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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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:
Original poster
Jessica3075 · 27/11/2023 23:08

@OneFrenchEgg
How is your son now?

OP posts:
OneFrenchEgg · 27/11/2023 23:13

Thank you @lifeturnsonadime that's interesting. Ours came after the crisis so was kind of helpful in getting back into life again , understanding sensory stuff that could be left and accommodated.

OneFrenchEgg · 27/11/2023 23:15

Hi @Jessica3075 very well in comparison. I would not have expected them to be back at home and managing a lot of every day things at the time. Back here, lost a lot of education and growing up so there are different challenges . But there is always hope and partial/full recovery in the future for people and I think that's a message that I appreciated and want to now share.

Original poster
Jessica3075 · 27/11/2023 23:23

I am going to post two photos of his raw skin. The nurses have suggested he uses something he’s used on and off for years. I feel no one’s listening really. So upset.

OP posts:
VintageBlossomHill · 27/11/2023 23:53

Jessica3075 · 27/11/2023 23:23

I am going to post two photos of his raw skin. The nurses have suggested he uses something he’s used on and off for years. I feel no one’s listening really. So upset.

Ah poor love- that looks sore. Xx

Original poster
Jessica3075 · 28/11/2023 00:50

Backs of Knees. The psychiatric nurse today suggested seeing a dermatologist.

im obviously not going to show the groin area. It looks like he’s had a potato peeler on it.

im in utter despair and he can barely walk due to the pain.

OP posts:
CarrotCake01 · 28/11/2023 00:55

Aww, bless you OP.

As long as you're there for him, loving him, supporting and doing what you genuinely believe is the best thing for him, you are not abandoning him.

At some point, you'll look back on this as a memory, so what do you want to see?

He may not like going to the hospital but there will be people there with more experience in this area that can offer the best advice and support for him.
He doesn't sound well right now but I'm sure things will improve. Things will click into place for your son, I'm sure!

Original poster
Jessica3075 · 28/11/2023 00:58

There are no beds. They put him on Valium. Thats it. No dr. No meds. Valium for 7 days.

OP posts:
Mirabai · 28/11/2023 07:42

I’m sorry to hear that OP.

You’ve got nothing to lose at this point by finding a private psychiatrist who specialises in ASD and OCD, they can refer him to OT or general psychotherapy (as well as prescribing meds).

That should be covetable on your AXA - it’s a lot cheaper than inpatient therapy.

Original poster
Jessica3075 · 30/11/2023 21:03

We are to be referred back to Maudsley now he’s old enough for a bed, but the wait is long.

He’s in an assessment unit. No beds anywhere. I’m sick of this country.

OP posts:
Scutterbug · 30/11/2023 23:27

Oh goodness, MH services here are absolutely shit, I’m so sorry. And if you get sectioned like I did, you come out the same as you went in. Absolute shit show.

Original poster
Jessica3075 · 30/11/2023 23:37

Why is it so atrocious!!!!?

The psychiatrist who came out on Monday said “one these wards there’s noise, often aggression and violence and it is NOT the place for DS. That was the Dr! 🤦‍♀️ Then where IS the place.

OP posts:
Lavender14 · 30/11/2023 23:38

Ah op, it's clear from your post how much you just want the absolute best for your ds and it sounds like you've done everything you possibly can to support him and keep him safe. But if you've done all you can and you're genuinely worried about what you're going to walk into when you come home then to me that's a sign that he needs more than what you can humanly provide right now.

It's very difficult for someone to be sectioned so if they're suggesting it, then it means they really believe it would be of benefit to him. Most treatment plans for inpatients now are very very focused on getting them back out into the community as soon as possible to avoid people becoming dependent on a hospital setting to feel safe. It might help to discuss your concerns with whoever his care provider will be and hopefully they will reassure you that is the way they try to work. I've seen young people in similar frames of mind be sectioned and it's honestly been transformative for them because the care they needed just couldn't be provided in the community in the way they needed it.

If things proceed, I'd try to have a plan for yourself as well op. It sounds like you've been absolutely focused on your ds needs and his care for a long time and it would make perfect sense for you to feel a whole load of different things if some of that was suddenly taken off your shoulders. Maybe a bit of counselling if you don't already, would give you space to process what's happening, or have some projects or hobbies or meet ups with friends planned that you can fall back on when you're having a difficult day or feeling at a loose end. Caring for someone is a huge thing, it's a big act of love and it can feel like a massive part of your life so you're not alone in fearing what might happen if your ds goes into hospital, that's very, very normal. You deserve support with this too. Are there any carers support groups or peer support programmes happening in your area that you'd consider? Maybe speaking to some other parents who have gone through it might be a good source of support and information.

Just be gentle with yourself op, it's all a lot and you're only one person.

flourella · 01/12/2023 00:13

Hi @Jessica3075 . We spoke a little on the other thread. I have been thinking about you and your son and checking this thread every day.

I'm sorry that your son is in an assessment centre and still in acute need of help. Will he be given a bed when one becomes available, despite the psychiatrist's words?

