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AMA
Original poster

My Ds has been in a psychiatric hospital for 4 years

258 replies

Sammysees · 17/02/2023 21:24

I know there has been previous threads on this topic. I thought you may have questions about what it’s like for a parent with a child (young adult) in long term psychiatric care. AMA.

OP posts:
Original poster
Sammysees · 17/02/2023 22:19

Jdjdntbhh · 17/02/2023 22:12

does your son have insight into his situation and what has happened in the past and what might happen in the future?

how do you pass the time during visits?

what do you do for yourself in the days after your visit?

My son won’t discuss it with me. He never has and I don’t think he ever will. He has a wicked sense of humour and we tell each other inane things to make each other laugh. I usually spend 2 hours with him and we talk about what he has been up to, what I have been up to and generally just try to laugh.
I visit on a Sunday and then it’s straight back to work on Monday. I don’t look after myself well enough.

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NCTDN · 17/02/2023 22:21

You must be so strong. Does your son resent you for being 'free' whilst he is in there?

Veryverycalmnow · 17/02/2023 22:21

What advice would you give parents of a high functioning, intelligent 6 year old DS currently being assessed for ASD and struggling a little bit, mainly socially at school? I know everyone has a different path, but your son's story resonates as I see how schools are dealing with bullying (or not) and it is only getting worse.

Original poster
Sammysees · 17/02/2023 22:21

XenoBitch · 17/02/2023 22:12

Do you think it is the best place for him?
People say that autism is not an MH issue, so why would anyone be in hospital for it? It can not be treated or fixed.

Yes absolutely the best place for him. He is not there because he has autism. He is there because he wouldn’t be alive if he wasn’t. There are really strict protocols on how long someone should stay which is being looked at every year.

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Original poster
Sammysees · 17/02/2023 22:23

Crikeyalmighty · 17/02/2023 22:16

My heart goes out to you OP- I have a 24 year old son - he too very bright and adult diagnosed ADHD- I am lucky as he works , has a decent career and is a very lovely and kind guy - but he's not been easy when younger , was bullied at secondary school from 14 to 16 and told some big lies along the way and he's still awful with money. I love him to bits though, so I cannot imagine the torment you have been through. I hope it turns round for him x

Thank you! It sounds like your son is doing brilliantly. A big well done for you and your son. I know it wasn’t easy for either of you.

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pointythings · 17/02/2023 22:23

Thank you for posting this AMA, OP. I used to work supporting secure MH in the NHS (non clinical) and it was a real eye opener to learn that there wasn't anything structurally in place to bridge the gap between inpatient care and full independence in the community. Your posting here will raise awareness of the need for supported living and specialist community teams to be put in place so that people can have the lives they deserve.

TheMamaYo · 17/02/2023 22:25

How are you holding up OP?

Original poster
Sammysees · 17/02/2023 22:25

Bikeybikeface · 17/02/2023 22:16

Is he on any medication? Has it helped?

He has been on several medications. It has been a long road to find one that was suited to him. He had a lot of side effects. He is quite stable at the moment luckily. I think it has helped. Not enough though. However, in time, I hope the therapy helps more.

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Original poster
Sammysees · 17/02/2023 22:27

vivariumvivariumsvivaria · 17/02/2023 22:17

I am pleased to hear that your son is safe and that he feels safe and you are happy with his care.

I'm so sorry he was failed by so many people and systems before things got to crisis.

It is grotesque that we do not manage the needs of people like your boy. The consequences of that can destroy lives.

You sound like you are doing an amazing job. I hope you are getting support too.

Getting help for myself has been impossible. I did pay for a counsellor for a time and I am on medication to help with my sleep and anxiety. It helps a little.

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Original poster
Sammysees · 17/02/2023 22:32

Icedlatteplease · 17/02/2023 22:18

DS15 is facing the prospect of a planned admission. Is there any advice you can offer

Has your DS been safe,? I worry mental health hospital can be quite chaotic

It can be chaotic. My son is on a ‘quiet’ ward but it’s not particularly quiet. You should get a welcome pack on admission. It should tell you about life on the ward, contact details and when you can visit. I’m sorry your son is going through this too. I’d ensure he has plenty of books (a kindle maybe?) food parcels - food has to be packaged and you can’t take in home cooked food. I take microwave rice, pots of baked beans - things that can be microwaved. The food isn’t brilliant.

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Cocobutt · 17/02/2023 22:34

How far away is the unit from you?

Did you choose which one he went to?

Meandfour · 17/02/2023 22:34

Just wanted to send big hugs, OP. I cannot imagine the pain you go through every day and I wish you and your son the very best. He is lucky to have you.

