By Paula Erwin-Toth MSN, RN, CWOCN, CNS, FAAN
November marks the beginning of National Family Caregiver Month. Many of us are not only health care providers, but we are also family caregiver; some of us are part of the so-called sandwich generation. Caring for aging parents along with raising children can leave you feeling squeezed in the middle. While being a family caregiver can be incredibly rewarding, it can be a challenge physically, emotionally and financially. Caring for a loved one with a chronic wound can be especially daunting since the time, skill and dedication required can be overwhelming. This is especially true for family caregivers who suddenly find themselves needing to learn a multitude of health related skills.
Management of diabetes, heart and vascular disease, malignancy, changing a wound dressing, taking their loved one to appointments and making sure they are present for home care visits can be incredibly stressful for everyone involved, even if you're a seasoned health care provider. Family dynamics change and relationships can be strained. Have any of you ever tried to parent your parent? I can speak from personal experience-that never, ever works out well.
A Nurse Turned Family Caregiver: My Story
When my Mom became ill with what turned out to be terminal lung cancer (in a lifelong non-smoker) we were stunned. Like every person facing a life-threatening illness, there is not a good time for something bad to happen. My Mom was my lifelong coach, advocate and best friend – I was born with multiple birth defects and she was tireless in reading, researching and finding out about the best treatments for me. She became a single parent, working at a low paying job to provide a home, food and health insurance for my brothers and me. She helped us with homework, transportation to games, paper routes, plays and picnics.
Just when she had reached the point in her life where she could enjoy her retirement years, the unthinkable happened. The tables were turned and now I had to be her advocate but in a different way than she had been for me. My reaction, after the shock had worn off, was to kick into nurse mode and attempt to take control of the situation by leading the charge into second opinions and appointments with specialists while balancing a very intense job and helping my husband who was caring for his aging parents and helping our daughter cope with a very tragic stillbirth.
Despite, or perhaps because of, my nursing background I took the lead in my mother's care and seemed to forget everything I practiced in my work life – the right every adult of sound mind has for self-determination and self-agency. All I could think about was saving my mother's life.
My Mom had a living will and granted me medical power of attorney should the need arise. We discussed end of life issues long before her health crisis and her calm determination made her path clear when faced with treatment options for her stage IV lung cancer. By the time she was diagnosed the cancer had spread from her lungs to her bones. She had only complained of being overly tired for a few months and suddenly experienced excruciating shoulder pain which turned out to be a lytic lesion. That is when we got the life shattering news. My eldest brother died in his 20s from leukemia and my other brother lived a distance away. As the doctors rolled in and my Mom and I asked questions, looked at CT and MRI scans, biopsies and listened to treatment recommendations, we were both trying to process all the information.
Patient Agency and the Nurse Caregiver's Role
The Oncologist and I were standing by her bed discussing the plan of radiation and chemo followed by surgery when my Mom interrupted. "Excuse me! I have something to say about these plans. Based on what you have told me and my own investigations into reputable medical/surgical journals it seems I have about 2 months to live if I do nothing and 6 months to live if I do everything you advise. Those six months will be filled with sickness and pain from the treatment with no clear long-term benefit. Is that correct?" The doctors were stunned and after a moment of silence they agreed her assessment was correct. They pointed out that a few people have actually made it to the one year mark but admitted most do not live that long. I could tell by the look in her eyes and the set of her jaw she was not going to choose aggressive therapy. She agreed to have her lungs drained, radiation to shrink the tumor in her left shoulder to ease the discomfort and provide pain relief, but that was as far as she would go. Supporting my mother in her decision is the most difficult things I have ever done. She died two months to the day following her diagnosis on her terms surrounded by her loving family.
I share my story with you not to gain your sympathy but to demonstrate the very real dilemmas faced by family caregivers every day of every year. Like most things in life, we tend to have a deeper appreciation and sensitivity to issues when we have experienced it ourselves. Do you have a story you are willing to share and explain how it influenced your practice?
About The Author
Paula Erwin-Toth has over 30 years of experience in wound, ostomy and continence care. She is a well-known author, lecturer and patient advocate who is dedicated to improving the care of people with wounds, ostomies and incontinence in the US and abroad.
The views and opinions expressed in this blog are solely those of the author, and do not represent the views of WoundSource, Kestrel Health Information, Inc., its affiliates, or subsidiary companies.