DS mental health problems. Do I resign?

[OrangeJumpsuits]

Hi everyone, I’ve NC’d for this.

My DS has had some severe mental health problems for a number of years and they come in waves. The last time he had a really bad phase was 2019-20 and he’s again now in a similar phase.He has a long term highly qualified therapist, and support from his GP.
During these phases he needs us with him all the time, has suicidal thoughts and can’t sleep. He’s 21 so we can advise but he ultimately has control over what he wants to do (and he’s doing as much as he can at the moment).

So, having given you as much background as I can, I’m about to ask what is probably an entirely different question to the one you might think I’d ask!
DH and I are sharing the interrupted nights with him and we might still be up anytime from 4am-6.30am. We then both have senior roles and need to start working by 8.30/9.
Last time this happened I gave up work for 18 months to be the one who stayed up and stayed with DS. The reason I decided it should be me is because my DH has epilepsy and one of his triggers is lack of sleep over a prolonged period and I wanted to be with DS.

I’ve recently started a new very senior role on a very good salary (6 weeks ago) and it’s taken a lot of pressure off us re paying for DS’s treatments etc.

I’m mid-fifties and struggling with this situation more so than a few years back. I’m worried about my DH (and of course DS or we wouldn’t be doing what we’re doing).

We don’t have huge amounts of savings as we used a lot of this on DS’s initial onset, but are rebuilding and I’m wondering seeing whether you would give up your job to give the time to DS? Should I do that.
We have a small amount of savings (£11k) that would be helpful but I’d also look for another job that isn’t so all-consuming.

I'm not sure why I’ve just typed out this long message - thanks for getting to this
point - but I’m going around in circles as to whether I should resign. I don’t feel that I’m doing either thing right and my DS is my priority. I’m still in my probationary period so could hopefully negotiate a faster exit.

What would you do? I’m very tired so please be kind.

Thanks very much @cupcaske123

Good luck to you too.x

A carer overnight would be the best solution

This. I'm wishing you all the best and hope you find a solution 🙏

This sounds incredibly hard and you are amazing parents- your son is very lucky to have your support.
I think you should ask for an NHS referral- and I work in this field. His private therapy can still continue but he could get psychiatric/crisis support. And if you and his father have to do 24 hr shifts with him then it is a crisis. There isn’t a waiting list for crisis intervention - ask your GP to refer to your local crisis team . Some also allow you to self refer
If his sleep could be addressed so he was able to sleep through the night this could make a huge difference to you all.
And I don’t think you should give up your job - but do explore flexible working and their policies for carers leave

What is your sons life like when he is well? Does he want to study/ work? What is he interested in? Does he have friends? Can any of his friends help for some overnights? It’s important he doesn’t lose sight of these aspects of himself when he is ill even if he isn’t yet at a point where he can do them. Mental illness is so tough. I wish you all the very best

If he is so ill that he needs 24 hour surveillance, then I'd think he needs to be in a residential hospital with specialists.

Don't give up your job for two reasons - one, lack of money will immensely add to the stress and two, you actually need a break from mentally ill people in order to support them. It is absolutely draining, especially if they are a loved one. Time away, where you see progress for your efforts at work and earn good money - this is therapeutic.

I'd explain to him that until the worst phase of the illness passes, and it will pass, he needs to be cared for by professionals. You sound like a very loving mum, so I hope he wouldn't see this as a brush off but as the focus he badly needs.

No point in dragging the whole family down due to the illness.

I did give up work to care for my DS but it was a different situation as he had autism and MH issues, and he was under 18. Also I didn't really like my job and it wasn't very senior so I hadn't invested much of myself into it, and giving it up didn't make a huge difference to my finances (I went on carer/disability benefits which overall was fairly similar to my wages).

I'm glad that I made the choice but I'm not sure I would have made the same decision in your position. Sounds like you can afford to throw money at the problem (pay for others to be a carer, or a private residential unit - perhaps even overseas). I agree with others about keeping any NHS referrals going, as it helps to be "in the system" (yes it will take ages, but it sounds like he will still be in need by then, and you can use private services in the meantime). You may need social services support too (which will be even harder to get, but it's all about evidence).

Has the GP ever referred him to a Community Mental Health Team? It sounds like if he is struggling that much then he needs to see more than a therapist. That way he'll get access to a care coordinator, a Psychiatrist, support workers etc.

Good luck, such a difficult situation for all of you x

I agree with this. And gently op, you won’t be around for ever, a plan for the future involving others might well be necessary, and getting carers at least some of the time might ease the burden on you and your husband. It’s so hard, you sound amazing, your son is lucky to have you both.

