Our shift is never over

A really good friend of mine told me that you have to recognize where you are, honestly see your circumstances, before you can begin to make any change. For me, as a parent  of a child with mental illness, I now recognize that it is the parent, not the mental health system or those within it, who will always be the real professional caregiver while trying to be a parent. A 24hr/7 day a week job because the system is designed on a flawed premise and is under resourced.

Why do i feel this way?

Well I go to a monthly support group for parents with my wife for families with a child or a youth with a mental illness. In listening to the stories around that table for the last 10 years it has become an exercise in seeing, hearing,  and comforting the deep pain those parents feel at watching their children and families end up in a never ending series of crises. 

At a recent support meeting every parent at that table broke in to tears at some point expressing the fear, exhaustion, but mostly worry for the children they deeply love. One parent described a suicide attempt, the second in 3 months, by their teen child. This parent told us in the end they spent more time in the emergency room waiting for psychiatric care than receiving actually care and that after being admitted was called 12 hrs later to have the child picked up. The Parent asked “ so my child is cured?” and was told there is nothing more we can do. Another parent told the heartbreaking tale of being at an event to have their child lose control with phobias and anxiety in front of a full theatre on a special night for their other child. They went on to say that the family sometimes retreats to another room so they can have a break. Even the dog hides there to get away from the rages and ranting of the sick child. When they called for help they were told to wait for it to pass and of course it didn’t. They called back and were asked by a mental health worker “ Well what can I do about it? “.  Another parent related the tale of a crisis at school with their child. Rushing to the school he was told how the incident happened. School staff did not follow the plan, a plan that had been working, in order for the child to be successful. The result was the child in a rage in the middle of the classroom with police in attendance.The Parent had to take days off work to resolve the issue, went to the hospital and was told there wasn’t an issue that was deemed an emergency, was given a number for a crisis line, called, and was told that they needed to go to a certain community agency. They were already working with that agency. That night he received a call from children’s aid about his parenting. The parent is now being supervised.

I have heard hundreds of these stories. I have lived these stories hundreds of times and what is heartbreaking is that everyone of these parents fights hard and is an expert in getting resources for their child. If they were paid staff they would be amongst the most valuable an agency or hospital would have. 

So why is our system of care failing these families? My wife recently related a story where she was explaining the difference to a friend about mental health and the rest of the medical system. She said that if you have cancer there are two outcomes. You get better or you don’t and that it doesn’t matter if your doctor is a self centered ass or the most humane and loving person in the world. All that is important is that he or she knows how to properly administer the medications and treatments, reads the results, adjusts accordingly, and that as a result you will get better or not. Its an output – you get better or don’t. The family of the patient also can move on if they get better or worse. In a clinical setting a series of medical procedures will cure or not.  it’s a yes/no scenario, it’s measurement based. It’s about acting and seeing an effect that works or doesn’t. You operate or medicate, and your better or not. Easy to measure, follows the scientific method, is logical, makes sense. 

This is never the case though with mental illness or the families that support their loved ones. One person recently told me “ well at least if they had cancer they’d die or get better”. Not with Mental Illness.

Why though is this same system applied to how someone is feeling? How do we apply this system to a person who is hallucinating? How do we apply this system to someone who is feeling sad? How do we apply this system to someone who cannot control their day to day emotional state?

Medications you say? Well, they are helpful but the majority of these children and youth will try a huge variety of them before finding something that hopefully works for awhile. There are also side effects. My daughter has uncontrollable hand tremors for example. But these medications were often designed to treat something else like malaria, blood pressure, epilepsy, but were found to have an effect on mood/feeling.

But there is no pill that will make you feel content and emotionally well for the rest of your life. There is no medication that will make you a well adjusted and productive member of society. Doesn’t exist. Now don’t misunderstand me, medications can help but are not solutions in and of themselves. You need something more. You need support, and care, and most importantly love. You need a system of care and attention based upon love not an output. We are trying to heal how people are feeling not how much they are bleeding. 

Our system though doesn’t respond this way and the people who work for it are not allowed to respond in a human and loving way. They have to respond by following protocol and procedure. But what protocol or procedure can respond to a parent that is sobbing in-front of you because their child has tried to kill themselves for the 4 or 5th time? What procedure can meet the need of a youth who feels they are worthless and are guilty because they cannot control their rage or anxiety? What kind of professionalism can equip you to see a child overcome by phobia to the extent that they can’t leave a bathroom for hours? 

We need a system of human care that responds ,not with rules of who can be seen under what criteria, but one of empathy and sympathy and intensive support for the entire family. It is inhumane to force these parents and guardians to be professionals mental health workers 24/hrs a day 7 days a week and hold down jobs and support the home and do the laundry and make supper and make sure the child gets to school, and do the homework, and and and and and and and and and .The real professionals can go home at the end of the work day. For these children, youth, and parents their is never an end to the work day. Ever. We have created a system where the family can never stop asking for, pleading with, researching about, intervening in, and advocating for their loved one.

What is ironic about the workers in the current system of care is that the most effective and successful are the outliers. These are the doctors, youth workers, respite care workers, administrators, nurses, and case managers that respond with love and kindness and bend or break the rules.They respond as one human to another in pain and need. 

Until this becomes the system though it is the parents, the guardians, the families that have to take up the mantel of a professional mental health expert 24 hours a day, 7 days a week, 365 days a year.. Our shift is never over.

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