Friends, Family & Carers Forum

[Anastasia]

Hi @maddison 

I'm glad my message helped you feel not so alone. Yes the stereotyping that goes on is frightening. I hope to one day be an advocate in some way to break the perception around schizophrenia and bi polar as it's enough for the person suffering and their families to deal with let alone people without any knowledge making judgement calls!!!! Plus it stops people talking about it for fear of judgement. Breaks my heart Every. Single. Day. I will do something. Just not now as my hands are full with my beautiful boy. 

On his notes from his discharged the dr writes

Not suicidal

Not homicidal

It took a lot for me to digest that the first time round.

Always here for you if you need to chat x 

[Carlachris]

Hi Maddison. I am going through word for word the same as you with my husband. I can only offer my friendship and a huge you ARE NOT ALONE. And hug.
I don't now how anymore to deal with the anger except to not buy into it. Somehow by reminding myself it's not him but the illness helps me to quietly walk away. Even if only into another room and if he follows me I ask to be left alone as I don't feel well. It kind of diffuses the anger.

Sometimes the anger takes over our entire life and swollows me up with it. There's nothing I can do except check in on him an hour or so later. I am so worn out at the moment with my husbands refusal to take his meds for nearly 2 yrs now I just don't know what to do but wait and see what happens. I am safe,  he is safe but we don't have a life anymore. CoV conspiracy internet especially FB has ruined his mind worse than ever and I just hope when we return to some sort of COVID normal here in Victoria I can get him back. Paranoia is especially hard to deal with in these strange months we are living. Hope is on the horizon. The weather is beautiful which helps me a lot. I hope you can find a way to take some time for yourself today. What a wonderful friend you are being there for your friend. 

[maddison]

Hi @Carlachris,

You have no idea what this means to me, but then again I'm sure you do.

You described the anger aspect perfectly. For me, that is probably the hardest part to navigate. As carers, spouses, friends, families we have become experts in peace keeping & developing strategies to avoid disharmony.  I commonly rely on 'change of subject' e.g. "what do you feel like for dinner tonight?" if I sense things are headed downward. I am also learning to keep sensitive subjects concise, & avoid 'dwelling' on anything. Its important to me that I have a voice, but once I have said my part, I disengage. Another tactic that is sometimes useful is "explaining the obvious", without nagging or patronising. E.g. You need to take your medication because you have been diagnosed with a serious medical condition that requires medication.

Having said all that, he is still refusing to go back on meds, and I still endure days where the anger has been so heavy, it has taken parts of me. 

Your husband is also very lucky to have you. At times it feels very thank less, & my friend can act as though i was put on this earth to be his servant. I think this is part of the illness, & not having the self awareness to see that he is mistreating me. Yesterday was difficult & draining, and I ended up raising my voice & reminding both of us that my boundaries were not being respected. I'm not sure if it had any impact.

It must be very frustrating for you, that your husband has "fallen prey" to COVID conspiracists. Those fb and internet groups make me angry. They appeal to those who are susceptible & cultivate fear without accurate scientific evidence. I am not saying that as public, we are always clearly informed ( I live in Vic too! & very disappointed by Dan Andrews actions) , but there is no sense in spreading more fear without clear knowledge, to back it up. I find that type 'alternative information seeking' can be quite addictive too. 

One thing I'm trying to keep in

minds forefront, while my friend is unmedicated, is "the medical definition of requiring intervention" I.e is he danger to himself? Is he a danger to anyone else? In my interpretation this includes things like eating & sleeping habits or anything else where unusual behaviour is too extreme & may cause harm in some way.

I hope there is hope! The last few days in Vic have been beautiful weather. Now I know their are others out there like me, it has given me fresh mindset. I don't feel as embarrassed, or as though, no one would understand my situation because it is too long & complicated. I feel empowered & that gives me hope for myself & reflects in those I love and care about (hopefully)!

[maddison]

@Carlachris @ P.S. 2 years is a very long time. I am worried that will be my situation too. At the moment, it has been roughly a month. In the past, hospitalization has been required after not much longer than this without meds. If he does not require hospital this time than I will be in same boat as you. Things will be safe enough, but I will have lost that part of my friend who was more stable. Already, I have noticed I am living more independently, it makes me sad, but he nowhere near as connected or involved with me anymore

Sorry if my post came across a bit 'preachy' I didn't mean to sound like that. I think as carers & nurturers  it is natural & almost default to offer help. Obviously, you already know all the strategies that work best for you & the ways I cope may not work at all for someone else.

Its upsetting that there is huge deficit in mental health care available.  There needs to be an 'interim' support network available. Something for people not unwell enough for (Already overcrowded & understaffed) mental health ward, but who are also too unwell to be expected to live either independently or supported solely by family. A type of outpatient facility that could provide weekly support sessions to anyone vulnerable. 

