Getting Support for Parents of Grown Up Children

[Guest Lesley P]

I have a 20 year old daughter whose OCD has become increasingly worse, so much so, that she now can't function. She had to suspend her studies at University as she just couldn't cope. I hear and read about people who manage to function with OCD but my daughter is the opposite - she can't seem to do anything from writing a simple card to getting herself some breakfast. She can take up to three hours to go to the toilet and now avoids changing, showering etc as it takes too long. Her answer - to sleep and watch TV!

Her psychiatrist has said that we should not help her with any of her compulsions, which we've decided not to do. He has also suggested that we find another therapist as she just hasn't clicked with him.

Two things - has any parent out there got experience of getting a young adult through OCD? Is there hope for someone crippled by OCD? Secondly, where, as a parent, can we get support? We don't know a lot of the time how to deal with the OCD, which results in stress, tension and arguments. What support systems are there for parents?

Would love to hear from fellow parents in the same situation or who have seen their child overcome OCD and flourish.

[Guest Sally44]

I have a 14 year old son with OCD.

It takes a long time to get any kind of support because it is thin on the ground, and only seems to become available to parents or adults that really push for it.

The NHS NICE Guidance on OCD states that CBT should be offered as it is the most effective treatment for OCD. Just knowing that and quoting that at CAMHS helped.

There is hope for those with OCD. There was a time when they did not have, so it is possible for them to get back to that place. The main thing is that the person needs to want to get better, and they need the right professional therapy and support.

So please encourage your daughter to find another therapist.

You could ask that therapist if you could meet with them for them to give you advice as parents.

There are also some good books out there. Maybe others will recommend some.

The main thing to understand is that OCD is not logical, so no amount of compulsions is going to stop the anxiety or obsessing. You must not get involved as your involvement validates the behaviour.

As your daughter was in education it might be worth you looking at getting an education and health care plan for your daughter. If she is 20 I don't know if she needs to request it herself. Basically it is a legally binding document that should detail what support and therapy your daughter needs to access education, work, daily living activities, be independent, socialise etc. And it goes up to age 25. The assessment process takes months, so I suggest you get the ball rolling asap, as it will help your daughter get access to the help she needs. For example if the EHCP states she needs CBT, then it has to be provided regardless of what facilities are available in your area. This can be really important in getting consistent access to services.

You could ask CAMHS if there are any family support groups for family members with OCD.

Is your daughter on any medication at the moment?

[Guest Lesley P]

Thank you for your reply.

My daughter has had a lot of CBT but it doesn't seem to help. I'm not sure she wants it to help and that's part of the problem.

We've read books, seen hypnotists, you name it, we've tried it.

Thank you for the info re EHCP, which I'll look into. She has been assessed at the University and given mentoring sessions, special equipment, help towards living costs etc. They have been great but unfortunately she just can't cope with having to look after herself and keep on top of the work.

She is on Citalopram at the moment - 40mg a day.

[Guest Mumtothree]

Hi Lesley.

I started using this board about three years ago when my fifteen year old daughter was suffering and diagnosed with severe ocd. I haven't posted very much, but felt i wanted to try and reply to you, to try and give you some hope. My daughter is now 18 and she is virtually ocd free. She is still on medications, but she has worked really hard to get better and I am so proud of her. Three years ago she couldnt go to school, had problems breathing, eating, sleeping, wearing clothes, she would basically just sit in a chair unable to move due to the intrusive thoughts and compulsions being almost constant. i believe that you can recover from ocd, i think you have to be vigilant and use the tools you learn to keep yourself well, but it is achievable. my daughter has just taken her a levels, plans to start uni in sept, is learning to drive and works part time. Speaking as a mother, seeing my daughter suffer with ocd has been one of the hardest things to cope with, it is so upsetting in many ways, but there is hope, you just have to hang in there for your daughter. I dont have much time now but if you would like to talk more just let me know.

[Guest Lesley P]

That is great to hear. Thank you. And congratulations to your daughter for working so hard.

