Friends, Family & Carers Forum

[Determined]

Herimg you on the 'permission to walk away' @SJT63 

This is actually one of our boundaries but doesn't always work out very well. (Walking away is perceived a s rejection / not caring and /or me being angry).  

[SJT63]

@Former-Member no he finds that almost impossible. I ask what I should have done differently, or what I can do to avoid it but he insists that I am wonderful and he doesn't want me to change. He says it's his fault and not mine, and I try to point out that it is no one's fault.

He does say that until he is in full flight there is a tiny corner of his brain that is still connected to reality and he tries really hard to stay connected... then can't. Mr Hyde takes over and he becomes a monster that he himself cannot recognise. He doesn't want to be that monster. He says he will try harder.

We both know that is way too simplistic. 

[FindingStrength]

Hi @SJT63 

I'm not an expert by any means, however I have learned a little about the Carers Recognition Act 2010 (See below statement, No7). Each State also has 'Carers Rights' legislation that outline our rights pertaining to involvement with information regarding treatment for the person we care for, so perhaps check the one for where you live. If your partner has difficulty in remembering, then depending on the local Bill of Rights, you may be able to ask for information, especially as his treatment directly impacts your relationship within the caring role and it sounds like things are quite unstable at the moment. Maybe his GP is not even fully aware of what is happening...

I've found that having better sharing of information has really helped, my daughter is an adult & is aware that I receive information about certain things & that I will advise of certain things.

I hear you about the guilt, threats & escalation as that is the same with my daughter, so yes those are difficult subjects. I didn't exactly mean responsibility in that way, of course its the best he can manage in that moment & changing behaviours is hard for most people without the added issues of MI. It takes me a while to process the events (I think that is pretty normal) & during this year I felt myself slipping from intense & prolonged stress which made the processing even harder. I've had to work really hard at separating out her 'stuff' from mine & becoming more impervious to the behaviours. I feel that most of that came from letting go of guilt, over-responsibility & over-care on my part. And from recognising what I would & wouldn't allow - Gawd, boundaries are the hardest thing to establish!

Also, I found a Carers Advocate through Helping Minds (Highly recommend that too, they are WA only but look for similar in your area) who helped me to decide to call a Case Management meeting with all the people involved in my daughters treatment, which she also attended. This also helped everyone get onto the same page (including her) & make some agreed upon plans - especially from her point of view. I don't know if that is appropriate for your situation, but if you can somehow bring the separate pieces together will give a more consolidated team.

Would family counselling be an option for you both? He obviously cares about you or he wouldn't feel bad about his behaviour, so it might be possible to get some assistance to sort through some of the dificult matters... 

I really wish you so much positive progress - luck just isn't enough, but I think you'll know what I mean. Take care of you too. 

Schedule 1—The Statement for Australia’s Carers

Note:       See section 6.

               1  All carers should have the same rights, choices and opportunities as other Australians, regardless of age, race, sex, disability, sexuality, religious or political beliefs, Aboriginal or Torres Strait Islander heritage, cultural or linguistic differences, socioeconomic status or locality.

               2  Children and young people who are carers should have the same rights as all children and young people and should be supported to reach their full potential.

               3  The valuable social and economic contribution that carers make to society should be recognised and supported.

               4  Carers should be supported to enjoy optimum health and social wellbeing and to participate in family, social and community life.

               5  Carers should be acknowledged as individuals with their own needs within and beyond the caring role.

               6  The relationship between carers and the persons for whom they care should be recognised and respected.

               7  Carers should be considered as partners with other care providers in the provision of care, acknowledging the unique knowledge and experience of carers.

               8  Carers should be treated with dignity and respect.

               9  Carers should be supported to achieve greater economic wellbeing and sustainability and, where appropriate, should have opportunities to participate in employment and education.

             10  Support for carers should be timely, responsive, appropriate and accessible.

[Kit]

@Gemma20 I'm a first time poster. Just have to say 'Wow.. thank you'.

This is my story also .. a few differences. It's my youngest son, now 24. He has suffered anxiety, depression, panic attacks, anger outbursts & arfid eating disorder since about 5 years old.

My husband (his father) died suddenly in his sleep when my son was 17.
I haven't been strong enough to cope with my son alone. He has made a suicide attempt about 4 years ago. I found it hard to get real help for either of us.

I have moved & renting a small unit nearby. He is numbing his pain with cannabis & alcohol which have resulted in two run ins with the law. 
He finally has some casual work.
So hard to find help we can afford & out of business hours or late in day. As he has a dual diagnosis (& more) I don't know where to start to try again. He has given up as we have not been successful before.
Neither of us can afford to lose our jobs.

I feel my whole life evolves around keeping him alive & I am terrified of losing him. I have become a nervous wreck.

Please, any ideas for help with Comorbid issues & how to start again?

