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

Woo2

Registered User
Apr 30, 2019
2,012
South East
Hi @annielou , sorry you haven’t had a good day . You can write a letter on mums behalf saying she gives permission for you to discuss her medical needs etc and mum signs it. I did this and all calls now come through me . I have no experience of ss , private carers in my area are £21 an hour during daytime and out of hours and weekends £28 an hour . Hope tom is better for you . Extra hugs sent your way. Xx
 

annielou

Registered User
Sep 27, 2019
1,302
Yorkshire
Thanks @anxious annie @Woohoo xx
We think what SS are offering is inadequate too. SW put on careplan one reason for giving mum day at day centre is shes at risk of social isolation but other than that her emotional needs don't seem to come into it really.
Mum is confused a lot of the time, even doing things like plugging in the tv, using the washer, controlling the heating, remembering order to do things like change her bed confuses her a lot of the time and I have to help or direct her, so if no one is there to nudge her in right direction she can't always do them and gets upset.
The other day she had turned the radiator in living room off because she was warm and couldn't remember how to turn heating down with the room thermostat and the next morning when it didn't get warm in the living room because radiator was still off she started pressing buttons on the heating control panel and ended up pressing advance button which turned all heating off when it should have been on so. I had to correct it when I got there, luckily it wasn't as cold that morning as has been last few days and she'd put a big cardi on but if nobody was there she'd have sat there all day in the cold. She has also tried a few times to put tv on but got confused with plugs and I've had to sort it out when got there so now I always make sure it is plugged in and turned off when we take her back home if we've been out.
Her sitting in a cold house without the tele on and sat with nothing to do, because shes forgot how to put them on that day and nobody is there to prompt her is not good in my opinion but it doesn't seem like an important thing to SS. If carer is just popping into to help mum choose clothes and take tablet early in morning and then nobody is with her till lunchtime and then again nobody with her till dinnertime she could be sat cold and bored and not do washing etc
as nobody to ask when she cant remember what to do.
I know they arent big things but its lots of little things she struggles with and gets confused about, as well as not liking being on her own as she doesn't know what to do with herself and gets bored and lonely and also scared and upset that she doesnt know what to do or remember things that I think is why she needs someone with her most of the time.
The brokerage department rang sis later this afternoon and said they had found a company that could do mums visit but none of them are at the times SW put on care plan so she wanted to see what we thought. The morning one is later than SW put but actually similar time to when I go so would be ok, the lunchtime one is about an hour after mum would normally have lunch so not suitable and the dinner one is a bit later than normal but might not be too bad. Sis asked if could maybe just have some but not all of the visits and figure something out ourselves for rest and also said if mum at day centre on wednesday she wouldnt be in for two of the visits anyway. Brokerage said yes but she didnt know about day centre and also then the company might not want to take it on as not a big enough job to be worth their while. Shes going to contact care company and SW tomorrow to see what both say and get back to sis.
I rang sis after hubby and I came back from mums tonight and Hubby sis and I had a chat about carers and we are thinking it may well work out better if we don't have SS arranged carers and we arrange our own using mums AA and a little of her own money.
We don't think mum could cope with just the short visits SS are offering and nothing in between so I would probably end up going over anyway and then we'd be doubling up and I'd get no benefit from having carers. We aren't really bothered about weekend visits anyway as hubby and I always see mum on weekends and mum having to be in for carer will be a bind and actually make things a bit more awkward. So we think we might try to find our own to come a couple of afternoons a week so I can go over in morning and then leave after lunch and carer can come in, sit with mum for few hours and give her dinner so I can come home and do my own thing, have my hair cut, do some housework, have dinner with hubby on our own, maybe even have friends round occasionaly again and then rest of the days I'll go over like I am now and weekends hubby and I will see her like we do now or sis will see her when she comes down.
I'm thinking having afternoon off rather than morning might be better as mum sundowns in the afternoon and forgets who I am and questions me about it and I do find it really hard to deal with, even though it isn't as bad now as before when she would get aggressive, but its still upsetting. I wonder if I'm not there she won't be trying as hard to make sense of who I am and maybe carer may be able to distract her onto something else a bit better.
I don't think a couple of afternoons a week is enough really as I'll still be with her rest of time and on red alert and worrying about mum when she alone on an evening and even when she's with carer on my afternoons off but it will better than now and better I think than if we only have 3 short visits a day.
Nothing else is on offer so we have to make best of it and Sis and hubby and I seemed to agree this may be better as at least I will get a couple of blocks of time and mum will have someone with her during them so I think thats what we are going to try. When SS call sis tomorrow she is going to ask them about it and tell them what we think.
I don't know its the right thing but we can only try what we think is best we can do at the time. I just hope this doesn't make it harder to get SS to step in when things get harder in the future but to be honest I think that was going to be hard anyway.
I am probably being cynical but is it a coincidence that care plan was at brokerage with nothing happening yesterday when i spoke to SW and then just after we say mum has got AA we get an email next day from SW saying mum now has accessible income and we'd have to pay them mums AA towards her care cost that we then also get a call the same day from brokerage saying a possible care agency has been found. I'm probably being unfair and it is a coincidence as SW had said last week some of care plan backlog was being taken up now but it was a thought I had today.
Need to stop thinking about it now and go try to get some sleep as I've to be up really early in morning for hubby to drop me at mums around 7am to get her ready to hopefully go to day centre. X Fingers crossed she goes X
 

