THE DAY MUM WENT MISSING
The day Mum went missing began much like any other day: wrangling my eldest daughter out of her PJs into something resembling an outfit that would last the day at kindy, as well as attempting to get a brush through her hair so she didn’t look like some orphaned waif.
At the same time I was ratting through the dress-up box trying to find my youngest daughter’s current favourite polyester Disney dress-up. None of the costumes seem to be right because despite the sticky, humid Sydney day, the princess gown had to have “long sleeves”.
So after finding the right dress, ignoring the nest of knots at the back of Miss Four’s head and herding them both out the door, I could almost smell the coffee I was going to fortify myself with, before my daughter and I visited Mum in hospital.
I reminded myself to order two – the thought of good caffeine fix might be enough to elicit a whisper of a smile from my mother. She had been going down, down, down with her latest bipolar episode.
A spell in a psychiatric hospital was hopefully a way to fine tune her meds and rescue her before she slipped into that scary, black cave of nothingness.
My story is not unique. Many, many Australians are caring for a loved one with a mental illness. It’s a situation that you can find isolating, confusing and frustrating.
That is why the findings of the world’s first national report card on mental health and suicide prevention by the National Mental Health Commission are so significant. In the detailed report there are some shocking figures.
According to Professor Allan Fels, Chair of the NMHC, “people with a severe mental illness will have their life expectancy reduced by 25 years on average due to the increased likelihood of heart related conditions, diabetes and obesity.”
The Commission also found worrying evidence of the high use of seclusion and restraint in mental health facilities. At the moment not all jurisdictions are obliged to publicly report their use of seclusion.
But what makes this report different is that people – not statistics and bar graphs – are at its heart.The NMHC report is rich with stories of those with a mental illness, their families and supporters.
Too often such stories are overlooked. Shame, stigma and exhaustion can all contribute to such experiences remaining hidden.
It also means that you can often feel like you’re the only one, the only family going through it. And I’ve been there. My family and I go into
paramedic mode when mum gets sick. But despite our years of ‘experience’ our ability to handle different situations can be hit and miss.
So I found myself feeling desperately unequipped and vulnerable that morning, clutching a tray of coffee in one hand, and holding my daughter’s hand with the other as we both headed towards her hospital room.
I had found that a coffee and cuddle from both of us helped Mum. Or perhaps it just helped me to feel like I was grounding her in reality. The reality of the love she had around her: two generations of girls who would not give up on her.
But that particular morning I feared that mum had given up on us… She was not in her room.
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35 Responses to this article
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Wendy November 27, 2012
Oh Jess..my heart goes out to you! You’re a wonderful daughter x
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Kim November 27, 2012
Jessica thanks for sharing your story. My heart broke reading it as I totally understood every word you wrote.
I too have a mother that suffers from severe depression and have experienced similar situations as yours. When my mother is at her worst, the desperation to make things right for her is almost unbearable. The hardest part is when you need help and just can’t get it straight away is so frustrating. Hospitals aren’t equipped to deal with this illness.
So many families give up trying through frustration and not having the adequate support to help them deal with the person with mental illness.
Be proud of the daughter that you are, because you are special. Like you, no matter how angry or upset I get, I will never give up on my mother.
May there be more good days ahead for both you and your mother
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Reveller November 27, 2012
Jessica, I understand how difficult it is to watch someone you care about struggle with mental illness, and don’t mean for a second to judge or criticise your actions. I was just wondering, did you think about plonking down beside your Mum and going for a ride on the ferry with her? It might have made her feel a bit ‘normal’ and sent the message ‘it’s OK to be mental’??
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Rhoda November 27, 2012
I don’t know the slightest thing about mental illness but I do sympathize with you, Jessica and feel your pain. I do hope your mum will always have you there to guide her care. I applaud your efforts to push down the barriers that have been erected by society’s sense of helplessness. We really do have to shift attitudes and make more money available to research this terrible illness and improve treatments. I’m with you 100%.
