The_Other_One
Casual Contributor

No end in sight

Hi all.'

 

I've just discovered these forums and don't really know what to expect. It's coincided with me finally realising/acknowledging that I'm likely to be caring for my adult son (currently 23) in some capacity for the rest of my life. 

 

He has multiple mental and physical health conditions including depression, anxiety, ptsd, bpd, autism, eds, autoimmune disorders, dissociative identity disorder and recurrent suicidality. 

 

Everyone in our family is neurodivergent - husband has ADHD, depression, social anxiety and avoidant personality traits, my daughter has been assessed as having autism, ADHD and bpd. I haven't been formally assessed but I'm fairly certain I'm on the autism spectrum and I've been diagnosed with bpd (although I'm unsure if I agree 100%) and depression, along with numerous physical/autoimmune issues which have sharply decreased my physical capacity and quality of life. It's a lot sometimes.

 

At the risk of blowing my own horn, I am the hub of our family. If anything or anyone needs doing, support, organising, advocating, etc, it is down to me. When I ended up as an inpatient in a mental health facility last year due to suicidal behaviour triggered by extremely inhospitable circumstances (homeless for two years in a very remote location with no running water or other amenities during a mouse plague along with psychosocial adversity) my husband and son collapsed in a metaphorical heap and started feeding from and reinforcing each other's dysfunctional beliefs and behaviours. My husband always talks about how he will be our son's carer but observation, reality and experience over decades show that talk is all it is. 

 

Recently my son stopped taking his meds and hid that from me. He ended up going onto a fugue state, got lost and was missing for several days. That was the most terrifying time of my life. When he was found, he was carrying his clothes, had lost his shoes and was wandering on the side of the highway. Apparently all he was saying to the people who found him was "Can you take me to my mum?" and he claims to be completely unaware of what happened over those days that he was gone. 

 

Now I'm administering his meds and running as much support and organisation as I can but he's an adult and there's no guardianship or other mechanism in place, which makes getting information or coordinating his care pretty much impossible when an alter who is generally non-compliant is fronting. 

 

We've discussed obtaining medical and other authorisations for me but he refuses to commit to a timeframe. It's frustrating, exasperating and at this point, honestly frightening to think very far into the future. 

 

I'm not going to lie or pretend to be a saint here - I resent my situation at times. Sometimes I resent it A LOT and my own impulse towards maladaptive behaviours surges. I want to just run away or jump in front of a road train or take up drinking or seriously heavy drugs. I'm in my 50s and I've been a parent since my early 20s. I want a break. More than a break. I want the knowledge that my son has the tools and supports to live independently and the willingness to apply them. But I don't have that. I'll never be able to live for myself. From where I'm standing now, what future I have left is an endless treadmill of obligations and duties with the constant underlying fear that *this night* is going to be when he vanishes permanently, hurts himself severely or worse. 

 

Additionally, while we were fortunate enough to be allocated public housing, we were placed in a regional town that we have no connections in and what peer and social support I had was finalised and withdrawn, with the only advice or referral was "find the local mental health support services and engage with them". Such services are very thin on the ground where we now live and I'm only realising now how much I relied on my previous support worker to just be an ear. I feel like I'm adrift with an anchor chained around my neck. 

 

Dramatic, I know, but oh well - that's my life, no matter what I try.

 

 

3 REPLIES 3

Re: No end in sight

Hey @The_Other_One welcome to the forums! Apologies for taking a while to respond.

 

This is a lot to be dealing with on your own, I can see how overwhelming it must be to have these responsibilities and manage your own needs at the same time. I'm sorry you feel this way, and thank you for sharing your story with us. Your exhaustion and efforts are not unnoticed, every step you've made to take care of others and yourself shows a lot of strength.

That must be frustrating to not have access to peer and social support locally, but I'm glad you've reach out to our forums - I hope you find some new connections in our community here, there are many spaces to check out and we're all here to listen. 💗

 

It can be difficult advocating for your family while also looking after yourself - if you feel you need additional support at any point, please don't hestitate to reach out to these support services:

Lifeline 13 11 14 https://www.lifeline.org.au/ 
Lifeline Text Support 0477 131 114 https://www.lifeline.org.au/crisis-text/ 
Suicide Call Back Service 1300 659 467 
https://www.suicidecallbackservice.org.au/ 

Carers Australia

SANE Support Line has counsellors available Mon-Fri 10am-8pm by calling 1800 187 263
If feeling unsafe, please contact 000 

Re: No end in sight

Hi @The_Other_One 

 

I can hear the strength and creative adaptability in your story. You are an amazing mother, holding all this together! EDS and all the other co-existing fun stuff that goes up and down the family line is not something easily diagnosed or managed. I really hear you. 

 

It sounds like you have been through a real battle and now have come out the other side in some ways, you have a home now..yes, but still there are things to do. It's understandable that you want a breather. Completely. You hold your head high! You have won a huge battle. Keep reaching out for support and join the local community groups, if you can. They can be really helpful in smaller towns for opening up connections and support networks. 

 

I wonder whether the local hospital would be able to refer you on to any services? 

 

There are carer respite options too, if you need a break. Either through NDIS or through Mind Australia   https://www.mindaustralia.org.au/support-carers

 

There's also carer payments you may be eligible for, through Centrelink. Might be worth a look into if you haven't already?

 

I just wanted to say that I think you're all doing amazing. Having stability with housing, ie not living with the fear that the rug is going be pulled out from under you at any time, changes your mindset. Give it a bit of time now. Don't give up hope for your son, or for yourself and your futures. 

 

If you ever need to chat, SANE also have a Support Line: 1800 187 263 (open10AM - 8PM). 

 

Really wishing you all the best in your fresh start. May your new home bring you the peace, the new supports and the friendships you all need to heal 🩵💜

Re: No end in sight

Hi @The_Other_One,

Thank you very much for sharing, and I'm sorry that you're going through such a difficult time.

You and your family have had so much happening, and you have a lot of responsibilities on your shoulders. You have shown what a strong woman/mother/carer/and wife you are, and even more so for reaching out for support, as that takes courage.

I can relate quite a bit as I am also a family carer and wear many hats, so I can understand why you feel this way… it's a lot of pressure. Especially with little to no support. In saying that, we do really need to be mindful to look after ourselves as best we can and prioritise our own physical and mental health, otherwise we run the risk of burning ourselves out.

Both @rav3n and @8ppleTree have given some wonderful advice and have made some great suggestions — I also highly recommend reaching out to SANE's Support Line to be able to speak to a mental health professional and arrange some guidance and ongoing support.

Here are also some resources that may be helpful:

And here are some other support services that may be helpful to you right now:

Online support groups:

I hope that you can find the support that you need to help lighten the load.

Hope to hear from you again soon.

Be kind to yourself 🧡