Recently, I was privileged to officiate at an event promoting mental health awareness. Towards the end of the discussion it was my role to ask questions of the speakers on behalf of the audience.
One question stood out to me personally, and I instinctively knew why it was being asked. The words on the card in my hand were straight to the point. “How do you cope with compassion burnout?” it read.
The three speakers, all professionals in their field, all dealing daily with traumatized clients, and all living busy lives themselves, quite rightly saw that question as pertinent to their own circumstances and proceeded to answer it as such.
Some of the coping strategies they outlined in turn were to take the family out for dinner. Have a hot bath and read a favorite book. Perhaps a painting class or yoga. The top choice was a day off to get the focus back on track. As I stood and listened I could see the glaring problem I had lived through many years earlier.
I could feel the frustration from the unknown questioner in the audience. In fact listening was taking my breath away, knowing my role was to ask the questions submitted, not put my opinions forward. Suddenly a lady in the front row stood up, pointed at me, and said. “I want to hear what you have to say.”
She had read my Bio as M.C. for the event, and she knew we were kindred spirits. 24/7 carers who belong to a group of individuals on a path of experience and growth not a normal part of the lives of the majority of the community.
Family, friends and professional support people we look to for guidance, can barely imagine our daily difficulties when perceiving them in relationship to their own experiences. They may have great empathy and caring, but only we can walk in our shoes.
To be sitting opposite a Counselor, Teacher, Doctor or therapist, means by the very fact they are engaged in work or business, that they have a freedom to choose. 24/7 carers have little freedom to choose with all choices having to be primarily based around the best for someone else before themselves.
It is therefore understandable that coping strategies for people with their own welfare the first and foremost priority, will not work for a full time carer. The lady asking the question wanted to know how she could deal with compassion burnout from the position of full time carer. The contrast between the understanding of those who support, and those who need the support, could not have been more clear to me as I stood there listening.
And yet, stark as the differences between the background of each demographic, we as carers continue to seek out the wisdom of others who have not actually lived the intimate situation that is our daily life. Most of us find ourselves, at least in the early years, ignoring our own innate knowledge, instead looking to others to determine what we need.
Before you begin to wonder if I am down playing the role of professional support people, I need to state they are unequivocally very important members of your team. The questions you ask and the help you request however, will change your outcomes greatly if you can accept that only you know your situation and needs. They have valuable expertise to help you meet those needs. If you work together as a team with different understandings and skills you will solve issues without the frustration of feeling unheard.
Let us take a closer look at the example of compassion burnout.
All parents begin their journey into parenthood caring for a small baby. They suffer sleep deprivation, are anxious about the future, stressed over changing personal relationships, and cognizant of the loss of independence that comes from being intimately tied to a little person who relies, 24/7 on their care.
Luckily for our mental health, self esteem, and personal goals, after a few short years that little person begins taking small steps towards self responsibility. They learn to dress themselves, go to the toilet, have a mini adult conversation, and sleep through the night. Kinder and school is finally on the horizon, and as their independence grows ever so slowly, so to do you regain yours. Homeostasis, the natural balance, is restored.
For the parent of a child with a disability, the early years follow a similar path. My son has cerebral palsy, and had to be lifted, carried, changed and dressed just as any other child. If it weren’t for the diagnosis hanging like a dark cloud in the background, he would have been similar to any another helpless baby needing full time care.
My path however didn’t lead to finding my independence ever so slowly, growing as my son gained his independence as should have been the case. The tables were turned and my workload instead grew slowly. My stress increased as he became older, and by the time school appeared on our horizon, my fear for the future was also growing.
As my friends celebrated not having to change nappies or dress two bodies each morning, I was struggling more and more with a heavier child. My friends put away their strollers whilst we upgraded to an electric wheelchair. My friends gained back their independence during the school hours, whilst I became bound to the school, often having to rush up to deal with some issue. Whilst others gained pride in the experience of motherhood, I felt cheated, jealous, and isolated.
A loss of control and ability to make meaningful change with little light at the end of the tunnel, can begin a slow decline into depression. I was on that path and the danger period really comes into focus at the point when children begin school and reality sets in.
In my experience, before this point in time, parents of a child with a disability, look to friends and relatives for advice and support. Eventually though, the time comes when it is necessary to seek more professional advice. Parents and friends also reach a point when they see the reality and they too feel fear not knowing how to help, or what to do. This can lead to changing relationship stress that adds to your reality.
Your future success in finding the right supports and enhancing your outcomes is dependent on how you communicate with the professionals you interact with. Remember back to the professionals at the event I described earlier. In answering the question of compassion burnout, their first consideration was about how it affected them, and rightly so. Everyone you come into contact with has experience, beliefs, and knowledge about themselves first and foremost.
All they can possibly know about your life is what they imagine. To imagine is to assume, wonder, and empathize for just a short length of time. At the conclusion of your discussion session they put their thoughts aside, and try to imagine the situation of their next client. No one can possibly know how you are affected by your 24/7 caring responsibilities and your reality. You cannot imagine what I go through, just as I cannot imagine the circumstances experienced by even my next door neighbor.
