To wonder how you stop worrying and manage to live your own life if you have mentally unwell children

[Victor1aPlum]

Or are you doomed to a life of constant unsettled worry, sadness and anxiety in the back of your mind?

I’m a retired therapist and mother to a child with mental health issues. This is just my personal perspective and it might sound harsh but I think it is better to be honest. I would say that expecting therapy or state provided mental health services such as CAMHS to provide a fix or a cure in the same way that the NHS does for physical illness is unrealistic. Therapy was until recently only ever intended to be a journey of self-discovery, possibly helpful in cases of mild to moderate mental health issues such as depression or anxiety, but not designed to be a cure all. The government and professional therapy organisations are being disingenuous when they present it as a solution to serious mental health problems. Having said that, I am very, very sympathetic to those of you with severely distressed and disturbed children as I have one myself and am perpetually worried sick about her. We are living in a time of acute crisis with unprecedented rates of severe mental health issues among young people, the causes of which are, as yet, poorly understood. It is not your fault as parents. Mothers have been blamed in the past for schizophrenia, autism etc. and now we are blamed for gender dismorphia/trans/ self harm/ BPD and everything else besides. I am so very sorry I have no solutions to offer. Take care of yourselves as other posters have said above. It’s like the oxygen mask rule on aeroplanes. You look after yourself first otherwise you can’t look after your child.

@ArseInTheCoOpWindow and @Mushroomwalls it's incredible what they get away with. Essentially withholding care until they're of the age to need adult services.

I know that's their strategy, a friend's friend is v senior in mental health in the NHS and said it's partly how they reduce waiting lists.

The list here is at least three years for assessment. I don't believe my child would have survived that long.

I can't think of another illness in a child would render them unworthy of treatment.

My 20 year old son has severe anxiety, bipolar 1 and psychosis - was sectioned at 17 for three months, is currently stable. His illness came after my daughter emerged from a long period of severe depression and aggressively oppositional behaviour that started at 13. She was raped at 14, & was hospitalised twice for depression afterwards. In response to all the family trauma caused by this my youngest son (18), who's autistic, has now also developed a serious, treatment resistant depression. And then last January my son with bipolar was also diagnosed with chronic myeloid leukaemia.

I feel like our family has been ferociously, bizarrely unlucky - particularly as before my daughter got ill at 13, all my kids were happy and well adjusted, enjoyed school, lots of friendships. Literally no problems in primary AT ALL.

I have just accepted that this is my life, and these are my children's lives. I pay very close attention to every positive moment and to every 'win'. There are times that are very bad and very anxious making and I just try to take it moment by moment. But in between those times there are periods of happiness when the anxiety declines.

I've been for counselling to help me manage my feelings, and I'm very self disciplined about stopping myself worrying about my children's futures, over which I have no control.

I had plans for returning to work full time when my kids finished primary, but I've now accepted I'll probably never work full time again. I know my limits and I try to stick to them - not put any more pressure on myself than is absolutely necessary.

I'm on a Parenting Mental Health group on Facebook, and though I don't post much, I read other people's posts. So many parents are at breaking point with their child's severe mental illness. :-(. You're not alone OP, and I'm sorry for what you're going through. It's very, very hard. :-(

I was told by one of my children’s psychiatrists that I needed to take a step back. So I did. And things got a bit better temporarily with that child. As they get older and develop more insight into themselves it became easier also. It never goes completely because none of them are truly better. But some space opened up for me to be able to focus a bit on myself and go back to some hobbies / see friends more etc. Make plans and actually see them through. Child mental health treatment is dire - really no one seems to have a clue - everything is so protocol driven with very little flexibility or consideration for the individual. If your child refuses to follow the path then you are stuck, Ihope things get better for you.
. it’s so hard when you are mired in it. It helps if you have someone good and neutral to offload to like a counsellor. Wishing you all the best.

Can I ask - those of you who have talked about setting boundaries or stepping back - what did that look like for you?

