Managing Fang: My role



It seems that my posts over the last week or so have addressed the inevitable conflict that many extreme caregiving parents find in their daily lives.  In a system rife with inconsistencies, fragmentation, limited funds, and sheer complexity, some conflict is unavoidable.  Parents often need to assertively advocate for resources and care for their children amid a system that drowns or dismisses our voices.  Sometimes the only way to be heard is to release our inner Fang.   However, constructive working relationships are universally less stressful for everyone and are much more likely to achieve the positive results that are in the best interest of our kids. For that reason alone I know I need to work very hard at keeping Fang under lock and key. When she is released situations often become conflict laden and very stressful.

In my previous post about why Fang remained sleeping during a recent, very stressful hospitalization I shared that I would discuss my role in Fang’s management.  So, for what it is worth, here is how I personally keep Fang under control. These are my priorities and strategies. Other parents may choose differently.

  •  Choose battles wisely.
    • A very helpful friend told me early on in my extreme parenting journey that there would be the possibility for battles everywhere. Holy cow was she right! She suggested that one of the most important things I could do was to be very selective about the battles I chose or I would become exhausted quickly.  I cannot tell you how important this advice has been.  Early on I decided that I would have a “priority” list, and only if the matter compromised something on the list would I make it an issue.  My personal list is the following, in order of priority: 1) Matthew’s health/safety/medical stability.  2) Matthew’s quality of life.  3) The family’s quality of life.  For #3 the matter has to be significantly serious that I am prepared to deal with the conflict that will inevitably ensue because that conflict will most certainly compromise my quality of life.  So, minor things like nurses telling me how to dress Matthew, homecare staff complaining about how I had shovelled the driveway, or staff reorganizing Matthew’s bedroom, while mildly annoying never blip my QOL radar enough to justify making it an issue.  I just shrug it off because the conflict is not worth it. Having staff in your home is a lot like a marriage – you need to choose to let the little things slide because the relationship is more important than the small bits.   It is only when Matthew’s care or QOL is threatened that I will say something.
  • Be prepared.
    • During Matthew’s most recent and eventful trip to the ER and the ICU Fang slept blissfully in her cage. One of the reasons that conflict or stress was minimized was that care unfolded seamlessly, which was significant when one considers that he was critically ill in the ER and things had the potential to become panicky.   Upon arrival at the hospital I handed the triage nurse, and later the ER treating physician, a one page summary of key information about Matthew. I always do this.  I have learned that in acute settings having up-to-date information at hand allows everyone to do his or her job more effectively. This one page chart includes information about Matthew’s diagnoses, important surgeries and medical history, all medications, and important information about his functional abilities and safety management.
  • Treat others with respect and always start with a fresh slate.
    • I like to think this one is obvious. Just like my mother always told me – treat others with respect if you also wanted to be treated with respect.  I make it a point to go into every relationship assuming that I will be treated with respect and that the professionals involved will view me as an important and helpful member of the team. Starting off on the right foot, even if there is a history of conflict with a team member, often allows us to continue walking on that “right foot”.
  • Set and enforce boundaries – particularly when situations have the potential for conflict.
    • I have learned that sometimes establishing boundaries early on in a clear but diplomatic manner prevents later conflict. A few months ago I was struggling with a matter with our local CCAC. It hit #1 on my priority checklist so it meant that I was prepared to deal it.   The CCAC knew I was concerned – I had made that fairly clear – so they called a meeting. I received an email telling me to come to the CCAC office on a certain date at a certain time – that was it. I was already feeling bullied and “in the dark” – feelings that can get Fang rattling at her cage – so I responded with an email indicating that I looked forward to a meeting to discuss concerns and solutions, but that I wasn’t prepared to attend a meeting unless I had been informed of the participants for the meeting, their role in the conversation, and the specific agenda for the meeting.  In the past, I  learned that without establishing such boundaries I might arrive at a meeting with an established team and a detailed agenda already in place which meant my voice and concerns would be quickly overshadowed.  In this case, and as diplomatically as possible, I told the CCAC that I would not attend the meeting without the requested information provided well in advance.  I know they don’t like it when I set those boundaries, but have learned that they usually respect them.  I have earned a reputation for being assertive and professional, but also unwilling to be bullied or “manhandled”.   For me, meetings that might have the potential for Fang to make an appearance start off more constructively if I am not blindsided.
  • Self-care.
    • I am almost hesitant to list self-care since it is both obvious, but also usually unattainable, for most extreme parents. I also don’t want to suggest that by taking care of ourselves we can avoid conflict and keep our inner Fangs locked up.   The system is sufficiently convoluted and unfriendly that that hope is purely delusional. I also don’t want to blame the parent/victim at all for much of the conflict we live with. That said, frazzled people can live in a perpetual state of fight-or-flight and battles emerge when in calmer moments they might have passed unnoticed. For me, part of keeping Fang quiet is doing whatever I can, whenever I can, to engage in self-care. For me being less frazzled means that I can usually keep matters, and potential battles, in perspective. So that means, for example, when Matthew is in hospital I make it a priority to eat and sleep. When Matthew is at home I try to structure my daily life so that I have windows of time each week to engage in self-care – not easy but a priority if I am to keep Fang at bay.
  • Practice self-compassion.
    • We are flesh and blood humans living every day in very stressful situations that very few can fully understand.  I have learned that I need to cut myself some slack when I do fall apart or lose my cool.  I am doing my best.  That is all I can do.  Asking myself to do more is unrealistic and sets me up for martyrdom and I don’t wish to be a martyr – only Matthew’s (and Robert and David’s) mother.

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