Please walk with me
Recently I was made aware that mental health staff were having trouble communicating with me. I was making them upset, I was giving too much detail and was heightened when notifying them of declining behaviour in my daughter’s condition. This led to information being taken out of context, clinicians becoming frustrated and me feeling unheard and unsupported in being able to assist my daughter to become well instead of more ill.
I lie here awake at 3am trying to understand where I went wrong. Why I behave so differently to normal in this situation. In stressful situations I am normally in control, clear thinking and can handle the load and yet when there is a crisis at home I have difficulty in expressing my concerns to mental health staff to get good outcomes.
It dawned on me that as a carer/parent or the like our natural nurturing instinct when a loved one hurts them self is to re-assure them / to kiss it better / to give them a hug and to tell them it will be alright. With those who suffer from mental health issues these instinctual methods often are impossible. As carers we are then left feeling anxious and helpless so turning to experts is all that is left.
The anxiety, frustration and fear make us deal with things in a manner that is not always calm and precise. This anxiety is a symptom of our loved one’s illness transferred to us. Please understand and help us through it so we can continue to be there for our loved ones that you are treating.
Their illnesses can be looked at like cancer, when our love ones become well we live with the knowledge that it can return and most probably will and will the next episode be the one they will die from. Mental health sufferers are known to have shorter life spans.
Recently it was pointed out to me that yes there was a possibility my child could commit suicide and yet I was not treated in the same manner as my mother who was told her son may die from his brain tumour. Why were her fears and anxiety taken seriously and mine not treated in the same manner?
We understand you see ill people every day and some sicker than our loved one but we don’t we only see our loved one suffering and that is our world, please don’t under estimate the impact that has on us. We are not trained in the care of mental illness we just do the best we can every day, 24 hours a day.
I can’t apologize for not being clear when I contact your service, I do so only when I see a decline in my loved ones health, I do however ask that before you judge me you take just a moment from what we do understand is a very busy workload to wonder why I am heightened and put yourselves in my shoes, feel my fear and concern and then work out the best way to communicate both sides of the information.
Written by Sandra. Illustrated by Helen Wilding, 2013.
Cite as: Sandra. (2013). Please walk with me. The Caring Together Art Journal Project. Retrieved from https://caringtogetherproject.com/walk-with-me/
Comments on “Please walk with me”
Thank you sharing your story with us.
I also deserve to be acknowledged as someone who knows my loved one well enough to be able to recognise the signs of deterioration in their mental health status. after all I am the one who cares for my loved one. I am not being hysterical or over reacting to a serious situation I am mearly trying to get the care needed by my loved one. Of course I am distressed and frantic………..who wouldn’t be?
I may also present as needing help and support and perhaps I do, so can someone at least acknowledge my existence and ask me what I need?
Comment left to “Please walk with me” 3 June 2013
Heartfelt thanks from me also that you have showed a strength of courage to share your sensitive thoughts. I had received some information that with regards to mental-health, Carers felt they were not receiving the support they required from an organisation in which I worked. So earlier this year I had the opportunity to speak with over a hundred Carers and establish what they felt they could use from a supportive educational team.
What became overwhelmingly clear for me, given my experience within the field of disability and mental-health community and clinical work relations, was that while professional and even volunteer workers or caregivers of services were trained in a variety of understandings and underpinning practice models (sometimes extensively), this information never reached the people with the illness or the Carers themselves. My mind boggles at how we believe we can work together (for the benefit of the persons recovery journey) when our perspectives are clearly different based on our access to, and our understanding of, the information around mental illness, recovery concepts and practice, strength-based approaches, boundaries, person-centred planning, and transitional practice just to name a few.
Needless to say, a four part package has been developed and piloted now and the response has been amazing. It seems that when I talk about the idea behind creating such a learning excursion for carers as above, carers relate perfectly and open themselves to information they obviously believe, they were entitled to all along. I concur. I believe your story too, highlights the differing “languages” we are using to communicate with each other and that without change, a holding pattern is the best we can hope for. But I cannot accept that this is good enough for us and it is certainly not good enouigh for the people we care for.
Comment left to “Please walk with me” 4 July 2013