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Susan November 27, 2012
My 26 yo daughter has bipolar and my husband and I keep reminding ourselves how lucky we are. We have each other to support us during the black periods and my daughter has a loving, devoted partner as well. The system is completely inadequate for her. On at least three occassions, after one or two nights in hospital, she has been sent home to us with instructions that we are not to leave here alone.
What we have found is that our joy gets robbed from us. You spend so much time and emotional energy dealing with the black periods that you can’t enjoy the happy times because you are waiting for it to end.
We are lucky – we have good employers who understand our needs and a good infomral support network. Many don’t.
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The Huntress November 27, 2012
A heartbreaking situation for yourself and other families who are in a similar situation. I say this as a healthcare professional AND as the mother of a child with severe mental illness.
There is nothing that is wanted or needed more in healthcare than good, effective mental health treatments. Often the reduced lifespan is due to the medications being used. We have nothing better to offer and the question is often asked is it ethical to give treatment to treat one illness, but often causing another ie. type 2 diabetes.
“The system” and “hospitals” are under-funded, under-staffed and often out-of-date as mental health is swept under the carpet by governments constantly slashing the funding. This results in less-than-effective treatment, burnout in families, uncoordinated care and situations described above. I do know for a fact those who work in mental health are usually dedicated practitioners with genuine caring and empathy for their patients. But they too experience frustration, underappreciation and burn-out.
The mental health system needs a complete overhaul and a massive increase in FUNDING. Until then…who knows what will happen?
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marnie52 November 27, 2012
How I dread ending up like your mother. How I wish I could simply sign a form to allow them to quietly put me to sleep when I no longer live in the real world, when I no longer want to live at all. My grandmother lived to 92, she chose to live in a nursing home for the last 15 years, she had all her faculties until the day she died and every day she prayed she would not wake up in the morning. Is it any wonder that for so many, the brain takes over and creates a different reality. I don’t believe we need better facilities, we need better laws, Laws that allow us to leave this world when we are ready, not when we have no choice.
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Catherine November 27, 2012
Jessica, what a thoughtful and thought provoking piece of writing. Thank you for sharing it with us.
I hope that there is someone close to you, who knows you and the words that will have the most meaning to you, but – YOU are doing an amazingly important job and it is so very much appreciated.
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anne louise November 27, 2012
Lovely words Catherine. And Jessica I agree with Catherine – I hope you are able to gain strength from the love of your family and friends, and if it helps in any way, from your readers. And thanks for stepping out and giving from your personal bank. People like you give credibility to such matters and heart to those who are also dealing with the hard slog and heart break.
I really hope that this report results in some real action that will help people with mental health issues and their families if they have them. It will be a very expensive exercise, but must be done. It is inhumane to treat people the way we currently are. People with mental health issues are not treated with much consideration by our health and community service agencies currently. (Last week an acquaintance was evicted from his father’s premises two weeks after said father’s death. With no help to find shelter, and no one to help him manage his affairs. He slept in the park by day and walked the streets by night – it was safer that way).
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RobynMarie November 27, 2012
God Marnie, what a misery guts you are.
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Susan November 27, 2012
Robyn Marie- when you wake up every morning to blackness like her grandmother did, I completely understand why she says it. Depression is the pits….It’s the pits
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Avril Hansen November 27, 2012
Thanks for sharing your story Jess, your mother is lucky to have you and society is lucky to have you bringing awareness to Mental Health. It is no different to any other type of illness. By the way, I have always enjoyed your happy smiley presence on the TV no matter what you must be dealing with sometimes. You’re like a breath of fresh air on the weekend mornings and on the other show you used to do, that I no longer watch.
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Murfomurf November 27, 2012
That was very courageous of you to muster your resources and go after your lost, depressed mum like that. I know from reading your story that you have had a hard enough time keeping yourself ticking over with ongoing depressive issues. If only the “making a contribution” point on the NMHC list could be made to work for your mum. That point is the hardest one for me too- feeling as though no one wants my contribution even though I could make a huge one if I had the chance & support; it would stop me thinking of my eventual suicide, even though I manage day to day like most people. Where are the ongoing services that are easily accessed day to day where we could talk to someone consistent and form some sort of connection?
