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To keep going regardless? Please remind me why I should.

7 replies

Livingtothefull · 22/09/2023 22:09

I hope I don't get a trigger warning for this as I have for previous threads. The theme of 'personal care' for people with special needs is a little too much for at least a few people, some of whom have complained previously about what I post resulting in unsolicited trigger warnings being placed on my posts.

Anyway here goes - I have no wish to upset anyone but this is the reality of what we deal with so I beg you to understand:

My adult DS has severe physical and learning difficulties. He came home today from his weekday adult care (DH & I both work full time during the week so had finished work today - were tired to start with). I bought him a new outfit and we arranged a takeaway meal for him. Last weekend we gave him a lavish meal out. So, we go out of our way to please and centre him.

DS felt hard done by because we were having a takeaway rather than taking him out for the evening which he prefers. He did a poo and we had to change him (he wears incontinence pads). DS got angry because we weren't going out and decided to protest. He lost it - started grabbing his bottom with his hand, swallowing his poo and smearing it on the wall. It is hard to stop an adult from doing this but we restrained him as much as we could. Cue massive job cleaning him up, cleaning & disinfecting the wall with him fighting us the whole time.

We sent him to bed and he fell asleep, then salvaged what was left of the evening. I followed up on a few pressing issues at work (believe it or not) now I am sitting here with a glass of wine having had a cup of tea. As in G&T.

My question is: why do you think I should keep going? There is nothing that can make one feel as drained and worthless as, of an evening, having dealt with a considerably stressful job, both cleaning up someone's shit and absorbing their anger - and it is not his fault so I can't respond. So yes I feel worthless.

OP posts:
Highlyflavouredgravy · 22/09/2023 22:14

Is it time for him to not live at home any more? Is there an option for some residential care/ supported living accommodation?

NameandShame · 22/09/2023 22:17

It doesn’t sound as though the weekends are working. Maybe you could visit for a few hours, that does sound more than enough

ImaniMumsnet · 22/09/2023 22:27

Hi OP,
We're just bobbing on here to say that we're so sorry to hear you're going through this.
We hope you don't mind, but when these threads are flagged to us we like to link to our web-guides, which we hope may be helpful. If you'd like to, please do feel free to take a look at our Mental Health page.
Very best wishes from all at MNHQ Flowers

Mental Health Webguide | Mumsnet

A guide to information and services related to mental health support. Find reliable organisations and support services here.

https://www.mumsnet.com/i/mental-health-webguide

EezyOozy · 22/09/2023 22:30

Fucking hell Op. You poor thing. As he is an adult can he not move into a supported living set up where you visit?

IfOnlyOurEyesSawSouls · 22/09/2023 22:32

Why should you keep going?
Hes your son and none of this is his fault ( nor anyone elses).

MolkosTeenageAngst · 22/09/2023 22:32

It sounds like your son needs more care than you are able to provide. I work at a residential special school & college where the children and young people have very complex needs, many needing 24/7 2:1 care. When they leave us in adulthood they go on to live in residential settings, very few live at home with parents when they need so much care. Have you spoken to social care and found out what kind of placements are out there for adults with your sons needs? Does he have a social worker you could talk to? If he’s under 25 does he have an EHCP outlining his education, health and social care needs? It’s totally reasonable not to want to carry on, and you shouldn’t have to, your son should be entitled to a residential adult placement which meets his needs and it shouldn’t all fall to you as parents.

YeOldeBuxomWench · 22/09/2023 23:06

Sorry to hear you are going through this OP. You are amazing having a challenging job and a challenging life outside work too.

My son is 4.5 and has autism and complex needs. He is non verbal and isnt likely to be independent ever. He us a joyful character but it stresses me to think about the future. We are likely to be in your situation too but in our 60's. I'm so anxious about it.

I hope you are able to find some respite care. I don't know how the system works as I'm just starting out on this journey, but it is failing so many people.

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