When I became a long and near distance caregiver in 1999 for the first time, to my knowledge there was nothing like the caregiver support group online that we now have thanks to The Caregiver Space! I never had the opportunity to participate in a support group, because I just could not find the time due to my travel and management of family members’ lives, who could no longer do so on their own. One example is having to move my parents, aunt and uncle and my brother and take over all over of their affairs from legal, to real estate to financial– and the list goes on. Most importantly, I was their advocate for all things medical and anything that had to do with their care.
Despite the oftentimes desperate feeling we as caregivers have that nobody can understand our pain, or worry, or any of the feelings associated with our personal caregiving, we can still make a difference for one another, which in and of itself is healing. I have learned the benefits of the online support group and encourage those to try it if they have not already. For today’s world, it is a great answer for caregivers who feel that they just don’t have the time to get help for themselves. I felt that way for fifteen years and fortunately stumbled upon a caregiver support group three years after my last caregiving experience ended and was invited to participate, not as a current caregiver, but as a “survivor” of five different experiences. Why? Because we have been there, not because our situations are alike, but because there is that common thread that offers a sense of hope and comfort in some of our darkest times.
As I read and comment on the posts on the Caregiver Community site, one thing that jumps out at me, is the fact that no two experiences are alike for so many reasons; however, there are so many commonalities in what people share, need, don’t know or understand and most importantly how they feel. Simply sharing our story with one another, sometimes with as much as just a one comment about feeling trapped, angry, lost or frustrated normalizes our caregiving situations and brings to light a lot of things– including feelings, what we are grateful for, what we should never take for granted, and the importance and POWER of learning to share our stories and ask for help. And, then there is the practical advice or suggestions, or how to find resources.
When I wrote a book about my own caregiving experiences, I hoped it would help others by learning through my mistakes as well as what worked for me. I had a variety of situations, which helped me gain more knowledge. And, despite my social work background, the emotional roller coaster and family relationship with each person in need, I found myself to be overwhelmed, exhausted, frustrated and hopeless at times. I hoped that by sharing my stories others would benefit.
I recently received unsolicited feedback re: my book, When Family Calls, via a Messenger message, from a fellow caregiver, whom I met on the Caregiver Space Facebook Support Groups. This caregiver’s story is quite different than mine. She is a mother, who has cared for her adult son for twelve years, due to a life changing car accident at the age of 26. Her son is now 38 years old. Sadly, her son sustained severe head trauma and continues to need care but has come very far and is described by his mother as, “One of the strongest and most determined people I know!”
My situations were quite different; however, there were some common threads. My mother had a closed head injury, years prior to a stroke and my father had a stroke causing a cascade of issues due to something called “Left Neglect!” My world, like so many caregivers was changed in an instance–another common thread. I am not sure how she found my book, but after she finished reading it, she shared her feelings with me with this message:
“I finished your book last night … I had only the last chapter left and was going to wait until tonight to finish it… but I did some organizing, and some thinking, and more organizing and thinking, and then picked it up again. When I read a book with so much heart, and depth, I have to take little breaks to absorb it all. Today I had a PT appt with a therapist I’ve known for almost 20 years, and we spent most of the session talking about your book, my caregiving of my son, and he and his wife considering caregiving for his mother-in-law… the positives and negatives, plusses and minuses… You were such a gift to your family members… I could SO relate to the advocacy issues, and having to choose who to approach, and how. Our major situation now is getting all the ‘end of life’ paperwork done – wills, who gets what, who gets responsibility for our son, etc., etc. Difficult, of course, but your book, and how you managed to care for so many loved ones, meanwhile trying to keep your life together, helped me realize that it CAN be done. I just want to thank you for recording the time you spent caregiving – I know it will help so many people deal with similar situations!!!”
This mother’s reaction to my stories about my own caregiving journey made me think about the differences and the similarities there are with each person’s or family’s experience–something I already knew, but it really made me see what we as caregivers can gain from one another, no matter what our circumstances. We often feel alone, even when people surround us. Just one of many feelings associated with caregiving. Yes, I knew this before I joined the group, but despite the obvious differences, there are some very common feelings, experiences, situations, institutions, economic factors, familial relationships before, during and after caregiving for a family member or friend. I have found that reading other people’s posts, be it one line or a long paragraph, an immediate community of support is fostered and received.
Caroline Sheppard, MSW, recently published a book focusing on her long distance caregiving experiences with five family members spanning a fourteen-year period. She hopes her stories and experiences can help others facing caregiving from both far and near, by sharing difficult yet rewarding lessons learned. She became a caregiver while on a leave of absence. She soon found her life and priorities so changed that she never went back to work.
Caroline has been a social worker for her adult working life, with a specialty in families, children and schools and has been certified as a trauma and loss specialist. She has written three children’s books: “Brave Bart,” a story for grieving and traumatized children (which is still in print), “Shadow Moves,” a story for difficult and traumatic moves and “Brave Bart and The Bully.” Two of these were illustrated by her brother who sadly passed away before the third book was completed. She was also his long distance caregiver.