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Original poster

Ongoing support thread?

276 replies

SouthWestmom · 04/11/2018 11:59

Shall we have one?

It's so difficult to deal with.

Anyone raising a child or young person with mental health issues who wants to just check in?

OP posts:
fatpord · 22/12/2018 18:38

I've had the same problem with ds missing classes. He hasn't gone to a morning session at college for the past couple of months and tbh I don't think he'll go back after Christmas at all. He also wants to work in mh but there are other options out there - she could always do an access to HE course if it becomes unmanageable at the moment. But it's exhausting isn't it?
I'm so sick of walking on egg shells and waiting for the next incident. I feel resentful today and want to say oh fuck it then don't bother - don't bother with college - don't bother trying to help yourself - I'm sick of having to give him all my attention and energy. I know it sounds awful but that's how I feel today. Another joyous bloody weekend.

Original poster
SouthWestmom · 22/12/2018 20:50

Hi Parsley sorry to hear of your troubles. It's a unique thing, with no certainty or end point and lots of emotion and stress.

I am so scared my ds will not recover and this is his life now.

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Original poster
SouthWestmom · 22/12/2018 20:51

Fatpord you are not alone in your sentiments. They pass, and return, but you will get up tomorrow and try again to help him, and you will be there, and you will love him. Because that's what we do.

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Parsley65 · 23/12/2018 09:48

Thanks both - I think it's entirely normal to go through a whole range of emotions when in this situation. I too feel resentful at times and ask what I did to deserve all this. Then of course I feel so guilty for feeling like this. I am also dreading the holidays. At least when she is at school I have a break from it all. We should pace ourselves. This isn't going to go away in a hurry and there is no easy solution. Do small things for yourself (long bath, walk, see friends) and let's get through the 'festive' season...

Original poster
SouthWestmom · 28/12/2018 21:13

How are we all doing? Survived Christmas?

I'm lost - keep thinking how to tackle it, plan to be nice and chilled and then crumble and start demanding he does things to improve (just clean your teeth) and end up nagging. But if I do nothing he does nothing.

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Parsley65 · 30/12/2018 08:38

Our holiday has been dominated by GCSE revision - or lack of it! Things came to a head yesterday when told she needed to do more work if she wanted good results; and she responded by slashing her arm, punching herself in the face, etc.
Several hours later we sat down to have a talk. Told her that we wouldn't support her staying on at school to do A levels, that academia was affecting her MH too much and it wasn't enough that her friends were staying on. By bedtime she was talking about going to college, doing something much less rigorous and not making any big decisions about the future until she's in a better place.
It's been exhausting and I feel as if I've been in the boxing ring. No clue what her future will be now. We are older parents, self employed, no pension. We can't support her indefinitely financially and worry about how she will manage her life...

fatpord · 30/12/2018 08:52

Barely survived. I'm exactly the same. I generally end of shouting at him by the end of another exhausting day. Then I feel guilty because who would choose to go through want he does? But then he won't help himself and sometimes I'm not sure if it's the ocd or if he's just being lazy and attention seeking. I want to scream at him and shake him and say pull yourself together. But when he's really bad and in distress I know he really is ill! I wish there was a manual on how to do it right!

fatpord · 30/12/2018 08:56

Being in a boxing ring is just about how I feel right now. And no idea how he's going to manage his life either. Can't see him going back to college but god only knows how bad it's going to be without a purpose.

Topseyt · 30/12/2018 09:22

We survived. DD loves having her older sister around as they are very close, so that has helped.

It is a temporary mask though. I think the real struggles are just beneath the surface and will show again soon.

Original poster
SouthWestmom · 30/12/2018 09:51

Fatbord it's so similar here.

I feel generally that MH is so difficult - with physical illness there's generally straight line treatment, and outcomes, but we have no strategies (do we do the rituals for him when he asks?) and he won't take the medication.

We are resigned to accepting an admission if offered because we are desperate for him to go back to how he was. If that's even possible.

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fatpord · 30/12/2018 10:38

I wish I knew SWM. The counsellor says that part of OCD is involving everyone else in his ritual. Reinforcing or reassuring isn't meant to help but as he is so bad at the moment she thinks we should go along with him at least until she has the time to work more with him in the New Year.
I wish I knew how you could persuade him to take medication. I don't think it's a cure all but I'm sure getting the right medication must help.

Original poster
SouthWestmom · 06/01/2019 13:51

I'm so fucked off with it all.

I'd rather it was a physical illness.

I spend most of my life depressed and suicidal as I can't face the next forty years like this.

His whole life is shit and dominated by nonsensical crap.

But he was told by one therapist to be rewarded every time he challenged something so now it's all 'I'll do x if you take me to the cinema/ give me coke/ buyme Dominos's' No one takes responsibility for this - no one has said do this, this is the reward, don't do the rituals.

