Looking for Communities to help

[SOCRATES1]

Hello everyone out there...

My name is Socrates, I am here because I am seeking assistance for a very loved family member who is just beginning to understand that they may suffer from being neurodivergent...

More specifically, 'Schizophrenia'... Obviously, the stigma of this illness is huge, and learning how best to cope & help is why I am here.

I have acquired some good reading literature, however, it appears to me that the best help might be found by learning how to access support groups for patients, carers, and other family members in. time...

The notion of creating a supportive "wrap-around" integrative system seems to appeal to my way of parsing this information, thus far...

Hopefully eventually finding the best way to try to navigate a way through all of this...

Happy to listen & hear from others who might wish to share some advice & experiences with me, thank you...

Socrates

[Dimity]

Hello @SOCRATES1 and welcome.

Being diagnosed with a psychotic illness is a big step that may have been arrived at after a very difficult time for your loved one and family.

As someone with lived experience (formerly diagnosed schizophrenic,  currently diagnosed bipolar) I'd suggest that " a "wrap-around" integrative system" might look very different depending on the home situation and life contexts of your loved one. Especially with regard to the person's agency and independence. A young person living with parents, with little insight into their illness, would have very different needs to someone older and in a different domestic situation,  for instance.

Our peer guide @RiverSeal has compiled lists of resources for people living with schizophrenia and started a thread where people can share their experiences.

Hearing voices and psychosis 🗯️ 

You're very welcome to share more about your family situation.

Do you have any particular questions for our friendly forums community?

[Dimity]

@SOCRATES1 also see https://www.sane.org/information-and-resources/facts-and-guides/schizophrenia

There's also resources for carers 

[Appleblossom]

Love me a bit of Socrates. @SOCRATES1 wrote on him in my HSC exam ... in another life ...lol

@Dimity is wise.  There are many different ways people exist while carrying those diagnoses.  I am glad you are proactive and trying to envision a good outcome for your loved one. It is difficult, to say the least.  Wrapped around integrated support sounds great, but also boundaries can be important.

There are also differrent approaches, from more clinical, social worker lead, community advocacy and peer lead....so much depends on the individual and their circumstances.

Take care of you as well

[SOCRATES1]

Thank you for your thoughts & words of support...
I will look into those threads you've mentioned too...
Thank you again Dimity

[SOCRATES1]

Hey there @Appleblossom ,

Thank you for your reply & pls accept my apologies for not having replied to your warm welcome sooner...
Appreciate also your words of wisdom & advisings... All very sound too no doubt.

While this journey has now been in progress for sometime... Things have continued to evolve somewhat slowly for a myriad of reasons I guess... However, we seem to have reached a juncture of sorts, as the family member in question, sort help voluntarily on this occasion...

Hence, a form of acceptance that a problem exists in essence...

I have recently acquired some excellent reading in the book, "Living with Schizophrenia" (Leggatt & Clark), & there appears to be a wealth of useful logic & empathy from within those pages thus far.

In my view, I am hoping that my family will all seek to learn more about this condition, & how best that we might all begin to truly contribute, in the best possible ways to help facilitate recovery...
It appears that there are many useful types of supports systems... However, not all are readily available in our less than ideal mental health system structures today.
Finding the correct path, and educating myself & others within the family circle appears to be of prime import. However, we will also require the services of very supportive clinicians too no doubt...

So although this journey is a continuance, it is really only now commencing, in my view...
Thank you again for the support you & Dimity have already provided.

Yes, the Socrates handle has a story all of its own too really... (perhaps for another day). Have you ever read, "The Allegory of the Cave"?
Quite the epiphany for me...

Thank you again Appleblossom... 8-)

Socrates

[Appleblossom]

Yep @SOCRATES1 Its in The Republic. In my teens I lived with an uncle who did a major in Classical Civilisation, I was given his books, after he passed, and also studied it a little. 

A lot can help be seeing things "outside of the box", and being aware of our position and limits. I can get into otherworldly imaginations as well...but mostly I pay close attention to the earth we are on. lol  I am lucky to have been rich in study and books.

Socrates1 posted to you as well.

@Dimity 

[SOCRATES1]

Thanks again @Appleblossom ...  8-)

The Allegory of the Cave, was quite simply a late awakening for me personally... Studied a few units within an arts degree sometime back... Love having a philosophical bent in my life... Find it often more than useful too...

Love books & study! Always looking to read & glean more from the world about me...

To me, philosophy helps me clarify past, present & future... In a manner of speaking...

You sound a wise individual Appleblossom...  Words of philosophy while often seen in a metaphysical context, also hold application within the present too, in my view...

Interestingly, I struggle with imagined religions & deities... (just for the record - so to speak 😉

One of my greatest regrets, is simply that we humans, will never really live anywhere near long enough to truly grasp or approach a better understanding of what this thing we call "Life" really is... and how best to navigate our journeys with any measure of yet another ambiguity, 'success'! It has such broad connotations. Again, in my view of course...  

