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He's just going to get worse isn't he?

(26 Posts)
tiredworrier Sun 02-Apr-17 07:49:07

Me and my Dh were together 6 years before getting married. During that time he was very healthy and active and a generally very lovely and likeable man. We got married and 6 months later had a bad psychotic episode. He was sectioned and now on medication to treat schizophrenia. 2 years on and I just can't see no light at the end of the tunnel. He's so withdrawn and so different to the man I married. It's such a sad situation that I can only see getting worse. We planned to have children but I'm too afraid to incase they will inherit his illness. Does anyone have any positive outcomes of schizophrenia?
Thanks

NolongerAnxiousCarer Sun 02-Apr-17 09:53:23

Hi,

My DH also suffers from episodes of psychosis although he does not have a diagnosis of schizophrenia so far. Looking back we believe DHs symptoms started in his late teens, but it wasn't picked up until he had a crisis in his late 20s, 4 years ago. For us diagnosis and treatment/medication has made a huge improvement to our lives. Part of this is because the paranoia and hallucinations (he always believed that it was neighbours, collegues or passers by saying unpleasant things to/about him) made life very unstable. He couldn't hold down a job, contantly insisted on moving house and could be unpredictable and volitile. Since starting meds and working with his CPN on lomg term management strategies life has changed for the better. It takes a long time to recover from an episode in our experience 2-3 years to to recover from the first recognised one, which has been the worst in terms of delusions. DH sleeps a lot when on the high dose of meds, he doesn't often have the energy to go out and do things, but he is now able to hold down a job. He managed for a long time on a low dose of meds which left him much less drowsy and he was able to lead a pretty normal life. Then about a year ago his psychiatrist stopped his meds and he had another episode, which we are recovering from at the moment. He stopped work for a while and is currently working part time and hoping to gradually increase his hours. He told me last week that he finally feels that he is starting to climb out of the pit. DH and I want children too and his MH team are very supportive of this. Obviously we have considered the genetic risk as well as the impact of any furthur episodes on kids. In the end we have decided we still want to have kids. DH has a relative who also has episodes of psychosis. He is married with happy healthy kids and is a great Dad.

The thing that helped me understand psychosis better than anything has been watching professor Elyn Saks on utube. She is a proffesor of psychology, psychiatry and law in the USA and also has schizophrenia. I am currently reading her autobiography. It is very honest and not an easy read as her story resonates strongly with my experiences with DH. It does though give a good insight into what its like to experience psychosis and also what it has been possible for her to achieve despite her diagnosis of schizophrenia with the right treatment and support.

DH and I are still finding our feet with it to be honest, learning to manage it seems to be something that takes years. We are lucky that we are under an amazing early intervention in psychosis team, who support both of us well. One of the main focuses has been on stress management as stress is generally a triggering factor.

Is your DH stable on his current meds? Is there any room for manuvere on the dosage? My DH definately has more energy and get up and go on a low dose and luckily his symptoms seem to be controlled on this too.

I know when DH was first diagnoses I asked myself a lot of tough questions about our relationship. I was alocated a CPN from his team to support me, which was really helpful. Do you have any support for you? I've compromised in the end for us its worth giving up some of the more active side of our life together to have him well and have stability in our life. If I want to go out and do things I still do, just sometimes on my own and then come home and cuddle up on the sofa and watch a film with him.

Feel free to PM me any time.

NolongerAnxiousCarer Sun 02-Apr-17 10:16:14

And in answer to your origional question, if they can find the right combination of meds that works for him and the right support things could still get better rather than worse or at least stabilise.

Theres a bit in Elyn Saks book where she is told her diagnosis and that she will never be able to hold down a job let alone finish her law degree despite completing a previous degree at oxford whilst undergoing treatment for psychosis. The hospital even contacted her university and withdrew her from the course without he knowledge whilst she was in hospital. Yet once she found the right support she qualified as a lawyer, went on to teach law and become an eminent proffesor specialising in mental health law. There is hope. Not everyone is going to be a law proffessor, but lets face it most of us wouldn't be able to do that anyway even without a schizophrenia diagnosis!

