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bre78
Casual Contributor

My wife has Schizophrenia

Hi, I'm new to the forum. In short, my wife was diagnosed with Schizophrenia last year. We are in our mid thirties with two young children aged 8 and 4. She just has just recently relapsed again and spent around 3 weeks in hospital. She has been home for 2 days and seems to be no better than when she was admitted. She's very delusional and paranoid, yet seems to be able to function, at and times cognitive and aware that she has an illness.

I have struggled to accept that she has this illness and I still think I can make her see reason, much to my own ongoing disappointment. She is very intelligent, having graduated with honours from Uni as a teacher, majoring in psychology. She is a beautiful kindhearted woman and loving mother who is also a well respected contributing member of our local community. It breaks my heart to see this disease taking her quality of life away from her. She no longer works and now has withdrawn from her community groups (eg. vice president P+C, scout leader, playgroup president, football club treasurer etc), as well as her social groups. She has no history of alcohol or drug abuse. Her diagnosis is genetic (mother).

I am fustrated by the public mental health system that seems to lag most other proffessions. I struggle to accept the "let's see if this works" approach to medication (she has been on so many I have lost count) which inevitably ends up being a case of maximising the dosage to drown the symptons. There is no (from what I can tell) attempt to ascertain the cause of her illness (I'm not referring to a generic collective etiology but an individual eitiology) nor does there seem to be any evolvement in the understanding of her particular causes to psychosis ie. nature and nurture. No extended education in identifying early warning signs or preventative care that we can apply to minimise the risks associated with relapse. Imagine if an aircraft technician were to apply the same logic to his craftwork?

"Well we don't know what caused the engine malfunction, it's happened before so it's no surprise that it's happening again. I'm sorry but once you have engine malfucntion, there's nothing you can do. It's complex and frankly we can't possibly investigate, measure and analyse every component of the engine, so instead we'll house the engine for a few weeks and let it rest where we'll inject enough lubricant and fairy dust into and hopefully when it goes back on it'll be good to go long enough to get from A to B. If not - bring it back and we'll try some other recently patented fairy dust."

I know it's a little bit of a cynical pragmatic mechanical analogy applied to a complex cognitive arena, but the priciples of applied professionalism should stand. History, survey, analysis, report, repair, maintain, monitor (data collection), prevent. Not a template but an individual investigation and case study.

Am I being unreasonable?

I'm also finding it difficult to cope with the stress. I'm back at work next week ( I have two jobs- one full time, one part time) and with the increasing demands in a market that is extremely competitive, I don't know how I'm going to be able to perform well enough to maintain my position.

Lastly, is their any Dad's out there in the same position as me? It would be great to hear from you or if there are any support groups I could attend that you may be aware of please let me know.

I feel like I'm trying to do this on my own and it's wearing me down and it's having an effecton my children.

Cheers.

Brad.

26 REPLIES 26

Re: My wife has Schizophrenia

Hi Bre78,

You've got a lot on your plate. Caring for two children, and your wife, not to mention trying to balance your work demands as well. It's no wonder that you're feeling stessed. I'm glad that you're seeking support on the Forums. Smiley Happy

Seems like the treatment your wife is receiving at the moment is quite reactionary. I can see why you are feeling frustrated. There's nothing unreasonable about wanting a holistic approach, which includes psycho-education to learn about stressors, and preventative measuers. Have you had a chance to meet with her mental health team to discuss your concerns?

It can take some time to find the right meds and the right dose, and depending on what's going on (the severity of the symptoms), treatment can focus on managing the symptoms before they can start adjusting doses. Though I'm certainly no doctor so I encourage you to ask your wife's doctors for information. This can be very challenging for both you and your wife so give it some time. 

For support groups, I can't think of any in particular for dads, however, GROW  runs support groups and they may be able to point you in the right direction. Also ARAFMI is an organisation that provides support specifically to people who care for others with a MI. One of our  moderators @Hobbit works there, and may be able to provide you with information. Speaking of which, our Topic Tuesday in on this week, and Hobbit is our speaker on that night. So if you got questions that might be a good chance to 'drop by'. 

