Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To “abandon” my son to this…

179 replies

Jessica3075 · 23/11/2023 00:16

My son has crippling ocd as a comorbid to his diagnosis of Aspergers. He is an adult. We have managed to keep him out of hospital so far but today discussion was had re. hospital and possibly sectioning. I was told today there are no beds available so, he’s still at home with me tonight.

I am sick with fear.

He is so so out of control that I have no idea what to expect each day I get home. He’s given everything up (work/gym/all but essential food and water) so that he can accommodate his rituals. The drains keep getting blocked due to him using up to 12+ loo rolls in a bathroom session lasting 4 or 5 hours plus. He’s using 2+ litres of soap a day and he’s mopping the carpets. His body is raw and bleeding in places due to scrubbing. I took away his scrunchie thing for shower gel and he was uncontrollably anxious. I had to give it back to him. I know he’s very ill but I’m scared of him “disappearing” into hospital and never coming out.

I can’t do any more. I can’t help him. I want desperately to help him but I’m lost.

I just don’t want him in hospital as he’s so very vulnerable.

Friends and family say I’ve no choice but to “hand him over” when a bed becomes available but I still feel enormous guilt and pain.

OP posts:
WearyAuldWumman · 23/11/2023 02:13

JANEY205 · 23/11/2023 02:04

I have contamination OCD myself OP and I so sympathize with you and your son. It sounds like his rituals are out of control and because they are anxiety and fear driven I think he will only get better with the professional help. You are doing the right thing! OCD is a mental hell on earth and he is really going through it right now and is hurting. You are helping him. Big hug!

Mental hell on earth is right!

I get so frustrated when people equate OCD with 'being organised'.

PieAndLattes · 23/11/2023 02:57

You wouldn’t be ‘abandoning’ him. You would be being a normal loving parent who recognises that her child needs specialist support and works to get it for him. He’s unlikely to improve without intervention and you are not trained to do that. Where he is now is taking a huge toll on his mental health, and on yours. You would be doing the right thing.

BelindaOkra · 23/11/2023 03:44

Has he had a CTR (Care and Treatment Review)? With hospital being considered & an ASD diagnosis he is entitled to one & if he is admitted should have

https://www.ndti.org.uk/resources/a-family-survival-guide-care-and-treatment-reviews-ctrs

It’s a really tough time OP. The things that tend to keep people in hospital a long time when they don’t need to be there are lack of accommodation and lack of an appropriate community care package. If the plan is for your son to return home to you once more stable then he is unlikely to be lost to the system.

A Family Survival Guide – Care and Treatment Reviews (CTRs) - NDTi

https://www.ndti.org.uk/resources/a-family-survival-guide-care-and-treatment-reviews-ctrs

Thisisridiculous321 · 23/11/2023 03:48

Sending love. Sometimes you just have to not take no for an answer. You won’t be abandoning him.

RantyAnty · 23/11/2023 04:19

He needs to be in the hospital now.

BensonStabler · 23/11/2023 04:38

My Brother was sectioned multiple times. He too had severe contamination OCD, (i also have it myself although much more mildly as does my teenage DD) agoraphobia, psychosis, paranoid delusions, extreme anxiety, depression, complete denial and unawareness of even being ill. He had other obsessive behaviours and had to be in control of every little thing and everyone. He couldn’t handle little changes in his routine or environment. He had unusual behaviour changes and social anxiety difficulties.

He was initially refusing help from Dr’s and family, and he wouldn’t let us us visit him there in the early days.

He seen us as the enemy through his paranoia and he seen certain people in our family as “contaminated”, so he wouldn’t allow them visits either or receive gifts/care packages for that reason. My Dad was one of the unlucky ones who was viewed as both the enemy and contaminated, and cut contact with him to protect himself. As he wouldn’t let any family be involved in his care, which was his right as an adult, we were kept in the dark about how he was doing, what his treatment was, what was the goal and if or when he would get out. So we arranged via staff to help him get an independent advocate (as a pp said). So we could breathe a little better knowing someone else had his back and putting his rights and needs at the forefront.

He eventually got better. After many months of Dr and staff intervention and perseverance, they got him in a good routine that really helped him, and most importantly he was finally put on medication, he was initially refusing any, which delayed his recovery and added to his time in there. He was convinced having seen the movie one flew over the coo coo’s nest - that the staff were wanting to drug him, give him electric shock therapy and dope him to the eyeballs and leave him like an easy to control zombie, his words. He believed they were slipping drugs into his food.

