Struggling with work

[LeeLeesmum1]

So long story short , my son is 17 , has an unknown condition and has been undiagnosed for over 17 years for the best part of 10 years I've been working as a home support worker , I gave up my job in September of 21 as I was really struggling with working nights and also having to provide him with the care he needs , he is non verbal cannot walk talk hear or see , he is in respiratory failure has epilepsy , sever obstructive sleep apnea hydrocephalus, gastric issues bladder issues and bowel issues to name a few , my husband who isn't my sons father was really struggling with the night time care routine , as he has sever anxiety and depression is on heavy medication and was having nights where he'd sleep through alarms etc and this in turn was making the anxiety worse for him . So I gave up my job on nights , I worried as I didn't want to rely on benefits so started working again in December in care but doing day shifts but the past five weeks have been so hard , having to deal with my sons care 24 hours and still having to go to work on day shift I'm having to use annual leave for hospital appointments and times when my sons been sent home unwell . I'm at my wits end I feel like I'm drowning in it all , we get absolutely no help from anyone , and the hospice hasn't had any respite cases for nearly 2 years now . I don't want to be that person having to rely on benefits but I'm struggling to find a solution that works , any advice would be massively appreciated. A tired stressed and completely exhausted mummy ❤️

I’m not surprised you feel exhausted. You poor thing, you have so much to deal with. It sounds like you need a rest not more work, but that’s just my opinion. Would it be worth looking into receiving some support if only temporarily?

Has DS been assessed for continuing care funding?

Has he had a social care assessment? And you a carer’s assessment.

Have you spoken to Well Child?

If DS is suspected of having a SWAN have you been in contact with SWAN UK.

Time for a needs assessment and also a carer assessment too. Also talk to SWAN UK and well child as well about getting more support in place. If you have not already done so, apply for benefits like disabled living allowance and so on. You can apply to your local council in order to begin the process, it is a somewhat lengthy one so the earlier the better. Good luck. You are in my prayers.

Sorry ladies I'm just seeing your replies it's been a pretty horrid few weeks , we thought we were getting somewhere with sw with a sds care package , had a care provider in place all set to go from the end of January but low and behold it's all fell through we now have sw number 5 out telling me that what sw 4 said was nothing but lies basically and that we need to go through the whole process again , I feel like just telling them just to forget it , it's draining I feel so helpless no matter what I try it always always comes back to bite us in a bad way , I feel my sons been left to rot , I feel terrible for wanting more for him because it feels like im trying to palm him off but that's not the case I just want him to have something in place for when he leaves school and a social life that doesn't involve hanging around with your mum all the time 😢 I will contact we'll child and see if they can offer any advice we've already been in contact with swan uk but never really got anywhere with that , I know services are really stretched just now , I totally understand that but it's just hard 😢

Has DS had a Continuing care assessment?

Does DS have an EHCP? Support via that can last until 25 even if DS has left school.

The only assessment we've had is for sds , he had a coordinated support plan in place but this was scrapped by our local authority a few years ago now x

DS should still have a CSP, have you spoken to Enquire?

Continuing care funding was replaced in Scotland by Hospital Based Complex Clinical Care. I don’t know enough about it to advise but it is worth investigating.

Thank you I'll have a look on to it , our cps was a legally binding contract but was scrapped I think i 2018 unfortunately x