Appleblossom, have you had much experience with 'Schizophrenia'?

As of this moment, I am somewhat unable to resile my many reservations concerning the mental services & institutions here in Australia... Naturally, like many others here I am certain, I love and care a great deal for my afflicted family member...

Nevertheless, I do realise that delving into the subject holds many a 'wicked problem' to contend with, if you take my meaning... (?)

Thank you for your support again as always...

Night for now...

Socrates

[Appleblossom]

For some reason my tagging has technical issue.  SOCRATES and I haven't been able to fix it yet.

hope you still get some notification cos you started this thread.

I believe psychiatrists would profoundly benefit from doing a little bit of philosophy.  It means Love of Wisdom, and they learn to be a little more curious, humble and develop insight into the consequences of their many actions, rather than hide behind legal loopholes. I am sure there are some good and caring and passionate ones, whose eyes have been opened to possible harms done by the so called mental health system.

I have a great deal of experience with Schizophrenia from a range of points of view. Unfortunately many SANE workers do not. Briefly, apparently, I am the daughter of 2 schizophrenics and married a high functioning man with schizophrenia, who also wanted me to take on the care of a baby born to a lady who was overprivileged but low functiong as she was very fond of illicit drugs mixing with her meds. HMMMM. So just there are 4, whom I have long term intimate anecdotes for.

I have made a life long study of mental illness, with intial focus on Schizophrenia, but for some reason they wont lock me up. I have never been hospitalised.  So I am pretty analytical about many aspects of it from a patient population to Lived Experience and various professional iterations within the field. 

Use your philosophy to connect with your Loved One struggling with said condition. Find your own authentic boundaries. You shouldnt have to agree with things you do not believe are true, with both your family member and the services.  Dont put the services on a pedestal. They are very fallible. but we all have to work in our best way with all that comes into our orbit. Just take them with a dash of salt, and dont be too naieve. Still, they may be the only option you have at certain times.  Options may open up at different times.  I believe its important NOT to pathologise one member in a family system, which tends to have "fluid" dynamics. @SOCRATES1 . Ach ... something re tagging is working but its still a bit skewed.   Oooopsee daisy.

Its important to care for self and do your own research, and maybe also gently and politely, keep the services accountable, if your family member is unable to adequately advocate for themselves..

I might try turning my computer off and see if that sets my tagging function.

[SOCRATES1]

Hey again. @Appleblossom 

In my first response to you & Dimity... I was not using the @ tagging system at all...

Unfortunately for me Appleblossom, I too have some issues of my own to contend with...

I have an extremely rare type of blood cancer, (Mylefibrosis - MF – insert chronic form of Leukaemia). It is a blood cancer that ultimately scars the bone tissue, causing what they term as 'Fibrosis'. Which eventually can lead to bone structure failure etc. Or worse, terminal (Acute Myeloid Leukaemia - AML)

All of that said, "Fatigue" is possibly my greatest challenge, that: ubiquitous bone pain; cold sweats; tinnitus; vision issues; headaches; nausea; Trans-ischemic attacks (TIAs - minor brain strokes), and they're just the main highlights but there are many others too... sadly...

While there is a "Cure" of sorts... Allogenic Stem Cell Transplant (ASCT), unfortunately, the success rate is far from ideal & quite abysmal in reality, & often leaving those who attempt the procedure much worse off, & about 1/3 deceased etc.

Hence, thus far, for me and in my case, I have elected to educate myself, (as best I may), and manage my condition pro-actively by self-advocating and helping others to also learn how to come to terms with the condition, (in one or more of its diverse forms of expression).

Built a small patients website, created a FORUM, and we have meetings every Six (6) to talk about anything & everything etc...

We also try to do some small amounts of Fundraising for Research, (registered NFP with the ACNC), simply because these blood cancers are so rare, and so little is presently being undertaken etc.

All of that said, I hasten to add... It's much better now than it was 2016 when first diagnosed (Dx).

Still what we do is such a very small thing in reality, but even if it helps just one person learn how to best cope, then we have been successful, in my view...  😉

Hopefully, whatever computer issues you are having might soon be rectified, as I would truly love to learn so much more from you if we can arrange that somehow...

In my positioning, I am a parent of the loved one who is afflicted... While it started when my progeny was somewhat younger, the situation as evolved growing worse slowly over a longer period...

However, I believe that we may have finally come to a juncture where, acceptance of this condition is finally beginning to be understood...  (fingers crossed of course)

For in my view, a problem cannot be solved, at least and up to the point when first it is acknowledged as being extant...

In any event, really appreciate your invaluable input Appleblossom...

Thank you for your ongoing support...

[edited by moderator]

PS. Happy to share sometime how & why the Socrates tag came about... quite a story really...  😉