Where to turn to next.

Ozboomer · ‎03-01-2019

Hello all , I have an adult son and recently he has a plan with the NDIS for carers every day. He has bipolar which health say is in remission. He takes medication morning and night . He also has MS and is legally blind , he hardly showers , doesn't eat proper meals , even though his carers are there every day, nothing is changing for him. He hasn't been hospitalized for some time and I believe the meds he is on are not helping him as he is paranoid and pushes everyone away. Tells his carers he has taken meds or had a shower or changed his clothes when clearly he hasnt. Who do I approach to have his health reviewed as he seems to be caught between mental health and his obvious physical and mental problems with his MS. There doesn't seem to be a combined approach and this has been going on for a long time and my son is 43 and his life seems to be just dripping away. Need some advice on where to turn next , should I take it higher ?

Peppermintbach · ‎04-01-2019

Hi Ozboomer,

I feel it must be heart wrenching to see your son suffering and hurting so much...you sound like a beautifully caring parent who must be incredibly worried about him. He is clearly going through a lot with many struggles...

I must admit that I’m not too familiar with the NDIS, but I’m wondering if there’s someone you can approach at the NDIS to discuss your concerns and seek advice for a more integrated approach. Alternatively, if all his carers work for the same organisation, maybe you can request a meeting with their supervisor or manager to discuss how they can better support his needs.

As for a health review, my suggestion is maybe you might like to approach multiple professionals. Granted, I’m not a doctor or a nurse; I’m just speaking as an everyday, unqualified person...I wonder if perhaps a psychiatrist would be helpful to assess his mental health, and another specialist doctor/physician to assess his physical health. That way, you would get a holistic review of both his mental and physical health.

I don’t know if my suggestions are helpful or not, but I wanted to share them anyway. It would be lovely to hear from you again if you’re feeling up to it (no pressure though)...my heart goes out to you and your son.

Kind thoughts to both of you.

Pepper

Ozboomer · ‎05-01-2019

Hello Pepper,

Thank you for your kind words of support, it has been hard watching my son go through this. Many of the suggestions you have made have been tried and found wanting . One thing I have found is if you have multiple problems including mental health , the mental health problem seems to take over all the others and there is no joining of forces by the people treating my son . One blames the other problem for his decline in health, mental health pyschs blame his decline on the MS , clearly he has a brain disease, a cruel disease which has robbed him of the freedoms he used to enjoy. He was a talented musician, he hardly plays his music anymore. He can't even work a tv remote because he can't see the buttons. I have talked to so many people in mental health and have tried to get a joint effort with neurology but it never happens . So frustrating !

Thank you again 🙂

Peppermintbach · ‎13-01-2019

Hi Ozboomer,

I’m so sorry it has taken me a while to reply. I’m here now though...

It sounds so painful for you, as a parent, to watch your son’s health deteriorate. It must be heart breaking to see him like this...he sounds like he was once so full of promise with a bright future ahead, but to now struggle to work the remote...heart wrenching

The health services sound so disappointing. It’s sad when no one seems to be willing to take responsibility and that there is a lack of integration between services.

Is it okay if I ask how have things been since your latest post?

Kind thoughts to you today,

Pepper

Ozboomer · ‎22-01-2019

Hello Pepper,

Thank you for writing again, Hope all is okay with you. There is always something going on with my son. I have written a rather terse letter to his mental health team as I was not happy that they were handing him over to his GP who has only known him for less than a year where as mental health have known him for many years. The disease in his brain has a huge effect on his mental health but they say it is the MS that is the problem now grrrrrrrrrrrrrrrrrr I am so over it all. When I see him now it is upsetting and maybe there is nothing anyone can do to change this , he doesnt seem to want to . We have been talking about getting him into supported accommodation, MS society is building self contained units where he can be alone when he wants but have support 24 / 7 on the premises. There is a waiting list for these but he is on it . It is hard not to get upset but I have tried to step back and let his new carer plan have a chance to succeed , who knows , maybe a miracle will happen and all will work out .

Peppermintbach · ‎23-01-2019

Hi Ozboomer,

I feel it must be so frustrating and disheartening that your son doesn’t seem to ever get a break. As you said, there’s always something happening, which must take a huge toll out of both of you.

I feel sad that your son seems disinterested in/unmotivated to make changes. I imagine he’s feeling very drained from both his MH struggles as well as the MS. It must be hard for you, as a parent, to see him like this though...

Those self-contained units with 24/7 care sound wonderful. Do you know when they will finish building the units? I truly hope he progresses quickly on the waiting list when the are ready. That would be such a relief for you as well...to know he’s being taken care of, but he would have his own space/privacy as well.

Thank you so much for the well wishes. You’re very kind 🙂

Caring thoughts to you,

Pepper