Friends, Family & Carers Forum

[Happydays1]

Hi everyone, I am a carer and have been since 1973.  I have cared for my former husband and both my adult children.  Caring was very difficult for many years and it was hard but I am still here.  I hold a post Graduate Certificate in Health (Community Mental Health) I use my skills to work with other carers and became a carer consultant for a large organisation.  I am not quite retired as I love to keep up to date with what is happening and I am a carer advocate.  I understand how hard caring can be especially in the beginning.  I look back on my life now and appreciate what life has taught me.  I love my adult kids dearly and I am so pround of how far they have come.  We are dealt the cards unfortunately but there is hope.  Look after your own mental health first and foremost. 

[Former-Member]

Hello @Happydays1
Nice to meet you. Is there a particular area of advocacy you enjoy?
Darcy

[Happydays1]

Hi Darcy, I advocate on behalf of carers and represent South Australia on the National Register through the Mental Health Council of Australia. I have done this for the past few years.  I am also on the advisory committee for Centacare as a Carer representative.  I am a member of the Health Consumers Alliance as a Carer representative.  I have run carer groups and find these to be most beneficial listening and learning from other carers - carers supporting other carers and the bonding together sharing experiences and getting feedback from other carers offering ideas and support.  I was employed by Mind Australia as a carer consultant representing all programmes in South Australia and undertook orientation with new workers, social workers and psychologists to make sure they were family inclusive when working with people in recovery.  I chaired the Advisory Committee making sure Carers and consumers had a voice.  All minutes of the meeting were shared by the Board.  I have a background in Community Development and Primary Health and this coupled with my lived experience provided me with the tools to work.  I have new retired from the workforce but still remain with the MHC on the National Register, Centacare Advisory Committee and HCA.  I am particularly interested in a whole of life and the communities in which people live.  I believe caring should be shared by all and not be a burden on just one family member.  It is about resiliance, respect and responsibility of everyone to pull together and give us a better world in which to live.

[Grasshopper3]

I believe caring should be shared by all and not be a burden on just one family member. It is about resiliance, respect and responsibility of everyone to pull together and give us a better world in which to live.

HOWWWW... I have been ringing around, desperate for help, but I can only get a psych to medicate my son to the eyeballs. I cannot care for him by myself, I am exhausted. Where are all the beautiful, caring fund-raising people? I have been a volunteer myself and gave it up to be with my son. I sacrificed so much to provide for him and now feel Govt, depts. wiping their hands and he's my problem, was and always will be.

[Grasshopper3]

sorry @Happydays1
welcome to the forum I guess....

[Rockpool]

Hi @Happydays1,

A warm welcome to the SANE Forums

You have had such amazing experience both being a carers yourself and then working to advocate for carers. It sounds like you have been doing these roles for such a long time now and have learnt a lot from it. You raise a good point here, that looking after your own mental health is so important.

Given your experience, are there things that you would recommend to other people caring for a family member of friend?

@Grasshopper3 sharing the responsibility for caring is a way to lessen the 'load' as you have mentioned here. I can hear that you are feeling exhausted by being in the role of a carer for your son and understandably frustrated that you feel he has not been able to receive the help/support that he deserves. Are there some things that you do for yourself that help you to recharge?

[Happydays1]

You are doing it tough.  I assume your son is living with you and I am not sure if there are any other family members who he connects with who may assist by taking him out once in a while.  Does he have any hobbies or interests that you can pick up on?  Carers Australia may be able to offer you some respite but I do not know which State you live in and if you are in a Metro area or rural area.  Find out if there are carer support groups around you.  I hear what you are saying and yes, I agree, people like you are doing it tough.  It sounds as though you need some support services for your son through one of the NGO's.  Speak to your GP because he/she will know what is in your area.  Church groups may also be of help.  Find out about what NDIS can do for your son.  Remember, it is the squeaky wheel that gets the oil.  Don't give up.  There is help out there but it is knowing how to reach it.

[Grasshopper3]

@Rockpool@Happydays1@mohill@darcy@patientpatient@Shaz51

So sorry I make this all about me again. but I am so frustrated. I normally work full time and sitting at home with my son who thinks he is a Zombie is exhausting. He doesnt talk, rocks back and fro, head between his shoulders or paces up and down outside when he smokes. 

I think at this stage I am just doing too much for him, but I dont want to leave him home alone with his own thoughts, he will sink deeper and deeper into this black hole. He says he's lost, his mind is blocked, he cant wait to take another pill to go to sleep. This is not living, this is being a vegetable! I need to go back to work Monday, who is going to look after him??

His next appt with his Psych is Thursday.