tiredworrier Sun 02-Apr-17 14:24:04

Hi anxious,
I'm so sorry to hear you are going through this too. In some ways it is comforting to know we are not the only ones living with this illness as sometimes , although it sounds silly, that's how I feel. Im glad to hear you and your Dh are living well and have medication that suits him. Like you say stress plays a big part and my Dh struggles very much when he is stressed. It's hard for me though as I never know what is going to make him stressed and although I help him to avoid some things, there always seems to be something else crop up which stresses him and causes him to withdraw and become ill again. Sometimes I feel like I have made him worse as this has all happened since we have been married. I try my hardest to help him but it's so difficult as I can't see into the future and stop anything that could trigger his illness. It makes me sick with worry that one day he will commit suicide too. He hasn't said he's suicidal but to be honest last time he had a psychotic attack anything could have happened.

NolongerAnxiousCarer Sun 02-Apr-17 19:07:30

It can be a very isolating illness, partucularly with the ammount of stigma attached to it. Is your DH under an early intervention in psychosis team or cmht? My DH is under an early intervention team, who are amazing. Their main aim is to help is to identify triggers and they work with DH on self management stratagies. They used to run a friends and family group which was helpful, but I was the only partner there everyone else were parents, I often find the same on forums online, so I know what you mean about feeling its just you. DHs relative suffers with psychosis too and so we have him and his wife as some support, but I don't know his wife well so feel a bit awkward putting too much on her, especially as she is busy with her kids. Do your DHs team run any support groups? Ours used to do education about psychosis as part of the group too, but it got cut due to funding.

When my DH got really poorly the first time we seperated for a few months. During that time I met with a CPN from his team regularly to help me get my head arround things which helped a lot. He was very poorly with a lot of psychotic thoughts at that point. I set some boundries in my head about what I could live with and what I couldn't:
1. That he needed to stop believing that I was/had harmed him and his family members.
2. That he needed to engage with the MH team fully.
3. That he needed to take responsibility for self managing his condition as much as possible.
I figured if he could do those things then we had a chance as a couple.

There are always going to be stresses in life, you can't protect him from that. He needs to find ways to manage his stress, is that something that his CPN is working on with him? DHs CPN explains it like a bucket, when the stress starts overflowing then the symptoms start. So he needs to find ways to release stress which he explains as putting holes in the bucket. For DH I think a big part of my role is providing stability and familiarity at home. And listening when he is stressed, talking it through with him.

You've been together 6 years so I doubt you are the cause, its most probably coincidence. How old is your DH? Age plays a part in psychosis I think. I've been with my DH 10 years now, looking back psychosis has been in the background that whole time although we didn't recognise it and neither did the professionals we asked for help. It was only in his late 20s that he got really poorly with obvious psychotic dellusions that he finally got a diagnosis and help.

Have you ever asked your DH what he feels you can do to help? You can't see into the future, you can't protect him from everything. Trying is likely to make you ill yourself. What you can do is help him cope when the difficult things do happen. I wonder if this is something his MH team can help you with? DHs team have been working with both of us and have now refered us for family therapy together to help us to work through how his illness impacts on both of us and our relationship. I wonder if something like this is an option for you?

I used to worry about suicide with DH too, and he has made a number of attempts over the years. I have come to realise that I can't stop it. I know that I do everything I can to support him and if it happens it won't be my fault. If it happened I would be devistated obviously, but in a way I think I've become somewhat numb to the possibility. I also trust DHs CPN implicitly and feel able to hand a lot of the responsibility over to him even when DH is really poorly.

The most important thing that we can do to support our DHs is to look after ourselves. If we go under we can't support them at all, unfortunately I speak from experience. I've been quite ill the last 6 months and the tables have turned with DH looking after me. I'm really glad we have had support from his MH team for both of us. What things do you do for you, to keep yourself well and put holes in your own stress bucket?

UnbornMortificado Sun 02-Apr-17 19:12:19

My DH has paranoid schizophrenia, I knew from the start as we met in hospital. He's been stable two years now. I think the right medication can make a massive difference he is on 25mg aripiprizole (sp) which is a higher dose but seems to work well for him.

Has he a cpn or MH worker involved? I sympathise it's an incredibly challenging condition sometimes flowers

Celegans Sun 02-Apr-17 19:41:22

My OH of 12 years has schizophrenia. We were young when we met, it was about 3 or 4 years into the relationship before he was first admitted to hospital.