deepetshopboy

Registered User
Jul 7, 2008
270
Thanks @anxious annie @Woohoo xx
We think what SS are offering is inadequate too. SW put on careplan one reason for giving mum day at day centre is shes at risk of social isolation but other than that her emotional needs don't seem to come into it really.
Mum is confused a lot of the time, even doing things like plugging in the tv, using the washer, controlling the heating, remembering order to do things like change her bed confuses her a lot of the time and I have to help or direct her, so if no one is there to nudge her in right direction she can't always do them and gets upset.
The other day she had turned the radiator in living room off because she was warm and couldn't remember how to turn heating down with the room thermostat and the next morning when it didn't get warm in the living room because radiator was still off she started pressing buttons on the heating control panel and ended up pressing advance button which turned all heating off when it should have been on so. I had to correct it when I got there, luckily it wasn't as cold that morning as has been last few days and she'd put a big cardi on but if nobody was there she'd have sat there all day in the cold. She has also tried a few times to put tv on but got confused with plugs and I've had to sort it out when got there so now I always make sure it is plugged in and turned off when we take her back home if we've been out.
Her sitting in a cold house without the tele on and sat with nothing to do, because shes forgot how to put them on that day and nobody is there to prompt her is not good in my opinion but it doesn't seem like an important thing to SS. If carer is just popping into to help mum choose clothes and take tablet early in morning and then nobody is with her till lunchtime and then again nobody with her till dinnertime she could be sat cold and bored and not do washing etc
as nobody to ask when she cant remember what to do.
I know they arent big things but its lots of little things she struggles with and gets confused about, as well as not liking being on her own as she doesn't know what to do with herself and gets bored and lonely and also scared and upset that she doesnt know what to do or remember things that I think is why she needs someone with her most of the time.
The brokerage department rang sis later this afternoon and said they had found a company that could do mums visit but none of them are at the times SW put on care plan so she wanted to see what we thought. The morning one is later than SW put but actually similar time to when I go so would be ok, the lunchtime one is about an hour after mum would normally have lunch so not suitable and the dinner one is a bit later than normal but might not be too bad. Sis asked if could maybe just have some but not all of the visits and figure something out ourselves for rest and also said if mum at day centre on wednesday she wouldnt be in for two of the visits anyway. Brokerage said yes but she didnt know about day centre and also then the company might not want to take it on as not a big enough job to be worth their while. Shes going to contact care company and SW tomorrow to see what both say and get back to sis.
I rang sis after hubby and I came back from mums tonight and Hubby sis and I had a chat about carers and we are thinking it may well work out better if we don't have SS arranged carers and we arrange our own using mums AA and a little of her own money.
We don't think mum could cope with just the short visits SS are offering and nothing in between so I would probably end up going over anyway and then we'd be doubling up and I'd get no benefit from having carers. We aren't really bothered about weekend visits anyway as hubby and I always see mum on weekends and mum having to be in for carer will be a bind and actually make things a bit more awkward. So we think we might try to find our own to come a couple of afternoons a week so I can go over in morning and then leave after lunch and carer can come in, sit with mum for few hours and give her dinner so I can come home and do my own thing, have my hair cut, do some housework, have dinner with hubby on our own, maybe even have friends round occasionaly again and then rest of the days I'll go over like I am now and weekends hubby and I will see her like we do now or sis will see her when she comes down.
