Well, missed last month again due to the 8th hospitalization since the transplant. Which brings me to today’s topic: The Resilient Caregiver. I’ve just found Dr. Eboni Green’s free caregiver broadcasts and the “resilient caregiver” resonated with me. She also has other foundations of caregiving such as balancing work, etc.
How do families keep going in their caregiver roles long term?
Strength is definitely needed. But to maintain that strength, caregivers need to take care of themselves in order to take the best care of their loved ones. Strength and self-care come from various sources:
Eating right and exercise are the common cry but how do you do this? Once we realized our stay would be months, we stopped eating cafeteria/fast food and brought a week’s worth at a time and stored it in the family lounge. Sometimes hospital social workers will provide food vouchers for the child or their family. Hotels and Ronald McDonald Houses have gyms. I walked to the hospital and used the stairs. Sometimes when my child slept, I did yoga, reiki, qigong or stretching in her room. Also, I walked the hospital corridors with my child (also to keep her healthy) and when she wasn’t able to walk, we used a wheelchair to make the rounds. Also, when my husband got run down and sick from commuting out-of-state daily for weeks, I told him to just go to work and come to the hospital on weekends.
This also means keeping your own doctor’s appointments too to maintain health. When I broke a tooth down to the jawbone while my child was in the hospital (of course is there any other time) I found an emergency dentist by asking people at the hospital and where we were staying who they used. The emergency dentist filed it down then mentioned surgery. I called my home dentist and he said give me an hour and I can fix it without surgery. So I had a one-to-one stay with my daughter for a few hours and it was the only time I left her during the day in the year and half of hospitalizations but I knew I couldn’t risk infection and complications. My daughter also broke her retainer in the hospital (where else) and I found that if you tell your family’s doctors, they will accommodate with emergency appointments when needed.
This one is the easiest for me because it’s how I deal. I find out as much as I can about my child’s condition and treatment options so I know I’m making the best decisions for her care. Many hospitals have in-room computers or family libraries. My dad also researched and regularly sent me links. Occasionally I asked the nurse if I could print something to share with the doctors. Sometimes others working with my daughter like teaching, occupational/physical therapy, music, art, told me to take a break (and sometimes they had parent stress reduction events). When my daughter was too sick in ICU and I couldn’t research at all, I waited until my husband was there on weekends. I attended daily doctor’s rounds to get the most up-to-date information and ask questions. I also kept a folder with a medication list updated with changes and notes on unusual vital signs, test results, treatment, and what had to resolve before returning home.
This was the hardest one for me. There was no time to process and as I was on my own during the week I had to act like everything was fine in front of my daughter. No one asks you how you’re doing when you watch your child being rushed to the emergency room, transported by ambulance to another hospital, or intensive care unit, not sure if she’s going to make it. My daughter coded in ICU and then I had to go in the room minutes later when she was awake but on a ventilator and be brave for her sake. When I felt like I couldn’t help do my daughter’s personal care when she needed me most (because she was hooked up to 6 pieces of equipment), the hospital social worker reminded me I just needed to be her mom, not her nurse.
Parents can also connect to Parent-to-Parent and my coworker who represents P2P visited me as did other coworkers (when I didn’t know how much I needed the support). Also, make a “phone tree” where you call one family member who updates others (e.g. a parent can update your siblings) and your closest friend who can update the others. We only used our cells for emergencies before but even the phone company was understanding and gave us a break for a month when we went over our minutes, then upped them.
For those of you like me who struggled spiritually, I highly recommend Dr. Green’s book “At the Heart of the Matter: A Spiritual Journey for Caregivers.” The book gives caregivers the “opportunity to personalize his or her caregiving journey based on their individual needs.” Remember that spirituality doesn’t necessarily mean religion (though she does mention); it’s whatever the personal transformation means to you. The book has inspirational quotes, poems, thinking points, caregiver assessments and short chapters as time is limited for caregivers. We also found a “soundscape” TV channel that was on most of the time. Sometimes we sat on the “bridge” and looked at the garden across the street. There was also a hospital chapel, and a mosaic mural in a quiet corner.
By taking care of themselves in these areas, families can truly become “resilient caregivers.”
Caregiver Action Network (formerly National Family Caregivers Association)-Caregiver Toolbox http://caregiveraction.org/resources/toolbox/
Caregiver Support Services –Dr. Eboni Green www.caregiversupportservices.org
& radio broadcasts/playback www.blogtalkradio.com/caregiversupport
Parent-to-Parent (matched with trained volunteer parent) www.p2pusa.org
Lauren Agoratus is a parent/advocate who serves as the NJ Coordinator for Family Voices, a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269. She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.