So fed up today! We sorted out a lovely PA for my daughter and she has done 2 weeks and I thought they were getting on well and daughter rings me last night and says she doesn’t want her any more. We interviewed several and she was the best by far. I have been doing everything for her since last June and it’s too much.
Just the other day I was feeling great knowing that daughter was not riding round aimlessly on buses by herself or ringing us every hour or so or constantly texting. I was even thinking I might start doing some voluntary work or get more “me time”. How wrong was I.
When I ask her why she doesn’t want her she is coming up with ideas like she is bossy, she doesnt find things for them to do (she actually has), she doesn’t know much about special needs etc. When I interviewed her I was really confident that she was a nice person who already supports another lady and was willing to do other courses to broaden her experience. I know very quickly if a person is genuine and I was happy she was.
I now have to sort this before the PA turns up tomorrow morning. Trouble is advertising, form filling, photographing passports, more form filling, interviewing etc all takes so much of my time. Before Xmas another lady did a day’s trial but she didn’t like her either.
I told her to come to ours today on the bus and we would discuss but she has rung her Dad and said she’s not coming. He is fed up with it all too. I don’t want the PA to go to her flat tomorrow and then not be let in! Oh dear.
@Penny
Geez. No words just sitting alongside you with a BIG mug of coffee, and side hugs
I can hear the sound of hard grinding - just can’t tell if its teeth or you running hard not getting traction…BIG hugs of empathy
I really think your daughter is trying it on. You should put your foot down and tell her it’s this PA or no-one. If she gets away with it, she’ll just keep rejecting them and you’re going to be constantly going round on the same treadmill. And contact the PA and warm her what might happen in the morning perhaps she can talk her way in. Also ask her if something has prompted this turnaround, I’m guessing it’s because she said no to something your daughter wanted.
I can see why you might think that Mrs Grumpy but it is not that clear cut. She has learning difficulties, Autism and is now 40. If I say it’s that PA or none she will say that’s fine. But who then is supposed to step up and help her? Me of course and after doing it from last June until now I am exhausted and need some time for myself.
If I don’t she will be riding around on buses, talking to strangers and not knowing when the next bus comes. She constantly texts me so I am on call all the time. I am just not having that. It is too much of a worry. She is so vulnerable.
She understands that I will not be here forever and I am trying my very best to help her be independent and at the same time, safe.
I worked tirelessly for 4.5 years trying to get social housing for her and her boyfriend and myself, my husband and son have decorated, carpeted, curtained, furnished it and it really is a lovely, big flat in a very nice area.
I have got the social worker to get a referral for her to see a psychologist. No idea how long that takes.
The PA is meeting us tomorrow and I have just told her it’s for a catch up. She did ask me if she was OK yesterday… She said when she left yesterday my daughter was fine. I just said she was a bit moody.
Forgive me for being nosey but what was happening before last June? I still feel you’re being played here, she’s not so bad that she can’t live independently albeit with someone to keep an eye on her. Her complaints about her PA were fairly specious and sounded like she’s not pandering to me enough - unlike good old Mum. It’s also appears you haven’t put her PA fully in the picture which I think is only fair, you need an ally here.
Perhaps both you and the PA can work together with your daughter for a few weeks until your daughter begins to see her as an alternative to mum and you can gradually withdraw. I fully appreciate your need to get some relief sooner rather than later but I feel you need to do some groundwork first and prepare her for the transition.
This morning’s meeting is hopefully a chance to put PA in picture and try to iron out any issues.
Not good at remembering dates but I did everything until I was offered a couple of respite breaks a year. They were great and she loved going to stay with a lady who lived by the sea. I guess about 10 years ago the SW said she could have a PA. The first one was young but she was very bossy and always on her phone. She stayed about a year then went to a job with more hours. The next one was older and very good and we had her about 4 years until she retired.
We had an agency for a couple of years and most of the women were great but the Manager was hopeless and either told people the wrong time to arrive or forgot them altogether and this just will not wash with autistic people who need a firm routine. We are still in touch with a couple of ladies from there and they say they loved working with her.
Next we had another agency and on the first morning they didn’t turn up so we rang and she was just leaving a town 1.5 hours away! They didn’t work out.
With her boyfriend there all the time they can cope but on her own, when he is at work, she can’t. She texts or rings all the time.
