Friends, Family & Carers Forum

[Appleblossom]

Thanks for your well wishes @Dadcaringalone

I am seeing blossoming of my apple that fell close to the tree.  Ie My son.  He has a different Dx, than your son, but I know the heart wrenching feelings when he is not doing well.  

We want them to be taken up within the community, but it seems a slower process when they are also battling MI.

[Dadcaringalone]

@greenpea

Greenpea, I am very impressed with you doing the mindfulness course! I want to make it very clear though that I am not advocating for a meditation over medication course of action. This can be a very slippery slope and needs to be closely supervised. I was the course manager of a meditation retreat a few years back where a participant went off her meds hoping for a miracle cure and became psychotic after accessing some repressed memories in her subsconscious mind. She didn’t sleep for 3 days and was later admitted to hospital to be prescribed something very strong to calm her down so she could sleep. I was the only one who recognized the psychosis because I’d seen it before with my son. There has been some criticism of him in the UK for this reason I believe. If it does help you get on top of things then that’s awesome. I couldn’t manage my son if he wasn’t medication compliant and I am pretty confident he won’t because he’s absolutely petrified of his voices who it appears from recent relapses are terribly violent and scary. What I do like about the approach of Rufus is how he uses mindfulness when he does a type of walking meditation which I believe could help enhance the benefits of pacing up and down my son does sometimes when he’s really anxious. I also really appreciate how he looks at the voices in a non threatening manner and the support discussion  groups that have sprung up globally to encourage people to not view them as being something negative like we do in the West. My own experiences of mindfulness focus on very simply observing bodily sensations continually to instantly be in the here and now, taking myself away from the suffering we a create in our minds. I pray that one day my son is in the right state of mind where I am able to share these transformational skills with him which really saved me a few years ago when things were particularly dark with what the family had to deal with associated with my son’s undiagnosed schizophrenia when he was prodromal and we didn’t know what was happening.  I am not at all worried about presenting my conference paper, all I am concerned about is finding some “me” time to knock it into shape over the coming week. Take care and I hope the new dawn brings sunshine and brightness into your family’s lives.

[greenpea]

@Dadcaringalone Yes I am really looking forward to doing the course but don't worry I won't be going off the meds anytime soon that is for sure. Going back to hospital in a psychotic state does not appeal at all ....  Funny (not really funny but you know what I mean) that your son paces as my son paces so much he could wear a hole in the carpet. He loves going for walks too I think to calm his mind. 

Good talking with you Dadcarlingalone. Keep in touch and let me know how you are going. Love gp 🙂

[Dadcaringalone]

Glad you see the importance of staying medication compliant @greenpea. I am sure you will gain a great deal from improving your mindfulness which slows your mental processes for a period from which the great benefits of this approach stem. My son also paces so much I have not considered replacing our carpet any time soon! I find I can’t watch him because I get dizzy.

We have our good and bad days. Yesterday was good one because he met his work boss who is really understanding of his condition, gave his a big hug and an awesome Disability Officer who is definitely in a job which is her vocation and not desensitized like the majority. We are seeing his Psychiatrist today which he hates, so I suspect today will be pretty volatile! Sometimes I think how can I keep dealing with all of this alone, I just try to keep calm by going back to mindfully observing my body, have an early night, while the carpet is getting paced on outside my room then I wake up and it’s a new day and we go through it all again. I try my best to see the beauty from the small often inconsequential things in life and the little wins like we had yesterday. Stay strong, happy and always remember every day bring a new dawn of pea’ce... 

[greenpea]

@Dadcaringalone Good morning 🙂 I am so happy for you and your son that he has a wonderful boss and a 'awesome Disability Officer'. That makes all the difference doesn't it. To find someone who does a job like that (which would not be easy) and obviously loves what she does.

Good luck with your son seeing  his Psychiatrist today .... wishing you well as I know how hard those consultations can be. I know the feelings that you have with dealing with this alone. My ex is in total denial over my son's schizophrenia ....it amazes me sometimes when he comes to see him that he cannot see the level of delusions etc. that my son has.... anyway what can you do but soldier on and was you say so correctly  'wake up and it’s a new day and we go through it all again.' 

Your words give me great comfort Dadcaringalone I appreciate your online friendship 🙂

[Dadcaringalone]

Dearest @greenpea

I also appreciate your online friendship.

Thanks for sharing about your ex etc, my own experience mimic yours in many respects. I am not comfortable sharing the full details concerning my own personal relationship pressures with my wife concerning my son and his mental health illness. All I can say is that it has put me under enormous financial and emotional pressure, and she has never ever seen anyone about her own issues,and me and my family have always been seen as the root cause of my son’s schizophrenia. I am continually told by my son and wife to keep everything strictly confidential which means I am not able to use my own method of sharing with others to help me cope with the enormous weight on my shoulders. The appointments this morning where a great success even though he slept in and forgot his morning meds. I was the usual boxing ball receiving the emotional pressure punches on the way to the Doctors. All is good for now.