I'm thinking having afternoon off rather than morning might be better as mum sundowns in the afternoon and forgets who I am and questions me about it and I do find it really hard to deal with, even though it isn't as bad now as before when she would get aggressive, but its still upsetting. I wonder if I'm not there she won't be trying as hard to make sense of who I am and maybe carer may be able to distract her onto something else a bit better.
I don't think a couple of afternoons a week is enough really as I'll still be with her rest of time and on red alert and worrying about mum when she alone on an evening and even when she's with carer on my afternoons off but it will better than now and better I think than if we only have 3 short visits a day.
Nothing else is on offer so we have to make best of it and Sis and hubby and I seemed to agree this may be better as at least I will get a couple of blocks of time and mum will have someone with her during them so I think thats what we are going to try. When SS call sis tomorrow she is going to ask them about it and tell them what we think.
I don't know its the right thing but we can only try what we think is best we can do at the time. I just hope this doesn't make it harder to get SS to step in when things get harder in the future but to be honest I think that was going to be hard anyway.
I am probably being cynical but is it a coincidence that care plan was at brokerage with nothing happening yesterday when i spoke to SW and then just after we say mum has got AA we get an email next day from SW saying mum now has accessible income and we'd have to pay them mums AA towards her care cost that we then also get a call the same day from brokerage saying a possible care agency has been found. I'm probably being unfair and it is a coincidence as SW had said last week some of care plan backlog was being taken up now but it was a thought I had today.
Need to stop thinking about it now and go try to get some sleep as I've to be up really early in morning for hubby to drop me at mums around 7am to get her ready to hopefully go to day centre. X Fingers crossed she goes X
Hi just quickly looked at your post your mum is so so similar to my dad hes the same with tv ,heating etc
Anyway noticed you were saying about carers not coming the times etc you wanted them .have you enquired about direct payments if you get them means you can get your own carers on your own terms but social s should give you payment card im
Not too clued up on them yet as social worker is a complete disaster that my dads has and hasnt a clue so ill have to found out im currently paying out of dads savings shouldn’t be as hes under the treshold by ss are hopeless absolutely hopeless so still having to do everything literally will no help
 

annielou

Registered User
Sep 27, 2019
1,302
Yorkshire
Thanks @deepetshopboy x
I think SW mentioned direct payments or something similar to sis when talked before reassessment. Think she said they put their money in and mum puts hers into a seperate account to mums usual bank account and then mum pays for care from it. I didn't understand it totally either and she hasn't mentioned it as an option since. We were bit worried if need to have seperate bank account for it mum would struggle to open a new account as doesn't have Id they require for bank accounts now so unless the bank she has existing account with would allow her to open another as existing customer without usual ID we'd be stuck and I'm not sure how mum would come across if we went in to ask, they could even think she isn't capable of looking after account she has if we go in talking about carers and mum is confused. Grrrrrr it all gets so blooming complicated.
Really sorry you're situation with dads carers still not sorted and struggling with SW x Hope you get somewhere positive with it all soon X
 

