I read a quote today that resonated with me and my own "adventurous" journey as a family caregiver of elders at the same time of having with kids at a young age AND working. I know so many people in these same shoes at middle age in life and they are aware of these aforementioned "unexpected" gifts of surviving chaos and living to tell. I remember going through Regional Center services for a developmental delay, at the same time as extraordinary care for my Parkinsonian elders (both had varying types of Parkinson's Disease and died 1.5 years apart). My friend Phyllis today reminded me of how frazzled I was back then! Yet she said she recalled me coming into my dad's room with a favorite piece of music he knew by heart and in the moment we both listened, all the frazzled nerves disappeared. He closed his eyes and remembered his Catholic School days and singing in church and I sat in a peaceful moment of having given him a memorable gift to his mind and soul. I don't recall if he was on Hospice at the time or what challenges faced us in light of our numerous doctor visits we went through each month, but on that very day of Latin music filling his room, all I remember is being present and possessing a powerful gift of love.
In the same way that I recalled hard times with my kids, I was reminded recently of how I was present in the height of my son's sensory and speech delays and how his tantrums as a toddler upset our family's rhythm. My husband and I had 2 easy daughters and were accustomed to traveling and taking our two daughters on errands and otherwise having them blend in with our parent-led life. Yet my son's health needs as a toddler were not long term but required from us a solid, unshakable presence as his anger went through its arc and often took substantial amount of time with flailing and hitting aimed at anyone near him. My way of being with my son was subdued compared to raising my daughters, because my understanding about meeting his needs was based upon a developmental pediatrician's guidance. "You are so lucky he is able to take his anger out on you" were the words that led me to understand that I can take on anything my son exhibits behaviorially and I became a so-called zen-master in non-reaction. I could sit alongside him, steering clear or moving in to comfort when he let me and listening and just being a presence that he needed. In my ECD class I came upon a book called "Listen" and a website site (https://www.handinhandparenting.org) that took me back to the moments of being a preschool parent and being so caught up in comforting my child with textbook boundaries firm and my unconditional love ever-present. For more information on a helpful website for parents having challenges - see the handinhandparenting.org site and reference the book "listen". Also note that even though Hand in Hand parenting is focused upon parents, it is also a valuable set of practices that are relevant to any caregiver of a family member of any age who is managing through difficulty. These include these areas: Listening with Respect, (Putting Family - my words) People First, Big Goals (or what I would refer to as stretching capability beyond what you would "think" is possible in small but important ways), Openness, and Appreciation. These are important tenets to revisit and also useful to reflect upon how family can provide a grounding when these types of values prevail and are attended to.
In the photo I posted was the reference to life as an adventure - meaning unpredictable and yet also unexpectedly excited. I also found a quote relevant to the story of my life and likely others who are caregivers that was written by Kelly Rae Roberts and states, "Your beautifully messy complicated story matters...Tell it." It just so happens that a caregiver coach friend of mine from PA and I are doing just that -- telling our story - with a book set to come out in 2018 talking about care and allowing a caregiver to find meaning in the journey with entries in the book to reflect upon questions. Just like my life and it's zig zag path, our book about caregiving had its start in 2015 and has been convoluted. For myself alone, there was my own passion at its peak with my dissertation being completed (on the topic of sandwich generation care), and then it waned and then nearly disappeared. But then I attended a conference and again it peaked and then waned again. Writing and then putting it onto the back burner and then coming back to it has been its own messy path but one that I'm still on the journey.
Messy lives are still adventurous lives! Worth living with those we love most next to us in whatever health and capability level life gives us!