What am I doing for myself: I normally work, but being at home I ring overseas a lot, colour in, macrame, read about SZ try to keep up with work emails. Try to sneak to gym when he's asleep, but catch myself trying to get out of it too. We both try to go for a walk once a day, sometimes only 2 kms, other times 5 kms.

To answer Happydays1 questions: (yay I have found another lovely person who listens to my whoes:)

Son now lives with me since Feb this year, after being homeless for few months (well he was living in gardenshed for while on his dads block of land.) 

We have no family here, all overseas/interstate. 

He has an Aunty and Uncle here but their coping mechanism is not to see us. ("I dont understand", she writes me on Facebook, and that was last time I heard from her...)

We live in WA

Carers Australia can help me with peer support, someone can ring me once a week. I have declined that not good enough.They have once a month group sessions I have attended twice but dont get to say much as others use this time to vent which is understandable as this caring is bigger than Ben Hur.

I have found NGO here, GROW but son not interested at this stage.

He was supported in past by Hari Krishna's but since moved in, lost interest to see them.

NDIS:(only introduced in Jan17) my son says they ring him all the time. I happened to pick up phone y'day and spoke to someone from HelpingMinds and was told they applied for my son back in March so they ringing him once in while to see if he has heard anything.

@patientpatient, I hear you say I have to take my son back to Centrelink with this latest medical Certificate stating he is likely to deteriorate in next 2 years... and not wait the year until they ring for re-assessment (trying to change from NS to DSP, whereafter I can re-apply for Carers Allowance, got rejected too) I might not have to sell my car when I get that extra bit of financial support.

Also when he is on DSP, we could organise a carer for him. Helping Minds told me. 

Today a Clinical Nurse is coming to see us, yay, he had been sick all week. (why is there not enough funding for someone to step in? grrr)

I told my dad I have tickets to fly over in June (to celebrate his 80th birthday) but as situation is now, I have to cancel. I cannot leave him alone here for 3 weeks nor can he come with me) 

I feel another sacrifice coming up and my overseas family is going to be very very dissappointed if I have to cancel, my dad started to cry already 😞 

Thanks for listening to my story.

[Happydays1]

Hi Rockpool, Unfortunately this is the nature of Mental Illness.  There is no quick fix and you may be in for the long haul.  You need to set limits and try and find time for your own needs.  Work is important but due to your son's current mental state, this may need to be put on hold for a while.  Is your employer aware you are caring for your son?  I was always very fortunate with my employer and was permitted to take any time I needed and work from home.  My son was 18 when he was on a path of self destruction, sleeping rough, taking drugs and alcohol and was stealing from us.  He refused all help and caused so many upsets in the home.  I recognised the symptoms as his father was also diagnosed as chronic schizophrenia.  My son displayed terrible paranoia yet no one would listen to me.  They all said he needed to want the help before anyone could step in.  I was beside myself.  Unable to cope with work and I could not sleep.  I had to wait for a crisis before anyone did anything to help the situation.  My son was arrested and placed on a court order to take medication.  He was hospitalised and for the first time in a long time, I felt greatly relieved as if a great weight had been lifted from my shoulders.  My son spent several weeks in hospital and was then placed into supported accommodation along with 5 others.  We received family counselling in order to get back our own lives.  I learned about mental illness, reading up and joined a support group for my own benefit of sharing my load with others.  For the first time, I felt I was not alone and that people understood where I was at.  I learned to stop rescuing my son and he learned the boundries and expectations when he came home for visits.  I refused to lend him money but fed him when he was hungry.  We never looked back.  My son has been happily married now for over twelve years.  His wife also has a mental illness and they work through things together.  He is totally independent and manages extremely well.  He is on DSP and so is his wife.  They have called on me if they have a severe crisis but fortunately, he has good insight to his illness and knows who to contact when he gets unwell.  He has a good quality of life, good friends, he volunteers as a peer worker for MIFSA, is an active church member and supports people less fortunate than himself.  I have always encouraged him to make his own choices in life and allowed him to take risks and learn by his mistakes.  There is light at the end of the tunnel even though things may seem hopeless at this point in time.  You will stay on top of it and learn.  Be kind to yourself and spend some quality time with your son.  Do not let it take over your life.  Keep going to the support group when you can and do things you enjoy.  Keep a diary of your son's behaviour and pattens you observe so you can present it to his psychiatrist.  Is his illness only recent?  Don't let this thing beat you.  Learn and grow from it.  Good luck.

[Shaz51]

Hello @Happydays1, @Grasshopper3, @Rockpool, @Former-Member

A warm welcome to the SANE Forums @Happydays1

thank you for your message ,I sometimes find it hard to find the right Balance , and ends up me getting compassion Fatigue