'n'faded]

I keep on reading your stories and think to myself that was me not so long ago. I don't see how you can do this for much longer @annielou and your poor mum needs a way of being able to just be who she is now. Its scary and horrible and a whole load of things to us, but to the person with dementia its a new comfort and a new way to see the world they live in in a new environment. I can understand your own anxieties, but is it fair to leave your mum medicated and alone, to impose your own sense of anxiety on your mum? I am being blunt but maybe its time to move on from where you are and let your mum be who she is in the safety of a CH

That's a very insightful statement.

You can't go on like this any longer. Your poor mum isn't suddenly going to have a lightbulb moment and understand who you are and who the 'friend' is/was. You can't continue to treat her the way you used to before dementia. She really is a different person now, hence the need for her to move to a CH and live fully within her confused, twilight world. It's the right place once a person gets to this stage. It's fairer for them because there are staff there all the time.

I know it sounds cruel to say but you can't help her now, you can only watch the dementia progress.

Perhaps it is time for you (and your husband and sister) to step right back and force SS to take over. Tell them you can no longer cope/deal with this and that you won't be able to care for your mother now because you are seriously ill as a result of what you've done so far. Get those care visits set up but inform SS that if your mum refuses, you will not be stepping in. Tell your mum that too - that you are too ill to help her so she must accept the carers. She won't remember and won't agree to it (probably) so this will force a crisis. As I said, you need to make it clear to SS that this WILL happen and they need to be ready to take action. They have to try carers first, even if the person refuses. Unfortunately this is the only way (i.e. when the carer visits fail) to get your mum into a care home.

I really feel for you (and sister and hubby!) because you've all gone above and beyond... Please take care of yourself now. Your pre-dementia mum would be horrified to see you suffering like this. Wishing you strength because it isn't easy to do this - goes against everything you know and believe about caring but it's the only way...

 

[Bikerbeth]

What an incredibly impossible situation you are in. I cannot offer any additional advice to what has been suggested before by those with more experience. just want to send you lots of virtual hugs and let you know that people are listening even if we cannot do anything practically

 

[annielou]

