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Toilet regression in ASD adult. Desperate need of help

NAS84211

Hi . Im just generally looking for some advice from people who may have experienced the same or similar issue alongside somewhere to just cry in all honesty

I have been the full time carer and guardian for my sister since 2015 when both our parents passed away. We also lived with our grandmother

My sister and i have a very good relationship and historically are very close. Hence why i decided to take over her care. I work full time and we fell into a really nice routine with a good care team that came in the morning and afternoon allowing me to work and keep some of my independence.

That was before 2022.....my grandmother's health started to decline and around the same time i noticed my sister having bouts of urinary incontinence. This increased over the course of the year and then started to include occasional faecal incontinence also . My grandmother eventually ended up passing away and all hell broke loose re. The incontinence. The thing is my sister attends a day centre and has had NO issues with going to the toilet independently or asking for help when she needs it. She has completely and utterly regressed at home. This has led drs to rule out any medical issues. Aside from my grandmother being unwell and passing away nothing else changed in her routine

I recently was able to purchase my dream house and we moved in over the December holidays but ill be honest in the fact that i just want to walk out into the water thats by it. I tried my best to keep as much as i could as similar as possible and we were able to slowly transition across to the new house and she SEEMS really happy and settled, knowing where everything is (including the bathroom)

However, my sister has had near constant incontinence unless i get her to go to the toilet hourly or half hourly (even then she may not go and then go to sit downstairs only to have an accident ) .She doesnt need to wear incontinence pads to her day centre but ive had to put them on at home because i cant keep up with the washing and now the potential risk of getting poo on everything. I dont know if that is giving her mixed messages too. Im worried im just doing everything wrong

I have booked another drs appointment for Monday as i think she may have developed IBS as a side effect to one of her epilepsy but im terrified ill just break down and say i dont want to care for her anymore....would she just be better off somewhere else.

Its just really really horrible. I'm only 36 and i just want this to end but i have no idea what to do. Can i potty train an adult...do i just wait it out? I absolutely hate my life at the moment and the stress of last year now coupled with this is making me withdraw from her (which i know probably isn't helping)

Ps we have no other family. 

  • Just wanted to say as others have that I feel for you in this situation, and you do sound like a very compassionate caring person. Haven't really got any advice, just wanted to kind of give some support. Hope things get better for you soon. 

  • I lost my dad this year and it's hit me in strange and unusual ways.  I ended up having to deal with his personal care when he was no longer able to get put of bed.  And although it was weird in some ways, and all the NT people in the house were rather embarrassed about it, to me it was just another part of looking after him like giving him medicine or food.

    It's possible that your sister may be having a response to the grief.  It may be out of her control, or it might be something that she's doing on purpose because she wants to feel looked after.  She might be using up all her spoons while she's out during the day, trying to be what other people want her to be, and then when she gets home she just wants to be safe and relaxed. 

    Our culture has certain social constructs, and one of those is that an adult should use the bathroom a certain way and if they don't, then they're a failure and there's a sense of shame about it.  But actually, if someone needs to use pads, even if it's just in some situations, then that's just another aspect of their care needs.

    The effort you've taken with the house move shows how much you understand her needs and work to make sure they are met, and that's wonderful.  You're one in a million.

    I've got two children, and did nappies for both of them over a period of years.  And that was never an embarrassment or a problem, though it was smelly at times.  Changing my dad didn't feel much different. 

    A lot of people use shame and embarrassment as a way to reinforce potty training.  I don't think that will help your sister because, as I'm sure you recognise, she's going through an emotional response.  I would suggest let her use the pads at home without judgement.  It might be that it's just a phase that passes, it might not.  But try to find a way to be more comfortable with it.  Help her feel cared for.

    I've just dumped a load of thoughts here, and I don't know if I'm right, only that this is how I as an autistic adult read it.  But I do want to tell you that you have done an amazing job so far and even if you reach the point that it's too much, that doesn't take away from all the love that you've given her so far.  You sound like an amazing person with a lot of understanding and compassion, and whole heap of strength, and obviously having been through these losses as well that's going to take a toll on you too.  Be kind to yourself and make sure that you look after yourself too.

  • Ahhh you poor thing

    I admire you so much in your commitment to look after your sister. it feels like she has reached to the recent loss for both of you. I am thinking of both of you         with love Richard