LOOK AT THE DISEASE….. NOT THE SYMPTOMS

There was a post on face book today that really re enforces what I have previously posted here regarding the societal attitude to depression. Robin Williams did not die from suicide, he died from depression. Suicide is suggestive of the idea it was the individual’s choice to die.
I go back to my analogy of depression being a disease, like cancer we do not choose to have it. When someone dies from cancer there is always a cause, like pneumonia, pulmonary embolism or a stroke. But we always say they died of cancer.
Depression is a disease. How often do we hear of someone dying of depression? We don’t. We hear more they died of the symptom, suicide. Australian statistics on the incidence of depression are rising rapidly, particularly amongst our young Australians. Perhaps we could remove the stigma of mental illness by focussing on the the disease rather than its symptoms in turn gaining more insight into this disease. Robin Williams did not die from suicide, he died from a disease………Depression.

http://showyou.com/v/y-6csfDT5ovps/one-of-the-best-robin-williams-tributes-ive-seen?u=arsenic29

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WHY OR JUST BECAUSE

I remember when I was kid hearing about about a family we knew who lived on a neighboring farm. They had a young son who had drowned in the river that backed onto their property. This; I remember, the adults commenting, was a terrible tragedy.
Now some 40 years later if such a thing would be to happen there would be an outpour of horror from the community with questions like ‘how could the parents let this happen?’ Why wasn’t the fence up to stop him falling into the river?’ Or ‘who was meant to be watching him?’ In today’s time society is so quick to look for blame or a reason why, instead of accepting that sometimes bad thing happen…..just because.
When I am really happy Or sad I generally can tell you what has happened to make me feel that way. When I’m sick I can also sometimes tell you why but sometimes it is just because. If someone gets cancer we can all wisely say oh he was a smoker or she drank quite heavily, but sometimes it happens to the tea totaling non smoking purist and then we want to blame it on that! Sometimes it just happens. So too is depression.
Often when my daughter’s mood spirals down I want to be able to say this is because she’s had a argument with her friend or she did badly at school test. But if I ever suggest this she gets so angry with me. I really need to learn that sometimes she feels like crap because. Just because. No reason, No blame, just because.
Really my suggesting it is for any particular reason is irrelevant anyway because it happened anyway and her feeling crap is just how she feels.
This is something I am trying very hard to learn. But I really believe that the alternative is counterproductive and is not therapeutic for my daughters mental health.

SHE IS BACK :)))))

So she was away nearly three months and out of the blue I received a text saying I think I’d like to come home at the end of the month. I went into a spin. Why did she want to come home? Had she had a fight with another friend? How could I possibly manage her back home? Has she changed at all? Is she all better?
I contacted her aunt and grandmother and told them about the text message. They too were as shocked as I was. She had seemed so happy at school, no, they did not think anything in particular had happened.
When I spoke to my daughter later that afternoon I told her this seemed a rather sudden decision. ‘Oh no’ she said ‘I’ve been thinking about it for a few weeks now’
With a bit of a discussion and some planning it was decided that perhaps she could at least see out the end of the term and in the meantime I would perhaps go over there for a week, and see her. Her aunt then suggested that perhaps she may be missing me and it might be nice to see me
‘Why?’ She protested to her aunt, ‘all she ever does is look at me and cry, I only want to go home to see my friends.’
So I arranged a weeks leave from work and packed my bags for a quick week in Perth. Interestingly the entire time I was there she did not once want to go and see friends or have sleep overs, and when we went to see a movie and I suggested she bring a friend along she did not want to do that. (But heaven forbid I may think she might have been missing me at all)
It was a great week for us both. I; feeling much more rested, did not cry all the time and we actually had some fun. I could see how well she had been doing and when I really reflected on the whole situation I asked my self what I wanted to achieve in having her there in Perth. I wanted her to stop self harming and to show a bit of self responsibility going to school etc. she was certainly achieving all this and more, so I figured it really was only fair that I allowed her to come home if that was what she wanted. So upon my return I arranged her flight for the of the school term.
She came home after just on 4 months of been away. 4 months for her to hopefully break the circuit of self harm and suicidal ideation, and 4 months for me to rest both physically and mentally.
I know without that valuable opportunity to recover and strengthen I would never be able to have felt as positive about our ongoing journey ahead.

