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.