Caregiver Support from a Nursing Perspective
Article contributed by Mayo Clinic staff Gina Lange, R.N.
Care ▪ giv ▪ er noun 1. One who gives the tremendous gift of love and aid to another 2. Symbol of strength and dedication
I think the above definition gives a really good idea of what a caregiver is, but truly there is so much more. Prior to coming to the Cancer Center, I was a CAR-T (Chimeric Antigen Receptor Therapy) Nurse Care Coordinator. During those four years, I met many amazing individuals, both patients and caregivers. In my experience, there is one role in my opinion that gets overlooked. You guessed it, the caregiver. Now, it doesn’t get overlooked due to not having importance, but more because it is what is needed and expected. Whether this is right, is an entirely different article. Today, I’m going to focus on the expectations of the caregiver, highlight the significance of this role, and potential resources for caregiver support.
To be a candidate for a therapy such as CAR-T, it is required to have a 24/7 caregiver. Now, this may not seem like a lot to ask, however many patients are referred to CAR-T after failing a bone marrow transplant. What does that mean? It means that the patient and their caregiver have already been off from work or away from home for one to two months, maybe more depending on previous treatments. Now the patient is getting devastating news that their disease has relapsed, and we are asking them to come back for more testing and to stay a minimum of another 5 weeks after infusion. This does not include the numerous evaluation appointments and collection prior to the infusion. We won’t even get into the emotional or physical rollercoaster the patient is experiencing and now add being away from home for another extended period.
Imagine having to push the “pause” button on your life and relocate for a minimum of 5 weeks. This is a big ask by itself, and then add the financial strain, job status, pets, daily tasks at home, etc. The average population cannot endure limited to no income for months at a time. Moreover, you need a 24/7 caregiver.
What is a caregiver? In the definition above it states, “symbol of strength and dedication.” How does one provide strength when they themselves are beat down? More times than not, the caregiver is putting in more hours than they would in a full-time job, but not getting paid. Dealing with the emotional highs and lows and trying to navigate how to care for their loved one without often having a medical background. The caregiver role does encompass everything from a friend, confidant, teacher, nurse, chaperone, advocate, and many more. I personally was a caregiver for my mother and father when they were going through their cancer treatments and eventually hospice. I can tell you this was one of the hardest tasks I have faced in my years. There were so many times I felt defeated and wanted someone to tell me how to make it right. Each day was a new battle, whether it was trying to figure out what meals to prepare, manage pain control, incorporate exercise, and/or discuss emotional wellbeing. Caregivers pour their heart and soul into their loved ones, and I think the toughest part of it all, is that you really have no control over the outcome.
I’m here to tell you that regardless of the outcome, you do make a difference. The caregiver is an integral part of the care plan and team. Your loved one could not receive the medical care without your support. You may not be recognized from the patient, family, friends, or the medical staff; however, you are a key piece to the plan of care, and it could not be completed without you. To care for someone, you need to care for yourself first. There are outlets to help with the emotional strain. If you feel you are in the position and need someone to talk to or learn about ways to deal with the stressors, please see the resources below and know we are here to help at the Cancer Education Center. Stop in anytime between the hours of 8 to 5 on the Gonda lobby level for additional information or support.
Imerman Angels’ mission is to provide comfort and understanding for all cancer fighters, survivors, previvors and caregivers through a personalized, one-on-one connection with someone who has been there.