We will not be having children because of diagnosis.

It's really hard, and yeah I can't see any light at the end of any tunnel ever. I just appreciate the times he is well enough to not be in hospital.

I work full time and sometimes I do get really jealous of other people who have partners who shoulder half the responsibilities of life with them. I feel like I am doing everything on my own really.

But you can't help who you fall in love with and I can't imagine sharing the fun parts of life with anyone else.

UnbornMortificado Sun 02-Apr-17 19:58:47

Just as an aside the risk of passing schizophrenia on is about 6% (according to the last research)

I get the worry I have bi-polar, my mam and gran depression and my grans mam was put in bedlam with probable bi-polar. My mam has 4 DC and I'm the only one with MH issues out of 3 girls and one boy.

NolongerAnxiousCarer Sun 02-Apr-17 20:26:59

Mortificardo for those, that medication works well for, the difference is definately amazing. For DH when the meds are right its like I have all the best bits of him, without the challenges of the psychosis. DHs on 15mg olanzapine at the moment, but managed well on 5mg for a long time, which I think was the optimum of control of symptoms v side effects, hopefully he will get back to that place again.

celegans I also work full time and get what you mean. Theres time when DH struggles with his own self care, things like remembering to wash or eat, let alone share the cooking, cleaning etc. The main pressure I feel is financial, when DH is poorly we can sudenly drop to one wage without warning. Last year I developed PTSD and was quite poorly myself, which turned our relationship on its head as I was the one needing looking after. DH found that really tough, but got through it with support from his CPN and I feel like its left us feeling a bit more equal in supporting each other. I also completel get what you mean when you say you can't imagine sharing the fun parts of life with anyone else smile

tired thanks for starting this post, I'm feeling less alone too.

NolongerAnxiousCarer Sun 02-Apr-17 20:33:33

Mortificardo thats comforting to know the stats, thank you. DH has one relative with schizophrenia and another with psychosis, so its definately been on my mind. I figure though that as parents we will be in a good place to pick anything up early and get the right support if it does happen. My biggest worry is more to do with how the illness itself could impact on kids, having developed PTSD myself in relation to the last episode. Its something I'm still not entirely comfortable with despite lots of reassurance from his CPNs.

UnbornMortificado Sun 02-Apr-17 20:41:29

I used to think antipsychotics were easier then AD's to get the dose right till I starting working in the field.

It did take 6 years and three hospital stays to get the right medication but I've come to realise DH is "lucky"

Carer it's very hard caring for others when suffering oneself.

The way I saw it was (I'm PG now) that it's 1/10 people will suffer from MH problems so statistically any child who has a parent with a disorder has more chance of developing a random problem then that disorder.

That makes sense in my head hopefully it will typed.

tiredworrier Sun 02-Apr-17 20:48:40

Thank you all for your responses. We currently have no outside help as when my Dh was discharged from hospital he was given a prescription and sent on his way. I'm not sure how I would get any help. Should I talk to my doctor ?

UnbornMortificado Sun 02-Apr-17 20:52:22

In my area a GP can refer patients to the mental health team but this seems to vary area to area.

It could be massively helpful as a psychiatrist will know more about the condition then a GP.

NolongerAnxiousCarer Sun 02-Apr-17 20:54:08

Mortificardo I like your thinking. I'm desperately broody and DH is pretty broody himself. We used to look after our nieces a lot when they were little and loved having them arround so much. Now they are bigger they have cooler places to be lol. I know DH is brill with kids, I just can't forget how scary DHs last psychotic episode was for me, and I wouldn't have wanted to have kids with us during it. I would have had to take them away from it and leave DH to cope the best he could without me and that scares me too. Its an issue I want to bring up with the CPNs when we all meet together again.

