DS is bipolar and it is ruining all of our lives

[notaflyingmonkey]

DS is 19, and was diagnosed roughly a year ago following some very manic episodes. He was on meds that controlled his condition for about a year, and then in Feb they stopped working.

Since Feb he has been put on different meds, and different doses of meds, and he is still manic.

He is exhausting to be around, as he had no filters.

We have had no real help from the NHS (covid takes all) and have been left to deal with him ourselves. It is fucking exhausting.

I feel sorry for him, of course. But I hate his condition and what it does to him. I worry constantly.

And I hate that we have been abandoned to deal with the condition on our own.

I just needed to vent.

When you say they are not working are you sure he's taking them?

Sending you a hug. X

Yes, Strawberry either myself or DH give them to him, and make sure he takes them.

Thanks for the hug.

As a mum of an Autistic teen my heart goes out to you. The relentlessness of need is overwhelming and exhausting. Is he your only DC?

Have you had/ requested a carers assessment from the local council?

Do you have a mental health support worker?

Has your DS applied for or got PIP?

Very personal questions, please feel free not to answer but these are my first thoughts on the steps to help.

He isn't my only DC, we have a NT DD. DS is also Autistic - so he has a double whammy.

The carers assessment happened for me a few weeks ago, but didn't have any outcomes.

DS was turned down for PIP when younger.

He has a mental health support worker who (I'm told due to Covid) phones him once a week to ask how he is. DS says fine. I have phoned them sometimes 5 or 6 times a day to beg for help, because he isn't actually fine, and it has got us nowhere.

Thanks for responding Ripple.

So sorry you are going through this. My mother suffers with bpd and I can only imagine how exhausted you must be. I couldn’t read and run. It sounds like his medication is not levelling his episodes as it should. I found over the last few years I’ve really had to push to get the medication re evaluated, but after truly nagging the psychiatrist at the doctors and the mental health nurse they can adjust or swap medications to minimise the manic episodes. My mums been level for two years straight with no episodes after 15 years. I’d truly recommend making contact with your child’s mental health team unfortunately you do have to be persistent but this can be massively helped. Wishing you all the best

Also, sorry I just re read and saw your already pleading for help, try sending emails detailing everything, as awful as it is to do, the more honest the details the better. I found this made things speed up slightly for us

Thanks for responding MrsBrew.

I think the main problem is that DS actually prefers to be manic, as he says it makes him feel good, and that being what I would deem stable is depressing for him.

I think the answer may lie in some form of specialist therapy for him, to help him understand that being manic is not safe.

When I first applied for DLA for my DS I was turned down and completely deflated by it. About a year later I read a report about 99% of online claims being rejected. I re-applied on paper with copy reports from all his specialists etc attached, followed the IPSEA guidance on how best to proceed and we got higher rate. At 16 we've now reapplied for PIP. I've seen similar said about first applications - something like an 80% rejection rate. Shocking stats, but saddly believable. Its so deflating I wonder how many people don't re-apply!

If you have it in you to re-apply it could well be worth it. The money make a big difference in being able to buy things that make life more bareable.

I know a little about bipoloar but an awful lot more about my sons Autism. One of the elements that its been really hard to get my head around and establish boundaries for, is that his need for routine and control becomes the whole families control and isolation.

As young adults the amount of control we can exert over our children, even with high mental health needs is challenging.

Whats in my control is me. I've taken years working out my needs and boundaries. Its been hard getting a clear picture of what I want and need. Then there has been the process of getting the help I (actually DS) needs.

In the knowledge that being a worried mum isn't something we can just turn off. What do you need to improve your life and enable you to be living not just existing though this?

I wonder from what you say if your son would be open to/ or if it would be appropriate for some Cognitive Behavioural Therapy (CBT). If a good therapist could explore with him the effect his level of mania has on his environment, those around him and his ability to live a full life. Maybe he could work with him to strike the balance and open him up to exploring the right meds combination to meet his needs.

With teen hormones still raging, for us mums, I think there is a bit of a natural rebelion against whatever we say and suggest. Offering control and appearing to step away to let your son explore his options (with a briefed trained professional) might help as a step towards his personal responsibility for management of his condition and your own boundaries.

