Friends, Family & Carers Forum

[Stacey_N]

@Lauz  I used to become extremely hurt, often like my heart had been torn out and in the early days I would retaliate to some of the literally unbelievable things that would be said which would only escalate the situation until it made even less sense. I have had to learn that his perception of things can be way off track and perceived in a threatening, degrading or humiliating way which of course is never the case. Once the dust has settled, I sometimes talk to my husband about what I have said, what I meant, and how he perceived it. Sometimes he sees it, other times he doesn’t, at which I leave it at that. He also holds a lot of grudges, largely of his perceived interpretation of things. Some grudges he brings up are over 20 years old. It’s important that I don’t brush this off, but I deal with it through my own self talk and personal support.

How do others go about addressing behaviour that have really upset you?

[Determined]

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@Never_Lose_Hope wrote:
@EK1Families seem to be in the dark about how to help and what to do. It would be good to have specialist support for partners ie information and ongoing professional care. Getting lost in the system is common.

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I could not agree more.

[Stacey_N]

Absolutely.

[Jkay]

Hi, Im not sure if this is the correct way to post.

I have 2 children with BPD. It has taken 6 years for correct diagnosis for 21 year old. She finally has a referral for DBT which hopefully starts soon (and be effective). Yay!

The younger, now 18, is stll in process of finding the right treatment/health professional after 5 years of being dismissed as just depression & anxiety and not seeing improvement.

Its hard to see them suffering while trying to find the right help. She has dropped out of year 12. She also have Chronic Fatigue and Fibromyalgia which makes socialsing and maintaining relationships extremely hard. 

Being the carer for has taken a toll on me. Its isolating. I am thankful to have an understanding employer. Its constant hard work. I have to work hard on maintaining healthy relationships with them. It certainly builds resilience.

My main messages to my children 'I love you ' 'it wont always be this way' 'never give up' 'Im here for you anytime, just call' I feel so helpless sometimes but am determined not to give up.

[Lauz]

@Never_Lose_Hope thats really hard - I wonder if there is some information that you could share with them or resources? Sometimes as Stacey has mentioned being able to learn more about the drivers behind behaviour can help the situations before it escalates for both carer and loved one. There are some articles on the right hand side of this thread that might help!

[Stacey_N]

@EK1  There are many Carer Peer Workers coming on board now in paid positions, particularly in the clinical services who are there to support carers/loved ones. It is a growing workforce and is proving to be a great support for carers. 

[Never_Lose_Hope]

@Lauz Thank You Any advise or information is very welcome.

[Determined]

@Stacey_N I can relate to that also. 

We can never talk about things even after the dust setles at it only leads to more anger and tension. When I was able to work I used to stay at work until late when things were not going well. It reached  a point though when it was not safe to do that and constant  supervision was required during a melt down. 

I just try and calmly explain my position (I don't always succeed with the calm bit Unfortunately) and that I am only trying to support and leave it at that.

For me the feelings of hurt and rejection can be overwhelming. But I am getting some support in that regard now.

These forums have also been invaluable to me in being able to talk to people who really understand. 

[EK1]

@ Lauz - agreed having information re behaviour doesn't make life easier but at least it helps me to understand where my son is coming from at times - my biggest sadness surrounding the whole illness is his sense of isolation - he lost all his friends when he had to leave school at 16 and so rarely goes out - he has a lovely girlfriend now but she is his world and we have seen the consequences of what happens when he goes through a break up

[Lauz]

Hi @Jkay - you have done your first post perfectly. Thanks for joining us and sharing what you are going through. We have just been talking about managing the sometimes difficult behaviours that can come up within BPD, you can always read back over the beginning of this thread later on!