Oh it was you @Penny ! I remembered someone posting on here about their daughter and I couldn’t remember who it was.
I have a sister who is in a similar situation - almost 50, could possibly have autism/special needs/learning difficulties/making it all up as she goes along. Unlike your daughter, this one wants to just stop in bed almost all day. Mum cannot look after her as she is elderly and very frail so I end up doing everything for her. What she doesn’t realise is Mum is not going to be around for forever and since I got covid/long covid, I am running on about 30% instead of 100%. No idea what she thinks is going to happen when Mum is no longer about because I am cutting my chains and running. I have 0 time for her and I am past caring now. If she ends up in the gutter, so be it!
When you have any future chats with the PA and your daughter, why don’t you do the salt pot thing we do when mediate with young people and families. You are the referee. You put the pepper pot in front of your daughter and she gets to speak, everyone else is quiet. Then you let the PA speak with the pepper pot in front of her etc. It seems to work when we visit clients and you can end up setting up a plan of action. I’m unsure how it would work if your daughter is autistic etc but you can always give it a whirl.
Hugs Penny.
It’s all very well having theories about “living in the community” but it just doesn’t work in practice.
I went away for a week, I felt on the verge of a breakdown from exhaustion.
I called in a M’s to get my jacket I’d left behind, and to spend a bit of time with him, but I now have more jobs!
He now has more time with a better support worker I get on well with, as another has just left that M had already said he didn’t want support from, but nothing seems to work long term.
Have you thought what would happen if you went away for a few days?
Is that what it takes for daughter to realise that she can’t choose to just have you?
I’m sure that’s what she really likes!
Ha ha, I think not BB. If we go out together she walks miles ahead of me. If we go for coffee or lunch she barely speaks. If she does, she tells me she prefers her Dad or someone else’s mother. When i went to her flat yesterday she buzzed me in downstairs and i went up and just opened her door and she said “you don’t just walk in here. You should knock.” We had to laugh when I was relaying this to my husband he said “yes like they do here, not”. He says he is going to lock the door next time we know she is visiting.
Hi Penny, our children are all unique, and we have a social “care” system that just wants them to all fit identical pigeon holes regardless of their likes and personality.
Update.
Our meeting started with a grumpy daughter. She hinted that she might not want the PA anymore. I told her to say why and she gave a few reasons. Then the PA explained that she was being totally flexible with her hours and she had rung loads of places to get info on what was on locally but this time of year it’s limited. We had coffee but daughter didn’t but then she suddenly changed and was talking fine to the PA. We discussed just about everything for 2 hours with her partner ducking in and out.
The PA and I left together and we had a chat in the car park and she told me my daughter says things that she knows have come from her partner. He also has special needs but never diagnosed. Like he said the PA is fiddling her hours. She isn’t. We agreed 15 flexible hours a week. So basically 5 hours x 3. Then if she wants to go further afield and it’s a longer day it might be 7 and 8 hours over 2 days so she wouldn’t work the third day. He thinks she is fiddling the hours so she can get a day off!! we have explained this a few times to both of them but progress is slow.
Anyway PA has suggested a couple of things they can do next week so fingers crossed.
Never heard of that but when my kids were younger and we had their 3 cousins round for tea i used to put a wooden spoon in the middle of the table and the person who picked it up could speak uninterrupted.
Sorry there’s not much progress with your sister. Didn’t you say you were going to look at day centres for her?
It’s very hard work but I always keep at the front of my mind that my daughter didn’t choose to be like this and has had a hard time over the years because if you are a bit different the majority of kids don’t want to pal up with you. She therefore spent a lot of time with us which she often didn’t want to do but there was no choice. I am sure your sister was the same.
The PA actually said to me that my daughter is so lucky to have had us as parents which boosted me a bit as I often feel a bit of a failure.
I may have said that but not anymore. She refuses to do anything or make any progress and I have enough problems as it is - long covid, doing everything for Mum. I’m not willing to do anything more for her. She is on her own. Sorry if it sounds horrible but she’s a lost cause and I am not her parents.
Don’t EVER think you are a failure, you have done so much for your daughter. You come across like a wonderful person who is very caring and puts your daughter before you at all times. Trust me, I work with young adults and the general majority of parents we work with kick the kids out aged 15/16/17 if they have autism/adhd/learning difficulties.