 

Anyone else got any advice for bre78?

 @Alessandra1992 know of any groups?

@kristin @BatGuano any thoughts from a consumers perspective?

@PeppiPatty any suggestions from a carer's point a view?

Re: My wife has Schizophrenia

Dear bre78,

thank you for the message.

can sketch out the main major issues that developed in my last marriage.
I also am a proud consumer which means....someone who accessed mental health agencies in the past and am presently.

My ex husbands story is on one of the carers segments called, I think about a son who is newly diagnosed.
the person who I really admire reading and going to his forums is someone called Peter Bullimore.

when my son was describing to me how he hears voices I said...Oh. does this sound like normal talk?
He said no. I say, oh....do you think you need to do something about it..
He said yes. I have written about my son later in this message.

How is your work
Is this something that you need to do, two jobs. If it is, maybe you can contact an agency who has carers who come in who are also consumers and help out for the day. The carer who came in to see my husband made a very positive difference.

the story of my poor husband may be very relevant to you as he has an iq of160 and the hospitals were very competent of dealing with him like he was the same and the same as everyone and only they knew how to deal with him.

I cannot endorse this more. But to get a copy of the carers and loved ones rights written up for you is invaluable. I think if you contact the state parliment they can send you one. I wrote some time ago that I would find out and didn't. Any appointment that you have with hospitals and Doctors, Psychiatrists or ..... you take it and refer to it that you as a loved one and carer knows your wife better than they do. YOU know what makes her tick. YOU know her.

EXAmple of this is that when my oldest son developed psychosis, I flew over to visit him for a week. I asked him questions that I knew would help him. I also knew what would help him and under massive stress from other family members I got everyone to text him that they loved him one per fortnight or week. I knew what he needed. I knew he couldn't accept anything but informal texts that he was worth it. . the end result is that he managed to visit a psychiatrist once per fortnight and upped his work.

the massive pressure from my family was that I come from an academic family. some of them decided that they knew more than me because they had worked in this area.

Many people struggling times of mental ill health smoke cigarettes. this is why......the expected life expectancy is lower for people suffering times of mental ill health. Drugs and smoking. How can this affect your wife? Is she going to go to day centres? Just to be aware is good.

I'm a great believer of timetables. Many of my contributions both for personal help and advice writes of this.

hope this helps,
I. Really want to re read your letter a few times because you are very clever and committed.

Re: My wife has Schizophrenia

Hi CherryBomb,

Thanks very much for the reply and the helpful suggestions you have made. I guess I'm being a little impatient at times and perhaps quick to point the finger. I feel you're right in saying that it will take some time. I'm still not particularly comfortable with medication (she was prescribed another today in conjunction with her existing anti-psychotics) as I personally feel she would benefit greatly from deep CBT but has never for various reasons (mostly not wanting too) had the chance to receive therapy, despite having a history of extremely traumatic events. She has been given a referral for a good psychologist as part of her mental health plan and I am hoping that she takes it up.

I have had very brief meetings with both the team from the hospital and her private treating psychiatrist, but on all occasions my wife was present and I'm reluctant to discuss all my concerns in front of her out of sensitivity and fear of instilling mistrust.

Thank you for the support groups you have mentioned. I have dealt with ARAFMI briefly last time and I have been referred to YCOPMI as well but as yet I haven't been able to get anything off the ground. I'm sure it will just take some time to get the ball rolling in regards to the support groups.

 

Unfortunately I'll be working Tuesday night. Will I be able to download the feed afterwards?

Thanks again.

Re: My wife has Schizophrenia

Dear Brad,

I usually "hang out" on the lived experience forum, but am also a carer. What you are dealing with sounds massive. I really feel for you, your wife and children. That you are managing is amazing, though it probably mostly feels like hell on earth. Please try to take an occassional step back and see all that you (and even your wife in the midst of her illness) are getting right, and to give yourself a bit of self-care (be it a quiet cuppa or even, if you can stretch to it, an occassional relaxation massage). This can be a vital battery re-charge before wading into the next fray.