Sorry you are going through this. I have a family member who has this and it is soul destroying. He lacks insight into his condition and thinks his diagnosis is a conspiracy. He has done and said some horrific things and the support we have found is non existant. He ( and we) have been abandoned. Then he gets sectioned. Then he is released with no follow up and it starts again. He refuses meds and scorns therapy or lifestyle changes. I have no answers, can offer a handhold and tell you that you are not alone x

Native it sounds a depressingly familiar situation.

I'm pretty sure that if it was another part of his body that he needed help with there would be follow up appointments until he is well. But Covid notwithstanding, I have been genuinely shocked by just how absolute the abandonment has been.

OP It is awful isn't it? Are you managing to look after yourself through this? I know that it tends to be all consuming and you actually forget who you are.
Support really is dreadful, and the backlash that Kate Middleton got when she did her speech about " reaching out and getting help" for MH issues illustrates this.
There is no continuity of care between agencies. Our community support never answered her phone...
It's really hard as you have to be persistent and get passed from pillar to post.
Would your DS comply with therapy? I think MH services were glad that my relative was difficult and lacked insight,as they could in effect " wash their hands" of him.

I haven't been looking after myself, it's fair to say. As a mum I was really beating myself up at how ill he is, and my mental and physical health deteriorated alongside his. There were some especially dark moments on my part.

DS says he is ready to try therapy again, and I have arranged an assessment appointment for him. We shall see.

I hold out zero hope that any help is heading our way.

DS further complicates an already complex MH situation by 'self medicating' with weed when he is manic. He says it helps him. It really doesn't. But it also gives the MH team a reason as to why they can't help him as anyone who admits to drug use gets passed to the drug treatment team, which consists of a phone call to DS once in a while with someone asking 'are you ok?' to which the answer could fall anywhere on a very broad spectrum of 'fine' to 'brilliant' or 'terrible' but it doesn't really matter what his response is, as nothing happens as a consequence.

As someone with bipolar, the only way your son will learn that being manic is destructive is for him to feel that destruction. To experience the consequences of his actions after being manic.

Even so feeling the euphoria that comes with mania is the best feeling ever, after being depressed. You feel on top of the world, like you can do or be anything you want.

How does your son’s mania manifest in destruction of his life? Or are you cushioning him from experiencing the consequences?

Are you sure he only smokes weed when manic? Or does he become more open, lack a filter stop hiding his smoking from you when manic, as he feels free & liberated in life?

It does strike me as unusual he would only smoke when manic to “make himself feel better” when he says he enjoys feeling Manic.

You may not feel it helps him but how does it hinder him? How does he say marijuana effects him?

drug use & self medicating is extremely common with people who have bipolar. So it is not acceptable for this mental health team to fob your son off to drug services, over smoking weed periodically when manic. If he has already been diagnosed with bipolar they should not be giving you the runaround this way. I am not sure how to advise you, just keep being his advocate & pushing for them to take it seriously.

I too am terrible at telling doctors & authorities I’m fine, I’m great when the world is literally crumbling.

Thank you for your insight Viking.

He says he doesn't smoke when he is depressed as it makes him feel bad. But when he is manic there are no filters.

He told his MH team that he drinks alcohol 3 or 4 times a day, each day. Which they also go concerned about. God only knows why he said that because he doesn't drink alcohol at all. I have pointed out to them that they really shouldn't just go on what he tells them, because when he is manic he will say anything to anyone, but as he is 19 he is an adult and therefore they consider that he can speak for himself.

I have found that so many of the MH professionals I've come across work in silos, and are quick to dismiss my concerns about his behaviour as being drug related. I have said many a time through gritted teeth that this can't be the first MH patient they have met who self medicates.

I am starting to wonder if DS is a lower priority for them because they see that we are coping with him at home. If 'coping' includes heart palpitations and dangerously high blood pressure.

I hate to say this to you but you need to tell them you are at the end of your tether and if you don't get any help you are going to through your DS out because you are no longer able to cope with him. Until you do this they will just leave you to cope as best you can.

I'm pretty sure that if it was another part of his body that he needed help with there would be follow up appointments until he is well. But Covid notwithstanding, I have been genuinely shocked by just how absolute the abandonment has been.

