Caregivers are called upon in the most unexpected ways through disease, an accident, surgery, or treatment. This is the story and journey of a thousand miles, two breast cancer diagnoses, multiple surgeries, and the story of how my son, Brian, taught me more about this role and what it means to be a compassionate caregiver on Episode 17: Journey of the Caregiver, on the DiepCJourney podcast.
No Instruction Book for a Caregiver
When a friend or loved one faces a health event and you know they will need assistance, your call to duty to be a caregiver begins. There is no payment for this role and certainly no instruction book. Both the patient and the caregiver shift their daily routine and begin to think in terms of strategy to help the patient.
Considerations can include any or all of the following:
- Adjusting work or school schedules.
- Preparing meals.
- Taking on household duties like cleaning, laundry, paying bills, making beds.
- Driving to appointments or waiting for hours in a surgical waiting room.
- Listening to the patient and their concerns and worries.
- Speaking with other family members who are concerned.
- Accepting help from neighbors and friends.
This can all become overwhelming and require a great deal of emotional strength and compassion. The caregiver is not handed an instruction book to deal with this new role. So how do they cope?
What my Youngest Son Taught Me About a Compassionate Caregiver
I have been extremely fortunate to speak with both of our sons about the role of caregiver. Rich, out oldest son, spoke with my own DIEP flap breast reconstruction surgeon in a YouTube video. What I found so touching was the fact my surgeon, Dr. Minas Chrysopoulo, stated in the video, “You are in a position that you can really help us out as surgeons.” Brian puts a different spin on it in the podcast sharing his own experience caring for me three times, twice though breast cancer and again after my breast reconstruction surgery.
Each time he showed great compassion in the strongest of ways by listening to me. Patients come with a lot of concerns, baggage to be honest, when faced with a healthcare crisis or event. It comes in the form of emotional baggage and physical needs. The emotional part can be exhausting for a caregiver. Brian points out it was important for him to listen, so he knew what my needs were. He had a gentle, patient sense of when he needed to do that. However, he also states it is equally important to take a break from the role of caregiver when it is appropriate for the patient.
Tips for the Caregiver to Nourish Themselves
The strongest tip I heard my son share was to take time to be alone. I remember him doing this for both of my breast cancer diagnosis and during DIEP flap recovery. It is equally important for the patient to respect this need. No blame or guilt should be placed on the caregiver if they fall silent, go for a walk, watch TV, read a book, or play a game. This is what we often refer to in our family as a “mental clearance sale, everything must go!”
Sharing moments with the patient that have nothing to do with caregiving is important as well. Distract from the obvious misfortune at hand. Engage in an activity completely outside of the role of being a caregiver and for the patient, the unintended role of being a patient. Watch a movie together, play a card game, or as was the case in our family, lots of backgammon. Go for a walk if possible. Heck, I remember when I broke my knee when both of the boys were adults, and we used my wheelchair to have races around the kitchen. Talk about a distraction!
You Never Know When You Will be Called to be a Caregiver
This family has pulled the caregiver card on more than one occasion. Brian shares his experience with scoliosis surgery soon after I completed my treatments for breast cancer during my first diagnosis. We talk about the shared decision-making model that both his orthopedic surgeon and my breast reconstruction surgeon practiced. It certainly made a difference in both of our recoveries and outcomes from surgery.
Brian taught me how to be a compassionate caregiver. His back surgery, traveling to Scottish Rite Children’s hospital for his surgery, and recovery became my call to duty as a caregiver. I remember the day of his surgery and when he was brought back to his room. Leaving his side was just out of the question for me. I slept in his room that night. It was important for me to be there for him just as he was for me during my first diagnosis. The care he received at Scottish Rite was phenomenal. I knew it would be important to continue this care when we returned home.
A Journey of a Thousand Miles
Each time a person is called to be a caregiver for a friend or loved one, you forge a lasting bond. When I think about the thousands of miles we have travelled together as mother and son, what I remember most are the lessons he taught me. Patience, compassion, listening, and sometimes just sitting there with me was enough. Our Journey of a thousand miles through both of our surgeries and recoveries taught us both, as Brian so poignantly and simply states at the end of the podcast, “Life’s always a Journey!”
Enjoy listening to our Journey of the Caregiver here: