Friends, Family & Carers Forum

[maddison]

It's been a very stressful 24 hours. I can see warning signs of relapse (schizophrenia) of my friend of nearly 20 years, whom I live with.

In the last 10 days, he has slept around 3. His behaviour is manic & since this morning has become verbally aggressive/abusive. I have been in contact with his case worker over this period. She has made no effort to assess him, and is mostly uninvolved/absent in his care, compared to previous nurses he has had.

I have been worried about him for last fortnight. There are plenty of times where he is kind & coherent. I have noticed a decline, enough that my sleep has been affected by the stress.

This morning, after he had a delusion that I had stolen a note that he had written & started yelling, swearing at me while I was still in bed, I decided we were at crisis point & reached out to mental health health triage. Eventually, they arranged ITT to come out and assess him. I spoke with them and explained everything. I tried to explain that he needed more support than I, or 15 mins with his nurse could give. I said he was at beginning of relapse & I believed he needed short time in hospital to prevent him becoming sicker & resulting in  likely needing longer stay.

Long story short. They refused to take him. His bags were packed (an indication in my mind, that he knew he needed help) The basic reasoning I was given was that he is not sick enough yet. They would prefer to "keep him in the community as long as possible." ??? I tried to insist that I knew he needed help, and the male nurse turned his back on me.

They are arranging to come back tonight and give him sleeping medication. They also stated that his usual nurse will follow up tomorrow. It feels an inadequate response. I know my friend, I know he won't ask for help, I know he needs more intense support at the moment. 

I don't know, maybe it was the right decision by professionals. Then again, If they had seen some of behaviour I have seen in last few days, there would be no question he would be hospitalised.

They make their assessment after speaking to him for 20 mins, when he's semi ok state & disregard everything I've said. When I see him suffering with his mental health condition, I feel totally helpless. It makes me sad to see someone I care about, having to suffer.

He has become so unwell in the past that recovery has been a long & difficult. I want to try and prevent that for him. He knew and accepted what I was doing. He wasn't full of hate and anger like other times, where I had second guessed my intuition & delayed getting him help, and the illness had progressed to completely unmanageable state to where he would be completely incoherent.

The assessment nurse, for unknown reason, dismissed my intentions. Offered band aid care imo & had little interest in trying to understand or care for myself & friend. 

Thanks for reading. Feel disillusioned by the whole process. I've literally been told today that I must wait for my friend to be really suffering before bothering to get him support.

[tyme]

Dear dear @maddison ,

You have done all the right things and you have a heart of gold.

I hear how upsetting and frustrating this can be for someone who is trying to do the best by their friend.

I’d encourage you to reach out to triage again if things are getting out of hand tonight. In all honesty, I think the system is delaying admission because they know you are there to monitor things, and although he seems to be worse, he is not yet a ‘major danger’. 

I wish the system acted on prevention rather than cure. Unfortunately, the crisis teams don’t do this, but rather focus on episodic care - taking only the most ‘unwell’.

At this time, take each moment by moment. I’d encourage you to reach out to supports for your own self-care, and please call 000 if you feel you are in immediate danger/risk at any point of time.

My heart goes out to you,

tyme

[maddison]

Thankyou @tyme 

I really needed some support. It's a lot.

You made me cry.

I understand where you are coming from & it helped to understand how they prioritise their system.

As sad and hopeless as I feel, it is not me that loses, it is people who need it most. I don't know how to change that.

[tyme]

I hear you @maddison .

With all this investment going into mental health, I hope we will see a shift in how things currently work.

There are people crying out for a case manager. There are people crying out to be heard. There are people unable to get treatment based on locality or finances. This is the reality of what we are faced with. 

I’m with you in wanting to see this change.

Hugs, tyme

[Appleblossom]

It is really hard and really horrible watch someone you care about on the verge of getting VERY unwell.  @maddisonNo question.

I have also been less than impressed by some crisis team interventions ... they have changed their name recently????

