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

Sarasa

Registered User
Apr 13, 2018
978
Glad it went well yesterday, appointment card was a brain wave!
In the last couple of years she was at home mum had various pains that she trotted off to the doctor about. They were the sort of minor pains she’d have ignored before she started to get dementia, so I think it was a kind of displaced worry. Glad your mum had been properly checked out though.
 

annielou

Registered User
Sep 27, 2019
702
Yorkshire
Thanks @Sarasa x
mum is bit the same though she wont normally go to doctor just moans about it. The last couple of years anytime I've not felt well if I mentioned it to mum she would either say 'oh I'm not feeling well either I've got headache/cold/something hurting' or 'it won't stop you coming to see me will it?' And then later on she'd say she was one not well.
She's not going to day centre today because she's had diarrohea in night and says she's had no sleep. She has diverticular disease and does suffer with constipation and diarrhoea, she had it on Saturday, so I do believe she had it last night and its not a good idea to go out as it could start again later and she does look shattered and is really not with it.
Unfortunately for me I ring her to get up when I'm on the way over so I didn't know about her tummy and that she's not going till I'd set off otherwise I'd have stayed at home a while and come through for 10 like usual rather than being here at 1/4 past 7.
She wasn't really with it when I rang or when I got here, she couldn't really remember when diarrohea started or stopped but thinks was up about 3 ish and either 1/2 past 4 or 6. She was having a cup of tea when I got here because she was thirsty but was worrying it would set her off again but it hasn't.
I had wondered if she'd be ok when I got here and she'd been up a bit and might still go to day centre but she didn't, she looked shattered and was quite mixed up.
I'd put a note over plugs where lifeline box and phone are plugged in last week saying don't unplug and it had been moved further up the wall , she said my dad had put it there and she didnt know why cos she knew how to use her phone but she hadn't moved it, maybe he had. I told her I'd put it there to remind her not to unplug it after last week when had to have it reset and she said I don't want it anyway, so I just said you need it and left it at that. Then she asked if she had to let council know she lived here now and if she had to pay rent now she's here ( back in the just moved loop again) I just said no mum they know its all sorted. She said her arm hurt. I asked if her chest or anything else hurt and age said no so I said try sitting up a bit and rolling your shoulders a bit like nurse said on Monday see if that helps. She didn't, she flexed her hand like does when says it hurts, but just stayed sat in same slouched position. Then she started rubbing head and saying tired. I suggested she go back to bed for bit and I'd let day centre know she wasn't going but she was worried bout me being sat on my own while she was in bed so I told her I was fine I could read magazine or go on my phone. She was quiet for a while then asked if I'd seen white car parked on end when I came. I said no and asked why and she said cos that them they come for me in white car for thing. Its not its a blue mini bus She kept saying they'll be here soon they come at half 7. I told her no its half 8 and I was going to ring day centre soon to say she wasn't going and if bus did come I'd tell them she's not going today so then she went back to bed.
She was there about an hour but she just got up and said she's not been back to sleep though she was quiet while in there so I'm not sure if had or not. She still sounds tired and sorry for herself, she has just gone in the shower mumbling and oh dear-ing to herself in there bless her. Looks like today is going to be a long day for us. Oh and she asked me if 'friends hubby' dropped me off so maybe think I'm 'friend' already too.
 
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Woo2

Registered User
Apr 30, 2019
1,093
South East
I’m sorry mum isn’t well enough to go to club today, hope she feels better soon and that you have an ok day . Xx
 

Sarasa

Registered User
Apr 13, 2018
978
Sorry your mum isn't feeling too well, but good she is still able to make a cup of tea and get in the shower. Any news from SS about carers or more days at the Day Centre?
Mum couldn't follow any of the instructions given to her when we were in A&E last week, so I guess your mum is the same. They put a canula in to give mum fluids, but she couldn't remember to keep her arm straight so not sure that she got much. I was really worried on several occasions she was going to rip it out. I guess your mum can't remember the visit to the hospital or the advice given.
Hope your day isn't too stressful, you are a total star.
 