Take care and look after yourself 

Dadcaringalone xxx

[Libra]

Hi @Appleblossom@Dadcaringalone@greenpea and all here.

I had to write to tell you all that although I haven't been writing much, I have been reading all posts with much interest and enjoying the new friendships. It's nice to be around people who understand what we all experience on this wonderful rollercoaster ride they call life!

My son 29, was diagnosed last year with schizophrenia, and I recall the Dr at the time asking me how I felt about that....I was just pleased that FINALLY the hospital had kept him in long enough to find out what was happening and the treatment could begin.

It's a year later and he has been on a community treatment order for a year. He is on fortnightly injections and a sedative for calming. He doesn't like being on the CTO and his psychiatrist has let him know that it would be in his best interest to follow it on for another 6 months....we tried to explain to him that he is doing so well and he wouldn't like to have to be put back into hospital again.

So, it's off to the hospital tomorrow for the tribunal meeting...

Dadcaringalone, I too have been using mindfullness to slow the panic I used to slip into...I feel it, acknowledge it, sit and wait for it to pass...worrying won't change anything.

Thanks for listening, I've been feeling very flat this week, so I thought a good old "typing it all out" would help,lol.

Cheers, Libra xoxo

[greenpea]

@Libra@Dadcaringalone HI Libra and Dadcaringalone hoping you both have a calm and 'pea'ceful day :).  Libra good luck with the tribunal hearing tomorrow, I can only imagine how hard it is get encourage your son to have his injections ... I know I would not like to have injections and would fight it tooth and nail against it so he really is proving himself to be a very sensible young man.

I am really looking forward to my ACT classes in a couple of weeks now (am counting the days). Have also been feeling flat of late put it down to old agem mi, son's mi, daughter's mi etc etc. Will go for a walk tomorrow and they might perk me up.

Take care everyone love greenpea

[Dadcaringalone]

Dearest @Libra @greenpea @Appleblossom

I throughly emphatize with you Libra, its terribly what you have had to go through! It’s a pity that the medical establishment put all there efforts in those clients who have the most difficult to manage Schizophrenia cases, high performers and the carers are often forgotten. I got arrested by the Police for restraining my son when he was really bad and unmedicated/undiagnosed and was attempting suicide because of command hallucinations. I would do it again because all parents do anything within their powers to save the lives of their kids, its our innate protective mechanism as parents of our offspring. It’s terrible when they are sedated and medicated but I’ve unfortunately seen the other side! I would love to be able to find a miracle cure, but unfortunately there isn’t any as yet and what’s really hard for carers is the fact that its a long term commitment, all my work, often social life etc regularly gets put on hold to manage my son’s challenges. I always warn him that he’s taking on too much and I can often see us getting on another roller coaster as you nicely put it Libra.

After our run in with the Police I got even more into mindfulness meditation as a coping mechanism and it has really helped! On a daily basis I feel regularly completely overwhelmed because my son is full-on even after being on medication and I find I’m doing all the cooking, cleaning etc and even though my son’s case worker has told him to stop being lazy and help his dad out, at the end of the day its just better than having a 3rd world war, that I do it myself.

I dearly hope mindfulness can help you tomorrow at the tribunal, if you get beyond your limits just come back to being centred by observing your bodily sensations and just go with the flow because you will find the tribunal will just take on a life of its own and you will have a better outcome if you a mindful and stay calm. All the best to you especially @Libra and I send you a lot of love and positive vibrations.

Just waiting for my son to throw out some rubbish he has been promising to do for days, before I agree to do something for him. When I get over my limit I find I need to be firm, not strict, so our household can function and I don’t find we are living in a pig sty!

All the best to everyone out there just  trying their very best to just keep truck’n...

[greenpea]

@Dadcaringalone@Libra Hi Dadcaringalone you made me chuckle a bit with the 'pig sty' comment I am pretty lucky renting because I say every four months that we are having an inspection that that I have to clean up his room thoroughly because the realestate people are coming and my son2 seems to accept that.

I have a phobia about the police due to my mi and so does my son. Does your son have a phobia too about police? We had to call them so many times at the end I think I used them to get all my anger out on when my son and I got so sick. Anyway I am medicated now (thank god) so there won't be any arrests I hope in this house now or in the future. 

Oh the exciting lives we lead aye? Who would have guessed it when they were tiny babies. Greenpea