I would reconsider ruling out the carer suggestions completely. Would you think about paying for someone to support on a respite basis?
Do also check out residential crisis care - private if you have that option.
The medication may make a difference to how much support your son needs from you in not much time. So I wouldn't quit the job right away.

(Longer term if they are a shit employer then think about a move).

Do stay on NHS lists too. And as PP has said, you do need to be planning for the future when your son may need future care that you and your DH can't provide just between you.

It sounds really difficult, but I think you need to really look after yourself and your DHs interests too. It's absolutely exhausting looking after someone with deep rooted mental issues (for me it was my DH). But my friends told me regularly that you can't look after someone else effectively if you're sinking yourself.
I'm not sure your DS has the right type of support. I also don't know why you're reluctant to have a carer in to look after him at night. I think you might need to accept that would be an essential first step to your own wellbeing and that of your DH, whose health is being adversely affected.

Personally I wouldn't resign , if your husband did become unwell it would really affect your financial wellbeing .

I think paying for a carer is the best option all round .

Op you are your husband sound amazing! Youve done so well with your job. Other posters have talked about planning for his future. Is he on pip? Is he known to social care ? Pls try and take time for yourself.

Hi,
I moved to an easier role then had to give up entirely.
I was having days off when DD wasn't safe to leave and I found myself arriving at work with this huge burden of anxiety and fear and found I just wasn't in the right headspace to face colleagues and do my job.

Three years on we've struggled without my wage, I'm worried about my pension as I also had time out when the kids were small. I've become socially isolated and physically unfit causing joint issues. I've lost my confidence for work and in any case although things are better than they were we sometimes still slip into crisis so I need the flexibility to not work.

I know people are trying to help - but I'm feeling a bit frustrated for you about the advice you are getting about crisis teams, inpatient care and overnight carers as if these are easy fixes but I bet you will have found that out for yourself already.

Is your husband's company any better? Does it have to be you who takes time off? My husband kept working but the chaos at home also impacted his career.

Anyway. Sorry you are going through this. I've been there.

I had to stop working because I just couldn't do it anymore but it had negative and long lasting consequences for me. My advice would be to keep going if you can but if you can't - you can't.

Your situation sounds completely unsustainable. Is inpatient care an option for your son?

You are allowed to have a life and career too. What is his diagnosis?

@Greaterwaterparsnip I cross posted with you.

I think (certainly long-term) you need to be looking at other options for your son, whether that is paying for carers, supported living or whatever. It's understandable that you want to help him, but one day - maybe sooner than you realise - neither of his parents will be around. Surely it would be better to sort something out for him while you're both still able to organise and supervise, rather than wait until some sort of crisis occurs?
And, personally, I think you absolutely have to hold on to your job.

Similar situation here too.
I am very lucky in that I have a WFH job with a manageable workload and a fabulous boss who allows some flexibility.
I often think about what would happen if I didn't have that, and honestly I think I'd have to resign. Because if I didn't, and was absent from the house for 40 hours a week, I don't know that my child would still be here.

I agree. This is not sustainable and is likely to see you and your husband in an early grave.. and then what happens to your son? He needs to be in a residential facility. But im guessing since you won’t consider carers you won’t consider that either?

How long has he been seeing his therapist? My aunt had similar with my niece. Years of needing to stay up with her at night, constant fear of self harm, suicide attempts and so on. It took two years of DBT (therapy), through the nhs and thankfully someone she liked and grew to trust. She is so much better now.

I was reading the other day that historically most people would have two nighttime sleeps with a long pause in the middle. It makes me wonder if a shift system could work for you and your dh. Lots of people are suggesting carers without knowing why you don’t want to do that.

how much sleep do you naturally get overnight OP? If you were to split 8pm to 2am, then 2am to 8am and top up with an hour’s nap in the day, it would perhaps be bearable in the short term.

Having a child in such anguish they are in danger of killing themself is not a job you can pass off to a stranger while sleeping soundly!

As to inpatient care - very hard to get - often on the other side of the country and there is an openly admitted danger things can get worse for the young person as a result.

DD had to be almost dead to get DBT. We only got to do half a cycle as DD refused to do it but that and family therapy that only Dh and I went to while in the group was very very good.

Hi everyone, thanks so much for everyone’s messages. They’ve really helped.

DH and I have had a good chat and I think we’re clear on next steps.

The very best of luck to those who said they were, or had been, in similar situations. I’ll be thinking of you.

If he needs care overnight he qualifies for residential care either through NHS or privately if you have health insurance.