annielou

Registered User
Sep 27, 2019
1,302
Yorkshire
Hi , hope you manage to get mum to club today , have everything crossed for you . Xx
Me too :eek: I'm at mums now and she is saying she doesn't want to go and obsessing about the half eight pick up being too early.
I am trying my best to act like done deal but be positive about it too saying you said to Sw you'd go, it only one day, just try it, the manager sounds lovely, you might enjoy it, you said you would try it. I put kettle soon as I had pkugged phones back in after I arrived and she has had her cup of tea and biscuits and then she was worrying what to wear so I said just same as wear if goin shopping or to mine and I picked her an outfit just giving her couple choices of top and shes been in shower and put them on ok and brushed her hair so I'm ploughing on like all is well. She is still saying not liking 8.30 start and doesnt want to go asking how long for and how often and will they bring her back and will I see her when comes back, but she is acting like she's going. I've told her I'll be here when she comes home and keeping acting like all is ok and going.
Unfortunately it sounds like she had eventful time before I got here as when I rang just before I got here so I could wake her up before I arrived the phone just rang and rang and the answer phone didn't come on either. I had to ring door bell when I arrived which gave her a bit of a shock.
She'd unplugged phone and emergency call box from electric socket and also took phone line socket out too. She said she been up ages trying work out what to do with them. Saying they didnt work. So that wasn't a great thing to find out that shes now worrying about them and unplugging them and if she needed to use them she wouldn't have been able to.
:(
 

Starting on a journey

Registered User
Jul 9, 2019
287
Fingers crossed! If she like it you could pay for an additional day which would give you time off!

We are all hoping that you can get her on the bus!!
 

Woo2

Registered User
Apr 30, 2019
2,012
South East
Carry on as you are. I wouldn’t answer too much but try and change subject . If you can’t just stay upbeat and remember if she goes you get time to do some things for yourself :). You may need to get some covers to put over plugs , I had to do this as mum kept switching plugs off too. Good luck . Xx
 

Sarasa

Registered User
Apr 13, 2018
1,414
Hi @annielou, hope your mum has a great time at the day centre. I agree about getting some covers so she can't see the sockets to switch things off.
 

annielou

Registered User
Sep 27, 2019
1,302
Yorkshire
Mum got on the bus:)
It was a bit of a rush as they were early but mum had shoes on and bag and coat ready so was set anyway and I left at same time and checked mum locked door and off she went to get on bus.
There was a man driving bus and a lady who got off and came to door. She asked mum if she was ready and mum said yes and as mum was locking door I explained I was leaving at same time but not going with them as she looked a bit surprised I was there with coat on too. I checked mum locked door like normal and put keys away and said bye. Lady introduced herself and asked if mum ok walking up step and I said yes as mum was already gettin in bus, I told her mum may ask if locked door a bit as she worries bout it and she said ok and off they went.
I left at same time as mum but I only popped to shop and have come back to mums in case day centre ring saying she's not settled and I have to go pick her up in a taxi. Its quicker to get to centre from mums than my house and I said I'd come back for when she came home this afternoon anyway. I havent told mum that I'm staying here though as she would want to stay here with me. I reached end of mums street same time the bus did and I could see mum was facing into bus at lady who'd come for her as if talking to her, she did turn and see me and waved and I waved and smiled back, she looked ok and she turned back to lady again so I'm hoping that she was talking to her and she was ok.
She was first on the bus which might help as lady could talk to her a bit on own first and she hadnt had to get on a full bus of strangers, dont know if that luck or on purpose but I'm glad it was like that today.
As I popped to shop I rang hubby to let him know mum had gone off ok and when we hung up I had voicemail from careline company. When we left mums door sensor must have gone off and nobody had answered. I rang them back and they were sending a responder out as mum hadnt answered snd neither had I :oops: I explained mum had gone to day centre and I thought it was only till 7.30 so hadnt thought to tell them she was going. It went off again when I came back from shop too but I was in so could press cancel button that time.
Wonder what mums neighbour thought if she could hear voice asking if mum ok :oops: If mum does go again I'll ring them beforehand and let them know.
A nervous day now hoping mum goes on ok and stays but I am so pleased she went to try :D
 

jugglingmum

Registered User
Jan 5, 2014
5,804
Chester
I hope things went well yesterday - so pleased mum got on bus.

