Ds ocd is taking over our lives

[3teens2cats]

At my wits end with ds18 and his ocd. He is on the waiting list high intensity cbt but in the meantime it's impacting every area of his life and now ours too. His obsessions and routines are around hygiene, food and sleep. They snuck up on him because at first we thought it was great he was wanting to take care of himself a bit more but now he eats a totally separate diet to us which is exactly the same goods every day and they have to be weighed do it's exactly the right amount. His bathroom routines take literally hours because had to wash his hands for 2 whole minutes in-between touching anything. He has to get exactly 8 hrs sleep and times his whole day around what time he must go to bed, only because of his food and hygiene routines he frequently goes to bed late which means he gets up late, misses college and starts the day on the back foot. He won't eat outside of the house so that causes no end of problems because he then has to eat his whole days food, which remember is very precise, in the evening. It's exhausting being around him, he barely leaves the house and he's missing out on all the usual stuff an 18 yr old should be doing. I am looking into private therapy. I k know we are enabling him but he's barely functioning and I am terrified of how he will be if we refuse to buy his specific foods or make sure we are finished in the bathroom stupidly early. I just don't know what to do.

Absolutely get him to go to the GP for something like fluoxetine. It's not curative but it helps. Initially there can be side effects but once he gets through the first two weeks it will start to benefit and is something a bit easier and quicker to do whilst awaiting therapy. The combination of medication and therapy is the most effective treatment

DS was prescribed Setraline recently but decided to not take it. Personal choice but there is medication available.

I've lived with it, pandering to them made things worse not better Obviously OP is doing the right thing in getting help but bending over backwards to accommodate her ds will make matters worse.

Some of the comments on here have blown my mind! Don’t enable him, tolerate him but don’t let him impact you so much. Jesus Christ wept. Op if your son ever breaks his leg, don’t let him use a wheelchair will you, it’s just enabling him, he’s got to walk again sooner or later.

Sarcasm aside; he sounds so unwell. I’ve had OCD and I’m much better now. I take fluoxetine and I had a year of CBT. I would take him along to the GP, would he let you go in with him? The CBT made me realise how poorly I was and I always say the fluoxetine made it easier to implement what I’d learned during my therapy

I read once that ocd is one of the most debilitating mental conditions in the world and when I was in the midst of it I have to agree. It completely consumed me and my life. I wish I could offer more advice but I really just wanted to say you have my sympathy x

Just to jump into the argument about enabling, every OCD charity website states that having family members take part in compulsions reinforces the idea that they are a proper response to the trigger. The OCD takes that and grows, adding new compulsions.

I'm sorry your son is so poorly, OP. OCD is such a nightmare for both the sufferer and their loved ones.

But if you have OCD and have recovered with CBT you know that the broken leg wheelchair analogy doesn't quite fit

It's more like if your son broke his leg and you nursed him in bed for weeks on end. Short term it might seem helpful and would relieve pain but in the long run there's a lot of negative consequences like muscle atrophy that will make it harder to recover.

No one is suggesting OP should be mean to her son, unsympathetic or care less about him just sounding a note of caution about accommodating behaviours

ysph.yale.edu/familyaccommodationocd/about/

(The OP was actually the first person to use the word enabling 'I know we are enabling him' and others merely agreed that was a bad idea).

It doesn’t sound like the medics realise quite how bad it is if they haven’t offered medication. I’d be going back to whoever his clinician is and asking for more support from them with more immediacy. Unfortunately through my professional role I know those that press harder, and describe things in black and white, are the ones who get the support for their kids.

You're right. I said it first. And I have explained in pp how it starts as just wanting to help but is a slippery slope and suddenly you realise you are complicit. Trouble is though I don't really see a point where I should have said 'no'. It creeps up slowly and none of his requests individually seemed a problem at the time.

You can make a start by giving him 5 htp. It's available online and in stores like Holland & Barrett.

www.jamesgreenblattmd.com/functional-treatment-of-obsessive-compulsive-disorder-townsend-letter/

He has been to all appointments on his own. His choice and right so I don't know how much he had actually told them. I only know what he has told me and what he has showed me in the patient letters.

I suspect he hasn’t told them exactly how it is, and just what the impact is on his day to day functioning. This is always an issue unfortunately. He may well not be able to describe accurately what’s going on.

Yes to this.

Also, get him into private therapy as soon as you possibly can. Make calls on Monday.

I’ve not read them personally, but I’ve seen other MNetters reccomend the following books

• The OCD workbook
• Freeing your child from OCD

I have gained a lot (in terms of helping my MH issues) from reading self help books

I agree with @FacingTheWall wrt what he may not have told the HCP.

That's exactly it. He can't see how bad it is. He knows his behaviour isn't typical. He acknowledges he has ocd but doesn't see how different his life is to those of his peers or even his older brothers when they were his age.

My friend suffered with very severe OCD for a few years.

She was happily married with kids and a lot of her ‘rituals’ were around keeping her kids safe.