So why do carers, with their unique understanding of their own needs, sit opposite a person they barely know, and expect to be given solutions to their most difficult. problems? Well meaning professionals have little concrete understanding of your personal situation and can only perceive it in relation to their life.
I had reason to seek help when my depression became so bad I could no longer hide it from myself with all manner of excuses. For those who have been there, it can be a huge effort to take the step of seeking help when you have been hell bent on becoming a martyr. So to leave a counseling session, feeling even more disillusioned and unhappy than before I arrived, was crushing indeed. I was waiting to be told how to help myself, instead of asking for the supports I knew I needed in order to help myself. When I changed the questions I asked, the advice given changed too. Sadly I didn’t learn that lesson for way too many years.
I believe we put professionals in an unfair situation by not utilizing their knowledge in the best way. Instead of sitting there hoping their words of wisdom will somehow improve our lives, we should be asking ourselves what contacts, and services they know about that would be important for our purposes.
The difference in outcomes between my early self, and an acquaintance who woke me up to my errors, could not be more stark.
Imagine me, a sleep deprived, newly divorced, frightened mother, sitting across from an empathetic concerned counselor. Tears flowing, depressed, unable to say much other than I didn’t know how to cope. I was so tired I couldn’t think clearly, and because of the tiredness I was constantly ill. In fact the stress I put myself under helped to cause breast cancer years later. Only then did I get a wake up call about how to address my problems.
The counselor rightly said I needed to get more sleep. I had to find a way to relax for an hour before bed, preferably at the same time each night. In fact I was given a whole list of sleep hygiene tips. Sleep was my big concern. It was the issue that needed work before any other problems could be addressed. I knew it. The Counselor knew it. So home I went with my to do list.
I am ashamed to say that even as I sat across from that Counselor, I knew the appointment was a waste of time. I was defeated and upset, far more so than before the appointment because I had no way to implement that list. To try to relax by doing something I enjoyed would be frustrating knowing I would be constantly interrupted. Bed at the same time each night was impossible with a child recovering from regular surgeries. I was lucky to have a two minute shower, let alone a bath with a book for company. I knew all this each time I sought support over the years, and yet I still sat blankly hoping kind words would turn into a tangible solution.
My change in communication kicked in after hearing the story of another sleep deprived mum who had a child with cerebral palsy quite a few years older than mine. She handed down to me advice I am now handing down here.
My acquaintance, lets call her Sue, was lucky to get fitful sleep through the night, not just for months, but year after year. Her child suffered pain if she was not turned every two hours through the night. She was so physically disabled that she was unable to move enough to relieve the pressure, and for a very long time her parents took turns to sit up through the night so the other could sleep.
Eventually Sue approached her Counselor with her thoughts about a solution to the problem which was beginning to take a toll on her marriage. “I know I need more sleep.” she said. “Can you find me the respite I need between 11 pm and 1 am. A plan was formulated and soon they were ready to see if it worked. Sue figured she could go to bed at 9.30. A trusted carer let themselves into the home at 11 pm, turned the child when she stirred, then turned her again at 1 am. By 3 am. Sue had been asleep for a good stretch. She was ready for a trip to the toilet, another turn, and a couple hours more rest. Things were looking up. Her life was much happier and she had the energy to tackle other issues as they arose.
Sue had asked for what she needed in order to achieve a better nights sleep. The Counselor had been able to apply her own knowledge of contacts and services to achieve the desired outcome. Both parties were on the same page.
The only person in a position to understand Sues’ need, was Sue. Instead of hoping someone else would be able to come up with a solution, as I had done previously, Sue was able to say this is what I need to solve my immediate problem. Can you help me find that resource?
Perhaps your immediate concern is trying to do your weekly grocery shop with a behaviorally challenged child. Just thinking about the frustration and upset to both you and your child could in itself cause a level of stress that just simmers away. You will get lots of understanding and empathy when you recite your challenges to a professional, but what if you asked for the solution that would suit you instead. ” For my peace of mind and ongoing health could you help me to find the respite I need so I can shop once a week in peace?” Let the professional do what they are good at. Finding you tangible services to improve you situation.
Go to your friends and family to blow off steam and relieve frustration, and go to your Dr, Counselor or Therapist with the solution you believe will better improve your situation, and ask them to help you find that service. Soon you will begin to feel you have more control over your life. You will start to address other issues from a stronger base. You will begin to see future possibilities which cannot help but to strengthen hope. Your purpose shifts when you are thinking about solutions to seek out instead of no solutions being possible.
We have a wealth of professionals in our community, with a wealth of contacts and services at their fingertips. They can only begin to suggest strategies after you tell them what you truly believe you need in order to improve your particular circumstance. They can work with your valuable input, and your wisdom which is unique. In turn you can benefit from their contacts and experience of service providers. To become a successful full time carer we need to build a strong engaged team by working as one. By virtue of your role you appoint yourself chair, which means directing the group, not waiting for direction.