He had weekly regular assessments and discussed his needs and a care plan, we seen a huge difference in him being better in all aspects. He started allowing us contact again. Sadly he didn’t cope long term in supported living when he was out, and his self care slipped and he stopped his medication and couldn’t look after his daily living needs, feed himself or pay his bills etc.

He stopped using even clean dry towels, even if they were clean out the washing machine and dried on a freshly cleaned clothes dryer, he stopped wearing clothes too as he didn’t feel the washing machine got his things clean enough, and maybe with a washing machine having build up of grimy parts or the thought of all the germy contaminated things he put in there, his fear escalated. I think he stopped wearing clothes partly due to fear of the washing machine having germs, there was also a fear of him touching his clothes with his hands to put them on, and the surfaces they would have been sitting on in drawers or wardrobe storage. He was sleeping with no bedding duvet or pillows anymore and slept only on a flat sheet on his mattress. He boil washed that and because he needed it to sleep on his mattress, it must have still caused him great distress to have to use it, as it was just as contaminated as the clothes, towels and surfaces etc.

He was over washing and scrubbing his hands and body that his skin was raw and broken, he was scolding himself in hot baths for hours, toileting problems and like your son overuse of toilet roll to wipe himself after toileting, and for touch surfaces with instead of his hands. He bathed again after every toilet trip.

His lack of drying himself with even clean towels led to him getting skin fungal infections, and he spent too long in water followed by not drying off properly, so literally had really severe trench foot in both feet and hands when he was next section again.

He became too scared to eat, and at first washing down every item of shopping, he wouldn’t even bring the shopping bags in the house, he would leave them outside in the garden and bring them in on bits to wash individually before putting away. He wouldn’t sit down or touch anything when visiting our family home, he soon didn’t visit anyone ever as fears worsened and he became a hermit and agoraphobic, not allowing any of us in to visit him.

He wouldn’t eat anything properly cooked and nutritious, he seen dishes, surfaces, certain foods as contaminated or highly likely to be contaminated. When he was still eating food, he would eat things that were wrapped in the packaging, ie eating crisps directly from the bag to his mouth with no hands, he live off of pot noodles, crisps and would made himself things like sandwiches in stages for example… he would first wash his hands excessively, he pulled the bread out, left it on the counter and went to wash his hands again, then opened the fridge door to get filling, went to wash his hands again, opened the lid on the butter, went to wash his hands again, he got a knife and spread some on the bread, went to wash hands, pulled out the cheese or cold cooked meat slices packet, go wash again, open the packet, wash hands again, pull food slices and put on bread, wash again, then put last bit of bread on, wash, then close fridge door, wash, then eat.

He eventually stopped eating didn’t trust any food sources regardless of packaging, was weak and skeletal and his little frame ever shrinking. It was exhausting watching him try to get through life, let alone actually being him. 💔

So as much as it hurt to see him go into a place like that, he desperately needed it, I don’t believe he would have survived otherwise. He eventually got well enough to happily go out to family homes again and got be an uncle to his young nieces and nephews. Regained weight, and could use clothes, towels and bedding etc again.

You are doing the best thing in an impossible situation. I love what a pp said about renaming her guilt as love ❤️ and another about if it was a physical illness you wouldn’t feel guilty letting him get admitted to a hospital ward. all so true.

My brother has a neurological disease affecting his brain and mental health, if that wasn’t the case, i believe he could have stayed better after the first or second attempts to help him, so your son has hope. You sound like a wonderful loving parent, he’s lucky to have you. I wish him all the help available and a strong recovery. You will both feel better for it in the long term as you know it can’t go on like this. 💐

BensonStabler · 23/11/2023 04:48

sorry for that very long post, i struggle with cognitive problems and communication from the same neurodegenerative disease as my brother. I can’t sum things up anymore.

I wanted to add that my Mother also was sectioned a couple times and benefited greatly in the end. It was utterly heart breaking l, soul destroying, painful and distressing for us and her at the time, and not to sugar coat things - we had some bad times with not so nice staff (but most were lovely) or outbursts and terrifying behaviour from a minority of other patents, but in the end no where else could have helped. It’s just sad that no matter the mental health problems of each individual, they are all lumped in together. So these things happen. My Mum was a very quiet, timid, shy lady and struggled hugely with anxiety, so it was extremely difficult and upsetting for her at times, and therefore the same for us.

