Friends, Family & Carers Forum

[Janna]

Hi people 😊

I’m reaching out for a bit of support for myself tonight. As some of you would be aware my son suffers with major depressive disorder and social anxiety at a level that has profoundly affected his entire life (and mine). In March of this year he was accepted into a residential care (conjoined Dept of Health/Dept of Education) facility for intensive treatment. The turn around has been remarkable when compared to where he was prior to admission. He’s gone from being an adolescent totally disengaged from life in every possible way, to now functioning in a manner that is compatible with life.

This facility runs its programs in 4 stages - the last of which is “integration”. This is exactly the phase/stage that my son is in right now. Integration means that they slowly wean the individual back into life relative to where they are and what their goals and abilities are. My son has chosen to continue with school and try to do his HSC. In keeping with this the facility, together with my son and I, have worked hard to find a school that is the “best fit” for his needs and one which he is happy to give a go. He does not want to return to any school he’s been to before, for fear of the shame attached to his extended absence. Neither is he interested or willing to assimilate into a regular local public school for valid reasons. He therefore has chosen, and been accepted into an SSP school, which specialises in adolescents with emotional disturbances and who have been diagnosed with a mental health disorder. This whole process is very, very complicated and if any other forum member needs or wants any direction regarding their school aged child and mental health disorders please feel free to ask me as I feel I have a very good understanding of the process and may be able to offer some guidance and advice.

So back to the issue at hand. My son is borking at integration. It’s challenging him and he is very negative about it. He is severely anxious about the change. We have been in the early stages of integration for the past few weeks (which is why I have been somewhat absent from the forums) and we have an integration plan for the next several weeks that not only increases his attendance at the school, but also places increasing pressure on me to facilitate this change by being able to drive him to and fro, here and there. At the very least my driving commitments for this from this week forward are a minimum of 10 hours and will increase to around 16 hours per week over the next 3-4 weeks. I’m subsequently feeling quite overwhelmed by this and spinning out about how I can do this and work and housekeep and be a mother to my daughter and a carer to my 87 year old mum and toggle my contacts with my abusive ex-husband and somehow fit in some self-care. Additionally his “at home” nights are increasing, from 1 night this week, to 2, then 3, 4, etc. Argh ….

Just to add another layer to this is the fact that my son’s emotional needs are going to, and have already, increase(d) significantly as “we” try to integrate him. I’ve already had snippets of his anxiety presented to me and am finding it difficult to cope with.

The long and short of this is that I am feeling overwhelmed, scared and alone. I’m fearful that once he returns home and is faced with attending school every day in a regular way that things will resort to exactly the same place they were in before he entered this program. I have to be honest and say that I have a s*load of apprehension and a dwindling confidence which is being fuelled by his resistance and some negative feedback I’ve received from his teacher.

I have a good threshold of tolerance for adversity, but once tipped I go down a very fast slippery slope of no return and when I get into that zone, that exists on the other side of rationality, I am no good for myself, let alone my son. I need words of encouragement and support.

One thing I’d like to add is this. The focus and the locus of all of this has been, and is, around my son .. and rightfully so. However, throughout this entire experience there has been very little support for me as his primary and sole carer. In my mind the health and well-being of any individual can only be as good as the health and well-being of their immediate environment and the people contained within it. For example: what would be the point of rehabilitating a drug addict only to return them to a drug using house! The point I’m trying to make is that my well-being, stability and capabilities are important components that should not be overlooked. If Mum cracks due to overwhelm, where will that leave my son? Herein lies the entire need to have a “carers” forum like this where individual like myself can offload and seek support in the absence of getting this elsewhere.

Hope you understand.

Love Janna ❤️

[suzanne]

Hey @Janna, just wanted to say hi.  I'm a bit under the pump tonight and won't get a chance to respond to your post.  But I wanted to give you a cyber-hug anyway.  I'll pop back in tomorrow.  Take care of yourself

[Appleblossom]

Hi @Janna

It has been a while.  Glad your son has had a turn around, stabilised, and you can reccommend the facilities.  Resistant teens are difficult and the driving does sound onerous. I would not be able to do it. 3-4 hours pw is enough for me.  I am sensing that the treating team is pushing you.  I am not sure adding extra stress on the main carer and reducing expectation completely on your son is the best approach. 

What are we doing childhood and gradual shifting of responsibility onto young people. cant help much but sympathise, but I think it is very important .. all the needs of the family unit are met ... if there are eg., 3 people making decisions about one person ... cant they factor the carer in too??  Rather than blame ...

