Friends, Family & Carers Forum

[Dadcaringalone]

@greenpea  I’m the same, I’m the type of person who needs personal contact! It feel like its type of unnatural talking to someone like this, but as you say so eloquently, its better than a kick in the head!!! Keep up the walking!! That’s awesome and energizing by the bay! It’s also like walking meditation for me and that’s what I’m doing for my break.

[Dadcaringalone]

@greenpea How’s things? Long time no contact. Would be nice to have a chat when you are free.

[greenpea]

@Dadcaringalone  Hey Dadcaringalone 😄 long time no hear. How are you and your son and daughter going? My son is doing well. His meds were altered (taken back a notch) so he is much more alert  and with it so to speak. He now has one on one carers for Tuesdays and Thursdays that is in addition to his Saturdays so he is off doing young men's stuff like going to pubs and playing pool :). On the other days he goes to group sessions where he goes out to clubs and does cooking.

Daughter is doing well,. Is getting up early in the mornings. Walking to shops every day and is showering regularly with only a short nap throughout the day 🙂

I am exercising regularly, five days a week (still being a bit naughty with choccies :p), and have a support worker starting with me in July where I plan to do more walking and lose some weight or at least get fitter :)..

Have been thinking of you from time to time and wondering how you and your family were going. I hope everything is still going well for you. Am looking forward to hearing back from you. Love greenpeaxxx

[Dadcaringalone]

@greenpea Just rushing off to work Greenpea. All good here, will respond when I get a chance throughout the day during a break.

Take care for an awesome day of fitness XX

[Dadcaringalone]

@greenpea 

Sorry for the rushed message this morning on the way to work. Things have been moving in a positive direction for my son and myself. He’s now on a very high therapeutic dosage  of moods stablizers which is working out pretty well as this year during exam times it’s the first year for about 6 years that he hasn’t suffered from a psychotic breakdown requiring hospitalization during exams! He’s only got one exam to go this semester and he already knows that he’s passed everything! Then next semester he will graduate. He’s getting much better at managing his stress during stressful times. I would like him to sleep less, but that will come later.

I’m still getting carers burnout now and then but I’m currently doing a course on relationships and managing your own emotions and mindfulness which is making me stronger emotionally to deal with these upheavals. I have started working casually and ready enjoying getting out of the house and the social interaction.

My daughter is going really well with her depression and has just celebrated her first year in a relationship with her boyfriend which she tells me she greatly loves. She also going well with uni and loving her studies. I’m spending a month with her over the uni holidays while my son is away with his mum.

In summary, it’s all going much better than when we last talked. Like you, gotta get back in the gym and get fit which I expect will happen very soon while my son’s away giving me some respite! Take care and in tough and hope we physically bump into eachother for a coffee one of these days. If not we will have to be content with our virtual friendship...XX

[greenpea]

@Dadcaringalone  Hey Dadcaringalone that is all wonderful news. It is fantastic that your son has done so well with all his studies and is heading for graduation. I really hope that life keeps going along smoothly for him as he and you for that matter, as I know as a carer it all affects the carer as well, Wonderful about your daughter still in a relationship after a year sounds quite serious. My son1 has been in a relationship for 7 years his girlfriend is putting on the pressure to get married but I say and his dad too that he is way to young at 28 for that kind of commitment. She also wants children :o! I I am too young to be a grandma thank you very much.

Contratuations on getting back to work. That is fabulous as you say for your mind and social life. How wonderful for you. I am so happy that things are going so well for your famiy Dadcaringalone and yes keep in touch through the good times and the bad and you never know we might bump into each other and have that real cup of coffee sometime :). In the meantime this will have to do. xx

[Dadcaringalone]

@greenpea Thanks for your kind virtual coffee ☕️ and yes I am sure we will bump into eachother one of these days. In this relationships course I am doing we are focusing on the fact that I was scared that I would face instability with my son again but now I understand that I only have the ability to control my own emotions and if shit happens it does and I can only really be mindful during those times. This is pretty empowering as even though I sometimes feel dragged down by my son’s disorder I now look for the signs of him deteriorating and can manage my emotional response to that. We had a brief relapse recently and I was much better at staying stable. Now all I need is to get physically back in shape. When my son put on weight from his medication I also did and the really hot 40+ days got me out of the gym but next week I’m slowly getting back in and giving myself time for myself.

You son’s girlfriend wanting to get married at 28 reminds me of the age I got married and please don’t worry because you will always be young at heart! My daughter told me that she has discussed moving in with her boyfriend earlier next year, and not to tell her mum because she will freak out. She seems to think I’m more flexible about these things. Really looking forward to spending some time with her together. The funny thing said she wants to spend time on the harbour and maybe visiting Taronga Zoo to do touristy things. I can’t believe I will have a whole months break from my son! The work I am doing is great, I wanted to do more hours to bring in more money but I was having a struggle keeping up with carers things for my son because I do absolutely everything for him. He’s offered to try and help me out more but I know that’s a real struggle for him so I’m not pushing things because I don’t want him to become stressed. At present it’s only a verbal offer of assistance because he sees me getting burnt out but at present the physical offer of assistance is not forthcoming. 

