Friends, Family & Carers Forum

[Brena74]

Hello @Dahlia100 and thanks for your reply. Our youngest is the same, only 9yo and missing big sister. Congrats to your daughter, what an achievement under the circumstances!  It sounds like she is motivated enough to set her self goals, which is good. I wish I could say the same, our daughter is not very motivated atm. When she was “functioning” with OCD, it was mainly about contamination and washing but manageable. During COVID it got worse and she began to worry and seek reassurance a lot. Then last year when our family was going through a stressful time, she experienced a trigger event which sent her spiralling. Her OCD became severe very rapidly and that’s when the associations and rituals kicked into full gear. She got caught up in an OCD loop so bad she was barely sleeping and as a result stopped going to school and missed 2 terms, though some was done remotely. We agreed to start her on medication to help settle her, which it has but not so much the OCD. These days, she mostly stays in her room and only comes out for food or toilet, and even that is controlled by OCD. What she eats, how many times she eats, etc. We also feel caught up in her compulsions but trying to break the cycle upsets her and makes her start whatever she is doing again. As you said, something always interferes. I’m not even sure what her OCD thoughts are these days as she does not like to talk about it. I know it started with contamination fears but not sure anymore. Does your daughter involve you in her compulsions/rituals, seek reassurance and expect accomodations, or does she mostly go it alone?

[Dahlia100]

Hi @Brenda74,

Unfortunately I always give in and accomodate - last night she was carrying out compulsions from 11:30 until 1:30 am in the morning. It involved opening and closing doors and woke her little sister who’s room is next door. I ended up accommodating just to keep the peace and get everyone to bed earlier. It’s so hard I know they say don’t accomodate but when she gets so worked up it’s so difficult . I’m going to try from tomorrow to cut accommodation slowly though as this can’t go on as it’s affecting everyone in the family so much.

I’m reading a book called “ pure o ocd by Chad Lejeune and it says the first step to manage ocd is for them to ‘label’. For example get them to distinguish an ocd thought from a normal thought and get them to label when they are ruminating. I’m trying this I was able to talk to her a bit when she was having a better day but yesterday was very bad. 

I feel so helpless because this is an Illness that can be managed but I can’t even help my own child. 
I’m so sorry that your child is going through this at such a young age. 
is there anything that has been suggested to you that’s worked a little? 

[Brena74]

Hello @Dahlia100 

It helps talking to someone who understands so thank you. Not much of the traditional text book advice has worked for us so far because as you know, ERP is gold standard and our daughter refuses. Even if incidental “exposure” occurs, she proceeds with her compulsions (sometimes worse), rather than trying “response prevention”. I agree that not accomodating or reassuring is easier said than done. Labelling has not worked for her so far but letting her feel like she is in charge, sometimes helps, though more often, OCD is in charge of her, and if she cuts out one compulsion, something new pops up which is another issue, do you find that? Our lives have changed so much and it’s really tough on all of us, including her. Like most children, she wants to feel safe, not scared and going against OCD scares her. That’s why she picks avoidance. I don’t know if the medication is affecting her motivation, what have you found with your daughter? 

[Dahlia100]

Hi @Brena74 

Yes it is so helpful talking to someone who understands. I don’t know anyone else in this situation so it really helps.

We haven’t even tried erp as we can’t even get her to see someone. I ended up going to some appointments to try and help her but you really need a psychologist’s input to work through strategies.

The psychologist I saw last suggested as a last resort if there is erp resistance they can use strategic pressure but we still can’t get her to see anyone - even online.

My daughter hasn’t been out in public now for over a month - except for in the car. Most is her ocd and as she is a teenager she likes being in her room too. Blinds are always down though so it’s dark.

How old is your daughter? Is she a teenager. If she is this is a difficult period as emotions are very up and down. 

Last night and this morning my daughter”s compulsions were getting continual and out of control.

I am going to try to stop accomodating. 

Today was day one of trialling not accomodating for us. Things escalated to the point of crying and constant yelling trying to get me to accomodate. It was really hard but I didn’t. Settled a bit tonight and hasn”t done any compulsions that I’m aware of at least. I’ll let you know how it goes.

They say when you stop accomodating it’s best to tell your child what you will be doing and cut it slowly. 

In terms of medication I didn’t really want her on any however she wasn’t very well so  didn’t really have a choice. It did take away some of the small ocd rituals Eg opening closing doors etc She went up to about 175mg of the medication they use as first line for ocd. She did get very sleepy, some irritable leg and lack of motivation-  just didn’t care about anything.

It numbs down emotions a bit.
My daughter cut the medication down on her own as she thought it wasn’t working, which I wouldn’t recommend without expert input as now things are so much worse. 

 With our daughter though ocd has made her very depressed too so not sure if symptoms are from that. Her iron was also low. Not sure what it is now as I can’t even get her to have a blood test.! Low iron and low vit b12 I think can mess with your emotional state as well so good to check those out if you can. 

The other point that was made to us is that she may have autism as with kids resistant and rigid thinking may be on the spectrum. The test costs about $1000 though!! 

im trying to read up on ACT as much as I can to help her. 

And yes I find if she cuts one compulsion another one pops up . It’s always “ I stopped this compulsion but I just have to do this other one thing”. Then the loop continues but she can’t see it. 

She always says  she needs to do compulsions in order to have a good future and be happy.

she says “ I’m running out of time” -  to do the compulsions. “I’m scared”

”I just want to happy’ 

it just never ends. 