Part of our problem is that I don't think my daughter is ready yet to sort her OCD. She is living in a bubble and it's easy for her. We feed her, clothe her and comfort her. How do we create an environment that makes her want to get better?

Did you get frustrated with your daughter? How did you deal with her? We don't know whether to leave our daughter to her own devices or whether to keep coaxing her to do things.

Would love to talk more and to hear about how you dealt with your daughter and what your emotions were. I keep getting angry about the OCD, which I know won't help but feel increasingly frustrated that she won't try to dealw ith the issues.

[Guest Mumtothree]

Hi Lesley,

I'm not sure of the best way forward for you as you say your daughter isn't ready to sort her OCD. My situation was different in the respect that my daughter desperately wanted to get better as the OCD had completely taken over her life. She willingly took medication and cooperated and interacted in her cbt sessions, she was basically willing to do anything she could to get well again. I know that this doesn't help you very much in your situation, perhaps there is another parent that can advise you on creating an environment that makes her want to get better.

Yes I did get frustrated with her, a lot of the time, I know you are supposed to have an endless supply of patience and understanding, but I found this incredibly hard as I was the main target of my daughters reassurance seeking etc. I used to dread my daughter getting up in the morning as I knew it would all start again, the only time I could relax was when my daughter slept. I was advised to sleep in her room by CAMHs as she had suicidal intrusive thoughts and her consultant wanted to make sure there was no psychosis going on as well as OCD luckily there wasn't.

I tried to see the OCD seperatly from my daughter, when I used to get angry, I got angry with the OCD not my daughter. I encouraged my daughter to get angry with the OCD, that would encourage her to fight it. When my daughter was at her worst .....she didn't feel like my daughter anymore, she was like a stranger, I new that she was still there but the OCD had turned her into a person that I didn't recognize. I now have my incredibly caring, sensitive, loving daughter back, but there were times when I didn't think she would be the same again. I went through a lot of emotions when my daughter was struggling with her OCD frustration, anger, fear, confusion, blaming myself, anxiety, feeling helpless and overwhelmed.

My daughter had an emergency appointment to camhs, she was diagnosed with severe ocd and put straight onto anti-depressants and anti-psychotics, and was fast tracked for cbt, and while we waited for cbt we had i2i nurses come to our house to try and help us keep my daughter out of hospital, and to help us treat her in our home, at this time my daughters OCD was ruling our house, we thought we were doing the right thing by changing things to suit my daughter and try to make her life easier, as she was dealing with so much, but the nurse that visited us encouraged us to bring back a normal routine, not just for us, but for my daughter as well. By changing the routine to accomodate my daughter We were unwittingly accommodating her OCD and giving it power. I forgot to say that at the start we explained to my daughter that although she wouldn't like the actions we were taking, that we loved her and were taking them to help her get better. We went back to our normal routine, it made it easier on us as a family, as my daughter has a brother and sister, but also didn't allow the ocd room to grow. Some of my daughters compulsions involved saying unacceptable things, we had been tolerating them but they were upsetting her brother at meal times so we were encouraged by the nurse to set limits on my daughters OCD so between 4.30 and 5pm whilst we ate tea she couldn't say these things, she could say them as soon as it got to 5 but not before. This took some power away from the OCD too, eventually it was a relief for my daughter as she felt that this was a period of time that it was ok not to do compulsions. So we were encouraged to set boundaries not just for my daughter but for her OCD compulsions. Delaying a compulsion worked well for us, aswell as distraction, basically anything that takes some of the power away from the OCD.

Sorry I think I'm going on a bit this seems to be a very long post, I will stop tying now or I will go on all night lol, hope things are bearable for you

[Guest Lesley P]

So many of the emotions that you mentioned we've been/are going through. We do try and see OCD as separate from our daughter but at times I feel we've lost her to OCD. I feel that I'm partly grieving for a lost daughter as the one we have has none of her fight and independence.

