Life dedicated to caring for child with complex mental health issues

[Emmaheather]

My brother (who lives in another country) has 2 teens. The younger (DN, 13yo) / has major problems - severe anxiety, complex mental health issues in the context of neuro diversity (no learning difficulties). Older child is doing fine. DN has not been to school for several years, they have no friends or social contact, and my brother's life is dedicated to caring for his child. He's separated from the child's mum but they co-parent well. His work is massively disrupted (he has understanding employers but he gets little done and is unfulfilled). He has v limited social life and his health is not great (no time to exercise etc). DN will not spend time with anyone other than parents. My brother says they couldn't possibly consider respite or residential care as would be too traumatising for DN. He has not been able to visit family for many years due to this situation. he's on call night and day in case there is some crisis.

The situation all feels so awful, totally stuck and my brother is very low. My thoughts are that unless they do something like residential care, nothing will change for anyone. I also think DN will be highly distressed no matter what, and that it's important to find space for other family members needs. But my brother thinks the distress would be too much for DN and cruel to do this, and obviously he's her parent/knows the situation much better.

Things have been like this for a few years and seems to be getting worse.If I was in this situation I don't think I could be so self sacrificing, but maybe I would feel different if I was in his shoes. What would you do in this situation? Do i encourage my brother to try make some change even if distressing for their child? Is it reasonable for them to sit tight for another few years and hope things improve in adulthood? But if DN cannot regulate emotions at all and isn't engaged in anything that would support this will change really happen?!

Just wondering what country, because there are different systems of social care/respite in different countries, and different levels of difficulty accessing these things too

I know a couple of people in a similar situation.

One employed a "nanny" who they introduced to the young person slowly. The nanny now looks after the person (who is now in his 30s) at the family home. Obviously this is expensive.

One was able to get their child to access school but the child worked 1:1 with a TA in a room that no-one else ever went in. Again, it took a long time to introduce the child to the school arrangement. If anything changed the child ran away/was violent.

The level of distress that residential care would cause to a child like that unless they are introduced to the caregivers very slowly and carefully is extremely high. Very few parents can tolerate the high levels of mental distress and self or other harm that would ensue.

They have tried so much and taken things incredibly slowly. Multiple professionals are involved. They've had a couple of support workers but they moved on and struggling to find someone else. DN had place in a specialist school which my brother thought was good. With all these things, they start ok-ish, but something will happen and DN will then become so overwhelmed and will stop. DN will think the other person has done something wrong and will take against them and refuse to have any further contact.

I'm very worried about my brother's mental and physical health. We have a strong history of heart disease and TBH I'm v. worried he'll end up having a heart attack and sudden plans for care of DN will need to be made.

Sounds like he needs respite, this doesn't have to be residential care. Social care support is a pita to get but you could do some research and help him to advocate for some support. He can ask for a carers assessment and his,child can also ask for a social care assessment

Sadly DN wouldn't go to respite and would become massively distressed. They have been through phases of going to a&e due to severe distress and self-harm. My brother is very fearful of doing anything that might rock the boat

We are in a similar situation and there really isn’t any support. Respite care or residential is a pipe dream - there’s no funding.
We are not being self-sacrificing but just having to care for our child who for no fault of their own is suffering hugely.
It’s soul destroying, lonely, expensive and has seriously curtailed every other thing in our life, but sadly there is no alternative- all services have been cut to the bone by this government.

@NancyStStacey it sounds like an incredibly difficult situation and I can only imagine how challenging it must be.

My brother is in another country so things are different and I don't really understand the system. I guess I'm not sure what they could be offered that might help/work for them, even if money was not an issue. DN didn't feel able to attend a special school and my brother said the couldn't have hoped for anything better. I just don't know how they can keep going but I guess they will until they really have no choice due to increasing needs or their own health.

My brother says they couldn't possibly consider respite or residential care as would be too traumatising for DN.
I completely agree with him and would do the same n his situation. My DD is Autistic, has anxiety, panic attacks. I've dealt with a suicidal self harming 10 year old, I would do anything not to see her go back to that place again. Her brother has a lot of restrictions and basically only me and his Dad (my ex) can care for him. The world is traumatizing enough for some Autistic kids, I won't add to that, not for anyone including myself . You're wanting him to do something that could break his child
Yes I am burnt out and barley holding it together, but as a parent that's better than the alternative.