A Bit More History

About 18 months ago I had my first episode of total exhaustion. It was at this time that my daughter went to live with her father. I was in such an exhausted and anxious state at this time and as such my memory of this time is quite hazy. I do remember she wanted to live with  him and prior to this she had only ever had occasional access visits on weekends and a couple of week holidays with him. But she had a friend who lived in the same apartment block as him and I think that was a major driving force for her wanting to go there. Either way it suited me as I was in such a bad way experiencing symptoms of post traumatic stress. I could not work with out panicking and I spent a lot of time planning my daughters funeral! All my thoughts were very irrational and with the help of a wonderful counselor, an incredibly supportive employer and some sleep I slowly began to make positive steps back to begin was to become my new state of normal. 
My daughter then moved to a proper share care arrangement of 2 weeks with me and 2 weeks with her dad. I think I spent more time; at this point, with my ex husband now than we ever did when we were married! There was even a time there where he stayed at my place to assist me during a period of suicide watch.
During one of her admissions during this time she spoke with her case worker about having had some disturbing dreams of a sexual nature and uncomfortable feelings around her father.
It had been suggested by her psych earlier on in this journey that my daughters clinical presentation had a definite suggestion that at some stage in her life she had experienced some sexual trauma, whether that was directly to her or if she had witnessed something was unknown, but what ever it was she had no conscious memory of it and had locked it away in her mind.
As you can imagine that when she mentioned these dreams and feelings everyone thinks the worst. Did her father do anything to her?
I searched deep into my heart and As much as I have many issues with ex husband I honestly believe he never did. Possibly she has witnessed something at his place but as for hurting her, I honestly believe he never had. AND this is where I also have to take what my daughter said to me as just that…. No accusations, just Dreams and uncomfortable thoughts.
My professional brain kicks in and I figure that at her age she is naturally questioning and exploring her sexuality and in turn this will present in dreams. Obviously the most significant male in her life at the time will be in those dreams.
When her father was told about these dreams he naturally did not cope well. He all ready has mental health issues and this sent him further down. He did not want to see her and was gutted by the suggestions. Even though all the professionals continued to remind him that these were thoughts not accusations.
My daughter in turn felt; I am sure, that she had ruined her fathers life and refuses to discuss it anymore. I think deep down she wishes she’d never said a thing. The poor kid, she is constantly been told to talk about how she’s feeling and the one time she does, this is the reaction she got!
So following this admission she came back to live with me… Full time.
We were back to the same old routine of psych appointments, suicide watch, me juggling work and so on. All now with no assistance or support from her dad.
That’s what brought me to the beginning of my story.