annielou

Registered User
Sep 27, 2019
702
Yorkshire
Thanks @Woohoo @Sarasa xx
Mum seems ok now tummy wise and more awake but I've not been me since she got back up. I've been the 'friend'. She kept telling me I could go home cos she'd get our Andie to come. Couldn't remember me coming earlier and kept asking why I'm here already and why I 'friend' am here instead of our Andie.
She kept on going on about it after she'd got back up and I ended up saying I was our Andie which she didn't get of course, but nothing else was working either and I was running out of things to say. She was very confused bless her and I was getting a bit frazzled.
Then we had half an hour of what are we going to do then and we cant just sit here all day. Of course mum had no ideas what to do, she was looking for me to think of something as usual and I was tired frazzled and fed up and not in mood to be chief entertainer again so didn't have anything to suggest and told her so.
Not nice I know, but I'm not always nice. Sometimes I just want to think about me and not always put mum first and not be responsible for entertaining mum. I feel bad for saying that but there you go. I'm feeling quite bogged down by it all today. I feel guilty for saying it but thats how I feel.
Mum said I could go home and she'd be ok on her own, which she wouldn't she would need her tablets so she said she'd get our Andie to come give her them, so we were back to that again.
I said it was ok I'd stay with her and she said she didn't want me to have to stay if I didn't want to be there I should go do what I was going to do today.
So we ended up having a little talk about it being me who went everyday and I do have things I want or need to do myself and so don't always want to go to mums all day every day but I love her and so I do. I won't leave her on own and will try to look after her but sometimes I'm tired or fed up or not in good mood but I know its not her fault and I'm sorry I get grumpy sometimes and I still love her.
We put tv on after a while so we could chat a bit about that and she seemed a bit better. Then she wanted to try lunch as not been loo since early this morning. We needed something from shop which I was going to go for by myself but mum said she wanted to come and get some fresh air so we popped to local aldi which is not far.
It was windy and very cold and I have to direct mum where to cross and keep an eye on her. She kept wanting to buy things already got, then wanted to pay with change she had but struggled count out right amount, and as usual had only took her shopping bag with purse in and no carrier so most of shopping went in my carrier which I always take as she doesn't. Then I'd to direct her back home battling the winds again. It was a bit of a faff and would have been quicker to go on my own but at least mum got bit of fresh air and I got to see if she got breathless or had any chest pain after exercising (walking uphill in wind) as cardiac nurse suggested on Monday, she didn't have any pain or anything which is good.
We've had lunch and are hoping her tummy is ok now X I'm still 'friend' she been calling me 'friend' all morning and called me it again while getting her lunchtime tablets which I had to remind her twice to take. She just asked me if I'm still with 'friends hubby'.
 
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Woo2

Registered User
Apr 30, 2019
1,093
South East
Don’t feel guilty or bad @annielou , i too feel all those things as I’m sure everyone caring has at some point, you aren’t bad or not nice at all, you are a full time carer who is exhausted and emotionally and physically drained . I think you are lovely , kind , caring patient and very understanding. I’m glad mum managed the walk with no pains or problems , one less thing to worry about . Hope the afternoon is calm . Sending hugs . Xxxxx
 