Thank you for all your replies xxxxx
I really am grateful for all the advice and support and virtual hugs I have had on this forum on my posts and in messages from fellow posters and moderators too. Especially as you all have so much going on yourself that you are dealing with. x
I really don't know where I'd be without posting on here. I'm not good at talking to people I don't know well, in fact even with people I do know well, I worry all the time what people think of me and what I've said and done, going over and over conversations afterwards and although I still do that here, I feel safer behind the keyboard. I still worry about the same things, if I should have wrote what I did, if I sound stupid, or pathetic and if I get up peoples noses but as I don't have to see you in person afterwards it doesn't seem as bad if I'm being embarrassing and wimpy. So thank you to anyone who has ever read one of my long posts x
Today has been an odd day, I started off pretty upset but touched by the replies on here. When we got to mums this morning I was mums friend as I gave her her tablets and did her list for supermarket. As we were getting ready to go she asked if she was coming to my house after and I said yes and the she told me 'oh but I think our andies just rung and said she was coming', which I had and she'd known it was me ton the phone but when I arrived she'd been calling me friends name and so I just said 'it's ok it's us who've come to take you to supermarket' neither confirming or denying who I was and she was fine with it.
We carried on like that round supermarket and also back at our house afterwards. I did call her mum at times when I spoke to her but she didnt say anything, she often tells me that 'friend' does that, and she just carried on calling me 'friend' and occassionaly Andrea but not her daughter Andrea all afternoon. Unlike a lot of times when I slip in and out of being me she didn't realise her mix up today so didn't get upset about it.
Late this afternoon she had violent diarohea which she sometimes gets as she has diverticular disease so the next hour plus was took up with cleaning up my bathroom around her, helping her clean herself up, getting her changes of clothes and standing talking to her etc. She kept apologising for the mess and for me having to help her which I told her no need to worry it was fine, not her fault and she also kept telling me how good I 'friend' was to her. Don't know if this sounds odd but unpleasant as cleaning up was and how not nice it was to see mum not well and not be able to do much for her other than being practical and cleaning up and talking to her I found that easier to deal with than wondering how to help mum live with dementia and for a while focusing on that took my mind of dementia worries for a bit.
Eventually we risked the drive over to hers and hubby dropped me and mum off. I stayed at her for a couple of hours, I still was 'friend' but she was ok with me being there and said she was grateful for me staying with her a while and keeping an eye on her. Hubby came back for me about half 8, mum hadnt been to loo since just after we got to hers and was feeling a lot better so said she was ok for me to go home
When we'd arrived at mums she had got some post, including a letter from drs about a yearly check up(MOT) as she has peripheral artery disease in her leg they ike to see her once a year. She refused to go to last time in case they noticed her memory problems but we'll go this time, so I'll need make appointment for that next week. Also she had another letter from AA this time saying she had been awarded it at the higher rate.
Mum started off reading it and saying it mentions me having a carer and needing someone with me and I don't have a carer and don't need one and what are they on about paying me I dont get any money. I told her about SW telling us to apply for it when she first came out and then carer support woman came to help us fill it in and this is what they have decided to pay her.
I said she could use it to get some help as people who have alzheimers like her usually have some help with things and SS can only provide short visits where they just pop in but they cant stay and mum doesn't like to be on her own all day so she could pay for carer to come for longer with that money.
She told me a lass had been coming last week and maybe she might come back but she had her boyfriend or husband coming and she made her dinner but made it for him too and she dint really like that, she stayed all day and went home at night time but he dint he just came for dinner and took her home, she was ok but she dint want her here all time but she could maybe be it, the carer. The lass is me and its my hubby who comes for dinner, I didn't know what to say to that so I didnt say anything about it just said well you could get a proper one with that money.
So mum said well I best get a carer then but how do I get one? So I told her sis and I could get in touch with some of care agencys for her and then they could come out and talk to mum see what type of person she would get on with and we could tell them how long wanted them to come for, pick a day, or two a week and I could come on other days like I do now.
She asked me what they would do. So we had a short chat about what they could help with and what I helped mum with now, like making sure took tablet at right time, reminding her when to wash hair, making her dinner and reminding her when to do jobs round house and even helping her if she wanted but not if she didn't, and also they could keep mum company cos she doesnt like to be on her own all day.
She asked if they would be there all day so I said they could come a bit like I do, come mid morning and go after dinner and then I could have a day or two when I didn't come and it wouldn't cost her anything as she could pay for it with the AA cos thats why they give her it, She listened all through it and nodded a few times.
I know she'll change her mind and go off the idea and probably forget what we said and talked about later, but it was the most calm and agreeing about anything like that she's been. I think sis and I should start to look into trying to organise a company anyway in the hope we can say thats what the money is for and you're expected to use it on that and she accepts it.
I don't know if we should wait for SS to get their carers in place first or as that may be a while just to start and get on with getting our own and hoping they can work round them, it would be good if we could get same company SS use to do paid visits too and combine the two but as we don't know who SS will use thats not likely unless we wait I suppose.
I'm still don't really think it will be enough for mum for very long even if it works for a while, mum is going to get worse and already is and even now there is still the evenings and mum wondering where I am and having to accept help from others but we need to try something and SS says full time care isn't an option.

 

[annielou]

Would getting an independent mental capacity assesment help ? Maybe others will be advise on this . Mum has failed 2 recently so is deemed to have lost capacity . We had a private psychiatrist perform them. Sending more hugs @annielou , you are doing a great job in a very hard situation . Take care . X

I don't know much about capacity to be honest.Maybe this is something we should look into more. SWs both said mum has capacity to make her own choices on care, though I'm not sure as I really don't think she understands the implication of her decisions and at times says opposite to what she tells them too. We don't have POA or LPA whichever it called, for mum and doubt she would agree to it so if mum was deemed to not have capacity would that mean SS would decide for her? I assume so and in that case would they do anything?
x

 

[Palerider]

I really don't know where I'd be without posting on here. I'm not good at talking to people I don't know well, in fact even with people I do know well, I worry all the time what people think of me and what I've said and done, going over and over conversations afterwards and although I still do that here, I feel safer behind the keyboard. I still worry about the same things, if I should have wrote what I did, if I sound stupid, or pathetic and if I get up peoples noses but as I don't have to see you in person afterwards it doesn't seem as bad if I'm being embarrassing and wimpy. So thank you to anyone who has ever read one of my long posts x

I wouldn't worry about these things @annielou -write away if it helps you sort this out for yourself, it also gives others who are experiencing the same thing a glimpse of how we try to constantly battle with the changes dementia brings.

