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Extremely unwell family member - we don’t know what to do

Extremely unwell family member - we don’t know what to do

Hi everyone,

I found this page looking for forums for supporting a loved one with mental illness.

Im honestly feeling quite overwhelmed, so I hope it’s okay to share our situation and ask for guidance from anyone who has walked a similar path.

My sister is 30 and has lived with severe contamination OCD for many years. As a family we’ve largely managed things privately over time, but over the past year her mental health has deteriorated significantly and she has been experiencing clear psychotic symptoms (hearing voices, hallucinations, disorganised behaviour, wandering for long periods and inability to care for herself).

She’s unable to work, eats very little due to contamination fears, and relies heavily on family for daily living. She has presented to hospital and acute mental health services multiple times and was prescribed antipsychotic medication, but due to her illness she cannot take it consistently or sustain engagement with treatment.

We feel very stuck with the hospital system. Even though she has mentioned suicidal thoughts from time to time and ongoing voices, imaginary friends and psychically looks unwell, because she wasn’t expressing active intent in the moment, she has been discharged each time and we’re told she doesn’t meet admission criteria. It’s a horrible experience, the last time we were in emergency we where there for 9 hours.. It feels like she has to reach crisis point before help is possible, which is terrifying to watch as a family. We feel like she IS at crisis point, the only thing left is for her to harm herself or someone else.

We have tried to access private psychiatric care. She sadly missed two psychiatrist appointments because she wandered and was uncontactable beforehand, and both psychiatrists then declined further engagement. The one time we did see one of them, the advice was essentially to keep taking medication and improve her diet, which hasn’t been achievable given her level of illness.

Recently there have been multiple episodes where she has been screaming at the voices in her head while alone at home, to the point neighbours became concerned and contacted the landlord, who then called my mother. Another incident occurred the other day where my mother was at her place trying to help with her care and try have her eat some food, she picked up a kitchen tool (was abstained from saying the word) and started screaming at the voices in her head. We are absolutely terrified. Lost. And feel like we’re in this alone.

These incidents really reflect how unwell she is outside of appointments and how unsafe things feel day-to-day.

She is currently living with my brother but that arrangement is becoming unstable because HE is becoming her full time carer and also struggles with mental health concerns, my mum is on minimum wage and my step father will absolutely not have her at the house.

I suppose I’m just hoping to hear from anyone who has supported a loved one with severe mental illness and poor insight like this…

I feel heartbroken watching her slip further away and feeling powerless to help her. My mum and brother are absolutely struggling and our family is on the brink of collapse.

Thank you so much for reading.

7 replies

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In response to: Extremely unwell family member - we don’t know what to do

Re: Extremely unwell family member - we don’t know what to do

also for some further context, she is on job seeker… my mum is funding her living expenses and rent. We’re not on the ndis or on any other government payments and we’re currently trying to navigate this whilst dealing with her current state.

In response to: Re: Extremely unwell family member - we don’t know what to do

Re: Extremely unwell family member - we don’t know what to do

welcome to the forums @Storiessofar!!

thanks for sharing, i can see that you all care about your sister heaps and i'm sorry to hear how hard its been. we're so glad you've reached out 💗

we had an OCD webinar last year where Anu, a person with lived experience, shared what worked for him: Recording // Mental Health Recovery Webinar // OCD... - SANE Forums

hopefully watching that webinar can provide you and your sister with some insight too.

i also encourage you to reach out to Carer Gateway, they have a variety of free supports for carers.

i don't have lived experience myself but i'll tag a members here who might be able to chip in 😊

@AuntGlow @Kashmina @creative_writer @NightFury @D1ng0

In response to: Extremely unwell family member - we don’t know what to do

Re: Extremely unwell family member - we don’t know what to do

@Storiessofar I hear it’s been rough, sending you hugs 💖🫂. I wish I could offer more support but my brain is frazzled

In response to: Extremely unwell family member - we don’t know what to do

Re: Extremely unwell family member - we don’t know what to do

@Storiessofar I'm wondering whether engaging with Tandem Carers could be helpful as well in terms of accessing supports for yourself and others in your family who are carers. They are Melbourne based but if you are elsewhere they can also point you in the right direction and have lots of relevant information on their website, no matter where you are based. Another point of call could be the Hearing Voices carer support groups or any other information from that page which could be helpful.

In response to: Extremely unwell family member - we don’t know what to do

Re: Extremely unwell family member - we don’t know what to do

@Storiessofar The hospital one is a tough one. Not just the long waits at emergency but then not having access to an inpatient bed as well. I'm wondering if this happens again, before she is discharged whether you request to either speak to a social worker or a hospital psychologist or even the doctor or a carer peer worker for either a referral to a community setting or any other information they might have that could be helpful. They are obligated to support you with this, but it has to happen before she leaves through the exit doors which many people don't know. So don't leave until you have been given at least some sort of other option(s). I'm wondering if it might be helpful to get an evaluation from a GP in the meantime? Does your sister have a regular GP she trusts? This can also help with getting a referral or other supports, it doesn't always have to be done by a psychiatrist (as far as I am aware). Other things that have helped are actually documenting the nature of the symptoms, what days they happen, for how long, what has become worse etc. Even things such as any text messages or written work she has shared, what she's eaten that day etc. I know it's a process but it could help to give the doctor more of a longitudinal comparison to what they might see in a one off session, where she might also pretend to be more well than she is at the time (I just say this because my sister has done the same thing - knew what to not disclose and how to pretend that she isn't in need of help - not sure if this is your experience though). Hope that helps a little bit.

In response to: Re: Extremely unwell family member - we don’t know what to do

Re: Extremely unwell family member - we don’t know what to do

Thank you

In response to: Re: Extremely unwell family member - we don’t know what to do

Re: Extremely unwell family member - we don’t know what to do

Thank you for your advice. We have been referred to a community service however she is too acute to engage with their services. The nurse there is helping with some escalations and we have an assessment with an OT in a couple of works through their organisation.
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