Friends, Family & Carers Forum

[tyme]

@Cernunnos ,

Thanks for the update. 

Look forward to hearing from you in the days to come. Hopefully things get better soon.

Be patient. This will take time,

tyme

[tyme]

Hi @Cernunnos ,

How are you and your son and darling?

Thinking of you and wanted to check-in with you.

tyme

[Cernunnos]

Thanks for checking in @tyme 

I've gone in to see my wife 4 days in a row now - last couple of days, while she is still having confusion & paranoia - has had a number very clear moments of clarity as a consequence of active engagement over two hours, where she expressed her frustration that all of her treatment so far has been purely pharmaco-therapy, and the absence of other interventions it is causing her despondency & depression.  This is also resulting in some non-compliance in taking medicines.

The clinics response to her apparent isolation and lack of interaction is to prescribe an antidepressant with the sedative and antipsychotic.  I raised with the nurse that part of her lack of engagement is that she feels her treatment is only medicinal based, and that she is looking for access to talk therapy to complement medication to process what is going on in her head (ideally she wants access to her regular psychologist)

The response I got was that those services are not typically made available in  High Dependency and if she complies, stabilises and gets moved to the lower level clinic she can be considered for further services.

So - none of this sits well with me. 

The Health Service mental health policy guidelines - that I have in front of me - make it *very* clear that "consumers" have the opportunity for participation in their personalised treatment plan, and an ability for access to other evidence based therapies without solely relying on case management and medication alone.  There is nothing in this document that this policy only applies to individuals on a particular level of Admission or level of treatment order, or other discriminatory carve outs.

And here is the issue. The Staff don't talk to patients for any appreciable time. And Doctors are in and out in the minimum time required in order to do the rounds (and they didn't even turn up today).  So they see her as "not engaging" - but I sit with her for two hours a day and get through the fog for significant moments to hear her self-reflect on her condition and express clear wishes on her treatment.  

And I guess a switch flicked in my brain this week between just being a Carer, to being an Advocate.

So given I had no luck with the Nurse who saw access to non-medical therapy interventions as a "reward", I will raise this with the Doctor, and in particular what the Hospital policy is on external psychologist access (because the Australian Commission on Quality & Safety In Healthcare seem to be in favour of this).

And if that doesn't work, I going to formally pick it up with the Hospital Social Work department as they have an advocacy capacity listed.

So I think you can say I'm feeling rather "bolshie" 🙂

My son met with the school Wellbeing Counsellor today so he knows a safe person & place he can unload to.  His home group teacher has been a great help.

[tyme]

Thank you for the update @Cernunnos .

I can see how depressing it can be when all that is offered is pharmacotherapy. On the other hand, I also understand where the treating team is coming from. Psychotherapy takes time and resources, and this is often seen as less helpful when people are in an acute stage of their MH.

Hence, once a person is stablised through medication, THEN psychotherapy is sought. 

I remember this was the case for me in the past, also. Until I was stable with medication, it was hard to focus on psychotherapy - I was too distraught.

As for treatment, you most definitely have a say. 

Thank you for being a carer and advocate for your partner. Also, I'm so glad your son is receiving support from school.

We'll catch up soon, tyme

[tyme]

Hi @Cernunnos ,

Hope this post finds you and your family well. Have you been able to look after yourself and your son in doing something pleasant?

How is your partner?

tyme

[Cernunnos]

Hi @tyme 

Things are improving day by day - the treating Doctor has basically cleared my wife to have direct communication with her Psychologist if that is what she wants. She hasn't been moved from the higher restriction ward yet but the pathway is a lot clear and closer.

I have had a dedicated Carer Liaison phone and have a meeting set up to see them this afternoon before the daily visit to the ward.

My son is keen to go see the new Minions movie so we are going out for dinner & show this weekend as a much needed distraction.  I had a martial arts grading this week too, that in my unsteady state I could have easily risked pulling out of but I stuck with it.  I probably went too hard and started to knock on the door of physical exhaustion, but then there was a lot to shake out of my brain & body and I endured strongly to the end. A bit black & blue but that is therapeutic catharsis for you, though some might argue whether that counts as something pleasant & being kind to yourself.   But it reinforced resilience and has been psychologically positive for the ensuring days.

[tyme]

Congratulations on the grading @Cernunnos ! I used to train in Hapkido - years ago now. It's not something I'd forget in a hurry lol. I found it such great discipline for the mind. 

As for watching the Minions, why not lol! I hope you all enjoyed it. 

As much as I acknowledge that things are difficult at the moment, I'm pleased to hear how things are going for your wife. It seems like she is more stable now?

I'll check-in again in a few days time.

Kindest, 

tyme

[Cernunnos]

Just checking in @tyme 

So forward progress seemed to be gaining momentum when she was approved for 3 hours day release on Saturday.

When I picked her up though, she was agitated & hyper-alert.  The drive home was filled with delusions she was now deliberately not talking to the Drs about, because they can't hear her in the car.

And it continued at home. She then fell into some obsessive cleanliness routines. Part of the release was so she could connect and spend time with our son - and she largely left him alone. He could tell things weren't stable.

Fortunately she went back voluntarily at the end of the release time even though she was exhibiting a lot of anosognosia (my new word for the day...).

Once back on the Wards I found out she had been non-compliant with the medicines the night before, although she did take the morning dose.

I am a little bit torn as to whether I need to discuss with the nurses/drs that maybe day release should be tied to medicine compliance - but then I really don't know whether that missed dose made a difference or not? There's that balance between her having valuable therapeutic home access, but also mindful of the wellbeing of my son if she is in a state that compromises familial engagement. Tricky.

[tyme]

Hugs your way @Cernunnos .  My thoughts are with you tonight. I haven't spoken to you in a while so I wanted to check-in with you. It sounds like there's still a way to go in terms of getting her back to a functional baseline. Your care for her has been enormous and you deserve all the support you can get at this time too.

Is your son on school holidays yet? How is your dear son managing?

Take care,

tyme

[Cernunnos]

Hi @tyme - thanks for writing.

My son is doing ok - I'm checking in with him every day and reinforcing the support structures he can turn to if he requires. The Carer Liaison at the hospital has provided some good online resources for him of peer-aged young people talking about their lived experiences of having parents going through mental health trials.

It has actually been a good couple of days - it looks like the antidepressants are beginning to make a significant difference now they have been titrated up, and that is helping with compliance with the other medicines.  There is clearly a change that has happened and the clinical staff have noticed it as well - so we are just waiting to see that is a sustained consistent improvement. Fingers crossed.