I'll be honest. I know a lot about my own illness (after multiple diagnoses over 35 years), far more than my gp. But I know relatively little about schizophrenia. One of my friends from high school has suffered from it since early twenties, but his was drug induced. We still keep in touch.

I also know what you mean about the mental health system here, and frankly the private one is not always better than the public, sometimes worse even. As science it often straight out amounts to BS. I think your analogy is rather apt, for all the limitations you have pointed out. 

You are not being unreasonable. Even where it is possible to be much more specifically diagnostic, say in treating entrenched infections, we continue to be treated by some medical "professionals" as if we are human petri dishes! It is not on, especially when so much more can be done. 

You sound like you are on the right track in asking about personal etiology, and triggers. Keep asking! You will eventually find someone who speaks your language and listens - unfortunately that usually takes too bloody long IMHO. (We have been talking a lot about that issue on the LE forum too. The MH not-so-merry-go-round.) In particular ask anyone in/near your area who has been a MH consumer, as they might offer the best pointers to genuinely helpful help (although it is not one size fits all).

I don't think you mentioned what state you are in. In Vic I know there have recently been changes which make triaging MH needs a bit better, and less of a painful ping-pong game. Being persistent in finding the right MH help is something I know about. I urge you to keep that stubbornness muscle strong in respect of finding appropriate help for your family. Sadly sometimes it is a journey that takes years. I say this not to discourage you but to be real about it. I truly hope this is not so in your case.

The stress must be huge, and the strain of worrying about your wife and the impact on your children. My suggestion there (as the parent of 3 kids aged 6 to 17) is to be both honest and reassuring with them, in language they can understand. They will know something's wrong anyway. They need to know both of you always love them (even if you seem stressed/cranky), mummy's very sick and needs help, daddy is doing his best to find help, if mum needs to go to hospital then tell them beforehand if possible.

 

I hope this is helpful and makes sense. Children who are unsure of what is going on are much harder to live with and tend to start acting out at home and school. Even though it will take investing energy you may feel you don't have, loving and reassuring your children as much as you can will pay huge dividends in the short and long term.

Another thought occurs re helping with the kids, it might feel rather hard to ask for. I think you would be eligible for some sort of family support with the kids from an organisation like Anglicare (again who will belocation dependent). In my experience they can be excellent; and certainly helped me and others I know when we were either on the brink, or in and out, of hospital. If you access this then be very clear (if you can) about what help you want/need. If you don't know just say so - lay the situation on the table and ask - what can they help with?

I truly wish I could be of more help specifically with your wife. About the only half-sensible advice I can offer is something I heard from another MI friend. Apparently one effective way of living with schizophrenia so it is not as debilitating is to learn which "voices" to listen to, rather than trying to stop them altogether. So ignoring the "bad" ones (or telling them to POQ) and listening to the "good" ones. I don't know how that works in practice, let alone whether it would apply with your wife. Also when she is well enough you might suggest she check out the LE forum.

I wish you courage, strength, and most importantly the help you all need. Please keep in touch.

Kind regards,

Kristin

 

Re: My wife has Schizophrenia

Hi bre78,

You sound so insightful. I can understand that you just want your wife to get well, and as you know, it's often not that easy. It can take time, finding the right meds, appropriate, doctors, therapists, and in all of this as well,  your wife's readiness to engage in treatment is very important too. You are doing a great job. 

Both Justanother46yr and Kristin raise some great points. Learning about hearing voices can be useful. Peter Bullimore could be a resource for you to look up. Also looking after yourself is so important. To Kristin's point, even if it is just for a brief moment, it can be really beneficial. 

In regards to Topic Tuesday, you will be able to access the conversation after the event, which you'll find under the 'Special Events' discussion topic. If you've got any questions you want answered feel free to let me know, I can pass them on say they get answered on Tuesday. 