annielou

Registered User
Sep 27, 2019
702
Yorkshire
Thanks for the kind reply @Woohoo x hugs back to you (X)
Unfortunately the afternoon continued much the same. I was still friend apart from a brief spell where she was talking to me about my dad and my sister in a way that I thought meant she knew I was me but then she was back to me being 'friend'. I sort of went along with it just ignoring what she called me and answering as I would.
Mid afternoon in the middle of us talking about a holiday home that had just been on tv we were watching she said 'I'm going to try ringing our Andrea tonight to see if she'll come see me, mind you she might not be there she might be at boyfriends house cos I think he has one too but I don't know where' Then she said similar thing again about five minutes later and said 'thats if she will, she might not be talking to me' I never know what to say when she says things like that so I just said she will, she'll come tomorrow.
We watched tv programmes we like and watch regularly this afternoon and I tried really hard to keep thinking of things to say so that we could chat about that and keep her attention on tv because when we were quiet for a while she would start fidgeting and then talking mixed up and questioning about where she lived and how long for again, do I need a tv licence cos I've not lived her for 13 years, I'm not getting my pension, do I need to tell council I live here again now, I've only been here about 5 weeks and I've not paid anything, every time we were quiet for more than ten minutes she would start again round and round.
Tonight when I said I was going home after dinner she said where to? I said my house and she said oh have you got a house now? I said yes and she asked where and when I told her she said Our Andie lives there have you seen her? I said yes as didn't know what else to say. Do you know her then? Yes. What did she say? did you talk to her? I was stumped then so said not really. Mum said oh did you just say hello, did you not talk about me? So I just said yes again. Then she said I'm going to try ring her later see if she'll come see me. So I said oh I'm sure she will.
She rang my mobile on the way home and said who she was and asked if I was ok, so I said yes are you? she sort of mumbled a a bit as if unsure what to say and then said I'm not bad, I wondered if you'd come and see me tomorrow? I didn't say I had been today or anything else I just went along with her and said yes I'd go tomorrow morning. We said what time and then she said thank you and see you tomorrow and while I was saying night night and love you lots like we usually do she hung up.
She rung me back a few minutes later to say I didn't tell you where I lived did I, I live at ------- I said yes thats ok I know mum. She said oh good I'll see you tomorrow morning then and again hung up while I was saying night.
She rung a third time about 1/4 of an hour after that and said I'm sorry Andie its me again, I forgot to give you my address. So I said its ok mum I know where you live its, and we both said her address at same time. She said oh sorry. She sounded a bit confused and shaky so I thought I'd change subject and try talk to her about something else for a minute take her mind off it. I asked what watching and tried chat about it but she didn't really join in and then said night and hung up again.
I've found today really hard, probably partly due to the fact I thought I was going to get some time to myself today and I'd planned to do some much needed washing and ironing but because mum didn't go to day centre I wasn't able to so I was dissapointed and knew I'd have to iron a few things when we got in tonight. Also I got up at 5.30 to be over at hers to help her get ready for it so am quite tired and the constant not knowing who I am and talking about things that are wrong and out of sync has just made me tireder. I'm also dissapointed for her that she didn't get to go as yesterday she was looking forward to it and has enjoyed it the last twice and I'm also worried she will get in to habit of not going, or forget she likes it and not want to go again. I also hate seeing her so confused, its cruel seeing her unsettled and not knowing whats going on.
After we got in just before 8 I ironed for an hour as hubby needed things for work the rest of the week and I needed things for going to mums too. Then I sorted some washing to put on before I leave for mums in morning and sorted a few other little jobs before finally sitting down about half nine and all I wanted to do was sit and cry, which I did a bit while ironing, I didn't even realise I was doing it till I saw the drips on the ironing board.
I'm just so sad today, sad for mum and sad for me.
 

Woo2

Registered User
Apr 30, 2019
1,093
South East
It is the most horrid cruel disease , I’m sorry you have had another hard sad day😔. You handled today the best you can and it is exactly what I would have said/done , you do so well to keep calm and not shout or cry or get frustrated. Let the tears flow as and when , they are a release valve and essential . Take it you have heard no more from ss ?
I would t worry about day centre as Mum likes it she will have good vibes about it so won’t not want to go, it’s amazing how quick you get used to that little bit of precious time , I was a bit antsy today as mum didn’t go either , I have to pull myself up and remind me that until a couple of weeks ago I didn’t get any time away but it’s hard. I hope tom is a better day for you both and also that you get some news of carers soon. Take care, sleep well, sending an extra large hug . Xx
 

Bikerbeth

Registered User
Feb 11, 2019
930
Bedford
I am sorry to hear you have had a rough day. I do find it a bit ironic at the moment that your ‘Mum has just moved in and mine is packing to move out’ though.
I think it is hard when you plan that break and then suddenly it is taken off you. You feel bad about your Mum being ill last night but feel disappointed as you know that the ‘me time’ has suddenly gone even if it was only to do chores.
you are having a tough time and lack of sleep never helps. You are doing an amazing job so be kind to yourself and never beat yourself up
 

Pete1

Registered User
Jul 16, 2019
558
Hi @annielou, I'm so sorry to hear about your day, I can understand your sadness. It is absolutely heartbreaking seeing poor Mum confused and worried - you are going over and above in supporting Mum in her hour of need. However, it will inevitably take its toll on you physically and emotionally. I hope you get some support soon to take some of the pressure off, you do need a break from it. Stay strong, all the best.
 