So this is it. He won't do anything unless I spend £30 quid to 'reward' him. And it's only certain stuff and he still is totally trapped by the OCD and spiralling downwards.

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Topseyt · 06/01/2019 13:54

Jeez, that therapist sounds up their own arse. I might question that advice.

Original poster
SouthWestmom · 06/01/2019 14:19

Yup. I think the idea was a small reward but they never defined it and it's just become another barrier.
He is being assessed for ASD which I wonder made the reward stuff weird for him.

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Parsley65 · 06/01/2019 15:16

Poor you SouthWestmom. I feel for you. It seems like we're on a very long and lonely road with no end in sight. Try and be kind to yourself and think of small ways to get through the day...

My DD is due back at school tomorrow for the start of mock GCSE's. After her post Christmas meltdown (when I told her I wouldn't nag her any more about revision) she's done none at all! She has seemed to be a bit more relaxed, but when I mentioned her doing some cramming this afternoon (something she previously said she would do), she retired to bed "in shock" she said. I am wondering how this has come as such a surprise and how she is ever going to get on in the world if she is so very fragile?
I have just finished off all the leftover Christmas chocolates and feel sick - and disgusted with myself...

Original poster
SouthWestmom · 06/01/2019 16:18

Parsley65 your anxiety levels will burn off the chocolate, wouldn't give that a second thought.

We do have lots of attention but not intervention if you see what I mean? I'm hoping he can start therapy and avoid an admission but at the moment I feel like we are elastoplasting him while we wait.

To be fair, everyone is doing what they can, just nothing can come soon enough right now.

OP posts:
Topseyt · 06/01/2019 17:19

We are still waiting for the therapy to start in earnest, as the Christmas and New Year break kind of got in the way. At least we were able to start the fluoxetine just before the end of last term. DD is hopeful that it is starting to help, but it is very early days yet and still assessing what dose she will need to be fully effective.

She still has a mental block on eating sufficiently, and I worry that she could drop backwards. So proper therapy needed.

Parsley65 · 06/01/2019 17:31

Thanks SouthWestmom. All the anxiety in the world wouldn't burn off the amount of chocolate I've eaten today - but that's a whole other thread!
Guess it's a case of keep chasing and nagging for the help you need. I know they're overstretched, but you need to make sure your DS is not just at the top of your list, but other peoples' too...

Original poster
SouthWestmom · 06/01/2019 17:55

That's great she's taking medicine Topseyt and maybe it is helping? Do therapy when it happens might work better?

Mine is just resistant to everything. Fine until it isn't.

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Original poster
SouthWestmom · 06/01/2019 17:56

My thing is those godawful candy canes - disgusting but addictive. No one ate them so I have loads from the tree and a spare pack DH bought. Trying to think of uses for them rather than just absent mindedly eating them.

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Topseyt · 06/01/2019 17:59

She is keen to get the therapy started as soon as possible. Therapy and fluoxetine are meant to be side by side for her, helping each other.

They just have to decide which team member will be her regular therapist. Hoping that it is one she has already met and clicked well with. This is the NHS though, but fingers crossed.

Original poster
SouthWestmom · 06/01/2019 19:37

Same here except mine won't take the meds.

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fatpord · 06/01/2019 20:44

Oh SouthWestmom I do feel for you.
What does his doctor/therapist say about him taking meds. Do you think he might be more receptive if the recommendation came form another person? My son's therapist didn't suggest it at all even though she says his ocd is severe!
How are you all coping with the back to school/college stress?
My son won't do anything to help himself to get back into a proper sleep routine and won't do any catch up college work. Sometime I wonder if it's self-sabotage and he doesn't want to get better.
At least a couple of times this week I've wanted to walk out the back door and not come back!

Original poster
SouthWestmom · 06/01/2019 21:22

Hey fatpord i regularly feel like that. I need something as an alternative to watching this slow death of my son.

It's like the light slowly going out.

We have been extremely lucky I think in that CAMHS have prioritised him and are staying in touch - he won't listen to anyone though (family, psychiatrist, therapist, friend). It links I think with his weird thought process.

Have you asked your therapist about meds? I think only a doctor can prescribe so maybe that's why?

OP posts:
fatpord · 06/01/2019 21:53

I've spoken to the therapist about medication but it wasn't suggested until I asked her if she thought it would help.
We're paying for him to see a psychiatrist in a couple of weeks to get him assessed for medication - thank the lord - it's a little hope on the horizon that's holding me together at the moment.

I can sort of understand his reluctance to take meds - I think it does relate to their thoughts. My son 'can't' give up the rituals because if he does it's his 'fault' if something bad happens. He also thinks that about going to sleep - if he goes to sleep he has no control over what he touches etc. I guess your son could feel the same way about medication - if he stops 'caring' he might do something that will be his fault or have no control over. Does he ritualise a lot?

It IS like the death of your son - I totally agree. It is the saddest thing and very few people understand.