Way forward???

[swimming]

Hi, son is eating but still will not speak. CPN due for a home visit at end of the week. My son is spending all day in bed except when he showers(anything from 3 to 5 and half hours.) He will not turn a light on if its dark or switch it off in the morning. He will not make himself something to eat, in fact he has not been downstairs for months. He performs compulsions wiping his feet and stands like a statue in his room and bathroom.

He doesn't use cutlery, or a towel to dry himself. He never wears clothes. His room is a mess

The CPN has offered to try another member of his team (I explained this to my son today as there is no point in CPN coming out again and son refusing to speak.) I said he should think about medication because I don't think he is going to get out of this zombie state himself. I've also pointed out he could end up with carers looking after him. Also made it clear we will happily look after him if he wants to try and tackle OCD.

Any ideas please. I am actually wondering if my son is being deliberately cruel to me, my husband and his brother. He does not have empathy at all and does not really show any emotions at all now. Whereas a few months ago I could tell when he was angry. We have supported him as best we can for 11 years and he is unwilling to address OCD.

[Hal]

You deserve a medal, 11 years to be coping like this........I couldn't do it.

I can't help thinking your son's MHT are possibly taking advantage of how well you're looking after him though, they can sit back leaving you to cope, knowing he's safe and at least eating.

What would they do if you suddenly said you'd had enough and he had to move out, surely they'd have to take this much more seriously than they seem to be doing at the moment......your well-being doesn't seem to be coming into the equation at all.

I know just before Christmas you were able to change his bed sheets, with difficulty........I wonder if that's something you need to keep doing on a regular basis. I appreciate that's going to be difficult going by his reaction last time, but maybe you could ask the CPN to call and coincide with when you're sorting out the bedclothes?

Either your son will modify his behaviour in front of them or he'll show the nurse exactly what you're having to go through and just how seriously ill he is, without having to involve the police.

It's possible he's going out of his way to be cruel to you, obviously I don't know......it's also possible and likely, he's depressed. His life is so limited at the moment, anyone under those circumstances would be feeling quite low, maybe the nurse could also raise medication with him.

Something's got to shift for you all, would your son consider taking a look at the forum? Would he possibly be open to talking to someone from the charity in a couple of weeks?

[carolj]

Also just wondered if you are keeping a diary? When things are so difficult one day just seems to roll into another and its hard to recount exactly how awful things are. Never know it might help.

Really they ought to be sending someone senior to see your son as his life (and yours) is being so badly effected.

I hope the visit goes well.

[PolarBear]

This goes beyond extreme OCD. My heart goes out to you. I don't know what the solution is. Some how someone has to get through to him that he doesn't have to live like this, that there is hope and help out there.

[swimming]

Hi,

Thanks for your replies. Hal that is a good idea letting the CPN see just what he is like when we try to clean his room. The team always back off and will not invade his room. Maybe I should force the issue now as they don't seem to be able to establish a relationship with him anyway. I think we may need to relinquish caring for him for something to happen.

Carol I have kept a diary on and off but you are right that it is hard to keep track if you don't do this. Will start again

PolarBear your advice has been very helpful. I have also sent MIND an email a few days ago. Sally44 suggested this in an earlier post. I am also keeping in touch with the mental welfare commission and keeping them aware of the situation.

Three days left before the appointment to try and make a breakthrough. Thank you.

[Guest swinkertint]

Hi Swimming,

I don't think I have any advice for you beyond what has already been offered, I just wanted to say how lucky your son is to have you. How you have coped I don't know. My daughter suffers from OCD but her compulsions are trivial compared to your son's. One thing I've often wondered too, is whether there is an element of deliberate cruelty involved in my daughter's case, so it's interesting that this has crossed your mind too. I'm sure that my daughter's compulsions are very bound up somehow with her relationship with me (right down to monitoring how much I eat), and I am trying to break that without destroying our relationship. It's hard. Credit to you for all your efforts; I really hope the CPN comes through for you this time.

[Caramoole]

It's difficult to know what to suggest but things clearly can't continue this way, it's not helping anyone, particularly your Son.

I really feel for you

[Guest doris]

Hi Swimming,

Sorry to hear your son isn't making much progress but I am glad to hear he's eating at least!

Is he talking to anyone at all? I really feel for both you and your son--I too had very extreme ocd--it is a nightmare, I know!

I would be mostly focussed on getting him to try medication. Do you know why he doesn't want to try it? maybe some of his concerns could be addressed. I know I was terrified at the idea of taking meds even after I had previously been on Prozac for a year (i had come off partly due to side effects and partly because I had read some scary literature about ssri's and as we know ocd can exaggerate those concerns.) However, in the end I felt I had no choice but to go back on meds. Now I am so thankful for them and see how exaggerated my fears were about them.(i also switched to sertraline and have a better response to that.) I think I mentioned to you before how i partly addressed my fears was just to take a tiny bit of the meds to start and increased incredibly slowly. (it did frustrate my psychiatrist that i did it like this but it was the best approach for me.)

