I started writing this editorial in April. November is National Family Caregivers month, and a focused issue on family caregiving had been planned for the November/December issue. So, I am thinking, wow, piece of cake. The words will just roll off of my tongue, and the editorial will be done early. I've been a family caregiver twice, the first time with my mother who died from cancer 22 years ago and the last time with my husband. In 2013, I wrote a memoir from a journal I kept while my husband was living and dying with cancer (Larsen, 2013). But now sharing words about caregiving is difficult. You live caregiving; you breathe caregiving; it is your life.
In November 2010, my husband, Randy, was recovering from a planned hip replacement surgery. Perhaps 3 weeks after the surgery, he began complaining that he was having a hard time swallowing. A visit to our family physician, followed by an appointment with a gastrointestinal specialist and subsequent imaging and endoscopy revealed a large mass in the middle of his esophagus. The diagnosis was esophageal cancer, Stage IIIb. At 63, my husband and I were still working, he as an architect and myself as a nursing professor, and we were not anticipating retirement anytime soon. Looking back, I couldn't have imagined how the next 18 months of our lives might progress. I am thankful that neither of us could see beyond that first day. I became an official family caregiver on November 23, 2010. Although I had been a caregiver for my mother previously, this was different. This was my college sweetheart, my soulmate, the father of our three children, my love through 42 years of marriage.
My journey into caregiving was hardly unusual. Approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months. Being 63 and beginning a caregiving journey with my husband? It was unique to me, however typical as nearly 34.2 million Americans have provided unpaid care to an adult aged 50 or older in the last 12 months. (National Alliance for Caregiving & AARP Public Policy Institute, 2015).
I wish I could say that our caregiving story had a happy ending; however, it didn't. Nearly 18 months from the day of his diagnosis, my husband died. He was 64 years old. I'd also like to say that we had many "good" days together and few "bad" days. However, like many of the family caregivers that we know or see in our practice, that was not our experience.
What lessons did I learn from being a family caregiver that could help you in dealing with families?
* Listen to the family caregiver. They know the patient; you do not. Each and every patient you care for is unique. We talk about that a lot as nurses, but rarely does it sink in until either you or a family member is ill. The family caregiver is the one that will recognize subtle changes in the patient that you might not as the professional. Listen more, talk less.
* If your patient's family caregiver is a professional caregiver as well, let them be a wife, daughter, son, aunt, and so forth. How many times I wanted to reach out and say, "Stop, I don't want to hear all of the medical jargon, again. I know the down side of most everything you are saying. I just want to be a wife today."
* Most family caregivers experience days when they do not know what they need. So when you come to them and say, "What can I do to help you?" they have no idea how to answer. They are, perhaps, hanging by a thread that day and can't verbalize their needs. Spend time with them. They need your support; however, not necessarily your advice.
Sometime in our lives we will become family caregivers[horizontal ellipsis]at least once and perhaps several times. The "who" and the "when" are unknown to us.
Pamala D. Larsen, PhD, RN
Editor-in-Chief
Rehabilitation Nursing
Loveland, CO, USA
Conflict of Interest
The author declares no conflict of interest.
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