[Attahua]

Wow, I didn't know such programmes existed so Thankyou for your post as I am struggling with my 16 year old's anxieties as well and school is a really difficult place for her right now but I fear living in the country that such programmes are non existent for us! Thankyou so much for sharing , I feel your pain as going through it myself . Sorry I have no advice as am totally stuck here too but I want you to know I appreciate your openness!!! X

[Janna]

Hi @Attahua

Thanks for your comments.  The facility my son is in caters for kids from rural areas as well. I know of at least 2-3 kids that come from country towns many hours away.  The only problem with getting a child into this facility is that it is a long and convoluted process which takes months, if not up to 1 year and then there is a waiting list.  If you believe that your daughter could do with additional support at school please do not hesitate to bring it to the attention of the school counsellor.  

Janna ❤️

[NikNik]

Hi @Janna

Wow - that sounds like a lot of handle. It's no wonder you're feeling the way you are- that would be very stressful.

I'm so glad you have noticed this now and caught it early. @Appleblossom hit the nail on the head when she said there seems to be a lot of pressure on you. The facility seems to have been so great up until this point, I'm disappointed to hear they haven't been great at recognising the support the main carer needs too.

Do you feel empowered to handle things with your son if they go down hill? Has there been any plan put in place to activate if you or him start going down hill (rather than a plan for when you get to the bottom of the hill!)?

I think often feel as if carers don't see how extraordinary they are. You are being pushed beyond limits that the "typical" (for lack of a better term) person can't even imagine. You are doing an amazing job.

The unknown is scary and things may be shaky for a bit. It really seems like you are doing the best you can, and what all of us would do - hoping for the good and anticipating some shakyness. 

Would you consider connecting with some formal supports? (apologies if you have shared elsewhere your history or views on seeing a professional!)

[Faith-and-Hope]

Hi @Janna

I have had periods in my lift when it was so full-on I just had to survive every day .... different reasons to yours ..... 3 babies under 2yo, one with disability, failing to thrive, open heart surgery at 7 months, all 3 on nebs with asthma 4 x / day, in-laws oppositional, own family not local, workaholic husband .....

Best advice ?

Fast-track all house-keeping - dust mop instead of vac, duster over everything while on phone calls, spray cleaner the shower when you're in there and spray rinse with shower head or small bucket before stepping out ....
Simplify all meals - cook double and freezer half ....
Prioritise sleep - rest if you can't sleep ....
Go 24hrs / day in trackies, then wash.

If you can connect with a church that offers help as a community service you might find them donating meals, doing housework, doing driving shifts for you ..... keeping you company and offering compassion .....

Hugs .....

🌷💜

[Janna]

Thank you all for your responses.

@NikNik - the support issue was identified by my son's external psychologist who he has just re-engaged with.  She was quite dismayed to learn that there had been very little support for me or no strategies put in place to support integration.  She has been attempting to contact the treating psychiatrist but they have been playing phone tag and have not yet been able to talk.  

@Faith-and-Hope - many thanks for all your practical suggestions.  I think I have the domestic scene licked and have managed to get that down to a fine art.  The biggest difficulties for me at present are the enormous amount of travelling and trying to work.  My working week starts with a 2 hour journey before I even start and ends in the same way. Now I have additional travelling to do in between.  On Tuesday alone this week I travelled 190 minutes between home, work, his school and the facility.  The SSP school has applied for "Assisted Travel" for my son as he is not an independent traveller and I am unable to support driving him to and from school 5 days per week.  However, this will only come into effect once he is a full-time student at the school and not during this integration.  So there is a light at the end of the tunnel, it's just getting through this period which will be the challenge.

We've had another mini-drama this week due to a mix up with the integration plan which resulted in my son plummeting down in mood and refusing to attend for the past two days.  He says he will return on Monday and I hope this is the case.  As a result of this he missed 2 very important exams and will receive 0%.  

I can see from this experience that his well-being and stability is very dependant on the stability and predictability of his external environment.  He doesn't respond well to spontaneous events or change. I guess thats part and parcel of his MI - he just don't seem to have the same tolerance, resilliance or adaptability as a mentally well person and is extremely sensitive to anything which alters his comfort zone.  In saying that however I can see that he has improved tremendously from where he was and that his reactions are less intense and not as long lasting.

I'm feeling better than I was the other day mainly because I was able to offload my grievances via this forum.  Onwards we go 😊

[Faith-and-Hope]

❤ @Janna

[suzanne]

It wasn't supposed to take me a week to get back here @Janna.  Apologies.  As ever you show such insight and wisdom.  You're absolutely right.  How can your son continue to recover and face all his future challenges if you're not sufficiently supported and able to cope?  It's like that biblical tale about building on sand rather than a strong foundation.

How are you feeling this week?  We all have moments of doubt and periods of feeling over-whelmed.  Is that how you're still feeling?  It seems like you're already starting to rebound in your last post.  I would imagine that getting the travel sorted, even if it's not starting immediately, would have helped.

No-one would ever doubt that you want the very best for your son and are willing to do what's required.  But I think it's really healthy that you recognise the limits in what can be asked.  And before they're about to smack you down!