I realise resources are stretched, prevention is worth it.

It is almost like they want to push it back on "the community" which seems like a nice thing to do except when the community is also vulnerable, and the person does not have a well developed support group around them ... which is usually the case.

Thinking of you @maddison 

[maddison]

Thankyou @Appleblossom @tyme 

Yes crisis team are called Ittensive Assesment Team now.

They were here few minutes ago to give him some sleep medication & will be back tomorrow.

I hadn't planned on it, but after an inappropriate comment by one of, I ended up telling them everything.

I kept my composure & did my best to stand up for myself. I told them that they were failing him and I. They were so arrogant trying to school me on how I should behave around him. I said, "you are going to tell me how to care for him, when you won't even take him to hospital?' 'i am trying to prevent him getting sicker.'

Honestly, they were not interested in anything I had to say. I think they were embarrassed. 

They kept saying "ok, thankyou' trying to get away as fast as they could. Amongst the drama, my housemate started to raise his voice. It was more obvious now, how unwell he was presenting. I said to them, " he needs to be hospitalised' they ignored me!

I am very emotional at moment.

Yes @Appleblossom it is pushed backed on to me for now. I also have his Mum in my corner & she is great support. And SANE members🙂

I don't know if my expressing of disappointment did anything tonight @tyme  Maybe they will label me as the 'crazy carer', maybe they will have second thoughts when assessing their next patient? It's all i could do for tonight. I know it's a system that needs repairing / replacement, for the moment we are all cogs in the wheel and my actions won't change that, maybe it changed our little household for now. 💜

[Appleblossom]

@maddison 

I hope they listen and take him and you seriously in the long run ... and tmrw is better.  Maybe it is a win for you expressing yourself, and the outcome is on them.

By not taking action they can contribute to the erosion of his informal supports, including you.

So the best thing I can say, is get out of the house, give him a  it of space, and extra self care for you.  It is extra hard when it is in the house, 

If you can get through with your housemate when he is more open to it ,   let him know you do care, but at a loss.  That he had packed, may be a sign he is gaining insight and will slowly be able to take more positive actions for himself.  That they did not accept him, might be a sign for him to believe in his own resilience. The cycles dont always repeat themselves exactly.

[EternalFlower]

I'm so sorry, not right it is intentional I feel that they make ppl feel crazy to sort of make ppl back away. Ur words matter and Ur opinion of Ur close friend of over 20 years...is likely accurate. I'm really sorry they didn't believe u.

[tyme]

Hey @maddison ,

You showed your love and care for your friend by speaking out. That takes bravery.

Let’s get through tonight and see what tomorrow brings. You’ve had a stressful few days. 

If your friend is settled for the evening, do you think you’ll be able to get some rest yourself?

Sitting with you,

tyme

[maddison]

Thankyou @Appleblossom I never really *expressed myself like that. I'm feeling very awkward about it now! I also know that I am overtired & emotional.

I like the perspectives you have given me. I'm really in it at the moment, & objectivity is lacking. i had not considered that the onus is now on them. Perhaps it is good for them to have clearer idea of the impact, their apparent inaction is having.

Thankyou so much for taking interest, and support. It gives me so much. I really do appreciate that you have taken time to reach out to me.

I am open to cycles shifting. I understand that in any time in mental health care must be difficult. The professionals have their reasons that I am not privy too. I have not lost my sense of trust in that respect.

I believe he has gained insight over the years, although he has always packed at the first talk of hospital being mentioned, it's one of his quirks, so to speak, a way to feel as prepared as possible for any likely outcome. I think it gives him a sense of safety.

That I care for him, at a loss is certainly something I had not really considered consciously in regards to happenings such as today. His self esteem & worth is profoundly damaged, likely partly due to the inadequacies he feels connected to his diagnosis. Although, you would not know it, as he comes across as competent. I guess that's partly why I feel strong need to advocate for him. He is someone easily overlooked as coping, even by me.

Thankyou @Appleblossom