She wants to be in control. Sometimes to try to get her out of bed I’ll try compromise and give her a couple of times to choose from to get out of bed. This sometimes works as she feels in control. 

Has your daughter been able to go back to school? Do you have family support? 
we got to the point where we asked family not to come over as it would agitate her. We’ve stopped that now as it was a big mistake. 

it’s important for you also to have some time to yourself to do something you enjoy as you need to be strong for your family. For me it’s gardening it gives me a break from it all…

it’s hard to juggle everything- I’m up middle of the night right now  as my youngest has a sore throat and blocked nose. She’s just fallen asleep again - I’m so tired but I have to put my tiredness aside and be up early and start the day! 
I hope you have had a better day! 

[Brena74]

Hi @Dahlia100 

Unfortunately we have not had the best week with our daughter, what about you?

My "holidays" finished and I am back at work, and although I work from home (and hubby is home too); I am already flat out exhausted due to late nights with her because it is me she wants for everything. 

She is almost 13, so just starting her teenage years, which is terrible timing for severe OCD.

She has always had low iron too but won’t go for a blood test either, or anywhere for that fact, not even the car!

She has not returned to school yet this year but tells me she will after "xyz" so I am hoping for the best but planning for the worst iykwim, otherwise maybe remote learning is possible.

We do have family support but they can only do so much, and she is not willing to see or speak to anybody, only us (mum/dad/sibling). We have not asked anybody to stop coming but at the same time, do not go out of our way to have people over, only because I am usually too tired these days.

Fact is, our daughter needs professional help but wont accept it - says she can (and will) get better with my help - but the "help" she seeks from me is constant reassurance and accommodation. I have tried to educate her about OCD but to no avail.

Although the medication is probably affecting her motivation, it also helped to calm the anxiety and panic she was feeling - I just wish it did more for the OCD!

Like you, I try and educate myself as much as I can and pass on what I can to her but most of the time I feel like she just wants me to leave her alone.

Some days are better than others - this week has not been great but this too shall pass.

You said your daughter hasn't accepted professional help like ours, do you think her OCD has improved or got worse with time/as she matured?

Let me know how you are going..

[Dahlia100]

Hi @Brena74 

likewise we have had an all time low. My daughters ocd became so bad that she stopped eating certain foods having shower etc all self care as she had to do compulsions first before she could do any of those things.

I had taken her for a drive and I was trying to make her see clearly to get help. Ended up with me getting very distressed (I’ve been bottling so much inside) . I ended up having a panic attack in the middle of a busy road. Someone called the ambulance- once I was ok they questioned myself  as her and realised she was unwell so they took her in to hospital.

I went with her - they have admitted her she is in the mental health ward. It’s been three days now. She just wants to come home and says nothing will help. They’ve started a new antidepressant for her and added on a low dose antipsychotic which helps the antidepressant work better. 
They told me to only visit for a bit every day as it’s worse when I’m there as she wants to come home. 
I feel so torn it’s so hard not being with her - I just hope they can help her.

It’s been getting progressively worse as she’s gotten older so I guess the way it played out was probably needed as she wasn’t living a functional life. I just feel numb all over - I just don’t have the energy to be there for my other kids right now either…

im sorry you’ve had a bad week too. I’ll keep you posted and let you know how this all pans out.

I hope you are all ok 

[FloatingFeather]

Hi @Dahlia100,

It sounds like you have a lot of your plate. OCD can be such a crippling thing in my experience - my dad had it many years ago (before people really realised it was a thing). He was diagnosed later in life so unfortunately he spent many years without being understood or getting the support he needed. In my dad's case it was more around checking things - checking windows were locked, doors were locked, gas was off etc. I really hope that your daughter gets the help she needs. From what I have read with the right treatment and therapy OCD is very treatable today.

It does sounds like you having a panic attack reflected how much of a toll your daughter's situation was having on you. I agree with what you have said, sometimes things coming to a head can be a good thing in the sense that your daughter is now getting the professional help she needs. I also think you need a break from things - as an emotional carer for a close family member I know how draining it can be to support someone, attempt to help them see things differently, support them even when we have run out of strength etc. 

I would really encourage you to seek some support for yourself too if you have already. Here are two links to organisations that help support carers:

- Carer Gateway 

- Carer Gateway 

My family member was also admitted to a mental health unit many years ago and I was also told to keep the visits to a minimum. Maybe the staff find visits from loved one's can be distracting to the clients? Maybe also they realise that as carers we need to take time away and regroup and take care of ourselves too.

I wish you and your daughter all the best.

Warm wishes,

FloatingFeather 

[Dahlia100]

Thank you so much @FloatingFeather for your supportive words. 
It’s going to be a long road but if she gets better by the end of it it will all be worth it. I hope your dad is doing ok now and thank you for reaching out. 
Take care

@Dahlia100 

[FloatingFeather]

Thank you too @Dahlia100.

I really hope your daughter is going okay and that she is on the fast track to a strong recovery. It may be a long road as you said but the goal is getting better and I wish her every success in doing so. I also hope you are doing a better too and keep taking care of yourself in the all this.

Keep reaching out if you need to - that's what the Forums are here for.

Warm wishes,

FloatingFeather 

[Brena74]

Hi @Dahlia100 

Thanks for reaching out during such a difficult time for you all.

It’s understandable to have mixed emotions, it’s a lot to take in but as mums, we only want the best for our kids so it’s good that your daughter is getting professional help. I hope you can use the time for yourself however you need to, because I understand how challenging it is to care for a child with OCD.

Thinking of you, please keep me posted.