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The Carers and Young Carers Strategy for Scotland 2010
Good Practice: Carers and Young Carers Stories: Caring Together and Getting it Right for Young Carers: The Carers and Young Carers Strategy for Scotland 2010-2015 Previous | Contents | Next id='readspeaker'>Listen
11. Parent Carer: Carer for daughter with border line personality disorderI am 49 years old, I have two lovely adult children and am happily married. My husband and I have worked hard all our lives and tried to bring up our kids in a loving and nurturing environment, where they were loved and respected for the individuals that they were and encouraged to love, respect and embrace their own individuality as well as others. A change we could never have foreseen. A change that would rock our whole family foundation to the very core. We entered into the world of 'mental health' and since then have we been on a roller coaster. Looking back over the nine years, had we all been offered the support needed, things could have been so different. Had our daughter been 'listened' to properly, things would have been so different. Had we been listened to properly how different the last nine years would have been.
I could list pages and pages of bad practice and ignorance, that we have encountered, along with so many other users/carers within the NHS Mental Health System. However, like so many others I realise that to do so creates negative energy and could have a direct impact on the care my adult daughter may receive in the future, and it may close more doors than it opens.
For many years, in fact each time our daughter had been hospitalised, we had asked if there was anyone we could talk to about our daughter's mental health and advice on how the family should deal with it. In all nine years we were never once offered help. Never offered the opportunity to discuss my daughter's diagnosis, or how this diagnosis was reached, even when it was changed by four different psychologists/psychiatrists over a period of two years. No-one asked us for any input, or any family history. Yet each time we were left to pick up the pieces with no information on how to handle this new diagnosis, no information on the medication and no mention of any aftercare. Each time we were left to sift our way through services to try and find appropriate care, in between hospital stays, for our daughter.
At the last hospitalisation, I remember I was given a book, from the mother/carer of another in-patient,[link widoczny dla zalogowanych], who thought it might shed some light on things! After reading the book "I hate you don't leave me" I wondered why on earth something like this had not been suggested to us before. It answered so many questions for us and also helped to explain so much about my daughter's behaviour, yet it took another mother to point this out to us. Reading this book encouraged me again to ask for help.
I asked one of the nurses if there was any family therapy available where we could discuss my daughter's mental health, the behaviour and the impact it was having on the family. I was aware by now that there were some issues regarding my daughter's behaviour that seemed to hinder her treatment and her relationships with professionals. Yet the more I read about border line personality disorder I realised that surely professionals should realise that when dealing with borderline personality disorder the fact that the patient moods change so frequently, and that some of their perceptions and interpretations become so distorted, surely it would help their treatment enormously if they were able to access consistent observations from loving family members over a prolonged period of time. Surely that kind of information would only help both the professionals and, more importantly, the patient. However, never were we asked to contribute to any of our adult daughter's treatment plan.
I believe, through this chance conversation with the young nurse, that I somehow came under the NSF Scotland radar. The day we met with Highland carers' officer was a real turning point for us. For the first time in seven years were we able to talk freely and openly about our daughter,[link widoczny dla zalogowanych], her illness, her treatment and the impact it was having on all of us. The carers' officer not only listened, but could truly empathise with us as he too was also a carer of someone with mental health problems. For the first time in years we did not feel judged, we did not feel as if we were to blame,[link widoczny dla zalogowanych], we did not feel we were on our own.
We were given some terrific advice regarding encouraging our daughter into independent living and encouraging her to take on more responsibility for her treatment/recovery. Even though we deep down knew these things, to have them validated and to be told it was " OK" to do this was so heart-warmingly reassuring and what we so needed to hear. To also be able to speak to the carers' officer on the phone during the next few years when things went from being stable, erratic, crisis and back to stable with regards to our daughter's health,[link widoczny dla zalogowanych], it was such a comfort to be able to be honest about things, not to feel judged, not to be told you were doing things wrong, but just to be listened to and encouraged and told that you were in fact doing the right thing; that you were not responsible for getting the right treatment for her, but that by always being there, being supportive and loving and accepting her, you were valuable. In fact this was the first time, seven years after our daughter's first diagnosis, that someone had called me a carer. Was that what I was? I had to laugh to myself. I remember so many times, waiting for our daughter in yet another waiting room, looking around the walls, reading the odd leaflets, and wishing that I was a carer, they seemed to have so much support out there,[link widoczny dla zalogowanych], whereas my belief was that parents were left out in the cold!! Maybe it wasn't so much that the literature was wrongly worded, maybe it takes a certain time in your journey to realise, or for someone to tell you, that you are in fact also a carer. I so wish all psychologists/psychiatrists would tell the person who is mainly responsible for their patient's after care, that they are in fact a carer and as such entitled to any carers support available.