@Spanglemum75 Im in Scotland it’s DLA DD is now 19 so has to apply for it herself

@NImumconfused sorry to hear you are going through the same, I stopped contacting those friends, one was a complete user who was more interested in DD looking after her dog than DDs health. Also two of my friends turned up one day unannounced there was only DD in the house, they banged and banged on the door to make the dog bark DD wouldn’t answer the door. Then they got all shirty when I said that the rest of us were out and DD wouldn’t answer the door. They just couldn’t understand “but it’s us she knows us” She was terrified. Her anxiety is that bad. They just didn’t get it. Another “friend” texted to ask after both my DCs exam results (basically to brag about her own DCs) DD had been unable to go to school for 6 months so hadn’t sat exams.

No one asks how she is, it’s like she’s a non person now. She’s agoraphobic doesn’t leave the house.

I’ve had to step back and not feel responsible for them. We can only do what we can and then we need to let go and leave them to it. It’s hard but I can only carry so much.

I recently abandoned a long term friendship with a woman who when I told her I was mentally broken and at a crisis point (I had never told her before how anxious and terrified I was for my son, but I was desperate at this point) told me to read a lovely book and have a nap!

it is so indescribably hard to be terrified for someone you love unconditionally because you can’t protect yourself in any normal way from it, the terror. I am so lost currently

I can only talk about my own situation. DD has a chronic and incurable disease and the poor MH that goes with it. She has good days and bad days. Before she developed this disease, she was top of her class.

Currently it's a bad phase. Nevertheless I take time to replenish myself. I went out with friends over Easter and for a long walk in the sun with DH. I am lucky to have a bit of spare income for treats and I often treat myself to the theatre, music and comedy nights. I have a DS who has good MH and I spend time with him. I walk a lot and swim too. I build some pleasure in on most days.

Therapy was absolutely useless for me and very expensive. They just kept repeating stuff back to me. I stopped now and use that money for other things.

I actually prefer if my friends don't ask about DD as I cba to explain the nature of her disease any more. They think I have Munchausens or something. Most of them don't get it at all, so I just don't talk about her. It's very lonely being in this situation but I have learnt from experience that people have compassion fatigue and don't want to be my therapists. DDs friends don't get it either and think she's a drama queen.

I feel guilty sometimes because guilt is inbuilt into us mums. But why should I? DDs disease is not genetic. I could not have foreseen it. Its just terrible bad luck.. If a friend had done as much as I had for DD, I would have called her a hero.

My heart goes out to everyone here. You are all heroes. Particularly you @izimbra and @ArseInTheCoOpWindow

That sounds terrible @headache , your poor DD! My friends are not normally as bad as that, I think like @KateMiskin suggests it's compassion fatigue - it's four years since this started and they've run out of sympathetic things to say. Hugs to all of us, it is so hard.

@headache

You can be a signatory and apply for her. We’ve done this for my dd who won’t speak to people.

I share some of what you have and really understand the feeling of feeling ferociously unlucky and looking back to life before with bewilderment. I’m supporting two and have Anorexia, SH, suicide attempts, PTSD,a rape, depression and ND in the mix.

I get the empathy fatigue. I don’t feel I can ever be truthful when people ask how are things as if I was it’s such a downer. I worry people will think I’m attention seeking due to it going on for so long.

There is some really good advice on here, thankyou so much for all your contributions. I’m trying to not worry about the future and things I have no control and also to not feel guilty. Yes celebrating the wins and taking things moment by moment is important. I guess not worrying about the worrying is too!

My sons are approaching their mid-twenties now, and both have mental illness.

My eldest has a serious psychotic illness and autism. He is a very gentle and vulnerable young man, and the medication has made him gain a lot of weight which really effects his health. I am working with his support team to try to help him make healthier choices, but his eating is emotionally driven. His illness cost him his education. He left school at 14, and was in and out of CAMHS units until he went into residential living at 18

My other son has a serious eating disorder, OCD, GAD and is being assessed for autism/ADHD. He also left school (or was unable to attend school) at 13, and has been seen infrequently by mental health professionals over the past decade. He is extremely avoidant. I work from home, and keep a low arousal environment for him. I hope he will take up online learning. He is very intelligent, but afraid of commitment.

My husband also has a serious mental illness, and is in a care home. How is currently experiencing delusions, but we like to see each other twice a week.

When we all lived together the situation was very difficult, and one of the reasons that I began working from home was so that I could combine work and care.