 

[Sarasa]

Hi @Annilou, glad yesterday was a little better. I don't really understand how capacity is judged either. At the time mum went into her care home she still consistently knew who I was, where she lived and could get herself from her home to Marks and Spencer and back again. She could also make a cup of tea and get herself some cereal, and do simple tasks around the home. Naively I hadn't thought that moving her into care could be seen a deprivation of her liberty, I just knew she was unsafe because of her delusions that the neighbours were stealing from her and her visits to drink with random men in her local pub. When I did realised I was concerned that she would be allowed to go home, she certainly didn't want to be in the home and was trying to escape all the time. The Social Worker and the Psychiatrist who saw her agreed that she had lost capacity and granted a Deprivation of Liberty Safeguarding (DoLS) order. This was reviewed in December. By them she couldn't really answer the questions and was more concerned about visiting her (long dead) parents, so it was renewed for another year without problem.
From what you've said your mum doesn't seem to have capacity, at least not in the long term, though she maybe has clarity for a few minutes. Maybe write something for her GP to see ahead of your meeting next week so he is aware of your concerns, and can maybe check her over too.

 

[Woo2]

Morning @annielou , while they are saying she still has capacity get an Lpa , please do that first as a matter of urgency , it will help you so much in the future . You need to be able to access mums bank , pension etc, until you have health Lpa they will make decisions I think, it does take a while to come through , easier way is to do it online and a lot cheaper too. I think I would be inclined to get a private carer in the mean time but I don’t have much experience of ss and how it works as mum is self funded so hopefully others with experience will let you know . I completely understand the helping mum out in bathroom and not thinking about dementia just for a while . It takes up nearly every waking thought and decision here too . Please don’t worry about what you put here , it’s your post to write what you want /need to , people don’t judge they read someone going through similar or what they may encounter in future. We all want to help you if we can , no one judges you , so keep posting as you are . Wished I could help you more and I’m sorry you are having such a hard time . Have you called the Admiral Nurse helpline ? Honestly I found them brilliant , I wanted confirmation really that I was doing the right thing for mum and they made some helpful suggestions and when I was upset they listened . Also what about the helpline for practical advice ? I know you struggle to talk on phone but if you could talk to one of them it might help . Take care . More hugs sent . X

 

[annielou]

Thanks you for your replies, I'll keep on rambling and putting down my thoughts xxx
We've had the chat about LPA a few times, mum read one of the leaflets from alzheimers society a while ago and though she said it was a good idea she said she wouldn't have one as we'd stick her in a home and I deal with everything for her anyway so we'd just carry on as we are. I tried to tell her officially I wont be able to as she gets worse but no. The first SW asked us if we had one and when we said no she said she thought it was too late. I don't know if that was because she didn't think mum capable of making the decision, though she had said mum still had capacity on care plan, or if she could tell mum wouldn't agree to one now. One of the memory team and the carer support worker who came to help us fill forms in a couple of times both mentioned it to mum and tried to tell her bit about why should have one and mum agreed with them but then said no, she didn't want someone else making decisions for her, good idea but no cos we'd put her in a home. Even saying she could just have one for finances didn't sway her.
Also she said she didn't know anyone to witness it who had known her for a while and wasn't related to her who she would want to know about it. This is true, mum doesn't know many people and she doesn't want people to know her personal circumstances and to be honest if someone had to sign to say she knew what she was signing I'm not sure anyone would as if they asked her she probably wouldn't be able to follow it.
I'm dreading what will happen with her benefits and finances in future. If she has to contact any benefits I do it, either by ringing and getting mum to say its ok for them to speak to me or filling things in online and not saying who I am. I'm the one who rings the gp or hospital when she has to go but thats fine as only arranging appointments and checking blood results ordering prescriptions but obvioulsy they wouldn't tell me anything private unless mum was with me. During the visits from SW and memory team she has told them its fine for them to talk to me and sis so we are ok there and the AA asked me if I wanted to be appointee for mum with them last week on phone and are going to send something out in few weeks, Though if its a form to be witnessed we could have problems there. With her bank she has only ever had to ring or go in a few times in the 15 years she's had account and she always has me there, she has never took to using bank card so hubby has it and draws out money when she tells him to and she has always had me look at her bank statements to check they are ok. We manage now but if we ever need to call bank or change anything we would struggle now, let alone when mum gets worse.
I've been given helpline and admiral nurse numbers but so far I've not rung, I don't know what I'd say, probably get all upset and ramble on and forget what I'm ringing for. I wouldn't know what to say and I usually give too much info that isn't needed, but if I have specific question over a worry I might manage it.
Anyway this has been another rambly negative post again so I'll shut up with a thank you for letting me. Thank You X
Off to get mum now in howling wind and lashing rain. Hope everyone is safe out there and hope you all have as easy a day as possible X