Like you, she seeks the most reassurance from me. It's stressful to live with. In addition she hates me driving as she's convinced something bad is going to happen. She quizzes me constantly. It's like having a young, needy child again!

Does your daughter ever go on this forum? I wondered if getting my daughter to talk to her via this forum might help my daughter to realise that life can go back to some normality.

Thank you for posting as it's really supportive to find out that other people have come out the other side!

[Guest lesley]

Hi Lesley,

Just wanted to say I know what you are going through, my son is 22 and has contamination OCD, he has refused to see anyone, so my main goal at the moment is to get him to accept help, but most importantly to want to try to beat his OCD, it is tearing the family apart and puts so much stress on all the family, my friends and family are very supportive, but they still think he should be able to just stop what he is doing, I just wish it was that simple, I hold onto the hope that one day, he will want and accept help, I hate seeing his young life being engulfed with OCD resulting in him being housebound unless I take him to his Nans for a few hours a week.

Take care

[Guest Lesley P]

Hi Lesley - I know exactly what you mean, my daughter has gone from someone who got 14 A and A* GCSEs and wanted a career in medicine to someone who now sits in front of the TV or sleeps. She has the opposite of contamination issues and won't shower or clean her teeth (because it takes so long she avoids it). Her tapping and counting has got worse and it makes home incredibly stressful (it can take her 2 hours to go to the toilet because of her rituals and compulsions!).

I feel an overwhelming sadness that when she should be having the time of her life, she's not, she's trapped by OCD.

How do you deal with your son? Are you always there and encouraging or do you take a firm approach? I am now taking the approach that if she doesn't want to help herself then I have very little sympathy. But, it's hard.

It's good to hear from someone going through the same thing. Thank you for posting.

[Guest lesley]

Hi Lesley

yes my son also was a grade A student, with not many but a few close friends, which are all now getting on with lives and yes it is so sad that they are not able to do the things they should be doing.

With the contamination, it is only his hands that have to be clean, so like yourself it is a daily struggle with everything else.

I work full time, so I am not always there, which is probably a good thing, I do try to take a firm approach but it is hard and I know that i do make things worse by continuing to buy hand wash etc

My son has always been an anxious child and from a very early age, I used to say he was quirky and he would grow out of the little rituals he had, how wrong was I.

Like you said, it is good to hear from someone, who can understand what life can be like, I have looked for local groups, but the nearest one to me is about fifty miles away and they meet at a time that I cannot make.

Hope things get a bit easier for you, we defiantly have good and bad days.

[Guest Lesley P]

If you want to talk more, just let me know. I'm happy to pass on my mobile number if we're allowed to.

[Guest Mumtothree]

Hi Lesley, sorry for the delayed reply i have been dealing with some non ocd related problems and havent had the time to log in. Since my daughter has been better. she is reluctant to talk about the ocd, she wants to leave it behind her and feels that talking about it now is just going to give it power, and this is the last thing she wants to do. I'm so sorry that as she feels this way she wouldnt be able to talk or come on the forum. i go to an ocd support group and apparently it is common for people to want nothing to do with ocd once they are recovering, or recovered, (my daughter), whereas other people want to understand and learn more to stay on top of ocd and try and help others(myself). I really believe that there should be alot more support available for parents, as I was completely lost at the start, overwhelmed and confused as to how to help my daughter beat this. children are looking at us as parents to guide them and as there is very little support for us, i would love there to be supports groups for parents of children with ocd, as it would have been a huge help and inspiration for me. the support group i go to does have parents occasionaly but the main focus is on the individual suffering with ocd.

[Guest Lesley P]

I understand that completely. Who could blame her for wanting to leave a sad time behind her. :original:

[1Littlefoot]

Sorry only just see this post - Look at OCD Action - there are online parent support groups - we meet monthly and get loads of tips from other parents. Tips that are not in the books and no one tells you. If nothing lese it makes us feel not so alone and better able to cope.