R n R ….Respite and Recovery

So with my daughter in the safe hands of relatives I could begin to to rebuild my sanity. I was determined to use this time to rest and ensure that I could seek out strategies so I would never fall into this hole again.
Support groups were never something I thought I would not be into, but I figured they maybe a great place to start in my search for what is out there for others in my situation.
I did some googling and found ARAFMI. They had a support group that first week I was back in Melbourne. I was determined, so of I went. I poured my heart out to a group of strangers, and the tears began. Compassion fatigue was what I was experiencing. The leader of the group then asked me if I had made contact with the specific carers network connected with the Child and Adolescent Mental Health Unit my daughter was connected with. I looked at her blankly and so she wrote down a name and phone number suggesting I call. This would put me in touch with a group that was more specific to adolescent mental health.
I phoned this lady and made an appointment to see her. We arranged a time and then I asked her where I could find her.
She gave me directions to the exact same waiting room I had been sitting in almost once a week for nearly 3 years with my daughter waiting to see her various therapists!
A week later I was sitting in her office while she listened to my story and asked me again how long had my daughter had been involved with the hospital’s Mental Health Services? I told her that it had been almost 3 years. She asked why I’d not been in touch sooner, and I told her I had no idea that her services even existed until a week ago.
She began to tell me about support groups, respite weekends, walking groups, monetary compensations, and educational seminars.
I started to cry. I could not believe that through all the health professionals and administration staff my daughter and I had been in contact with over 3 years; people who had seen me falling apart with the horror, fear and exhaustion that goes with caring for anyone with a mental illness, NOT ONE of them had sent me in this direction.
Only 2 weeks prior when she was in the Psych Unit (for about the 5th time) I was crying it to the staff for some help in managing her and there answer had been to hand her over to DHS!
This lovely lady then handed me some massage vouchers, and booked me into an 8 week course for carers of individuals with Borderline Personality Disorder. (BPD) and sent me to someone else where I arranged to have a respite weekend (alone) by the beach, also government funded.
I suggested to her that perhaps I was not entitled to all this as I was getting respite with her in Perth. She assured me that I most definitely was and that I should take this opportunity while she was away to utilize all opportunities for some recovery.
The following few months were filled with lots of sleep, and getting back into work.
My work has always been something I love and; if I say so myself, I am damn good at. Unfortunately over the past years as my daughter deteriorated I felt so incompetent as a parent, and this carried onto my feeling of incompetency as a school nurse as well.
Once rested I got back to work and damn it felt good. It was so nice to know I could go to work and not have to juggle care for her or cancel work at the last minute because she was too unstable to leave alone. I was able to go to work each day knowing I wouldn’t get a call from my daughters school asking me to pick her up or telling me that she had cut to such severity that she needed medical attention.
And I could be so much more spontaneously social, I could go out with friends for a drink, dinner or coffee without worrying about if I was going to go home and find my daughter dead in a pool of blood. And I could sleep all night without getting up several times to see if she was still alive or if her suicidal threats were carried through.

Grabbing an opportunity to take a break

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Her Aunt and Grandmother (from her dad’s side of the family) had both phoned me to say they could take her so I could have a break, they did not need to offer twice, within 2 hours I had flights booked. So on the 27th of Feb I went to the Psych ward where she had been admitted……..again and informed her of my decision to send her to Perth to live with her Grandmother and Aunt . Here was my first insight into how much she could not understand what I was going through.
“I don’t get it” she said to the team of case managers and psychs, “why is mum crying? I’m here in hospital, she is getting a break, what’s the problem?”
I explained to her that I was completely worn out, I’d been on suicide watch for her for over 2 months, since she had severed contact with her dad, (another story to add to this blog) and I desperately needed a complete break. I explained that I would go home and pack her things and no she could not come with me to do that. My biggest fear was I would take her from the hospital and she would sabotage any chance I had to get her on that plane.
Naturally she was gutted. I later heard through the staff on the unit that she cried all night, but mercifully she did hurt herself that night and for the first time in a long time, she talked to the staff about how she was feeling.
I left feeling as guilty as any parent could. I was abandoning my baby. I had taken all power from her to make any choice about where she would live and who with, but I knew it was the right thing to do.
That night I packed her things, with a few phone calls from her about what to pack (maybe she was accepting my decicion) I filled the suitcase ready for our departure the next day.
The next day I collected her from the hospital and we (her dad and I ) drove to the airport where she and I boarded a plane bound for Perth. Never have I been so glad of metal detectors in airports. When we walked through that metal detector at the airport and no alarms went off I knew she had no sharps smuggled in her clothes. For a brief moment I thought maybe we should should just live in airport terminals, at least then I could be sure she was sharp free.
On arrival in Perth I thought it better I not stay with her. Every time I looked at her I cried with guilt. She would look back me with a look of ‘don’t know what your problem is, this was your choice!’
So I checked into a hotel (just another expense) and she went to her Aunts. (Aunty lives with grandma)
My plan was to stay in Perth a few days, link her into some support services and then head home. I stayed 4 days, saw her each day for a cuppa and a bit of Perth sight seeing, then on the last day granny drove us to the airport where amidst tears (all mine) I said good bye to them, reminding her I loved her and that I would see her soon.

