I have been watching as tragedy unfolds on TV these past two weeks with discussion and protests of yet another violent act in the classroom and brick and mortar I spent so many years and hours in as an educator before opening my Foundation. And yet, it is a blur to me as it runs across news feeds in the hospital room and rehab facility I have spent so much time in the past two weeks. This part of my Journey began February 14, Valentine’s Day. My sister picked me up from the airport and we went straight to the hospital to begin my current role as caregiver to my Dad.
The past month has been an emotional mixture for me. This is the first time I have been able to write a blog for weeks. My life was filled to the brim with joy beginning in late January as I traveled to help our oldest son with the birth of his second child, a beautiful, healthy granddaughter. She’s splendid, glorious, and perfect in every way. She was brought home from the hospital on a cool, cloudy day. The same day, I received a phone call turning the emotions 180 degrees. My aging Dad had fallen, cracked three ribs, and a routine scan detected two large masses on his liver. Two day later, I was rerouting my flight home to be with my parents to help them with Dad’s cancer diagnosis.
Am I doing this alone? Thankfully, no, and I am beyond grateful. So, who is my wing man in this new role as caregiver? My Mom. Yes, my amazing sisters are offering support, expertise, and love warming my heart to the core. But, it is my Mom who has now given me the greatest clarity in knowing how I had the steel in my back to make it through both of my breast cancer diagnosis. The role of caregiver has never become so clear to me as it has these past two weeks.
I knew I had to be here for Mom as much as I had to be here as caregiver for Dad. Caregiver burnout is real. I have been quietly monitoring Mom because of what we have been doing together these past two weeks.
- 12-hour days at the hospital.
- Carrying in my Dad’s laundry from the hospital on most nights as we trudge home exhausted around 10 pm.
- Making sure Dad’s meals are ordered in time from the hospital cafeteria each day.
- Trips to the ice machine to make sure his favorite ice chips are at his bedside.
- Spending upwards of 45 minutes each night trying to get him comfortable to sleep in his hospital bed as we untwist sheets, pajamas, shirts, and fluff pillows for him knowing all the while he’s just prolonging our stay because he will miss our company overnight.
- Getting up earlier than my Mom usually does in her normal daily routine to be at the hospital for Dad.
- Driving her everywhere she needs to be since driving is no longer something she does.
- Encouraging my Dad to take trips in the wheelchair to get a “new view” outside his hospital walls even though he had to be pulled up by strap from the hospital workers to get into the wheelchair.
- Sitting with my Dad in chapel as he led us in prayer and Hail Mary’s once we wheeled him down to the chapel.
- Consuming hospital food sitting in hot trays in the cafeteria until it was near “rubberized”.
- Trying to sort out the mountain of information we are given each day by the caregivers to keep track of what they are doing to rehabilitate Dad.
- Anticipation and preparation of the visit to the oncologist.
- Walking up and down hospital and rehab halls watching elderly patients slumped over in wheelchairs for hours.
- Asking myself frequently, are we keeping people alive too long when I see them in this condition?
- Will this be my Dad in a few months, a year?
Watch For Signs of Caregiver Burnout
This list goes on and on. This is what can cause caregiver burnout; the arduous daily tasks focusing on the patient and leaving the caregiver in the pool of forgotten self-care. I worry my Mom has not taken her daily naps. I worry her hours are longer than normal, and her daily schedule has been turned upside down. I worry. We were brave and strong for a full week and didn’t shed a tear.
It wasn’t until I had been here a week and we had to face the next day moving Dad from hospital to rehab facility that we came home exhausted one night and both cried. My Mom wept as she verbalized how much they do together daily, albeit a simple routine, and the realization it may now forever be changed. I wept with anguish knowing I was going to have to fly back home soon and leave this task to my sisters. I know my Mom wanted me to stay longer to sort out information from the oncologist. She knows this is what I do every day with my work and she wanted my thoughts, wanted me to research, and wanted me there to help clarify answers for her.
I have been Mom’s wing man 24/7 for nearly two weeks. We had snow and ice this week. One night at the hospital I watched out the window nervously knowing the temperature was dropping. I could see ice forming on our windshield as I glanced at our car below in the parking lot. I went out in the subfreezing temperatures to scrape the ice off the windshield. I wrapped my arms around my Mom’s shoulders and waist making sure she didn’t slip and fall as we got into the car with our heavy coats, hats, gloves, and scarves slowly and carefully making our way home in the dark on the icy roads.
I was scheduled to fly home the day after the oncology appointment. I sat and contemplated this yesterday as I sat alone in her home catching up on house and paperwork needing to be tended to. I don’t like to make decisions late at night when I’m exhausted. I have had nights when I haven’t slept well, tossing, and turning and wondering what more I could do to help while I was here. Last night, I slept the best I have slept since I arrived.
I woke up this morning rested and with great clarity changed my flight to stay over another week. I was still in my pajamas sitting at my computer when my Mom, my wing man, walked out to the kitchen. She asks me almost daily, “How is your work going? Are you falling too far behind?”
Mom knows how much my Foundation work means to me and she has championed and listened to the stories I share with her since the inception of the Foundation. She gets it and frequently encourages me to sit down and take time to get caught up between hospital hours. When she walked out this morning, she asked again if I was getting caught up.
I looked at her and said, “Well, I have good news and bad news.” She looked at me with a concerned expression. I followed up and said, “The bad news is, I’m going to have to do some laundry. The good news is, I’m staying another week.”
She wrapped her frail arms around me and held me for a long time and said, “I am so happy. I feel so much better now.” I knew she was hoping to hear that news. My wing man has been on a track to caregiver’s burnout since I’ve been here and yet she has not faltered once. It’s what we do in our family. We support each other in the toughest of times. I needed to stay longer.
Caregiver burnout is real. Celebrate small moments when you notice them. Laugh at the situation occasionally. Mom and I sat down each night before bed and had a cup of hot tea and special chocolates I bought just for us before I flew out to be with her. I knew it was going to be tough. But we laughed, we had breakfast out before spending the day with Dad. We have talked about other topics no relating to the care of Dad.
I had so many family members and friends take care of me during my multiple surgeries during both my breast cancer diagnosis. Mom deserves my support now and I know how to do that because she taught me well. I’m going to continue to watch her carefully, so she doesn’t get caregiver burnout. She’s got a long Journey ahead of her now.
Thanks for being my Wing Man Mom! I love you!
So sorry to hear about your Dad Terri – sending you and your beautiful Mom loving thoughts x
Thank you so much, Marie. That means a lot coming from you. Life is full of both beautiful and tragic moments both full of tenderness in their own way.
~Terri
a very good read, thank you
Thank you kindly!