When you say that you are being "referred back to the Maudsley now he's old enough for a bed", do you mean for planned, specialist OCD treatment at the ADRU? If yes, have the local team spoken to them about this referral? I am asking because the ADRU is a residential unit not a ward, and as staff are not present overnight and at weekends, patients with very severe difficulties regarding eating, drinking, washing, etc, who are deemed to need nursing care, will not be accepted. If you remember what I wrote outlining some of my own situation, I have been told in the past I would not be eligible for treatment at the ADRU, so the only NHS inpatient option for me would be at Springfield Hospital in SWLSTG Trust where there is an OCD ward staffed by nurses 24 hours a day. I would imagine from what you've written here that the same may apply to your son.

I am telling you this in case it does turn out to be the same for your son, so if Springfield hasn't been discussed at all because he has previously had contact with the Maudsley, perhaps you could ask just to be sure that the most appropriate referral is made at the outset. The national specialist services have a monthly meeting to discuss all referrals so they would find the best option eventually, but obviously you don't want any time wasted. If the above has already been discussed and it is agreed that the ADRU will take him, or there is some alternative inpatient option being suggested for him by the Maudsley trust outside of the OCD national services, I apologise for the irrelevant information.

Mariposista · 01/12/2023 01:13

OP if he had a broken bone or was struggling to breathe he would need to be in hospital for treatment. This is the same. Part of his rain is faulty and needs treatment. He is a very unwell man and needs help. You have done your very best but you aren’t equipped to keep him safe here. Please let him go and get help.

Rarewaxwing · 02/12/2023 13:58

I hope your son gets the right support, OP. I understand your fear about him going into hospital, but it's so difficult to get that treatment that I think you can safely say that if he's accepted, he definitely needs it.

I also have an adult son with OCD, so I understand the struggle. 💐

Original poster
Jessica3075 · 02/12/2023 20:24

@Lavender14 Ds is now more settled and I suddenly have some space for myself but have no clue what to do with it; so many years have I been the sole provider.

I have few but close/lovely friends but my day to day existence has been DS. I’ve no idea what I’ll do if he’s away for some time.

I did join a carers support group but wasn’t that interested in the activities. Too much “making” things (crafts/cards/crochet brooches). Not really my thing, tbh.

I’m pretty lost.

OP posts:
Original poster
Jessica3075 · 02/12/2023 20:26

@Rarewaxwing Tbh, I think the pair of us being apart is a help. I’ve tried to do too much and it’s affecting my own health.

I just think, people should not need to get to rock bottom before they receive the help they need.

OP posts:
OCDmama · 02/12/2023 21:43

Bless you both, he sounds so desperately unwell and he must be feeling so incredibly anxious to be doing what you describe.

Tbh I don't think you have much of a choice OP. Your poor son absolutely needs intensive therapy and treatment ASAP. He is not going to get better at home. I think you need to consider if this were a physical disease (which it is fast becoming, with the compulsions he has), you wouldn't hesitate him having to go in. You've done the best you can.

I really hope the admitting goes as smoothly as possible. It's the right thing to do. Also take some time for yourself, it must be heartbreaking.

Mirabai · 02/12/2023 22:09

Jessica3075 · 30/11/2023 23:37

Why is it so atrocious!!!!?

The psychiatrist who came out on Monday said “one these wards there’s noise, often aggression and violence and it is NOT the place for DS. That was the Dr! 🤦‍♀️ Then where IS the place.

This is what I was trying to tell you above.

For the moment I would try to find a private psychiatrist who specialises in ASD (and OCD)

BellsRingingOut · 02/12/2023 22:19

@Mirabai did you miss that the OP said this wasn't an option as AXA wouldn't cover her DS's treatment?

Mirabai · 02/12/2023 22:59

Did you miss the bit where that refers to trying get him a private psychiatric hospital as an inpatient? Whereas I’m referring to seeing a private psychiatrist as an outpatient. No reason for AXA not to cover that.

ThreeLocusts · 02/12/2023 23:29

OP given what you've been through you're amazingly lucid and calm. And how could you not be a bit lost.

It's good that you have some time to yourself though. Here's hoping you find something lovely to do with it. Maybe go for a walk?

I'll just cross my fingers tat something gives for DS. You so deserve a break. Flowers

BellsRingingOut · 02/12/2023 23:31

@Mirabai the OP's DS is in crisis currently. Guessing you are talking about a private OCD consultant psychiatrist-led programme with psychotherapist support as an outpatient. I'm pretty sure that this would not be considered appropriate/covered when the patient is still in crisis. The OP has already said AXA will not take on his case due to ASD/OCD complexity.

Mirabai · 03/12/2023 08:56

It’s not AXA that will not take on the case. AXA is the insurer. AXA has said the Priories local to the OP will not take DS on as an inpatient.

But OP can look for a psychiatrist with an NHS and private practice and see them privately. It’s not ideal but it’s better than nothing in the circs.

Of course seeing psychiatrist is appropriate when you’re in crisis.