I would suggest one thing if they haven't tried it, or trying s different one if they have, medication for his mental health problems. It can give mental space for therapy and other interventions to work. DD has had a lot of therapy, but it wouldn't have worked without medication. Which my XH didn't want her to have. But one day she was sobbing terrified in the garden because a tiny ant was nearby and I thought fuck it, we can't live like this anymore, she can't like this and I took her to our GP and she started on medication for her anxiety. Right now he's looking for support for his child, he's looking for a way to reduce that overwhelm his child is feeling so he can live in the world without it harming him so much, Id support him in that. Maybe one day the answer will be different but I wouldn't be giving up at 13 and I wouldn't be trialing respite with a child that's struggling this much. All he'd end up with would be a more traumatised child, which won't help any of them.

@EliflurtleAndTheInfiniteMadness thanks for your message. It's helpful to hear your perspective and experience. I know I don't know what's right for my brother and DN. DN is on various medications and regular psychiatry input. I'm just so concerned for my brother and worry about his health especially as we have such a strong family history of heart disease. I haven't offered him advice as I know I'm not expert and only they can know what's right for them. Hopefully with time/age things will settle a bit. I'll just offer a listening ear.

I also came here to say that you are right in theory but practically doing this to his DD would drive her back to self-harm or suicide.
My first thought is that she may end her life.

It is hard to advise without knowing location because what’s available is so variable
Without that info, a couple of suggestions are:

He has to make time to look after himself when the child is with the other parent

Online tuition - schools like Interhigh if academically appropriate or Zoom-call music therapy
A personal trainer who could help them both exercise (as you are worried about his cardiovascular health and it will help his child to get moving)

This seems to be the norm for so many families now.

Our niece is similar but younger - 9, being assessed for autism, selective mutism, epic meltdowns, no friends, no interest in anything much. BIL/SIL have their heads firmly in the sand at the moment but I really can’t see a time she will ever live independently and have a normal life in that sense. The teen years are going to be HARD. The problem is they refused to let anyone assess or help her for years until her behaviour became intolerable and she’s missed out on years of support.

DP’s friends teen daughter the same - likely ND, has frankly scary meltdowns where she trashes the house and attacks everyone.

I wish I had any advice, it’s awful to see family going through this but the only thing I can think of is this seems to be so common now they’re far from alone. And hopefully whatever government is elected will do ‘something’ (no idea what) because it’s a looming crisis for the country.

If the op won't say the location not sure the point in the thread really

🤔

Bangladesh will render different answers to Canada, for example

@EliflurtleAndTheInfiniteMadness So, just to play devils advocate, what’s your plan for when you and your DH die? How are you aiming for this to work then?

The reality is that respite might be traumatising but, long term, they will have to live without you.

Teenagers up to 25 can find mental illnesses hard to cope with so it's not necessarily going to be like this for ever.

I have a severe mental illness and it started around the age of 8. From 16-20 I couldn't really control it at all I was very unwell and self destructive. From 20-25 I started to manage it so much better and I am now completely unrecognisable from 18 year old me even though my mental illness can still be a large part of my life.

As your niece gets older she will need to learn to take more responsibility but it will take time and support.

@Superscientist that gives me hope for the future. Thank you

During the second year of my a levels I could only manage 10-20 minutes of each lesson. I found out the topic we were going to learn about and then I left or I had to repeatedly sit out side to calm down. I was asked to leave 2 exams due to extreme panic attacks.
At 29 I was awarded my chemistry PhD and now work in a high level job. I can't work full time since having my daughter and having a severe MH episode but I work 4 days a week with Wednesdays off as I can't manage more the 2 days in a row.
I have to go to bed around 10 every night and have a good diet, be careful about having too much coffee, sugar and alcohol and just generally live by the recommendations that doctors suggest to everyone. Fairly boring from the outside but stability and a normalish life is a joy and it is always worth it. I don't have a lot of friends, it has been hard to keep them when unwell but those that are around are wonderful. I typically keep 1 or 2 friends per life period. I have been in a relationship with the same person since I was 19. At times a challenge but a constant reliable person at my side is brilliant. Unlike your niece I didn't get this from my parents.

Wishing you and your family a break from the relentlessness of mental illness soon x

Personal training is a good idea. I'll definitely talk to my brother about this. I'm keen to support him to think about himself, at least a little bit.

@Superscientist thanks so much for taking the time to respond and share your story. It's a really helpful and hopeful perspective for me to hear.