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royce November 27, 2012
A sister in law who jumped from the Collingwood flats…. my wife with scarey depression….. I shed a tear…. and felt some communion with you.
Look after your mum. Love
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anonygirl November 27, 2012
The public mental health system is a mess.
The first time i went to psych hospital as a teen, via emergency, the nurses took my mother aside and told her emphatically that i shouldn’t go into the pubic ward. they were concerned for my safety as i was so meek.
Over the last ten years i’ve spent a lot of time in a small private hospital where i always felt safe. Then after i’d let my health insurance lapse for a few years, i needed to be admitted again- this time in the public hospital. It was such a different experience and i was afraid… Luckily my doctor convincned them to discharge me soon. I won’t forget the sad experience of waiting hours in a room to get discharged, while other patients desperately called everyone they knew to try find somewhere to stay (or they wouldn’t be released). One young girl made an agreement with an older patient, she could stay at his place in exchange for sex. It all seemed so difficult for the patients, i could hardly believe the difference between the private and public systems. I felt hopelessness for people to find stable housing and treatment without having the privelege of a very supportive family and enough money for a high level of health cover.
I gave birth in the public system and was happy with my experience… The gap between the public and private mental health system is extreme -
ro.watson November 27, 2012
It is just terrible the sense of being held captive by one’s own condition….
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ro.watson November 27, 2012
I don’t think hospitals are places of healing for people with mental health issues… they are places of assessment and restraint.
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ro.watson November 27, 2012
I would like there to be better and more well resourced community based care across the health care system~ particularly in crisis and chronic care….
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ro.watson November 27, 2012
I loved your contribution Carol Jones but I also beg to differ about whether or not the brain should be the locus of study~as human beings,just like other animals with bodies, we are very complex and our states are subtle.
I heard today on Perth ABC local radio an interview with a young man who has been nominated as Western Australia’s Young Australian of the Year. Inter alia, he said~” make meaning out of your pain”….There are some things doctors and scientists cannot do~namely make meaning~though I note these days there is encouragement to meditate, be mindful and exercise…from Beyond Blue and other organisations supporting healthy ways… -
Benison O'Reilly November 27, 2012
Oh Jessica, you made me cry. I hope they sort out your mum’s medications soon . Families with relatives with mental illness have the hardest road of all. I once worked for an organisation where I was required to counsel (usually) mothers of young men & women with schizophrenia. Those conversations have never left me.
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ro.watson November 27, 2012
There is a big rip and rift between someone who is caught in the tide of their mental health issues, and their so-called carers and health professionals. Problems of power and control.
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ro.watson November 27, 2012
Anyway there is poignancy in the title of your article “the Day My Mum Went Missing”~ because those suffering mental health issues often feel they are “missing” from themselves.
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Linda Robinson November 27, 2012
not ALL health professionals are obsessed with power and control! spare a thought for the staff attempting to do their best for people;we are doing our best!
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Sue Bell November 27, 2012
Dear Jessica,
my gentle beautiful father had Alzheimer’s disease and was a wanderer. My mother cared for him for 15 years, she would set out paints and drawing materials everyday, he was an artist and drew until his last month of life, his later drawings showed the horror and frustration he felt at losing his mind, she ensured that carers were also interested in the arts, she helped arrange group participation with other dementia patients, she was amazing.
But everyday he had to get out, to walk miles and miles. My mother always made sure he had identification on him and a supply of tram tickets. If you tried to keep him inside, maybe it was freezing cold and raining, he would panic and think he was in a prisoner of war camp.
Most days he tried to walk in a straight line from one side of Melbourne to his mother’s old home on the other side, the fact that the Yarra river was in the way never stopped him. Sometimes he did not come home. Sometimes a kind stranger realised he was out of his depth, checked his identification bracelet and phoned his home, sometimes the police found him, he had his photo and details in five police stations. My mother could not leave the house in case he came home and could not remember how to open the door. Not every stranger was kind, a very cruel tram ticket inspector, threatened to send him to prison because although he had tram tickets he could not remember what a seniors card was or if he had one. FFS, he was in his late eighties, he came home in tears absolutely terrified he was to be locked up. In the end he could not recognise any of the family, though I had a happy moment as he was in a coma in his last days, I sang him some of his favourite jazz/blues songs and we saw his cheek twitch in a smile of recognition.