My mum's switches are taped over to stop her turning things off as fridge is hardwired in - last time she turned fridge/freezer off I was in France and had to get my invisible brother to buy her food as all her frozen ready meals were no good. (she is in a sheltered extra care flat so carers on site but only call at normal care call times. )
 

Woo2

Registered User
Apr 30, 2019
2,012
South East
Oh @annielou i have been trying to get back on here to see how it went , have been thinking of you . All sounds a positive start so can’t wait to hear how the day went . X
 

annielou

Registered User
Sep 27, 2019
1,302
Yorkshire
Well the day centre was a success yesterday. I was so nervous and watching my phone in case they rang to say mum wanted to come home but they didnt. :)
Day Centre rang at half two as mum was leaving to let me know how mum been which I thought was lovely. Manager said mum had a lovely day from their perspective, she had been really chatty and joined in and helped them clear up after lunch. Said they'd done a craft activity made a little valentine heart with sweets in it and mum joined in that and she seemed to be enjoying herself. From their point of view she'd been really good and engaged so they're really happy. Manager said you can breathe and relax now.
Mum came in full of beans. She said she had enjoyed it and said they were all nice, she'd played couple of games won at one of games they played with cards, won some shampoo in raffle, had lunch meat potatoes and veg though what the veg was changed a few times lol. She showed me heart she made and told me she had liked it. She's not a fan of the half eight start but thinks she'll go again. She said they all asked her if going again and she said I think so.
She was bit worried if she will go on ok wen getting up and out if she goes again if am not here so I said I'll come and see her off like today. So think I'll have to do that for bit if she does keep goin.
She was a bit mixed up when she got home about her house and if got another house or if still had her mums house when she came in and told me about phone and lifeline button thing going wrong a few times and lost who I was a few times too mixed in with talking about day centre but it was a good day.
I'm so pleased she enjoyed it.
I contacted lifeline people yesterday about door sensor going off at wrong time as everytime door opened yesterday till about 6pm it rang call centre. Mum was really confused by it and kept saying she didnt want it anyway and they could take it away as didnt use it :confused:
They came out today and reset it. Thinks it lost timings due to it having no power for quite a while when mum unplugged it. I've stuck note above plugs telling mum not to turn off or unplug them. Hoping she doesn't do it again.
 

Sarasa

Registered User
Apr 13, 2018
1,414
So glad yesterday was a success. Is there anyway they can build that up to a few days a week, though I guess the early starts aren't ideal.
 

Pete1

Registered User
Jul 16, 2019
772
Hi @annielou, good news that the Day Centre worked out for Mum 👍 Hopefully Social Care will sort out the care support soon.
 

Woo2

Registered User
Apr 30, 2019
2,012
South East
Brilliant news :)I’m so pleased for you . Mum is always tired after her day out , perfectly normal, she tends to go to bed by 9pm. They do start to get in a routine of getting up earlier , well Mum does , I used to have to wake her up but now she is getting up herself . You may be better to go over on that day, a pain but it’s def worthwhile to have a few hours off , hopefully you can get her to do at least another day in a while . Mum seems a bit less confused if that’s possible since she had been going . I’m smiling from ear to ear for you , Just a gentle warning that one day she may decide not to , Mum did, I just laid it on thick that they needed her help.X
 