 

[Starting on a journey]

You can be her appointee for her pension as well as attendance allowance.

Now that mum has attendance allowance you should claim carers allowance from the date attendance allowance was paid from. This will be paid to you and would be helpful with all those extra bus fares etc that you must be spending. You can complete the form on line and honestly compared to the attendance allowance form it is easy!!

 

[canary]

I understand exactly what you mean about the POA. I had exactly the same problem with my mum. Fortunately she had allowed me 3rd party access on her bank accounts, but would not do POA. Eventually it was too late as she lost capacity and I had to apply to the Court of Protection for deputyship, which was more expensive, required a lot of form filling and took a long time to complete. If you dont do this yourself, yes the council will take over and apply for deputyship themselves, which will mean that a solicitor will be appointed by the court who will have complete control over all her finances, assets, possessions and everything, will make all decisions for your mum (and charge her for it) and doesnt legally have to contact the family.

If you really can get POA for your mum - perhaps downloading the forms, pre-priming a friend or neighbour and picking your time when she is lucid - then please do. It will save so much hassle in the long run.

 

[Woo2]

How convenient for sw to advise she doesn’t have capacity for Lpa but does when it comes to them providing care . I would try really hard @annielou , get the forms printed off ready and then ask mum at a good moment . I wouldn’t go in to too much but basically it’s so you and sis can access her money for her benefit and not ss. Can you find a neighbour to sign it ? Or your in laws ? Sorry I am copying what @canary has said but really important to do it now rather than have to go to deputyship process. I am appointee for mum , that was quite easy to do, lady came round , looked at my Id etc , was only here about 20 minutes and she knew what to say and not say to mum.
If the bank get wind of a lack of capacity they can stop Mums access , plus it isn’t great that you have to use her card, much better to get your own card and use that . Hope today is ok . X

 

[Woo2]

I did exactly that on phone to Admiral nurse , I cried , rambled, told them our life history etc and they were brill ,they listened for nearly an hour then gave me some good ideas so don’t not call for that reason , even if just to reassure you that you are doing the right things but up to you . Hope hubby is getting on ok with his bp medication and it’s making a difference . X

edit for spelling mistakes .

 

[Shedrech]

hi @annielou
maybe a different tack re LPAs
get forms prepared for your mum and you and anyone else who you think would be useful (for yours, rather than actually prepare forms, you could always just do your mum's then photocopy, white out all the specific info .... you get the idea ... your mum probably won't notice)
organise a possible witness to come to tea and ask your mum to be Attorney for you ... saying Martin Lewis advises every adult to have them (he does, on his website) in case they go into hospital and can't get to deal with money themselves, and they can't be used without permission, so you want to get them in place just in case ... then calmly add, maybe you could all be Attorneys for each other and hope she goes with it
send hers off to the OPG to register .... sideline any others
hopefully she