Friends, Family & Carers Forum

[Dahlia100]

Hi @Brena74 

I hope you are ok. How are things with your daughter this week?

This is week 2 for my daughter in hospital. They are trying new medications and a psychologist sees her twice a week. They said it will take a while before things change as her ocd is so severe. They also said when she leaves she has to be willing to continue the therapy.  I really hope she does.
I know it’s a long road but I keep waiting for some positive sign.  I just hope this medicine works.
I’m  able to take her out for a few hours  a day which is nice but I can’t accommodate. Although calmer it has been upsetting for her when I don’t accomodate. it is so nice seeing her though…

I hope you have a good week. 

[Brena74]

Hi @Dahlia100 

Thank you for asking. Unfortunately no change, she has dug her heals in and the OCD is controlling all aspects of her life (and ours). The repetition is mind boggling and frustrating and there seems no way out without chaos. Knowing OCD is treatable but she wont get help, is the hardest part because even though it is a long road, the first step is getting the help…at least your daughter is one step closer now. Im holding on to see a change with your daughter because that will give me hope. I won’t give up but boy do I feel defeated some days. Hope you are taking care of you and let me know how it’s all going. Take care, talk soon.

[Brena74]

Hi @Dahlia100,

How are you and your daughter going? I’m still here and looking for hope. Hospital has been suggested for our daughter too. I’m exhausted and torn. Any thoughts? Kudos to you for coping so long without professional help. Hope you are both ok, please reach out anytime.

[Shaz51]

hello @Brena74 , @Dahlia100 , @FloatingFeather , how are you today xx

@NatureLover 

[Dahlia100]

Hi @Brena74 

apologies for not posting sooner. It’s been such a difficult time. I wish I could give you a totally positive answer and say all is better now but things have improved.

The one thing it really did, was break the ocd cycle. She was really not functioning before. 

The first few days of her stay in hospital was the hardest part. My daughter was very upset and angry and didn’t want to be there.  After a few days she settled and accepted that she had no choice in the matter. They started medication and for the next week and a half or so things were amazing. She was settled, logical etc  Said she would try the medication for a couple of years and was open to therapy.
The psychologist saw her twice a week and although she didn’t totally open up she engaged a bit. We could take her out for a few hours. We went out to lunch or for walks, did craft etc and again it was so good.

For the first time in a long time she could order her favourite drink and actually eat out, do colouring in, craft etc all the things she couldn’t do before.  

Then the last week and a half we had 6 hrs together we started coming home a bit. Things were ok but she said herself that hospital was a bit of a break from all the compulsions she had to do but being home reminded her of the things she needs to do again.

That last week she started to think about all the compulsions she had to do to get her life back on track and that being in hospital did nothing for her.

The last week when she started thinking about coming home things got worse and she started getting upset and said she would still do compulsions and wanted to stop the medication and wasn’t going to do therapy. 
The doctor said to her that she’ll be back if she doesn’t take the medication and this really upset her.
He said to us that there were three things causing her angry behaviour in the last week.  One was ocd, the other was a bit of autism which they suggested we look into (finding change difficult, rigid thinking,  and the third her personality which makes her want control over her life etc and didn’t want to be told what to do.

The doctor did give us hope though as he said he saw  severe ocd cases like hers and they were able to be managed with medication and therapy. He said it would take a couple of months for the medication to take full effect. 

It’s been nearly been about 6 weeks now. She has associations still and isn’t able to do a lot of things she wants to still like buy things etc but it’s given her motivation to get out and do things Eg lunch, walks etc. She’s getting up at a reasonable time and is getting along and interacting with siblings better.

She seems to think it’s just that she hasn’t done compulsions yet that she is able to go out and function and that the medication is having no effect.

She is planning to stop it soon and is still against therapy. I’m hoping she stays on it and goes through with the therapy because we are so close to having normal family life, but as parents we have done everything we possibly can and now it’s up to her to want to help herself. I can’t do much more….