annielou

Registered User
Sep 27, 2019
702
Yorkshire
Thanks @Woohoo @Bikerbeth xx
Sorry you didn't get break this week either woohoo I hope your mums cough gets better soon and she is more settled and can go back to day centre soon X
Yes it is ironic isn't it Bikerbeth, different versions of same problem I suppose. I hope it settles soon X
Not heard anymore from SS but doubt will now as we're going to source our own carer. We've been in touch with a care agency but manager was away last week and part of this so they said she'd be in touch when got back to arrange an appointment at mums so we should hear from them soon.
SS said mums careplan was at brokerage waiting for an agency to take it on. Once mum got her benefits through they said we had to pay them all mums AA and SDP to pay for her care plan. Which is fair enough if those are rules but it left us with nothing to arrange anything but their 3 short pop in visits and a day at day centre and I was hoping for an afternoon or two off.
Then SS said an agency came up that could do mums care plan but not at any of times we picked and the lunchtime one was way out so sis and I didn't think they would work. When we talked about it we decided that it migjt be better to pool visits into longer blocks as 3 short visits a day for mum would mean she was on her own most of day so I'd still be going through everyday and mum would have to be at home for each visit every day too which would be awkward as usually she comes to mine after we've been shopping at weekends and sometimes in the week too.
So we're looking at carer visits a couple of afternoons a week for a few hours at a time and possibly a half hour visit on morning of day centre to save me going through before she goes to sort tablets and check she gets off and locks up ok. We told SS we'd do that instead and they said that was ok
I'm a bit worried that without SS providing carers when things worsen and mum needs more care SS won't know about it and not act because they aren't involved. Also I'm worried I won't be able to cope forever going every day even though some will only be part days but with SS care plan I would still be going every day too and for longer as I know mum would really struggle on her own inbetween visits. I'm worried doing it ourselves takes us out of SS radar for help but to be honest SS seem to think mum is much better and requires much less help than we do so we think they'll be reluctant to offer anymore help anyway.
 
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Woo2

Registered User
Apr 30, 2019
1,093
South East
I think you are right to arrange your own and I wouldn’t worry about them as mum progresses , they are more than used to it and they would give notice anyway. Ss are aware of mum and she is on their radar so can’t see a problem in the future . I haven’t had Mum assessed as she is self funding and I’m guessing she will get no help anyway so I just got on and arranged it myself . The day centre provides great value for money for mum compared to the price of carers but I need both so I only plan to have them once a week for an hour or so . Have you any befrienders in your area ? I think you are right in that you do need a regular break , have you had a carers assesment ? Again I was advised to have this as it might pay for me to have a treat now and again , I will organise it once the weather is better . Hope today is an ok one . Xx
 

annielou

Registered User
Sep 27, 2019
702
Yorkshire
Thanks @Woohoo x
SW said she was assessing me as well as mum when she did last assessment so I'm assuming that was my carers assessment. I think the 4 week respite a year is for my benefit. The way it was worded on care plan sis thought that the day at day centre was also to give me a rest, though I thought it was for mum so she's not isolated. When we told them mum had got AA and SDP and we decided to arrange own carer they said we'd have to pay for day centre too so it must have been only for mum.
The SW said she would refer mum to RVS for befriender but not heard anything back. The agency we're hoping to get carers from does befriending but when we contacted them a while ago about it they had none available and had used up all their funding for free visits and we couldn't find anyone else in the area.
Good luck witb your carer visit hope it goes well X and do try get a carers assessmemt as may get something from SS for you X
 

Woo2

Registered User
Apr 30, 2019
1,093
South East
The lady from care agency said I may get a little money towards a treat but my expectations are very low ! I do find the £70 for club money well spent as it’s 6 hrs and she gets 2 course lunch . Bloody typical about befriender. Hope you can get some more help soon. Xx
 

annielou

Registered User
Sep 27, 2019
702
Yorkshire
@Woohoo Our carer support agency making spaces told me about a one off carer grant and filled the form in for me a few months ago and I got £300. I used half of it to buy pressure pad alarm for bed for when mum stayed at Christmas and some wood to make a gate/barrier for stairs, only used one night as she was really agitated at the time and wouldn't stay longer. I've still got the rest as not had time to spend it.
Day care is really quite good value isn't it compared to carer cost per hour plus sounds good fun with activities and chance to be social
 

Woo2

Registered User
Apr 30, 2019
1,093
South East
That’s good about the payment , Shane you spent it on things for mum and not you but I understand . Hopefully one Wednesday you can treat yourself to something nice for you ! ☺ . Xx