Anyway the carers' officer of NSF (Scotland) was a Godsend. There seemed to be so many times that he just seemed to call at the right moment. As most carers will recognise,[link widoczny dla zalogowanych], we seem to walk about with a tight ball of tension most of the time. You can't release it by talking to just anyone, you feel so disloyal. However,[link widoczny dla zalogowanych], the NSF (Scotland) carers' officer would phone and after his phone call I would realise that the tension had lessened greatly, just by being encouraged to talk about things. So thank you, NSF (Scotland) because I don't know where I would have been without your support. A few years later I received a call from NSF (Scotland) asking if I would be interested in attending a Prospect Training Course for Carers. Of course my first reaction was, is this not for "real carers"? Would I be taking a place away from someone who really needs it! Surely there must be someone more deserving of this! I am so glad that I was encouraged to attend this course. Prospect Training for Carers: What can I say about this course? Well for anyone that knows me they will have heard it all before. I cannot praise this course highly enough. I do not have the grammar nor the vocabulary needed to do this course justice. So you will just have to bear with me.
Attending this course I was a bit apprehensive and scared. Would all the others carers be 'real' carers and have relatives that were far more in need than me or my family. Would the facilitators be patronising or condescending, telling us to breathe through our nose/ listen to sweet music and regain our independence? Would I be asked personal, awkward or embarrassing questions?
From the start the facilitators were absolutely fantastic. Each one brought with them their own compassion, insight, history that surely can only come from someone who has shared similar experiences - and survived. They were truly wonderful, and because of their own individual experiences, some which they shared with the group, it immediately made the group feel safe, valued, understood, which in turn encouraged every participant,[link widoczny dla zalogowanych], and I mean every participant, to share, laugh, cry in such an intimate way in such a short period of time, it was a truly remarkable and life changing experience for every member of the group.
We each learned so much about ourselves, how to take back a bit of ourselves that had been lost throughout the years of coming to terms with mental health illness, battling with professionals, left dealing with problems/behaviours that we had no prior knowledge or training to deal with. Yet, each one of the battered, bruised souls that attended Prospect came away with a sense of healing beginning to take place. So much so that when we met up again several months later, not only was it apparent in the way people spoke, thought, and in their attitudes that they had changed, but also in many cases even their physical appearance. Gone were the hollow, haunted, fearful expressions. Even though their circumstances hadn't changed, the way they felt about themselves had. What a truly wonderful course. Everyone who attended the training has said the same. Life changing. If there is anyone with any clout out there and who knows of carers in need - then please get funding for this course and send as many carers as possible. Being on the course empowered me to think about me, for the first time in years. It gave me the courage to then join my local carers' group. Having moved from the Highlands this was now the Dumfries and Galloway Carers' Group.
Once again meeting with the carers' officer for Dumfries and Galloway and knowing that she is on the end of the phone when things get tough is such an important part of what NSF (Scotland) offer. Knowing that she truly understands what is going on, and knowing that her advice is full of common sense,[link widoczny dla zalogowanych], because, she too is also a carer. It makes so much difference to a professional's understanding I think, when they can truly say I have walked, or I still walk, in your shoes. They don't try to "fix" it for us,[link widoczny dla zalogowanych], they know they can't. They acknowledge our pain, they encourage us to see other ways of working through our problems,[link widoczny dla zalogowanych], but most importantly they are there for us.
That in itself makes us feel important enough to go on and to keep trying. At the support group, again,[link widoczny dla zalogowanych], this group of people,[link widoczny dla zalogowanych], bound together through one common purpose, we love and care for our relatives with mental health illnesses and want to ensure that they receive the care they deserve. Yet we have some laughs, we learn from each other and hopefully we support each other.
It is so nice to be able to be part of this group and not be judged, not feel you have to justify yourself or your relative, but just to sit and have a natter and a laugh and through visits from professionals be kept informed, or inform them - if they have a heart and ear to listen - on treatments,[link widoczny dla zalogowanych], care, new policies, strategies, for example. The ironic thing, that for some, this is the nearest they come to a social life, because it's the only time they don't feel guilty about leaving their relatives to come out and do something "for themselves".
So, nine years, and still, we are left to pick up the pieces when all our daughter's professional (and personal) relationships break down. We have seen the pattern over nine years. We have watched whilst the next new professional involved in the treatment of her care, decides on a different diagnosis, or a different bout of medication, and we have always had to be there when it all falls down again. Would we want to change it? You bet! Would we like to work with the professionals in partnership, so that we can together help move my daughter forward into taking responsibility for her recovery, whilst having a consistent and caring professional working alongside her? You bet!
So please don't look at us and assume that we want or need or even in some way encourage this dependency. You bet not!
We would trade anything to be able to return to some kind of normality in our household,[link widoczny dla zalogowanych], where we are not always having to respond to our daughter's illness/behaviour because there is no-one else she can turn to!
Our daughter now uses the NSF (Scotland) services for herself. She has seen the professional, consistent and reliable way that the NSF Scotland service has helped me over the last few years and I think it has encouraged her to trust and open up to what they have to offer. And we hope through their genuine understanding of borderline and other mental health issues and the empathy of the staff, which seems to be a pre-requisite of working with NSF Scotland, that she is able to work with them on a long term basis towards becoming more responsible for her own recovery. So next time you are sitting in front of a carer/mother/father/sister/brother/wife/ husband/child please don't make assumptions, instead listen to them. And if you can't or won't listen to them, please inform them of NSF (Scotland) Carers' Group or other such groups. Don't leave them hanging - it's too cruel相关的主题文章：

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