Over a fourteen year period, I had five different family members who needed help quickly and unexpectedly. Did I live near any of them? NO! Was it worth it? Yes it was! Would I do it again? Yes, but admittedly with some trepidation. Was any of it planned? Absolutely not!
Would I be better prepared? Yes! Did I learn more than I ever could have imagined? Yes…and then some.
All five experiences began with a phone call. Each call was from or for someone in crisis. Each call meant I needed to respond quickly. And, all calls meant flying or driving long distances to meet the needs of the crisis at hand. With this came still more phone calls, juggling schedules, buttoning up things in my life, packing quickly, finding flights and organizing my world as best as possible before leaving.
With long distance care came a sense of panic. I got better at it over time, but honestly, I never did get used to it.
I’m no expert in long distance caregiving, but have survived five experiences with family members, where one phone call put me on high-alert and launched me into action. How I helped varied with each person—their life situations, ages, state of health and how close we were. Each time, I learned new skill sets and better ways to cope.
My background as a clinical and school social worker gave me a leg up on knowledge about the system, finding resources and helping people in need, yet I wasn’t fully prepared for the emotional aspects of the “job” of caring for a family member from afar.
If I knew then what I know now, I might have had many of the same feelings and challenges, but not been as frightened or felt so alone. Sure, I had people around me who cared and offered me support, but the difference was the newness and suddenness and way things seemed to pile up on me. I was left feeling alone, and like I was drowning in a sea of stress. Everyone’s story is different, yet a common thread exists in all of our experiences.
Living far away from our loved ones doesn’t mean we aren’t connected. Certainly, some people aren’t connected; some people wish they were and some don’t.
When the need arises to help a family member in need we have a choice, drop everything and try and do it ourselves and/or share the responsibility with others, be it friends, family, or paid assistance. This is not meant to judge, but to clarify and identify some of our choices.
It all sounds so simple on paper— like a logical set of options. Unfortunately, the emotional aspect of the many layers of caregiving make a difference in how we cope with the hand we’re dealt. How we can be the most effective advocate for our family, in part, depends on the personality we bring to the role and our relationship with the person in need. And then there’s the practical knowledge we possess regarding everything from where they do their banking, to whether or not they have a POLST or Living Will.
I was quick to learn that as someone who was trying to help a family member from afar, establishing myself as a strong and effective advocate was essential—and sometimes even life saving for those I cared for.
The dynamics of taking care of a sibling differs greatly from taking care of a parent, aunt or uncle. Family baggage can color this care, and it takes understanding, strength and the ability to ask for help when we need it ourselves.
My own feelings of guilt from being away when I was needed or wanted to be at home was one of my biggest challenges. On the flip side, it was excruciatingly difficult to leave family members in a hospital, nursing home or hospice when I had to leave.
This was probably the most difficult part of my long distance caregiving experiences. I tried my best to make what felt like a lose/lose situation into a win/win. But I couldn’t. I forever felt I had one foot in and one foot out when it came to being at home or being with my loved one. Social gatherings suddenly felt awkward and foreign to me. I couldn’t fit in, harboring feelings of guilt for having fun. I felt this most while caring for my brother.
Like so many of us, I tried to be the hero at first. I took my role as caregiver very seriously and wanted to master the twists and turns. I learned the hard way this wasn’t realistic. I felt I was “bothering” people when I needed support or simply raged about my frustrations. I found I couldn’t do it alone though I started off wanting to.
While caring for my brother, who’d been diagnosed with cancer, I sought professional assistance from a Life Coach when I accepted I could not do this alone. We’d speak by phone, eliminating the need to be physically present for our sessions. At the time, I still felt I had no time for this, though now I honestly wish I’d found this coach during my first caregiving experience. It was a Godsend!
What helped most was accepting and understanding that my feelings were normal. I learned taking breaks was necessary, warranted and okay. Even when I couldn’t be there, I checked in daily with family members and/or the staff caring for them. My calls let those caring for my family know that I was concerned and vested in their well-being. And, I found most facilities welcomed family support, though I can’t say that all of them did.
I was fortunate to be someone not afraid to ask questions. I was very invested in making sure that my family received the best possible care and attention, even when I was not physically there to advocate for them. Daily involvement, even by phone, is time consuming, but well worth the effort.
My Short List of Lessons Learned
- When we get the call we have a choice to help or not help. If we do choose to help, then we must arm ourselves with support, information, resources, backup, and ways to take care of our own needs. Knowledge is power!
- Find someone to talk to, be it professionally or via friends and family. Be prepared that some friends do not want to know the drama and the details. Try not to take it personally.
- I learned that I could not control everything. Yes, we all know this intellectually, but in my caregiving role, I felt like a failure when I could not help ease someone’s pain, or change the course of events, or make a nurse or doctor behave more empathetically or with compassion.
- Find who to talk to in the system of care, be it a hospital, nursing home, assisted living facility, hospice center or wherever your family member lives or is receiving care. Try to find an ally within the system; sometimes it may be a receptionist in a nursing home.
- I learned that how we speak to those who care for our loved ones, be it a nurse, aide, social worker, physical therapist PA, etc., our tone, that is, how we ask for help and who we ask make all the difference in getting the help needed.
- I learned it’s of the utmost importance to educate oneself about our loved one’s illness, their treatment recommendations, the care protocol and what systems are in place to provide that care.
Of the countless lessons learned over my fourteen years of long distance caregiving, one key lesson was how important it is to “plan for the worst and hope for the best,” be it regarding finances, medical care or end of life planning.
I know that I am not alone. Like everyone, I can only speak to my own experiences. They were personal, unique and filled with hurdles—but also blessings. I am sure that if you are fortunate enough to be able to drop everything and help those you love, though it may mean some personal sacrifice, as you look back, you will feel and know it was the right thing to do. Caregiving is a very fulfilling experience; albeit a very difficult and life changing one.
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.