I too am going to rename my guilt love, thank you to that poster. ❤️

Muabbl · 23/11/2023 04:58

@Jessica3075 so sorry. I had a milder version of what you describe and it was horrendous. If it helps at all, I wish my parents had stepped in to get me help as my suffering continued for many years. You don’t need to abandon him, but work with professionals to get him support to recover. I don’t know if this was specific to me or a general thing where mental illness is concerned, but I didn’t know how to love and care for myself properly so building self worth and confidence was key. I personally would try and get into his head that he is worthy of support and you will be there… I’d avoid the word recovery simply because to his mind the rituals are essential for survival at the moment. Focus on telling him you are getting him ‘support.’ This is just my opinion of course, from my experience, and I’m no professional on this. He can get better though, I did.

limefrog · 23/11/2023 05:03

OP, I don't have much to add to the already supportive and helpful comments here, other than just a personal experience of a friend who was sectioned earlier this year (also autism and OCD).

She said she actually had a very good experience and she was really well looked after. It really helped her to stabilise her mental health and get better.

She said it wasn't really like being in hospital - there was a little group of people and some of them sort of bonded and helped each other, they had a living room/ quiet comfy spaces and it was a good space to just rest and recover - she really did have a pretty good experience there. She is still in touch with a friend she made whilst she was there.

Please try not to worry. You would be absolutely doing the right thing for him.

Inyournewdress · 23/11/2023 05:31

I have been extremely unwell with ocd in the past and while it is mental hell on earth as a pp said, it also must be so terrible to witness. My heart goes out to you both. This is not abandoning at all, it’s helping your son get help.

People do get massively massively better, your son can recover from this. He will still have ocd but it can be unrecognisably better and under control.

TeaGinandFags · 23/11/2023 05:52

If your son broke his leg or had a heart attack you'd be banging on the hospital doors because he would need their expertise. Why is a mental illness to be considered differently from a physical one?

You have the chance to give him the help he needs so take it. Abandoning him is NOT putting him in expert hands. As much as you love your son he is beyond your help, just as the broken leg snd heart attack would be. Please be kind to yourself.

Ohnoooooooo · 23/11/2023 06:43

We have a lot of ocd in our family including myself and children. One thing I have learned with my children is how important it is to avoid it getting worse - more rituals created more rituals needing to be reduced. My biggest regret is thinking I was being supportive but actually needed to escalate help. I’m sorry he sounds very entrenched - you are doing this because you love him. OCD is about wanting to feel safe. Please read up on the vegas nerve. Best wishes to you.

jemenfous37 · 23/11/2023 06:52

it is tough. Try to look at this another way; if he had a broken leg, or IBS, you would be wanting him in hospital for treatment. His mind also needs treatment.
Completely understand however, your concerns about sectioning and MH care. It's happened in my family, and I know it is scary for everyone.
But please allow your boy to get the help he needs, and you get the rest (physically and mentally) you need. Take care

SwedishSchnauzer · 23/11/2023 06:57

Is he on any medication op?

he will be in the right place with the right support and they will be able to help him. Totally understand it must be worrying

Chipsatsunset · 23/11/2023 07:00

I feel your pain OP but this sounds like the time to let someone take over. We love our DC and feeling helpless when they are suffering is torture. You are doing the opposite of abandoning him. There are times with any condition when extra input is needed. It sounds very much as if this is that time. He needs help to begin to reduce the amount and severity of his rituals so he can improve the quality of his life and feel more in control. When a condition is worsening specialist help is the best next step. I’m crossing my fingers for all of you.

MolkosTeenageAngst · 23/11/2023 07:00

If a family member needed to go into hospital for cancer treatment or due to another physical
illness would you feel you were abandoning them, or would you recognise there are some illnesses which can’t be treated by family at home? It’s no different just because it is a mental illness. You are not abandoning him, you are getting him the help he needs for an illness in the best place to do it - hospital.

Blueblell · 23/11/2023 07:01

Don’t listen to people who say you are “handing him over” you are getting him treatment that can only be provided by medical professionals.

IheartNiles · 23/11/2023 07:09

Op this is an illness. He’s getting sicker.
If this was cancer he’d be admitted for treatment. Try to think of this in the same light. He needs professional help including medication to treat his illness.