The idea that I am primarily responsible for someone  elses mental health makes me feel overwhelmed, lonely, isolated & loss of faith in health system. The fact that I am the only one now monitoring someone who has schizophrenia and is refusing any medication feels unacceptable.

I am vaguely aware of distressing news stories that have could have been prevented & where mental illness may have been a factor. To be clear, I do not feel threatened in that way, I also don't want to add the  stigma of MI, particularly the media's portrayal, however, I can relate to the lack of support given to families pleading for help.

It also seems somewhat counterintuitive that in the past, when my friend was on a CTO & required to have fortnightly injections, there was also a counselling aspect to his fortnightly treatment, along with 6 monthly reviews. Now, when he is unmedicated, unstable, unwell, there is no funding to support for him.

Vent over! 🙂

[Carlachris]

I really can relate to "The parts the anger has taken from me". Everyday a little more goes missing. And it hurts. Today was not the best of days. Since hubby has stopped taking meds he has become hyper vigilante and noise phobic. .....it's beautiful and quiet here but today the neighbour 24 yr old mr up himself decided to play Death Metal music turned up full ball for a couple of hours. Selfish so and so. Of course hubby had a meltdown screaming at him over the fence religious rubbish and challenging his belief systems in the satanic nature of the music. It just went on and on and on. I'm in too much pain today with arthritis to go anywhere so thankfully hubby got in the car and flew off up to the creek for a walk. Still nasty and ungrateful and rude and snarky and belligerent towards me for no reason but I don't care anymore. I'm not listening or engaging back. I'm at the stage if he gets locked up then so be it. Maybe they can get him back on his meds. It's so very hard living with an angry person 24/7. EVERYTHING is a trigger at the moment. EVERYTHING. I just want to get to the other side of a Lockdown and maybe go for a drive to Lake Eildon by myself for the day. But for now we are trapped and feeling like so many others emotionally spent. Maybe tomorrow will be better. Hope is still to be found it's just a bit thin these days. You are not alone and neither am I. Hugs. 

[maddison]

Hi @Carlachris,

Thankyou writing this. I feel your pain through your words. I can relate to everything you wrote & you uncovered some feelings in me that I must have been hiding from myself. In denial, making excuses etc.

I want to write more, but this just quick note to say - no, you are not alone, I appreciate you sharing. Your hope is inspiring hope in me & im getting to the point to where hospital for him is probably the best option too. HUGS.

[Carlachris]

Not preachy at all. We can all learn from each other. Sometimes the right word can resonate with love and care. I have largely given up on the system. It's not for us. That's half of my husbands trauma. Being locked up in psych wards for months on end horrid treatment too sad to explain over 40 yrs. If there was a magic place to go for help he would NOT go. There are times when I am completely numb and yet all the offers of help are for him and he rejects them all. There's nothing for me. I am the forgotten in the equation.  I'm not feeling sorry for myself. I love my husband dearly when he is my husband and even now when he is crashed beside me because he has burnt himself out. I can find support for him, support for myself but NO support for us together. None nothing. It's his Mental health journey.
2 yrs is a long time but we have been married for nearly 14. Here for the long haul. But I'm sick of being the cleaner to his mental state of health and emotional bodyguard. Your friend is incredibly lucky to have you in his life as is my husband having me sometimes they need a reminder of that. I usually say straight up I am not your Phsychiatrist I am not trained at the level you demand of me call Warren (His Phsych) before I do. At the moment though nothing will work. I have the suspicion his Phsych has mental health issues of his own at the moment and has run away with his family to the country.
I'd like to know where all this finding is supposed to be. I can't  seem to find anything or access anything other than this forum. I think it's a load of media bull crap. Things are bad everywhere but you shouldn't have to be left out to dry surrounding scitizaphrenia. That's too big an ask from us. A little longer and the so called road will be clearer. Hope hope hope.

[Carlachris]

Sometimes it is. Let the professionally trained help him. That's what they are there for. MI can be extremely selfish. We can't help when they don't wish to help themselves. 

[maddison]

Good advice. I also like in your previous post, mentioning 'i don't have skill level you require, call psych'. I have said something similar numerous times. I think I'm going to contact Triage on Monday to find out more info. I want to avoid hospital if i can, if it's the only place, can't do much, but I know it is traumatic. I don't know if it's possible to have him assessed professionally as an outpatient. I feel like I'm out of my depth & worry also that I'm ultimately letting him down by not seeking help. If he is too sick to see he needs it.

Something unusual I've noticed is he is sleeping excessively. Previous times off meds, he became manic & couldn't sleep, becoming unwell rapidly.

This time he is sleeping 20+ hours a day. It really only started this week. I don't really know what to think about it. I have seen this behaviour sometimes as side effect of Respirdal. I don't know if it is serious or not.