She has done permanent damage to her hands from checking the doors were locked and broke multiple doors and window handles because she used to squeeze them and lean on them to check they were locked.
The rituals started to take hours every evening, she had to do a series of ‘checks’ which involved checking doors were locked, smoke alarms, windows closed, appliances disconnected etc…
Each check had to be repeated 7 times and if something was disrupted then she would start again. The checks started taking longer and new rituals would appear like she had to jump up and down 7 times in a certain way before bed. This would often have to be repeated several times as it was so specific she couldn’t always complete it how she wanted. She also started doing little twirls and she would be in tears of frustration with herself because she knew it wasn’t logical but was scared something would happen to her kids if she ignored the compulsion.
She once phoned me sobbing saying she had spent hours jumping up and down and the whole time she felt ridiculous and hated it and was exhausted but felt like she was fighting against her own brain.

Her husband left her and the GP wouldn’t take it seriously, eventually I went with her to an appointment with a new GP who actually listened and took it very seriously. My friend was prescribed SSRIs and referred for CBT. Within 6 weeks of taking the SSRIs she had 4 hours of checks down to 30 minutes, after taking them for 6 months she sometimes had to be reminded to lock the door!

My friend says now that she wishes she had got more help before she lost her marriage, she doesn’t blame her husband because she knew it was hard for him to sit on his own every night watching her perform her rituals. She was also anxious and snappy and pushed him away. They are still good friends but the relationship just couldn’t survive.

I have OCD and was diagnosed over 15 years ago. It affects my relationship but it isn’t as severe as my friends was and I’ve learned to live with it to an extent. I don’t have any rituals, my biggest issues are hygiene, cleanliness and order and I have set patterns and routines, I can’t take SSRIs, I did try them and they made a big difference but due to another condition I couldn’t stay on them long term.

OCD is so misunderstood and the term is bandied about when people are just referring to a tidy person with good organisational skills. Real OCD is a horrible condition that takes over peoples lives and brains. The pp who commented about knowing it’s not logical to tap things but wanting the feeling of safety explained it well. My friend was a tapper but she said she’d rather go round tapping things then believing her children would die if she didn’t to make other people feel better.

Things will improve OP, it sounds very frustrating for you but you sound like an understanding, caring and supportive mother who realises that your son isn’t just being awkward and I’m sure he’s grateful that you have so much patience. It’s understandable when you do lose patience though, I can’t believe my DP puts up with me sometimes. It’s not easy to live with someone with OCD.

I hope you get some outside help and support soon, this isn’t a sustainable way for any of you to live.

This.

Is he claiming PIP?

I don’t know anyone with OCD and know little about it.
However, I suffered for years with major depressive disorder and I remember my family telling me to “snap out of it.”
It isn’t a mood.
And neither is OCD - I know that much.

Brainlock is a very good book. It really helped me and I still employ the 4 steps 20 years later when I get overwhelmed with intrusive thoughts.

I only ask because he sounds eligible and you could put the money towards seeing a private psychiatrist and/ or therapist

My brother was struck with severe OCD recently. He managed to keep it quiet until he couldn't anymore because he lives alone.

He's got control of it now, but you HAVE TO STOP enabling things. He ended up on medication and paid for private therapy. Every single time you do something that enables the OCD cycle, it gets a tougher hold. It will be painful and exhausting, but you have to stop enabling. CBT didn't help him, but exposure therapy did.

It's a hard slog I'm not going to lie. He would get angry and lashed out, but you have to stand your ground.

Have a look at Bella Mackie's instagram (she is married to Greg James). She has suffered from OCD and anxiety from childhood/teen years. She is very open about her story and hopefully that will help others. She has done a really great podcast with Annie Mac & I would have only dreamed of listening to something like this when I was suffering (to normalise it) back in the early 2000s. She talks about sertraline and how it is currently helping her and how she has been affected and dealt with her OCD.

I realise you want to get him properly assessed and find the correct treatment pathway for him, but listening to real people's stories can offer comfort.

Thank you for all the resource suggestions and personal stories. It's very difficult to talk to people in real life about this, because firstly ds is an adult and it's not appropriate to share his private struggles and secondly ocd (as with most mental health conditions) is just so misunderstood. He has told a couple of his closest friends. He has had a couple of physical health problems over the last few years so I think his friends just presume it's that when he doesn't come in. Physically he is very well now and whether that was the trigger to the ocd we will never know. It doesn't matter really, we are where we are. I'd love someone to just tell me what to do when he's stuck deep in his routine and can't move on even though he should have left the house 30 minutes ago. It really is so frustrating and exhausting. Thank you for listening

I don't think you can do much when he's partway through a compulsion unfortunately. I would expect that to result in an emotional breakdown and just restarting the compulsion. It's so horrible for the sufferer and their family.

I agree that it's also SO frustrating when someone says "I'm so OCD" just because they want things tidy etc. I'm sure I was probably guilty of it when younger too, but it's a lack of understanding about just how restrictive and difficult this condition really is