Take care and have a great day. Speak soon...

[greenpea]

@Dadcaringalone  Hey Dadcaringalone and good morning :). Interesting you did a mindfullness course I did one as well. You are so right in how it is your reaction to your son's mi which is what important in surviving the more testing moments. Sometimes I find that I am over whelmed by it all and it crushes me literally physically and mentally I can feel it. I am going to do another basic course as I don't think when I did the first one that I picked up all the parts properly because I was not in the right head space.

Thank you for your kind words re young at heart 🙂 I try!  It will be lovely to spend time with your daughter doing fun touristy things like Taronga. Just dad and daughter time I hope the weather stays good for you during that period so that you can really get out and about and have some fun :). Re son helping out I have the same issues with daughter she does as much as she is capable of same with son2 (although son2 really tries hard and does alot considering his problems). 

Is your son eligable for the ndis? to get perhaps a support worker in to take him places and help out around the home? I have recently been approved and am having a support worker starting in July to help with cooking, cleaning and even going for walks with me to improve my fitness :).

Have a great day Dadcaringalone. Talk soon Love greenpeax

[Dadcaringalone]

@greenpea 

Morning Greenpea, really love receiving your messages and just realized it’s because we share so many insights and common experiences! The mindfulness is empowering for me because it stops me thinking too much during the tough times, as over thinking is often the root cause of a lot of mi as we find we can’t think our way out of tough times. Just being strong with the here and now I find is the key as all tough times pass and the better job you do now the better your future turns out.

Would love to get my son on an ndis package but his case worker and gov psychiatrist have said they wont help sign the documentation. He finds it all too stressful and all he gets is a basic youth allowance from Centrelink even though he is probably eligible for a disability pension. He’s been rejected over 8 times by them and this is a real trigger for him. I asked if the psychiatrist at uni would help and he said no and I know that even though we have a good gp she’s probably not sufficient for getting him on an NDIS package. All the other carers I know are the ones who got their care recipients on NDIS. At present we are just surviving on my carers pension for both of us but that’s being impacted by the little bit of casual work I’m doing so its a real disincentive to work if this gets cut by working too much. Not really sure where I go from here as if I work even more to make more cash to survive this will be cut then I will financially not be able to cope and the more work will mean I wont have the time to cope with my caring hours. It’s great you have a fitness trainer, I’m jealous!

Really look forward to doing the touristy things with my daughter. I get it about what you say about your daughter and son2. I would say they want to help you out but it’s a real struggle for them and it’s not worth the emotional breakdown if you push too hard so just keep them stable is the best course of action! I have some washing up to do in the sink after this and I can’t wait to do this myself!!! My daughter is great when she stays because she helps with these little things. For my son it’s a real struggle to just get out of bed and I am so thankful he’s currently coping so well with his studies and is not psychotic or manic.

That’s all for now and enjoy the beautiful sunny 🌞 day. Speak soon and I’m always just a chat away 

[greenpea]

@Dadcaringalone  Hey Dadcaringalone great hearing from you :). Did you know that you can get a ndis care package for yourself? I am on carers payment and yeah it is tough. If my son wasn't on dsp we wouldnt be able to pay the rent let alone anything else! It is really hard going. How soul destroying for your son to be knocked back 8 times for dsp! why I wonder? did they give you a reason? The system is so unfair.

My 'fitness trainer' is a support worker 🙂 . Someone who is trained up on mental health who will come in and help me prep food and keep me company while I go for walks to get fitter etc. If you could get a ndis package for yourself you could have a support worker too just to help for an hour or two around the house would be a wonderful break for you. It is just not right that you are doing it so hard.

I know what you are going through with son re struggling to get out of bed. I spend hours cat napping throughout the day am so exhausted with mi and medications. Daughter has a hour  power nap during the day which is so better than what she was like 6 months ago when she would be sleeping most of the day. 

Getting back to the dsp I wouldn't give up on that. My daughter has chronic depression and autism spectrum disorder, epilepsy and is transgender and she got it after a lot of work from her psychiatrist. My son2 has dsp because he is so disabled (autism, schizophrenia, epilepsy and mild intellectual delay) which is fair enough. Your son should be eligable ...... it is $1k a fortnight and with the health care card it really helps with the cost of medications.  Oh Dadcaringalone it makes the pea really mad that they have knocked your son back 8 times!!!!

I will have to somehow settle now as that has peed the pea right off .  Take good care of yourself won't you. Will talk tomorrow. Maybe a new psychiatrist could help.  Your friend always greenpeax