JustSettleOnAUsername · 23/11/2023 07:14

So sorry you're dealing with this. Let his mental health professionals know he has an autism diagnosis and (with his consent) he can be added to the Dynamic Support Register:
https://www.england.nhs.uk/long-read/dynamic-support-registers-and-care-education-and-treatment-review-code-of-practice/

This should ensure regular reviews to try to prevent what you have probably heard about - autistic people getting stuck in hospital for years. They can also try to prevent hospital admission wherever possible.

OCD is horrible though.

NHS England » Dynamic support registers and Care (Education) and Treatment Review code of practice

https://www.england.nhs.uk/long-read/dynamic-support-registers-and-care-education-and-treatment-review-code-of-practice

DomesticatedHippie · 23/11/2023 07:24

I am so sorry for what your son and family are going through. My ds also has ASD and OCD and we have been at the point, when he was a teenager, where he was in crisis and we were told our only option was an ambulance followed by being sectioned.

We were very fortunate that he had a good private mh team who managed to talk him down and take swift action to help, so he wasn’t sectioned and although we all went through a couple of years of hell (similar issues with contamination, toilet blocked, using tonnes of shampoo, soap, hand sanitiser, energy for hours of showering a day and trying to control the whole family and home etc). Thankfully, through a combination of psychiatry, psychotherapy and medication, he now manages his OCD with regular medication and mh support, to the extent that he has finally been able to move forwards with his life and is happy. I am so grateful every day that dh’s job at the time had health cover, as like you, I was terrified of an NHS section, whilst at the same time understanding, at that point it was probably the only option to save his life.

I was repeatedly reminded by his team that OCD is a bully, that is a living hell, not only for the patient, but for everyone around them and that it was important to take care of ourselves as well as ds. Also that there are no easy options and we had no choice but to face impossibly difficult decisions for ds’ as he was unable to do that for himself.

Ultimately, if we hadn’t had that support team to give us alternative options at the time, dh and I had agreed that a section was the only thing we could do for him and for our other dc, as no-one could carry on like we were.

I completely understand how lost and helpless you are feeling, but please, please, try to be kind to yourself. Try not to see it as ‘handing him over’ but as helping him access the support he desperately needs but you are neither equipped or qualified to give him. Take the time he is in treatment to rest and recover yourselves. If you can, get some support/talking therapy for yourselves too, as there is no doubt that you are experiencing trauma every day alongside your ds. That way you can be there to support him WHEN, not If, he comes home.

babysoupdragon2 · 23/11/2023 07:30

He's in an acute phase of a very serious illness. There are treatments he will only get as an inpatient.

It's a disgrace that mental health services have been stripped so bare that people are terrified for their loved ones to get the help they need, but there is still good care. There are strict protocols that need to be followed. Inpatient treatment can and frequently does work.

You can advocate for him every step, you can be Mum. It's terrifying, but he can't carry on how he is at the moment

oakleaffy · 23/11/2023 07:37

@Jessica3075 A friend of friend's adult son {Autism} that became so physically dangerous to her {she needed medical attention} that she had no option but to allow her son {whom she loves deeply} to be put into a secure placement.
He seems ok there.
If you are seriously harmed by your son,{or he harms himself} that won't be helping him at all.
It must be a desperately sad situation, but you need to be safe, as does he.

Moonshine5 · 23/11/2023 07:43

Are the crisis team involved to support in the home until a bed becomes available?

SauronsArsehole · 23/11/2023 07:43

I work with autistic kids OP you’re not a failure here. In fact you’re doing what I wish some of the parents I work alongside would do. Accepting what their strengths and limitations are with regards to their children. You know you just can’t help him with this crisis. But You have got in the best people to help him, when they can.

this is going to free you up to be able to provide the love and consistency he needs and get yourself well rested to be able to support him and advocate for him, he is really going to need this when he goes in, so the DRs and nurses get him on the right track with medication etc that he needs.

you’ve not failed. You’re getting ready for a pretty tough role helping him come out the other side of this.

dianashilling · 23/11/2023 07:47

This is really hard and sad to read. My 12yo has OCD and Aspergers (ASD but e were told it would have been Aspergers if they still used that term). Can I ask how/when your son's issues began?

I hope he gets the treatment he needs, whether that's in the community or elsewhere.

Swipe left for the next trending thread