I wish the hospital stay included a daily intense erp therapy. I think this would have made a bigger difference but we’ll just take one day at a time.

As difficult as it is though I would really recommend to take your daughter into hospital or an ocd inpatient clinic if they have one there ( they don’t here).

If she’s closed in her room and not functioning that is not a good life for her or you all. It will at least break the cycle and she’s young enough that she may be more receptive to the doctors. The longer you leave it the worse it will get especially through the teenage years. 

Also in hospital they can do blood tests and psychologist can evaluate if there is anything else going on. You can organise a planned admission.  Of course you need to do what is best for you and your family but the cycle needs to be broken because she is suffering as are you all. 

I will keep you posted on how things go but for now things are so much better than before even though she’s saying she needs to stop the medicine etc 

Please let me know how you are doing. I’m sorry it’s been difficult for you. I totally understand how you feel as I’ve felt like that so often. 
Your daughter will get better but the cycle needs to be broken for any change to occur. If you feel she’s not functioning and not happy, I would really recommend hospital as difficult as it is. 

Is your daughter getting help from the psychologist still? Is she going out at all, functioning etc or is she closed in her room unable to enjoy things? 

Take care and keep positive 

@Dahlia100 

[Brena74]

Hi @Dahlia100 

I am so glad to hear there is some improvement with your daughter, I hope she keeps going.

Our daughter sees a remote psychologist monthly but not an OCD specialist. Her doctor wants to change her meds from first line SSRI to last resort tricyclic but I am not convinced because she is not getting treatment for OCD.

I completely agree the cycle needs to be broken and am starting to see that is almost impossible to do at home.

unfortunately, I am not aware of an inpatient ocd clinic for children either so it would have to be hospital kicking and screaming as she would never go willingly

It’s good to hear too from a doctor that severe ocd can be managed.

it’s uncanny how similar our daughters are so I can relate a lot and learn from you.

im so grateful we met here and to hear of better days with your daughter, it truly gives me hope on days like today,

Our daughter is not really functioning or going out and given her age, her education is another worry.

If I let myself think too much, I get  overwhelmed so one day at a time, like you said.

Exhausted now. take care and keep up the good work, talk soon! 

[NatureLover]

Hello @Dahlia100  and @Brena74 , I've popped over from the Lived Experience Forum in response to @Shaz51 's tag - thanks @Shaz 🙂

I have OCD (germophobia). I always had a little bit as a child, but it developed more as an adult (I'm 51 now). I can manage to live with it as I'm incredibly fortunate to be able to live alone. I take meds and see a psychologist and psychiatrist, but I have 5 other MIs (mental illnesses) too, plus childhood trauma, so those tend to take precedence in therapy.

I agree that OCD is about control - control and terrible fear. The compulsions are to avoid something bad - something worse than the compulsions. For instance, if you could find out what those underlying fears are, it might help. E.g. "If I don't do X, mum might be in a car accident." Then you can work on reassuring that underlying fear. 

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@Dahlia100 wrote:

I wish the hospital stay included a daily intense erp therapy.

Another thing I want to point out is that ERP is terrifying - absolutely horrifically terrifying. You can't just launch into it. You have to work up to it gently for months and months, that's even after getting you to accept you can even attempt it, which could take months or years in itself. Then you have to start it with tiny, tiny, tiny steps, very slowly, with the support of a therapist.

I can't face ERP. For instance, I've done a little bit with my therapist. When I make breakfast, I wash my hands after touching things. So I put the kettle on (the kettle is "clean" in my head because I've disinfected it) and then touch the sugar and coffee - then because the sugar and coffee were bought at a shop where sick people might have touched them, I wash my hands. Then I pour the boiling water (clean kettle) and touch the (semi-clean) spoon, then wash my hands, then touch the milk ("dirty" meaning "germy" carton), then wash my hands. Same goes for making toast. I end up washing my hands a hundred times a day, and my OCD is not severe...well, I would say it's moderate with some severe spikes sometimes when I get exposed to a sick person and start shaking and panicking and not coping or functioning. 

