Friends, Family & Carers Forum

[Janna]

Today has been a difficult day.  All my insightfulness, my strength, my understanding, tolerance and acceptance has just flown out the window as I face another stark reminder of how bad my son's mental health issues really are.  I took the initiative a few days ago to organise a get together with my son and his friends and their parents.  My son knew about this and was positively receptive.  "We" are a nice group of parents, all with sons, that share a common thread - we (being the mums) are all separated and have all had our fair share of exposure to abuse and mental health issues.  I'm gifted to have this group in my life and so is my son because they are a truly supportive and non-judgemental group of people.  Myself and another mum oranised this get together for Sunday 15th Nov, however this somehow got lost in translation and got mixed up with today.  I received a call from one of the mum's today to say that this mix-up had occured and that "the boys" were all coming over to her house today.  I told my son about this and expected an excitement and eagerness to join them, but was overwhelmingly dissappointed to find that he could not cope with the "last minute" nature of this and opted out.  I spent at least 45 broken minutes trying to get my son motivated to meet up with his friends, all to no avail.  The more I tried to encourage him, the more withdrawn and defiant he became.  This to me slapped his mental health issues into my face - when a boy does not want to hang out with friends that he deems as being his "best friends" that's really saying somthing ... isn't it?

My son has since chosen to sleep - to roll over and block out the world.  Meanwhile I've beem catapulted into a bad zone where I'm struggling with overwhelming emotions about him --> my life --> what I should have done --> would I could have done, etc.

Whatever my son's internal demons are, they are strong.  Strong enough to resist doing something that he loves and enjoys.  Strong enough to override everything.  All his mates had gathered today for the sole purpose of seeing him and yet this was not sufficient motivation to get my son out of bed, let alone out of the house.

It was, and still is, a very cruel reminder of how bad my son's mental health is.  The sooner this residential care thing happens the better.  I certainly can't do this alone.

Janna ❤️

[Appleblossom]

Sorry to hear that this happened @Janna.

It is just so hard being a parent ... we try and do the right thing .... but real relationships in life are so frail and delicate at times ... just keep respect for your efforts as you weather the next few years.

Vulnerable people often cant take sudden chnges as it takes them a lot of time and energy to build up to social events in the first place ...

I dealt with a great difficulty getting son out of the house and in the end ... have just made it clear that I will always invite him along but that he is truly free to say yes and no ... I have maitained that stance for about 8 years ... its hard for me to accept his "no" but eventually he added a few "yeses" and slowly starting getting out.

The residential care place will probably change your dynamic a lot ... I wish I had something like that for my son ... but we all walk a different path.  It is what it is.

My son and more recently I have retreated into sleep a lot too ... it is a symptom ... but it can also be healing as well.

[Durango]

Hi Janna, 

It can be very difficult caring for a loved one with a mental illness. Sometimes the best you can do is just be a loving parent, gently encouraging your son but not setting expectations. It is really important to take care of yourself and to continue your own friendships and relationships also as your example will help your son.

Take care,

Durango. 

[Janna]

I'm feeling better today after the dip over the weekend.  My son was able to get to therapy yesterday which was a good sign.  I think my expectations were a little too high on Sunday because I expected my son to consider hanging out with friends motivating enough to get up and go.  Wrong!! I have a nice couple of days coming up on Friday/Saturday with a girlfriend - a bit ot time out and a change of scenery will do wonders.  Kicking off this Thursday with the outpatient program and hoping that this will infuse some positivity into what can often look like a very grim situation.

Many thanks for your responses.

Janna ❤️

[lostfound]

Coming to the terms of understanding of your situation. Maybe this is one thing that you can try out, but, i am not sure it works or not. Better try than regret it later.

Instead of going out together with other people, just slowly and without purpose asking. Ask him to go to glocery with you to buy something small. Have a dinner out to somewhere does not need to pay too high. Just do something with him every now and then, as he gets comfort with your company, slowly input more friends to join the outing.

Most important, he must get comfort with you and the surrounding. You might need to work this out for at least two and a half months. After he gets the trust towards you, you will be able to understand his thinking and his situation with this sickness. Then, from there you could at least have a better chance of getting him to think stable again. He might not turn out to be like before he got sick. However, definately situation could get better.

Remember, small outing with you only, and get his trust, then understand the situation. Most of all, the ending result will be supporting him for at this stage or at any stages, he needs your support strongly.

Good luck. Hope this help. Remember, he might not tell you his thinkings, but, he is going through his life in bad shape too. Not only your life is going downhill, his life is going downhill too. Try my advice.

lostfound.

