By Janet Coulter, MSN, MS, RN, CCM
Imagine you are on a plane and the pilot signals an emergency. Oxygen masks fall from the overhead space. What should you do? What did the Flight Attendant say during that routine pre-take-off safety demonstration? Oh, yes. I remember. I should put on my own oxygen mask before helping anyone else. The same thing holds true for caregivers. Caregivers must take care of themselves before they can effectively take care of others.
Being a caregiver is a tough job, but it can also be extremely rewarding. Caregivers experience a mixture of feelings. On one hand, being a caregiver demonstrates love and commitment and can be a rewarding personal experience. On the other hand, it can cause feelings of anxiety, worry, anger, fear, frustration, guilt, sadness, and loneliness. It can be an emotional rollercoaster. The case manager can play an important role in decreasing the mental, physical, and emotional toll of being a caregiver. Caregivers need caring and compassion, too. Unfortunately, the caregiver often neglects their own physical needs. Are they getting enough sleep and eating healthy foods? Are they getting regular exercise? Case managers need to encourage the caregiver to take care of themselves and to continue with health promotion activities. Sometimes caregiver just need someone to acknowledge their struggle and remind them that they need to be in good health to be able to provide care for someone else. Another important step is to encourage the caregiver to seek and accept the support of others. Many caregivers are reluctant to ask for or accept help. Remind them that reaching out for help it is a sign of personal strength not weakness.
I was the caregiver when my husband had a liver transplant. I experienced the roller coaster of emotions and feelings, the joy and the guilt, the loneliness and the support of family and friends. While my husband was in the operating room receiving the new liver, my daughter and I were in the SICU waiting room waiting for word from the surgeon on the progress of the surgery. Without even discussing it, my daughter and I knew we were not leaving the SICU waiting room until the surgery was over, and we knew the condition of my husband, her father. About an hour and a half into the surgery, we received a visitor in the waiting room. A dear friend and case manager had brought us lunch – fried chicken, French fries, and a drink. What a great surprise! I will never forget it. I had not realized how hungry I was. I had been awake for over 30 hours, had not eaten lunch or dinner and had only drank one bottle of water. It was so nice to have a “picnic” in the waiting room. It took my mind off the situation for a few minutes and satisfied some of my basic needs.
I pride myself in being independent and strong – and maybe a little stubborn. After all, I am an RN and a case manager. I felt like I had been in training for this role as caregiver for my husband my whole career. After my husband was discharged home, my focus was on my husband 24/7. He slept on the recliner, and I slept on the couch right beside him just in case he would need anything during the night. Our days were full of recovery activities: PT, OT, dressing changes, blood sugar checks, many medications, B/P checks, and daily weights. It seemed as soon as we completed the morning routine, it was time for lunch and the routine started over again. It was like ground hog day with Bill Murray.
Because my husband was immunosuppressed and we were in the middle of a pandemic, visitors were not allowed in our home. Social contact was by phone calls and cards. My husband especially liked it when he received mail. Many people offered to help during my husband’s recovery period, and I always responded with “Thank you” and “I’ll let you know…”. One day I went outside to sweep off the sidewalk between our front porch to the driveway. In those few minutes outside - away from the situation – I started to cry and realized how stressed I was. It was then that I understood that I needed some support. I was stressed and overwhelmed - physically, emotionally, and mentally. I decided it would be okay to accept the assistance that was offered. This decision made a world of difference. Our family and friends ran errands, went to the grocery store, brought in dressing supplies, and a wide variety of things. Co-workers offered to send meals. Menus from local restaurants were emailed to us along with instructions to select what we wanted and the date/time for the meal to be delivered. This was perfect for us as my husband was on a special diet and we could plan the meals according to our schedule. The doorbell rang one afternoon, and a Brownie Girl Scout handed us several boxes of Girl Scout cookies. We told her that we had not ordered any cookies. She responded that someone had ordered and paid for the cookies with instructions to deliver them to us. What a great surprise! We received several surprises like that! My daughter mailed a care package every week and my husband was delighted when he saw a package on the front porch! It was the highlight of his day! My husband and I were shown so much kindness and caring from family, friends, and co-workers. Every kindness shown to him was, in turn, a kindness shown to me.
It has been three and a half years since the transplant and my husband has totally recovered and is doing very well. I learned many things during this adventure. I learned that even small gestures can mean a great deal to the receiver. Accepting assistance was lifechanging. Thinking you can feel happy the whole time you are the caregiver is unrealistic. But if you focus on the positive, find the joy in what you are doing, and have a positive outlook, being a caregiver can be extremely rewarding and have healthy outcomes for the caregiver as well as the patient. I hope you accept the challenge of caring for the patient AND caregiver! Caregivers need care, too.
https://memory.ucsf.edu Caregiver Wellbeing.
Thank you for sharing your story, Janet! Such a valuable read.
Amazing journey of a caretaker. We nurses are stubborn, we don’t think we need help. So glad you shared – the role of a caretaker.
What a heart warming story Janet! Thank you for sharing the importance of taking care of the caregiver and also reminding us how important it is to outreach others who need that care!
Thanks for the great reminders about the need to care for the caregiver Janet! I recently heard someone say that self care is not selfish care , it is essential in order to continue to care – a bit of a mouthful but so true! And you make a great point that it is often hard for us to say yes or tell people what we need, but it is so appreciated when folks step up and just take the lead to do something – yay for Girl Scout cookies!
Thank you Janet for telling your story so beautifully.
This is very moving to read and thank you for sharing such personal experiences. Sometimes it’s hard to know what to do for someone who is a caregiver, but you really provide some great ideas! “Accepting assistance was lifechanging” is such a powerful lesson to share.
Thanks Janet for sharing your personal struggles and wins as a caregiver. So often, the caregiver isn’t given or doesn’t have this support and it is so needed.