Sadly that's the "recovery model" for you. A convenient way to transfer the responsibility and consequences for lack of resources onto patients. If a patient doesn't "recover" after their time limited intervention then that's now the patient's fault. Nobody receives lifelong are anymore even if they have long term needs "because we follow the recovery model and therefore long term support would be inappropriate".

It's ideological decision-making. Some people will recover with short term interventions but some people like with physical health need long term support to achieve health and maintain it. Nobody complains about diabetic patients being " too dependent" or "lacking responsibility" for needing ongoing lifelong healthcare and support to stay well. Nobody argues that care should be denied them. But the prejudices around mental illness still infect the approach taken today; at its core it blames people for their illness and treats them accordingly.

Which means at best repeated short term interventions with no big picture thinking or consistency of relationships or understanding of your son. That fails to help people and causes harm of its own.

And yes, if he's not being picked up by the police as a danger to himself / others and not triggering any concern for being very high risk then that will be viewed as "coping" and the limited resources go elsewhere.

Even when they invoke ethics, if you read their ethical guidelines it tells them to consider limited resources and ration the care they provide accordingly.

So people like you, your son and your family are failed.

I'm sorry. It's shit.

Hi i am sorry to hear your having a hard time. My DH has bipolar, is your son bipolar1 or 2? It can make a huge difference. What meds does he take? My DH takes very lsrge doses of mood stableiser and very low doses of antidepressants- but we had to fight tooth and nail for that. In the US theres been alot of research done into anti ds actually making BPD worse and most clinics etc only treat using mood stableiser which have a natural anti d in anyway. My DH was very unstable for over 20 years until we got this change in his meds and now he hasnt had a episode in 3 years.itswell worth looking into as NHS loves dishing out anti ds but not mood stablisers as they have to prescribed by a psych team member. I hope you get the help you need.

NHS mental health services are not worth the paper they are written on.
No support with managing stuff day to day and throw drugs to try and help, which, as happened to me, have serious side effects that no one dealing with your problems identify.
If you can afford it, I would recommend trying to see a private pysch. It's around three hundred pounds for the first appt. So expensive but if you can do it, please do.
Sucks majorly right?

Sorry to hear you're all having such a tough time

Is he care co-ordinated? Does he have a care plan, which his mental health team should be specifically helping him with? Sounds like he is being failed by the team if he is, our community mental health team are still doing regular telephone sessions with their patients and outpatient appointments with psychiatrist, and have been throughout the height of covid. I agree with previous posters, assuming he is care co-ordinated you need to have a serious conversation with them about how your are struggling and give them your perspective on his MH at present.

Has he had any previous admissions? Is he putting himself or anyone else in immediate risk of harm with his current behaviour?

I'm also surprised they are talking about referrals for the drug team and not being able to work with him, unless he is smoking a considerable amount of weed, it sounds like palming him off.

OP yes you have sussed it. As long as you are seen to be " coping", even if you are on your knees then they will ignore you, and resources will go to someone else. Has he ever been admitted to hospital? The only time we have had help is when he has gone into a full blown psychotic episode with severe symptoms and they've had no choice..

I have bi polar and I know MH services have been cut but I have always received a decent level of care.

When you say he is manic what does he actually do? You don’t have to reveal exactly here but if it’s all kept in the home and not dangerous as such then it may not be bad enough for a stronger intervention. He may not be truthful and reveal what is fully going on in his head to his care professionals.

As someone with bipolar, the only way your son will learn that being manic is destructive is for him to feel that destruction. To experience the consequences of his actions after being manic.

I can very much relate to this, when I was manic I spend all our money on a day trip out, that would be all the bill money, food money and rent.

Also just to warn you, I did get help and it was fantastic, but I only got it when I went to my doctor and informed them that I was dreaming of how to kill myself with my detail plan and although I didn't feel like I could go through with it, it was in my thoughts all the time.

It is very much unless you are standing in A&E with your wrists slashed the help is not there for so many people

Just on the off chance...

Bipolar is often comorbid with borderline personality disorder. Could that be the case here?

I have no exp with bipolar but know someone who was borderline and their moods changed constantly on the stop of a hat (as opposed to it being a few weeks manic and then a few depressed ect).

*drop of a hat
(You never knew what would set him off and felt constantly on edge around him)