So my psychologist wanted me to stop washing my hands after touching shop items at breakfast - just at breakfast. I did it, but it was terrifying. Each item would contaminate the kettle, the spoon, etc. till I could see it contaminating the whole house which would then become "unsafe" to live in. I had to stop the ERP as it was too distressing. I can only live with the OCD because I live alone and can carefully control what I touch and washing my hands, washing myself and my clothes after I've been out, etc. 

Also, OCD is utterly exhausting. All the thoughts in your head, needing to know (or assume) the entire history of what every single item you touch has touched in its lifetime...Plus allocating every single item you touch into 4 levels of cleanliness...plus sorting every single thing into 3 sections of cleanliness in the house. I know OCD takes different forms but I assume the thought processes and overload are the same - utterly exhausting. There's not much room for rational thoughts in there. 

So my compulsions are all about keeping me safe. 

Also, I want to point out something very upsetting - I'm so sorry 😞 There is a heightened risk of suicide with bad OCD. It's because ERP seems utterly impossible, but being trapped in the fearful thoughts and compulsions is so incredibly draining and exhausting and loathesome and depressing - you think you'll never get out. For instance, I hate disinfecting things...but I need to do it, to keep me safe. Your daughters might actually hate doing some of their compulsions, but the fear of not doing them is so awful, they need to, to keep themselves or others safe in their mind.

Also, the more we do these compulsions, the more entrenched they get, sorry to say 😞

I think someone would have to reach rock bottom (maybe a suicide attempt?) to want to change, to want to tackle and face the dreaded ERP. 

Sorry this post is not more hopeful. I actually manage well, going out to my volunteer job twice a week (using spray disinfectant a lot while there), going out socialising regularly, keeping about 120 washcloths neatly stacked on a shelf ready to ritually wipe library books and other things in the house, and doing a laundry wash most days. I like my life at the moment and I have accepted my OCD and can manage it as I can thankfully live alone. I couldn't live with other people though, so I feel for you both. 

[NatureLover]

P.S. I  want to add - I have made some progress in my OCD...I used to wash my hands in pure disinfectant, and also put about 2L of pure disinfectant into each laundry wash. With the help of my psychologist I no longer do those things.

@Brena74  @Dahlia100  @Shaz51 

[Dahlia100]

Hi @NatureLover,

thank you so much for giving @Brena74 and myself an insight into what it is like living with ocd. 

I think when you can manage ocd you can at least function. In the case of our daughters’ ocd l, it gets so severe that it interferes with daily functioning and everything and causes them to block out life totally and that’s the hardest to see as a parent. 

I can totally understand that erp would be so scary - can I ask if you find erp difficult what has worked for you that the psychologist has suggested to manage the ocd?

[Dahlia100]

Hi @Brena74 

Im really sorry it’s so difficult to live with isn’t it. You love your kids so much and don’t want them to ever suffer but it’s the feeling of helplessness which is the worst when you fight so hard to help them and they refuse.

There is always hope though and that is what we both need to hang in to.  Tricyclics were also suggested for our daughter if the SsRI’s don’t work. So far on and off this is her third SSRI she has tried. There is one more they suggest to try if this doesn’t help. 
So far I find all the SSRI’s help with slight motivation and take the edge of the anxiety but don’t touch the big compulsions and associations. 
The problem is she keeps saying she doesn’t want to take the medication but we’ll see what happens.

The next step they normally take us to augment the SSRI’s with a low dose 0.5 to 1mg of an antipsychotic which helps it work better.  So make sure that has been explored. I’m sure your doctor has probably explained all that.

If all those options are exhausted then they go to tricyclics but I’m a bit concerned as they have more side effects too. It’s a difficult decision and I guess you have to weigh up her quality of life with and without the medication. 

it’s good though that your daughter is willing to take the medicine. 
It has been so helpful to be able to chat to you as you are the only person I know in the same boat as me. 

Stay strong, you are doing an amazing job and one day hopefully we both will see our daughters living a wonderful carefree happy  life 😘