Family and Caregiver Schizophrenia Discussion Forum

Noob help for a new partner


#1

Married my beautiful Sz husband 5 months ago. He’s having his first episode since we met; has been stable and functioning well in society although not working for the last 5+ years. Has amazing support from family and friends who all know he’s sz, but he has no insight, which makes treatment really hard. He’s so stable on Invega/Trinza that even I had my doubts, but in the last three months, he’s had symptoms leading to a full psychotic episode that caused him to be scheduled by his psych.

He’s now out of hospital on a CTO (community treatment order, Australia), and back home, and slowly coming back to himself. I didn’t anticipate how incredibly lonely it would be being his partner during these times. I really want to make it work, but his alcohol abuse & reluctance to talk about it, and primarily his inability to accept diagnosis leave me wondering what to do. Can I help with insight, over the long term? Anyone reading this who is Sz and has insight, is there anything your loved ones can to do help with insight?

He is so wonderful on Invega, and in Oz there is legal framework to help with compliance for 6mth - 4 or 5 year periods, but there is no long-term legal framework, and right now I’m really terrified that he will disappear into this dark world every few years. I can’t help but feel – and all his loved ones and psych think so too – that if he could just comply with meds, he’d be so much happier. His voices really disturb him, and his coping mechanisms disturb his close family – including me.

Is there anything I can do to help him see over the coming years / decades that he needs treatment? Or are we committed to this 4/5 year cycle of pain?


#2

Hi, welcome. I am so sorry you and your husband are going through this now.

I know you said your husband was doing very well for 5 years and only recently suffered a serious setback. This rings a familiar bell with me as a full time caregiver of my adult son who has schizophrenia. I know there is a big difference in dynamics between a mother/son and a husband/wife, but one thing might be similar with this illness and that is that my son does extremely well as long as his day to day life is very predictable and calm. He likes routine and sameness. When I plan something different for us, a trip somewhere or a large event I want to attend with him. I have to work him up to it well in advance and sometimes he starts to unravel (I believe due to stress) and even though he is very compliant on his medication and treatment, (thankfully) I can still see how any kind of stress-good or bad stress can get him unhinged and risk his stability.

I see stress as the enemy of schizophrenia. I have to really be careful with dramatic changes , sudden news and events. Having said that, even weddings can be a good kind of stress but still stress nevertheless.

Maybe it was a little unsettling for him in spite of the love and happiness marriage entails. There is no way (other than through critical observation) that you can really know what might stress him out because the stresses are not always the same things that normally stress people out. You may never see a “pattern” of decline every so 4/5 years or it may change and be either more often or even less often-there really isn’t a defined pattern per se. I think it is more situational and more about stress management and coping skills and the ill person to be able to remain relaxed in a changing environment,

The things that help my son in this way is we take long walks in nature everyday together and he gets a professional massage every month and he controls the remote in the house…lol…sounds silly as I type it but these simple things make him calm and happy. You may find key stress reducers for your husband as well and they aren’t a cure, by any means, but they help in the day to day,

I would advise that you get some support for yourself going forward because you will need it especially for times when you feel alone and unable to reach your husband effectively. I still receive counseling as a caregiver.

You will be a caregiver too whenever care giving is needed and you have to try to come from a place of strength and calm and your patience will likely be tested but other than trying to reason with him when he is in a more stable frame of mind (about getting future psychiatric treatment) you may have to just arm yourself with as much knowledge and support as you can in the mean time.

I am not sure if you have NAMI in Oz (I couldn’t find any online) but if you do I would look into it because it is a wealth of education and support for families of loved ones with mental illness.

I did find https://www.mifa.org.au/en/ which seems similar to NAMI and might be helpful to you. Also there is a book that is often suggested on this site that explains the condition of Anosognosia which is real condition whereby a patient does not recognize their own illness.

The book is by a Dr Amador and is called “I’m Not Sick, I Don’t Need Help”. It could shed light on what is going on with your husband. Again I am so sorry you both are going through all of this and I hope you find the support you need both on this site and where ever else it is available. My best to both of you.


#3

Welcome to this site. It is a great community of people who understand. I, too, feel the loneliness, as my daughter isolates from me 30 feet away in her room, when I am lonely for just a TV show or something together. It is best for me to just come here, and make tiny adjustments at home to improve life over time. There are so many good things I have done based on suggestions from here and from NAMI. I cannot really offer you any advice on helping someone achieve insight, as I have not been able to do that with my daughter. I would feel blessed if she was medicated, even with no insight. Good luck. Hugs.


#4

Insight is very often impossible for someone in the grips of the disease. I know that I only have insight when looking back on behavior once I am well.

The cycles are hard. I don’t have any real answers for you as someone who is SZA and has cycles. All I know is that I rely on my husband as the only person I trust fully. His loyalty to me even through my bad times amazes me. I really hope your husband can look back once he is better and shower you with the love you deserve for staying by him through this.

I second the suggestion for getting mental support for yourself. If you can’t afford help there is a free and fee based help chat called www.7cupsoftea.com where you can talk to a trained listener.


#5

Thank you Catherine for such a generous response. I think you’re quite likely right, that the wedding was a factor in this return of symptoms, and in future keeping stress levels under control will be key. I have come to a similar conclusion as you, that stress is the enemy. I’ve ordered a copy of Dr Amador’s book after seeing it recommended in these forums, thank you.

It’s really helpful hearing what has worked for you and your son. I’ll take all of your advice on board, and once again, thanks so much for your time and kindness.


#6

Thanks oldladyblue, it’s a great community and I’m really glad to have found it. It’s good to hear about your experience with your daughter, thanks for sharing – and I’m sorry you’re dealing with the same loneliness. Wishing you all the best.


#7

Zombiw Mombie, it’s kind of you to share from the perspective of someone with SZA, thank you. I do hope that when hubby is feeling better he might get some more insight, but I’d settle (very happily!) for just getting my lovely human back (which I think will happen). I’m about to make a booking with a therapaist, thanks for the suggestion of 7cupsoftea, that may also be a good option.

This forum is really wonderful – being able to speak to people with SZA is particularly special. Best wishes to you and your husband.


#8

Great thoughts shared here. There are no perfectly identifiable paths to meaningful recovery. Some of this is trial and error, or trial and tweaking it further. Did they change any med in the hospital or since discharge? Even on a med that works, there is no assurance there will be no relapse. The fact that you are close by is very helpful so you can watch for any sign of relapse and act on it quickly. If you have concerns now or later, talk with his doctor. Meds can be increased or changed. If needed, consider Clozapine, which has done quite well for a lot of persons with SZ.


#9

I looked at 7cups as I’d never heard of it before. Looks like a great support site. Thank you for mentioning it.


#10

You’re welcome 20202020 characters