canary

Registered User
Feb 25, 2014
12,659
South coast
That all sounds very positive and I think you handled it very well.
I expect she was exhausted when she got back, bless her
xx
 

annielou

Registered User
Sep 27, 2019
1,302
Yorkshire
Thank you for all the replies, thanks for asking and caring how mum went on yesterday it means so much when everybody is dealing with so much themselves XXXXXX
I'm still smiling about yesterday and so is mum :) I'm not really a medication person but I really do think the sertraline mum is taking has helped with her anxiety and agitation and aggression and even though still gets anxious and upset and I still think its more than should be, it is no where near as bad as before. I'm sure that is why even though she was scared and still not wanting to go to day centre yesterday she actually went and then got to enjoy it. Which is what I hoped for.
This morning when I went through mum said I want to ask you something about where I went yesterday I've wrote it down and I did think oh no hope its nothing negative but she just wanted to check what time she goes. She said 'goes' as if its a regular thing now which had me doing an inner happy dance 💃💃💃😁
Todays not been a bad day, she still lost me a few times later afternoon early evening but luckily it wasn't too hard to just go along neither confirming or denying who she thought I was.
She did moan about the lifeline box again when it went off as I went in this morning and said didn't know why had it and didn't want it but when man came out to fix it she was chatting to him and laughing how his folder looked like her knitting pattern folder and joked about them swapping. When he said it had lost timings and it can happen when theres a power cut for a while, mum said she'd turned it off, she didn't know why, she thought it was something to do with phone not working, but she hopefully won't do it again now and never mentioned not wanting it in anyway to him so its still there.
I'm glad it is as she told me this afternoon it talked to her again last night and asked her if she was outside, she couldn't remember when but it was after we had gone home and she couldn't remember why she had opened front door but it might have been when locking it or checking it at bedtime. She has mentioned it talking to her a few times in the last week so I don't know if she has gone back to unlocking front door at bedtime to check if its locked which she used to do before which is a bit of a worry for me. So far the box talking to her seems to be stopping her doing anything else like go outside. It may have happened a few times like she has said or she could be remembering it doing it the first time and thinking its only just happened. I'm hoping its not a regular thing.
Today was her first sertraline tablet at the new dose and I'm hoping it doesn't have any side effects and helps her get less upset and anxious but doesnt numb her, or bring her down too much, I don't want her to take anything that doesn't help her feel better.
We also got appointment for RAPID chest panic clinic in post today for a week on monday after gp referred her there the other day. She did get a bit panicky about it but after I explained gp had said he was referring her to check she's ok, we knew she was going to go and I said I'd be going with her she calmed down and told me to keep letter and remind her on day.
When it comes to appointment day I may be using one of my appointment cards I got the other week to give her as no doubt she'll be asking where's my appointment card all day before we go so I'll give her one of those.
Sis got in touch with SW yesterday about mums careplan and talked about us using mums AA and SDP part of pension credit to organise and pay for it ourselves.
Sis was keen on using a PA and messaged one on their website but when I looked at hours she has available on the council website today she didn't look like was free in afternoons when we'd want her and there neither did other one who did mums area, there were only 2. Also I couldn't see where either of them mentioned working with dementia but sis thought they did. I think we'll probably need to use a care agency so we'll have to ring them soon to ask about it.
Mum actually mentioned carers today and asked if I was going to be it or her 'friend' as she'd said could do it but not every day so I told her I will still be going most of time but we would get someone else so I could have some time to do my own work and things. Mum nodded and said ok but I dont know anybody to ask to do it. I told her we'd employ someone to do it. Sis and I were going to look in to and then she could meet them. Mum said she didn't like idea of strangers coming in house and was worried they'd think she was daft and take advantage too. So I told her she'd soon get to know them and they'd be police checked and its their job and they wouldn't want to lose it by doing something bad. She seemed to accept it ok though at time it actually starts I can imagine she'll understandably be nervous and worried as we all will be.
 

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