[Shaz51]

hello and hugs @Kit , @Former-Member , @FindingStrength , @SJT63 , @Determined 

sharing a link Carers Hints and tips to Success 

8 dimensions of wellness 

[Gemma20]

@Kit I am so sorry for the late response and sorry to hear about the challenges you are facing, not going to lie it is so hard!
I have been managing to ride through the latest wave of my daughters mental health episode. My daughter was taking meds and came off them suddenly which caused her episode. On a positive note she now understands how stopping meds suddenly can cause an escalation in her mental health symptoms like aggression, physically and emotionally leading out, despair, anxiety.
Trust me I really understand how tough it can be for them but particulary for the carers who are often forgotten. I wish there was an easier answer for you. For me, it took time for me to accept that although I am the mother of my child I am not able to fix this for my daughter, particulary now shes an adult. This is a very hard thing to accept and it was like a greiving process for me when I finally realised my daughter does not want my help. My daughter is an adult. My daughter needs to take responsibilty for her own mental health and I needed to start taking care of myself. Not an easy thing to do but when you give your heart and soul to support your child and get abused and are at breaking point yourself you really need to take a step back and focus on you. By doing so you are allowing them to grow and also have the strength to keep going. They know you will always be there behind the scenes should they need you.
I highly recommend headspace for your son. Free service and is for youth, they have excellent services for mental health and assist with substance abuse too. Like you, my daughter has multiple issues, mild brain injury from a car accident, Borderline Personality Disorder and uses marijuana to self medicate. She suffers crippling anxiety and fear of change. Is working part time in a job she does not like but fearful and lacks confidence of trying anything new.
She started Medication approx 6mths ago & she says helps calm her. She just changes to someone I just do not recognise when shes having an episode. Its heartbreaking to watch, seeing her in so much pain and knowing there is nothing I can do to soothe her. She attacks me if I try. I have learnt to give her space.
After her last mental health episode I was left with bruises. Police attendance 3x that week and like you it has left me jumping everytime I hear a noise, or a child in street screaming I jump and think is that my daugter having an episode. Its traumatising for carers almost a kind of Post Traumatic Stress disorder.
She's remorseful after the incident and seems to just get on with life like nothing happened and I'm left with the emotional & physical wounds and at times I feel anger at how she can treat me this way?
So back to laying out bounderies to her again.
Violence will not be tolerated. I have her rules that she needs to abide by if s he is to continue to live at home. My husband stated how much this has affected the family and she needs to continue meds.
She agreed that coming off meds was a mistake.
In the meantime she has found a friend looking for a roommate and has decided to move out in a weeks time. I truly think this will be best for all of us. She will need to grow up & be responsible for herself and hopefully our relationship can be rebuilt with some distance.
My only advice is accept that you can't fix this.
Set strong bounderies if your son is ask adult living at home. You have the right to live in your home and feel safe and comfortable. Encourage him to seek therapy, Headspace are brilliant.
Ensure he pays board (even of you secretly put the money in an account for him). It is less disposable Inc o me he will have for drugs & alcohol. If he does not like your rules he is an adult and can choose to move in with friends.
Please seek counselling yourself. Sane helpline is great to talk to someone. Thinking of you and wish you and your son well.

[Shaz51]

Hello @Gemma20 , @Former-Member , @Kit , @FindingStrength , @SJT63 

how are you going today , catching up on some hints and tips today to help xx

[FindingStrength]

Hello @Shaz51 & other carers.

I haven't been on the forum for a while, life got more challenging here with weekly occurrances for about 5 weeks solid. Then 3 weeks ago daughter was pressuring me into doing something last minute that I just didn't want to do & it escalated again into the usual blow up/suicidal threats/self harm. When I told her I was calling the police she stopped that & began arguing. (Removing myself from her behaviours just hasn't worked as she escalates more). 

After about 45 minutes waiting for the police & defending myself, I cracked & said I couldn't do this anymore. The usual police/hospital/awful texts/discharge process...

I advised I wouldn't be answering my phone for a while & had left the property for some relief. She decided that I was kicking her out & abandoning her. Honestly I was so dysregulated myself at that point that I wasn't going to argue about it.

So, when discharged she packed some things & the cat & left. Staying at a friend's & has just secured a rental. 

I have had some assistance from Helping Minds & counselling to set some boundaries & address self care etc. GP has diagnosed me with mild depression & PTSD, so very very sadly & heart-brokenly, I'm having to step back. 

There is just so much in this complicated & disfunctional web that I can't communicate it here. I'm just processing many conflicting emotions & setting up some therapy for myself. My daughter (19) has her own therapist, support worker & a few friends, so maybe its time for her to find her own way for a bit. We did have some text messaging last night for the first time - it started from her with an accusatory text & when I found out she had taken a whole lot of household things while I was out & let her know that it wasn't ok & she had to bring them back. Anyway, we eventually got to exchange that we both feel hurt & sad. (I also reaffirmed that I love her, want to be of support in a way that is ok for both of us & never ever ever intended to cause any hurt). Maybe there is possibility for repair & structuring our relationship to be more functional, but this could be a long & slow process.

Wow, hadn't planned on writing that much...

Our relationship had become destructive & I felt like a servant who was just enabling the behaviours. That's not going to help her or anyone else. Tough love? Self preservation? Too little too late? Time will tell I guess..... 

Much compassion to ALL of those out there who are struggling within the many experiences of MI..... 🙏🏽 

[Secondone]

Gemma. I am not sure how this works. But I sent a reply the other day and not sure if you received it. I really can sympathise with what you're going through. I too am feeling the same.  But letting go is never easy.  I am there for my daughter but like you have set some boundaries because no matter what I do she comes back at me with abuse / bullying about how I don't care for her etc etc. and I too have to look after myself. I have taken to counseling when needed  and used mindfulness etc. but  the emotional pains sits there.  I am lucky so far that it hasn't destroyed my family completely as the tension that arises can dishevel what I have tried so hard to build . I now have 4 beautiful grandchildren who do bring joy  to my life and I feel blessed to have them.   Hoping that we both have some respite !!  Cheers for now 

[Former-Member]

@Gemma20  ^^^^