[Lucy]

Hi Janna, glad to hear you're feeling better. The time with your friend sounds good. You are fortunate to have a circle of good friends. It certainly is demanding caring for a loved one with mental ill health. My young daughter was diagnosed with schizophrenia early this year. The impact has been huge and the adjustment required is ongoing. Fortunately, she is stable, compliant  and well monitored. I find working is a much needed relief and provides an alternative world to my daughter's ongoing care needs and situation. l experience loneliness as a result of being catapulted into the world of mental ill health and all that comes with it. Caring for my daughter

has required a very deep change within me. It has taken time to recognise and understand the changed landscape/circumstances of my life. I'm hoping to find a carers group or something l can be a part of on a regular basis. I realise l can't expect the average person to have much of an idea of the effects of being a carer such as l/we are. You mentioned a residential service, if l understood you correctly, for your son. I'm wondering what that is. Hope you're having a lovely day. Take care 🌷

[Janna]

Thank you so much for your replies and suggestions.  Things have been and are a little better right now.  My son and I attended the first outpatient program last Thursday.  Given that there were three families and that he was the only child to actually participate in the program is positive.  One was a no-show because the parent could not get their son there, whilst the other got her son there but he would not move from a chair in the foyer.  That ended up making my son look good - not only did he get there but he participated despite feeling awkwardly alone. This first session was also for parents/carers as well.  Myself and another mum of the 16 yo boy in the foyer spent 4 hours meeting with the entire team individually which will be looking after our boys once they progress into residential care.  Clinical psychologist, social worker, school principal, nursing unit manager and psychiatrist.  The program sounds wonderful and tackles every issue collaboratively.  Family involvement is a big part and I must say I left feeling overwhelmed and doubting my capacity to cope in the future.  Somehow I have to build his program and my inolvement into my schedule and I know this is going to be difficult.  He has session number 2 on Thursday and then only three more to go after that.  It is a mandatory requirement that this outpatient program be completed prior to full admission and if all goes well he will be ready for that early next year.  He and I are going out this evening to have dinner with his friends and their parents - another positive step.  

@Lucy - in response to your question about the residential service.  The service that my son has been accepted into is a joint Dept. of Health/Dept of Education facility which specifically caters for children with psychological issues that are affecting their ability to attend school.  There are several different types of programs.  The one that my son has been accepted into specifically caters for children with severe depression/anxiety.  So he is admitted as a patient via the Child, Adolescent & Family unit of the Dept. of Health who then work together with the Dept of Education (school part) and develop an individualised learning plan whilst he is also receiving clinical care.  The residential component is fundamentally like a boarding school - he will live in the residential wing under the care of clinicians and nurses Monday to Friday and come home every weekend.  The entire program is broken into treatment phases - preparation (which is the outpatient programe he is in at the moment) then planning (a pre-admission planning meeting to set goals/outcomes etc), then practise which is when he is in the residential programe and then transition/integration and consolidation.  The aim of the program is to reintergrate the children back into their home schools.   Hope this is helpful.  

Janna ❤️

[Appleblossom]

Glad things are looking up and you are managing.

Do you know how long these arrangements have been available .. I am wondering why they werent made available to my son.  He school refused from year 7 term 3.

[Janna]

Hi @Appleblossom

To be honest I can't say that I know how long this facility has been operational but I am thinking it is a long, long time.  My son's school counsellor, who is a mature lady, told me that she recalls going there when she was training many years ago.  Also the history of the facility (which I just read) says that it was transferred over from a trustee to the Dept of Health in 1979.  I'm not sure why this was not offered to your son - perhaps your clinician/psychologist or whoever were not aware of it.  You need a referral from either a psychiatrist or psychologist to be considered.  Additionally the school needs to raise an access request form for an SSP school.  Any child who struggles with school attendance should come to the attention of the school counsellor or student welfare officer who will apply for a placement in a specific purpose school.  In my instance the school counsellor, my son's psychologist, psychiatrist and myself have all worked collaboratively to achieve this.

Janna ❤️

[Appleblossom]

From your descriptions ... my son seemed very similar ... When he was 13 yo... with a Youth assessment service mhu, there was one vague mention of a possible referral to a special school for autistic children ...  my son had just been diagnosed aspergers  ... they considered if he was prodromal ... but then said he was not ... but warned me I was in for a difficult time ... there had been little change in son's behaviour ... just him and I in the unit 24/7 trying to make the time quietly productive ... with small amount of part-time work and private study ... he had a most serious psychotic episode 6 years later .... where I was alerted by the ambulance at emergency at local hospital. Though I knew he had left house in disturbed state that day ...  I had NEVER seen him that way before.

my exhusband (scizophrenic - exschizophrenic?)  is very proud of intellectual achievement, his brother was a professor, etc and there was intellectual one-upmanship with treating team.

If it had been worded at all strongly ... as a clear reccomendation ... I would have pushed it ... but my husband and son agreed they did not want him to go to a school for autistic children ...for some reason it was not seen as depression ... though his behaviour looked pretty depressed to me ... but I was also exhausted, disabled and depressed, and eager for advice from experts ...

Not to detract from your good experience @Janna ... I am just glad to talk with a mum with some similar type of experience ... I think I have been too isolated ..much  more than the average. 

Trying to figure out whether I did my due diligence for my son. Whether he might have done better with  a big structured situation you are describing ... or whether the quiet one-to-one at home was best ... I know I cant change the past.

Note: Today we had a lovely day ... I met him at an opera rehearsal in town ... after he had been with a friend ... and then they were invited to hang out for a bit and I was invited to go home alone ... and he would follow when ready ... when he came home 7ish ... he asked for take out and we watched a movie together ... so it was all very peasant ... and I had no trouble being left out of his social scene ... relieved rather ...

It is nice that this chorus has a wide age range ...  young ones from uni ... and some oldies like me ..

cheers