Original poster
Sammysees · 17/02/2023 22:34

bananaAgogo · 17/02/2023 22:19

Oh God I can't imagine how awful you must have felt. How was he in prison? Did you worry about him? I ask because I worked in prison and I always looked out for these types of personalities when we had them in. Can I just say that most Officers did their very best to keep them safe

Show quote history

It was horrendous. It’s never a situation I thought I would ever find myself in. Some of the prison staff were absolutely lovely. Thank you for being so kind to vulnerable people. It can be a thankless job.

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Original poster
Sammysees · 17/02/2023 22:35

NCTDN · 17/02/2023 22:21

You must be so strong. Does your son resent you for being 'free' whilst he is in there?

I don’t think he resents me but he is desperate to come home.

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Icedlatteplease · 17/02/2023 22:36

Sammysees · 17/02/2023 22:32

It can be chaotic. My son is on a ‘quiet’ ward but it’s not particularly quiet. You should get a welcome pack on admission. It should tell you about life on the ward, contact details and when you can visit. I’m sorry your son is going through this too. I’d ensure he has plenty of books (a kindle maybe?) food parcels - food has to be packaged and you can’t take in home cooked food. I take microwave rice, pots of baked beans - things that can be microwaved. The food isn’t brilliant.

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Thank you.

Another question, have you found a way of meeting up with other parents going through this? We're way beyond the Normality of local SN groups

TheShellBeach · 17/02/2023 22:40

Hi OP. I'm sorry that you and your son are in this position.
Is your son in a secure unit for offenders? Or are his fellow patients a mix of the typical people who are in psychiatric hospitals?

Partyandbullshit · 17/02/2023 22:40

I’m so sorry to hear about your son OP. Every system he’s been in hasn’t been right for him, perhaps now with the exception of the NHS’s secure unit.

I sometimes look at my much younger son, who I can’t fathom, and wonder whether he’d be happier living a different life in a different country. He just doesn’t seem suited to institutions, the school year, the rigidity of children’s lives these days, indoor living etc. I feel he’d be happier living to sustain himself only, with anything else (friendships etc) a bonus. Do you feel that way for your son, ever? Wish that you could take him away to somewhere better suited to him?

Original poster
Sammysees · 17/02/2023 22:40

Veryverycalmnow · 17/02/2023 22:21

What advice would you give parents of a high functioning, intelligent 6 year old DS currently being assessed for ASD and struggling a little bit, mainly socially at school? I know everyone has a different path, but your son's story resonates as I see how schools are dealing with bullying (or not) and it is only getting worse.

My son struggled socially too. He was ok at primary, it was secondary that the problems started. I would keep an eye out for subtle changes in behaviour. It’s tough because (most) schools don’t tackle bullying acceptably. If he can make one or two friends it will make a massive difference. Any sign of bullying bring it up with the school straight away. And don’t be fobbed off. Good luck! I hope your sons years are happy.

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Original poster
Sammysees · 17/02/2023 22:43

pointythings · 17/02/2023 22:23

Thank you for posting this AMA, OP. I used to work supporting secure MH in the NHS (non clinical) and it was a real eye opener to learn that there wasn't anything structurally in place to bridge the gap between inpatient care and full independence in the community. Your posting here will raise awareness of the need for supported living and specialist community teams to be put in place so that people can have the lives they deserve.

I have been told by the hospital that the care in the community isn’t great and can be hit and miss depending on the area you are in.

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FoxFeatures · 17/02/2023 22:43

I don't have a question but just huge admiration for you OP and all the other parents on this thread. You are remarkable. 💐

Original poster
Sammysees · 17/02/2023 22:43

TheMamaYo · 17/02/2023 22:25

How are you holding up OP?

Honestly? I feel sick 😂

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Original poster
Sammysees · 17/02/2023 22:44

Cocobutt · 17/02/2023 22:34

How far away is the unit from you?

Did you choose which one he went to?

The hospital is an hour and a half away and no I have no control on where he goes.

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Original poster
Sammysees · 17/02/2023 22:45

Meandfour · 17/02/2023 22:34

Just wanted to send big hugs, OP. I cannot imagine the pain you go through every day and I wish you and your son the very best. He is lucky to have you.

Thank you. That means a lot Flowers

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Icedlatteplease · 17/02/2023 22:45

Sammysees · 17/02/2023 22:44

The hospital is an hour and a half away and no I have no control on where he goes.

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I also wanted to know this so thank you. Has he been in the same place all those years?

Original poster
Sammysees · 17/02/2023 22:46

Icedlatteplease · 17/02/2023 22:36

Thank you.

Another question, have you found a way of meeting up with other parents going through this? We're way beyond the Normality of local SN groups

Show quote history

Yes! The hospital has a carers event monthly. However it is usually only 3 or 4 of us ever there. It is helpful to talk to other parents going through the same thing though.

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