He never wanted to end up in care, he never wanted to live without his mental facilities, but we are a cruel nation and do not support assisted suicide. He remained a gentle, loving man to the end but his care wore out my mother and she had to have a bypass. I deeply miss talking to him, his sense of humour (from the Goon show), his art and his compassion.
For anyone caring for the mentally ill is a hard, hard life but often we get new insights into ourselves and our resilience. -
ro.watson November 27, 2012
Sorry Linda if what I said got translated as those working with people with mental heath issues are obsessed with power and control. I did not say that. I did not mean that. In every place and vocation, there are compassionate people, including people with “mental health issues”. I maintain, despite having received some compassion from mental health nurses, that hospitals are not healing places for those suffering mental health issues.
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ro.watson November 27, 2012
Sue Bell. Tough times, and onya for the company you gave your Dad.
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Leesa November 27, 2012
Personally I am very cynical about the mental health system actually changing.
I was a dedicated psychiatric nurse for over twenty years until I quit in despair. Ethics…care has gone.
Medication has replaced nuture, education,support, a hug, rapport building, group therapy, individual therapy, family support. Now it’s just medication. Families are left devastated, clients are left desperate…its a mess and all because governments won’t pay and pharmalogical industries rule.
We don’t need to know more about the brain to give support to both people experiencing mental illness and their families…we simply need to understand that healing takes time thus healing is expensive and be willing to pay the bill.
We need to understand that it is caring not money that counts. And as yet we just don’t get it. It’s not just the government…it’s the community at large.
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anne louise November 28, 2012
So true, Leesa about every facet of health care. But more poignant in the case of mental health care. It won’t really change, will it? I live in hope.
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ro.watson November 27, 2012
Good onya Leesa~ there is a large gap between care and control which many people who work within an institutional setting struggle with.
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Rose November 27, 2012
As a foster carer I have seen and cared for many, many children come into care as a result of their parents mental health issues. Those issues and the associated problems that often co-exist or emerge as a result including addictions, domestic violence, homelessness, incarceration and sonny more have such a devastating impact on families and communities. This, along with the ndis are vital components to a values based society. Bring it on!
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Claire December 10, 2012
Thanks for sharing your stories about mental illness. I am just starting this hideous journey with my wonderful, sensitive, over thinking, highly creative 16yr old son and it is heart breaking.. I feel the last 15 months have changed me, him, my family for ever and we are trying to adjust to this new life. It seems so hard to get people to understand that when you have mental health issues its different to the standard norms of life. Even my wonderfully suportive husband doesn’t always get it. My son will do and say things and others look at me and say “well what the hell are you going do about that” and I want to scream “NOTHING just love him unconditionally, hold his hand and be there through thick and thin!!!” I don’t care about the small stuff at all just keeping him alive and healthy.
When I read the posts you do on mental health Jessica I feel I can breathe again and someone else understands. Then I read all of your readers comments and it all helps. Thanks for putting it out there and please don’t stop. -
Arn December 10, 2012
Thanks Jessica for your story and Claire I too am on this journey with my beautiful, too bright for own good, over thinking, perfectionist 14 year old. She is an elite athlete and her MH journey and Athletic journey have changed her life, our family and friends lives forever. I don’t care about the small stuff at all anymore — all I want is for my beautiful girl to be alive, healthy and happy and for her to love herself.
Without a supportive workplace and fabulous family and friends including her coaches she and I doubt she would be here today and we will be forever grateful for that.
Real understanding, support and time is the key to healing and recovery. Sadly the system is so underfunded it is ridiculous and I like many have had to borrow more and more to ensure she can get the help she needs when she needs it and so I can work less to be there for her and not leave her on her own. At some point I wont be able to keep borrowing – others never even have that option and are at the mercy of a system that doesn’t even begin to provide the help and support required by so many.
Claire and everyone else hang in there, I totally understand. The more we all talk about it and destigmatise mental health the better. Hugs to all