In answer to the original question, I do not think I coped. I think I broke a hundred times. I broke when the family had to part. I broke when my eldest had to go into care (although he was an adult). I broke when my husband went into care (although we no longer lived together). I broke when I realised that my sons were not going to complete school, go off to college, go to work and so on. Their paths were unknown.

And it is because mental illness is relentless. It can have such an impact on the individuals' lives and the lives of all members of the family, that it is so important to try to preserve our own mental health. I swim and cycle when I can. I read. I have a job that I love, and my greatest aim is that my sons and my husband are safe and happy.

You learn it, I think, because that’s what you experience and eventually it sinks in. And you talk it through in therapy and with their carers and eventually you try the unpalatable because, frankly, you have tried everything else and so what choice is there? I found (and still find, now my DD is over 30’and doing well) that I can know something with my head, but until I know it also in my heart, I find it hard to change my behaviour. I think I sort of wanted responsibility, because if I was responsible, surely i could change things. So it look a long time to relinquish that. And as I said, it felt as if I was saying, there is nothing I can do, I wash my hands of it all, get on with it without me: and of course that is not what one says at all.

A very wise woman who had been through similar once said to me, if nothing changes, nothing changes. And I would say to you, if you change how you think and do things, that change will itself provoke change.

Find people who get it so you don’t feel so alone, if you can. That saved me, along with therapy, I think.

I feel on high alert every time DS2 dips - even slightly, because when he was very unwell it was so worrying. I know I am hyper-vigilant about him and over react if he is stressed or down or not eating properly. But it feels like my reaction is hard-wired. Would take some undoing.

My DC both struggle with their mental health, prob undiagnosed neurodiverse, they’re adults but I have the worry/anxiety like you mention.
They are OK at the moment, but when things are bad it’s not easy and you can’t fix it for them.
You're only as happy as your unhappiest child.

There’s a saying that goes something along the lines of - a mother is only as happy as her unhappiest child. My son is in his 30’s with multiple dx along with his Classic Kanners Autism and yes it hurts me to see him struggle so much at times but having him has made me happy with the very simple things in life such as my family.

So much insight, empathy, hard work and desperation on this thread. My huge love to you all. There is no answer. But please take care of yourselves, and take to heart the reminder that you are not responsible and that there are limits - severe limits - to what you can do to change things.

My own son died as a result of his illness, and I was so numbed by the awfulness of his situation in life that I have never succeeded in properly grieving his death. Things just went on - battling the bureaucracy of the police response and the inquest investigation just as we were battling the NHS while he was still alive. Nothing changes, the numbness never changed.

Someone once said to me.. "a mother can only be as happy as her child is"

Very humbling thread. My heart goes out to all of you.

I try to defy that saying" A mother is only as happy as her unhappiest child" as much as I can. I do not deserve to be as unhappy as DD frequently is.

@KateMiskin I’m not unhappy either. And whilst I can’t say I defy the saying I quoted. I can say I don’t actually give it any thought on a personal level but it did seem appropriate to post given the topic of the thread.

It's completely appropriate @StrawberryJellyBelly . I didnt meant to criticise you, sorry. I only meant personally, I have to keep battling to show DD how to keep on keeping on. I feel very strongly that I have to show her the beauty of the world. Easier said than done, I know.

@KateMiskin hi, you didn’t criticise me and I’m sorry if my post was ‘off’. It’s late where I am and I probably posted without much thought of how I came across.

My heart goes out to you 🌼

Some awful sorrows here. So sorry for the ones battling illness or who have suffered losses. 😔

My story is probably not as bad as some of the ones mentioned here, but over the last few years I have been increasingly drained by my daughter’s MH issues. She is now at university and dumps everything on me which I have started to resent. She has said she feels better after dumping her worried on me. What I don’t see is that she then continues her day reasonably ok with her friends, whilst I am left holding the stress and heaviness of her sadness. She won’t unload to her (lovely) dad so I get it all. And I have started to resent him for this.

A friend sent me that I need to listen, absorb it, and then let it go, because unless I pick myself up, I will not be ready for the next anxiety ‘punch’ she delivers to me. I have tried to heed that and brush things off and try and continue some kind of life. Because what is the alternative?

But I still feel sick when I see a text from her has arrived, and it has ruined so many of my nights out. Such a useful thread for solidarity.