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It's Not Easy on Either Side of the Bed...

Updated: May 6, 2021

Health, Wealth and Happiness...we all put plans in place in our lives to ensure we are happy, healthy and have enough money to support ourselves through the “golden years”.  We look to financial advisors to help us plan for our future and physicians to help us live healthy and thrive. When the stock market or our investments decline, and we're losing money, we look to our advisors for guidance in what to do next.  When our health declines we look to our physicians for guidance and support to walk us through the journey. Until you actually live with a disease, can you understand the sense of urgency you experience to find someone who knows what to do about the thing that is uprooting your life and taking control...How our story starts, determines how it ends, and how we show up as professionals along that journey, directly impacts the stories our families create along the way.

When I first started supporting families along their journey’s as a Social Worker, I struggled with finding the right word or phrase that would ease their suffering, grief and uncertainty. I believed that my job was to fix the situation by connecting people to resources and getting a plan in place, and everything would be better...Did it help? Absolutely! That is imperative to a successful foundation, but it is not the part that matters.  Today, based on my own personal experiences and understanding, the magic is in the listening! It's imperative we have the guidance to help us identify our unique obstacles, and find our own solutions. The vulnerability and compassion to sit with us when we grieve what should have been, and help us re-frame what is possible today, so we can live in spite of the disease and not be at the mercy of it is an eternal gift.

I have recently watched a discussion on You Tube between 5 Doctors and 2 Family Caregivers about how to support Caregivers and help them to “take care of themselves”... They were reviewing a case study of a woman who was presenting at the doctors office complaining of persistent cold like symptoms. The one doctors approach was to dig a little deeper as her symptoms were not consistent with the common cold.  The probe to get more information however, resembled a beat down of “what are YOU doing to get this way”, rather than leading with curiosity and grace to identify something in her world that may be causing stress and manifesting as a Cold.  The Doctor then proceeded to say that her advice would have been that, "She could not do it all, and she would have to stop and take care of herself" and get some help. I would imagine to the Doctor this sounds clinically acceptable, however to the Caregiver, what you just told her is that she is failing, after she has worked so hard to get a rhythm and plan to keep everyone she loves safe, secure and living their life.   I believe the intention of the Doctor is to help, but the impact is devastating.... in those 10 minutes her world as a Caregiver is turned upside down and the stress is exponentially magnified. 

Ironically, during this discussion, the Family Caregivers said that their biggest challenge was getting the doctors and professionals to listen to them about how the disease is impacting their lives, what they thought they needed from a treatment perspective, and what their fears and uncertainty were as the journey progressed.   No one on the panel addressed or acknowledged the Caregivers experience, nor showed interest in adjusting their practices, or even considering what the journey is like on that side of the bed. It was all about what the Doctors would “tell” them... Interesting note, they have all wrote books about this... I believe this happens because our system was built on supporting the disease not the people who are living with the disease.

Person Centered Care and the human experience is not about how you fix and manage the’s about how you help families feel about having it... We're all just trying to figure it out on both sides of the bed. Let us lead with grace and curiosity as professionals and help us to recognize that our job is to see the things our families can’t....

I have learned that we've all been taught either on purpose or by accident that support means fixing.  Community resources absolutely are part of the solution and set a foundation for success.  This is not the magic wand...   The magic is in listening to our story of how this disease is affecting our lives, being vulnerable enough to go to our humanness and say “wow, I can’t imagine, that stinks”, and then simply be present, not to fix, but to feel. Presence... The magic is in helping us sort out all of our feelings, challenges, and uncertainties and filling in the gaps with the answers to the questions we don’t know how to ask....

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