IllMetByMoonlight Sun 02-Apr-17 22:04:39

Hm. So difficult. I really feel for you. My DP has a diagnosis of GDA but has also suffered psychotic delusions, two particularly significant episodes. They have occurred at times of stress (which is a major trigger for his anxiety anyway), lasted for ages (in as much as he becomes convinced something has happened a certain way (an example might be his tax return going missing in the post and HMI pursuing him, or thinking he is suspected of shoplifting in a local shop, so too ashamed to go there), which is the psychotic element, and then spends months living as if it really happened, trying to avoid unpleasant consequences of the thing that never happened. We do have DCs, and his first episode occurred a few months after DC1 was born, when he was just getting over my traumatic labour and was himself delirious with sleep deprivation.
The parenting journey has often been lonely, and I have done much of our parenting alone. He is a beautiful man, now as he was before he became ill, but I have learned that I will never be able to rely on him or plan far ahead, as we don't tend to know where he'll be at from one day / week / month to the next. To begin with, I was optimistic that we would get back on track with support and medication (DC2 was conceived at such an upbeat time), but these days, seven years down the line, I am resigned to ours being a journey of maintaining and managing his MH. We have created a life where as little as possible actually depends on DP, apart from his salary and a few school pick-ups and drops, where I keep day to day life ticking over and he contributes as much as he is able. For the last couple of months it's been great, he has been really well, working with a good therapist and not had any major stressors. But boy, in winter especially, we sometimes have months of this ghost wandering the house, or spending days in bed, too worried and anxious to get up. The impact on our family is undeniable, his last psychotic episode a few years ago culminated in a suicide attempt and left me with PTSD. Although we are very careful around the DCs, and have strategies in place to shield them from DP's anxiety, while also talking as openly as we can in an age appropriate way about it when necessary, I know that they are extra alert to how he appears to be feeling and know that daddy needs to spend quite a lot of time quietly in his room. We have been lucky in as much as we've been able to work flexibly in reasonably remunerated professions in order to make our family life as 'spacious' and stress-free as we can, but had I known before we had children what our life would be like, including the crippling guilt he feels for being less than the 'perfect' dad he'd love to be, I might have thought twice. I really wish you both lots of strength and courage (and humour!) as you move on together flowers

Celegans Sun 02-Apr-17 22:44:24

NolongerAnxiousCarer yes the financial pressure wears me down as well.

The children issue. My OH has a family history of mental illness as well.

I just could not knowingly bring a child into a situation that I struggle so much to cope with. Last time he was in hospital I was having panic attacks and waking up in the middle of the night shaking. What would be happening to any children then?

I think any child would be affected no matter how much we tried to shield them.

Adding to that the increased chance of them suffering from a mental illness, and what if something happened to me while they were still young?

I just would want the best chance for any children I was lucky enough to have. The situation we have is not it by a long way and realistically it is not going to change. As sad as that is.

Stress and schizophrenia do not go well together and from what I can gather from all my friends and family who have children if can be quite stressful!

tiredworrier Mon 03-Apr-17 07:38:40

Hi everyone.
Last night Dh said that its my fault his in this state as I suggested we went to the cinema last week and apparently that was too stressful for him to do. At the time he said he would go so I just assumed he was feeling ok to. Now I wish we hadn't gone but like I said before I can't see into the future and stop all his stresses. It's making me question if I want to stay living with him as I try my best to stop him being stressed but the past few times it's happened he's blamed me for it

Itisnoteasybeingdifferent Mon 03-Apr-17 08:31:41

In our household, I am the fruitcake. Manic depression. I count myself lucky compard to those of you who deal with psychosis and schizophrenia. However it was not recognised for most of my adult life,(60 this year) and it made a airplane crash of my career.

We don't have children, but for other reasons, There is MS in both sides of my family and my lovely wife of 33 years has diabets (her grqndfather also had it and died of it). We decided not to start a family for very similar reasons to Celegans after learning about the MS.

We have been fortunate in that neither of us got very broody, except when a friend was pregnant and she was reeking of pheromones. Sometimes it does hurt a bit that we don't have children and we do worry for our future. There is no one to look after us and we don't know what the future holds.

But life is still good. I have finally got my manic depressive behaviour under control with meds. My wife is still very healthy with no diabetic complications that would have occured is she had carried children.

Itisnoteasybeingdifferent Mon 03-Apr-17 08:35:54

Tired,
Reading thqt your DH nust has a supply of meds and is left to gt on with it is not acceptable. You need more help, especially at this stage of your life.

Please ask for some and stamp your feet if none is easily forthcoming.

Celegans Mon 03-Apr-17 17:59:11

Hi Tired my OH has a lot of help and support from our local community mental health team (cmht). Once a month he sees his care coordinator who will bring a doctor if he needs to see one regarding his mental health. He also sees a support worker once a week.