My Story

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I want to share my story.
I am an educated woman. I went to school, a reputable private school, I went to university and I have a profession I love.
I have parents who separated when I was 7 years old. Both remarried and the disruption to my life over this was minimal
I married at 29, I had a baby girl when I was 31.
I separated from my husband shortly after the birth of my daughter and being a mother has been my main focus over the last 14 years. I worked part time while my daughter attended family day care and then onto school.
We live in a reputable suburb and she attended a good public primary school.
So why do I tell you all this.?
Life; as far as my educated brain sees it, was relatively stress free. Sure we were not rolling in cash but never were we evicted for not paying rent and never did I have a problem getting a good meal on the table. This was most probably thanks to government support and assistance from the generosity of my parents.
So again you may ask why are you telling me this.
I tell you this because 2 years ago for some reason my relatively easy life became a nightmare.
My 14 year old daughter for reasons completely unknown had developed a mental illness.
She teeters in and out of depressive suicidal episodes, she cuts herself on a regular basis sometimes superficically, often seriously deep requiring medical intervention. She spends her time tooing and froing from various health professionals offices, all trying to help her, all offering much advice and medication while she relates over and over again her story of basically not knowing why she feels or behaves like this.
My daughters father stepped in for a while and provided much needed respite in the constant supervision that was required in keeping her safe. A responsibility her school was not prepared to take on.
So both her father and I are unable to commit to full time employment. We did not have the financial capacity to slot her into a private clinic, and this left us at the mercy of a state system that is bursting at the seams and appears to only be able to provide reactive care when she goes into crisis.
I question how long one can keep going. Getting up each day with the constant dread she may give up,and push herself to far today. She may die. Surely this heightened level of anxiety can not be sustained, surely I will break eventually.
So what is meant to happen to families in this situation. A 14 year old that needs to to to school. 2 adults that need to source an income in order to avoid the welfare trap.

On Feburary 27 2014. my daughter was forced to leave my home, forced to reside with a side of her family she hardly knows. Bringing a bright light on the obvious fact that the family she thought was good, strong and loving. A family that at a point of crisis provided nothing in the form of support or assistance in the care of her. While I, her mother crumpled under the stress and strain of managing a child with mental health issues and the family we both thought was strong and supportive, did not step up to help. It had to take the offer of her fathers family ( my ex in laws ) to take her for any respite to be given.
I feel ashamed. My family would think they were so very supportive but when it came to the crunch, quite simply put, they were not.
How; I wonder, does my mother, who considers herself a loving doting grandmother, sit comfortably knowing her grandaughter has had to move across the other side of the country in order for me to get a break.

My Daughter is ill.
Now if her illness was something like cancer my family would be falling over each other to assist in her care, but not mental Illness.
For over 2 years I endured the constant vibe from my family and many of my friends of how naughty my daughter is, how deliberately difficult she is, how she is just out to hurt me, How she just needs a good, firm talking to or how disrespectful she is. And, in a sad way, because I loved and respected these people and because I was worn out and full of my own self doubt as a parent, I sort of believed them.
But on reflection I can see how unfair that is. Like any other illness my daughter did not ask to be this way, she can not help the way she is. It is a mental issue that she has. Just like cancer is a disease you get.
Sure on one level only she can help her self to improve but what they fail to see is this mental illness is what she has, and it will never be ‘fixed’ as such, just managed.
So while all well meaning friends and family were suggesting she’s just a naughty, difficult kid they are failing to accept she has an illness and so much of her behaviour is out of her control.
So what message does this send to my daughter?
‘No one believes her.’
‘Everyone thinks it is all her fault.’
What damaging messages to send to an already fragile mind.
Certainly not therapeutic for an individual with a low self esteem to find some peace and direction in managing her illness.
The stigma associated with mental illness continues and as long as this stigma persists so many; like my daughter, have an even harder road to travel in managing their health.
I know I am not the only one. I know there are many in similar and in far worse situations than myself. My question is what am I supposed to do?
The following is my journey so far, in how I hope to survive what often feels like an ongoing nightmare.