The other problem with some ocd sufferers is we can sometimes have trouble making decisions. So making a decision to take medication or do an exposure can be near impossible--it all feels so life and death. as i said i could only take the meds once i was truly convinced i really had no choice. Can you think of some way to convince him of the benefit of trying meds?

As far as the idea of your son possibly being deliberately cruel--I don't know your son but i can say i certainly put my family through hell with my ocd. i wasn't trying to be cruel--i was trapped by my obsessions and scared as hell. Your son is probably just trying to get by as best he can.

[Guest Bambi98]

Hello again swimming - how terrible sending my love to you and your son.

There is only so much you can do to help a person in this situation, the only advice I can think to offer is to offer support and encouragement and never break on engaging in compulsions.

I can assure you that he is not being intentionally cruel. OCD sufferers are the least likely of all people to do such a thing. The lack of emotion could be a result of burnout which is a state that many sufferers find themselves in - I think I elaborated on that in another one of your posts.

For the time being, he is getting by the only way he knows how. It may seem odd to somebody who hasn't experienced it first-hand but to him, these behaviours make sense. I truly hope that he is able to muddle his way through this rough patch and come out the other side.

If he ever feels like it, he should take a look at the forum. Even if he doesn't want to post he could browse the topics and perhaps he will take comfort in the fact that he's not alone in this battle.

[Guest Lilac12]

Hi, I'm new here, I"m from Israel and have been coping with my 10 year old son's outbreak of serious ocd for the past several months, and with its preliminary problems throughout last year. I'm a single mother working from home, and since he stopped going to school ca. 2.5 months ago, it's been really really tough on me and on my other son. We've finally found a psychologist specializing in anxiety disorders and started treatment since a month, it's mainly me going and "treating" my son so far, as he hasn't cooperated much yet.

But I just wanted to share that from an excellent book I read by an Israeli expert Haim Omer about the subject, I've gained a whole lot about how to handle these situation on the home front. I've just seen that the book is available in English too , I highly recommend it (and all his other books too) - it has a special chapter on violence/aggressiveness that appears as part of OCD especially toward family members and how to handle it.

This is now further strengthened by what I'm learning from our psychologist - that setting limits to aggressive controlling behaviour is really important, as one way to understand compulsions is the lack of boundaries, and so any setting of boundaries by the parents actually helps the patient calm down and reduces his/her compulsiveness.

In my opinion and from my recent experience in setting more limits to my son and cancelling privileges if he is at all aggressive toward adults or others around him, (like not watch a film on Friday, which he's always looking forward to as he's not allowed films during the week), has really been dramatically helping in calming him down and reducing aggressive or tyrannical communication with me and others to a minimum if at all.

So although I agree that "deliberately cruel" is perhaps more the way we carers may experience it, "tyrannical and abusive" is not far at all from the actual truth. In the above mentioned book, Mr. Omer states clearly that violence that is part of OCD is rarely mentioned in literature, largely because it's mostly directed at family members, who are too confused, overwhelmed and suffering from guilty feelings and shame, to admit it to others outside the home.

It is obvious to me from my own experience, that yes, a "symbiotic" relationship with my son, in which I allow him to tread all over me and cross any of my personal boundaries whilst making me feel guilty, is no help at all to his betterment.

Omer says in outside support should be gotten (other family etc) to clearly let the OCD sufferer know that his aggressive violent behaviour in the house will not be tolerated and says although a reaction may be expected, the final result in all the many cases he'd been involved with was never suicide or outbreak of psychosis, which is what many parents (including me...) fear when even thinking of setting limits to aggressive tyrannical behaviour.

As for me, I've decided I'll do anything I can to protect my eldest son (12) from having a troubled home tyrranized by his brother, and that I won't let myself be abused by my ocd son as I have by his father. (yes, things do have their history...) so the situation requires of me to learn a huge deal about setting boundaries whilst still showing I care, and so far it's been very helpful and small but significant signs of betterment are showing through thank goodness.

It's still the not-going-to-school with me working from home as single breadwinner, and having to deal with him at home, set boundaries etc, plus the lack of personal space through the week (as he avoids friends and often comes to my bed at night, saying he has nightmares, something I'm trying to stop without making him feel unwanted...), that is the hardest part for me.

But some progress is made, this week he had two private lessons by a teacher from school and since I told him clearly there'll be no film Friday if he raises the roof in any way over this, he accepted the lessons and even did homework she gave him rather willingly.

So bottom line, I want to say with the greatest empathy to the mother who started this thread, please, for your own sake, I agree with you, I think you need to set limits if you feel your son is "cruel" to you, and perhaps seemingly "caring" less (i.e. performing fewer services for him) may help. Of course, you need professional help. I'm just putting in my "yes" to any of your efforts to create some free space for yourself and setting him limits. From my own experience, it does way more good than harm.

[Guest Lilac12]

P.S. I'm not really only a carer for a child suffering from ocd but also an ex sufferer from ocd and still suffering from bdd since many years. So dealing with my son is a huge challenge, as it's a real effort for me not to overprotect him and to learn what really helps him without getting drawn in till both our anxieties are sky high and we're both on some nightmarish "island" all on our own...