I can also call them if I need support or advice or if I am concerned about him.

All this support was put in place after one of his hospital admissions. I would try and speak to your gp or maybe the ward he was last admitted to?

I can't imagine trying to survive without the support we have. I don't think I would be able to work without it.

As itisnoteasybeingdiffetent says you may have to kick up a fuss to get it. We must have just been very lucky. He was very though, in hospital for months at a time.

Regarding him directing his frustration at you, I find it really hard to distinguish shitty behaviour from something he just can't help. There's no easy answer it's just really bloody hard.

NolongerAnxiousCarer Mon 03-Apr-17 18:53:47

moonlight thanks for the insight. I'm so conflicted at the moment. DH had had a good 3 years and we were ttc, then this most recent episode suddenly turned everything on its head. I can't imagine my future without kids and I can't imagine it without DH either. I know a couple of lovely well adjusted adults whos mothrs had schizophrenia. They have good lives now, but I remember one saying that there was always a higher than average background stress level at home even when his Mum was well as they didn't know when the next episode would be. celegans I completely get where you are coming from too. Its obviously a decision each couple has to make based on their own circumstances, but its not an easy one.

Tired Im absolutely shocked that your DH was discharged from hospital with no support! Was the schizophrenia diagnosis this admission? If so thats even more shocking. Is he under a psychiatrist? It sounds like your DH needs to speak to his GP about a community mental health team referal. If it is a new diagnosis and he's under 35 then I'd advise him to push for a referal to an early intervention in psychosis team. The whole point of the early intervention team is to help you both adjust to the diagnosis and support him in learning how to manage his condition to reduce the likelyhood of relapse. The evidence shows that the earlier people get support with psychosis the better their long term outcomes. I would expect him to have a CPN (community psychiatric nurse ) at the very least.

Also, unless you frog marched him to the cinema at gunpoint, it is not your fault. He has an unpleasant illness, but he is still an adult and he needs to take responsibility for managing his own stress. To be honest it sounds like he needs support with this, which is where the CPN comes it. DHs MH team even support people with things like cinema trips, days out to the sea side, etc. And run groups for various sports too. Theres even OTs (occupational therapists) who's job is to help people get back to doing normal activities like this. DHs CPN used to take him out for coffee at a local cafe in the early days.

NolongerAnxiousCarer Mon 03-Apr-17 19:08:47

www.nice.org.uk/guidance/cg178

If the links worked that should give you the NICE (national institute for clinical excellance) guidelines. This recommends what care should be provided to your DH and what support should be offered to you. Personally Iwould have a read and then kick up a stink to get the susupport you should both be getting.

UnbornMortificado Tue 04-Apr-17 12:19:15

NoLonger I'm quite lucky I have supportive parents close by. If me (or DH) suffered a setback they would be on hand to help.

I'm actually PG now my DD's have been over two days while I've been having a cervical stitch. My DH might have his problems (as have I) but he has a hundred good qualities as well.

The DC's I have (girls of 4 and 11) I had before my diagnosis are happy and loved. My older DD has in the past had counselling to help with understanding the hospital stays etc. School know as well and would be onboard if she needed any help.

I read stories about neglect and abuse and downright shitty parenting and that's not me. I won't lie and say it's ideal but both my DD's are happy and do have a decent childhood.

NolongerAnxiousCarer Tue 04-Apr-17 19:00:15

Mortificardo unfortunately we don't have any family support locally, which does make things harder. I really believe that we will be good parents. I know fab parents with both bipolar and psychosis, which is reassuring too. I'm feeling quite positive tonight as we have just had a joint session with our respective CPNs who are very positive about us having kids and are planning to work with us and support us arround becoming parents and staying well. When we discuss it with the CPNs I always come away feeling positive about having kids. And positive about the future in general.

Tired I really hope your DH can get a CPN sorted, I really don't want to think where we would be without DHs wonderful MH team, I feel so much lighter after meeting with them today.

UnbornMortificado Tue 04-Apr-17 19:07:48

Fwiw NoLonger I've read a few of your replies on the MH board and I think you would make a brilliant mam.

Tired I agree your DP should have some help in place, my DH still has a CPN because of his condition despite the pro-longed stability.

It always shocks me on here how little support is in some areas for MH.

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