CB

Re: My wife has Schizophrenia

Hi justanother47yr ,

Thanks for the reply. You have some great advice that I will be sure to follow up on in regards to carers and loved ones rights as well as carers agencies.

I totally agree that I know her better than anyone. I'm not a psychiatrist but my wife does not live with a psychiatrist - she lives with me and I have the advantage, like all carers, of trust of information and complete observation. Unfortunately as a carer we have an emotional investment with our loved ones which makes it a tricky playing field when responding to the multiple roles we need to play. A Dr. has no emotional contract with patient (at least in temporary hospitalisation, maybe not in a longterm therapeutic relationship) so impartiality towards the sufferer is utilised.

Referencing your own sons illness (sorry to hear), my wife doesn't hear voices. She has hullucinations and delusions and disrupted thought. I'm working slowly on how to help her with understanding what's real and what isn't, but just as I seem to make some minor ground she invents another way justifying the delusion.

In regards to the two jobs, yes one will probably have to go. My full time job pays the bills but my part time job is the one I love. Unfortunately it's the one that causes my wife stress (Army reserves!) as it requires me to go away from time to time so I more than likely will need to discharge.

My wife doesn't smoke or drink or drug or even drink coffee. She's pretty straight up in that sense so I think that's a major plus.

Thanks again for your input. Much appreciated.

Re: My wife has Schizophrenia

Hi Kristin,

Sorry I'm going to keep my reply short, but thank you so much for your reply. You have a very reassuring

message with some tangible advice that I will be sure to follow up on.

Thank you for speaking to me of the children. They are very dear to me and at times I find it extremely hard to be the constant balanced switched on father I desire to be as opposed to the sometimes cranky, imperfect, maybe I'm not as strong as I think I am, father that I am in reality.

Mindfullness has played a large part of late, although I'm conscious that no man is an island and I need to bring in other hands to tend to the hidden emotions of my children that are surely fettering away at their hearts and minds. The forum between myself and my children is always open, however I may not convey that message across loud and clear at all times, or perhaps there are just some things they don't want to discuss with dad for fear that I may judge them. I want to allow them the chance to voice their concerns and feelings and some of that may be necessary to done via other avenues.

I'm in NSW and without knowing the MH system in Vic (I know it a little in SA), I'm assuming? there isn't a lot of difference on a grand scale, however as you say, it may be necessary to localise the niche pathway that works for both my wife and us as a family.

Thanks again for your help. I appreciate it greatly.

Re: My wife has Schizophrenia

Groups you may be interested in for yourself would be carers groups such as those run by MIF or Arafmi or Grow Better Together. Groups that your wife may want to try are Voices groups, google voicesvic for details. Held all over Victoria.. Or groups that are for anyone identifying with mental health or emotional challenges such as Grow.
There are also some community mental health services that run peer groups such as PeerZone, Pathways to Recovery, Partners in Recovery etc. I think your wife would need a referral for community mental health programs or possibly live in the area where one is being run.
On the other hand, another approach might be to ring local community centre or neighbourhood house and find out what classes and low fee childcare is available. Sometimes as consumers we don't want to identify with our mental health, but learning a new skill or returning to an old one can be really rewarding.
Tricky at the moment but get some brochures, and see how you go..
Sounds as though you have a plan to drop your part-time passion, and I would like to affirm you for putting your wife and children first. You can always return to the reserves at a later date..
Take care..

Re: My wife has Schizophrenia

Dear Brad,

I must admit that I really sat up when I read your post from yesterday mentioning your wife has a history of multiple extreme traumas. That was what I sensed from what you had described earlier, but I didn't want to put words in your mouth. 

To be honest with you I think you might find CBT is not hugely helpful, it may help a little with functiioning perhaps. If I were in your shoes I'd be doggedly searching for a compassionate psych who's a trauma specialist. Trauma is cumulative unless adequate help is available to process it. This is something I do know something about. I have diagnoses of complex-PTSD and bi-polar.

I hope this might help.

Kind regards,

Kristin

 

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