September 1998 - New England, USA
After I completed my thesis in graduate school, my advisers encouraged me to submit an article summarizing my research findings for publication. The unwieldy title of my thesis was, "Coping Strategies of Successful Caregivers of Nonambulatory Family Members". Nonambulatory means that the person is unable to walk.
My parents and one of my patients that I had followed as a visiting nurse inspired me to do the research. After my mother had a major stroke which left her paralyzed on one side and with the mind of a ten-year-old, my dad stepped up to the plate and cheerfully became her full-time caregiver. He had to assist her in the shower, dress her, learn to style her hair, do the grocery shopping, cook, drive, and pay the bills. Prior to her stroke, my mother was an avid artist and gardener. She grieved that she could no longer do these hobbies. The Lord took her home to heaven to be with Him five years after her stroke. I thanked God that she was no longer suffering.
"...Death is swallowed up in victory...But thanks be to God, who giveth us the victory through our Lord Jesus Christ." I Corinthians 15:54, 57 (KJV)
My parents were my inspiration for my research.
Another patient I visited at home was an elderly lady who was paralyzed from the waist down from a blood clot that went to her spine. Her husband faithfully learned how to provide all of her care and purchased a van equipped with a wheelchair lift. He struggled at times with sadness over his wife's loss of many abilities, but he did all the household tasks and driving. Other patients with similar disabilities ended up being admitted to a nursing home because their caregiver simply couldn't cope with all the extra responsibilities.
During my research, I interviewed nine caregivers of family members who were unable to walk and then summarized their problems and coping strategies. I repeated similar research that was done with caregivers of home hospice patients to see if they had the same problems and used the same or different coping strategies. A comparison of the two groups showed they only had one problem in common (stress) and three coping strategies (social support, cognitive reformulation, and respite). I developed an educational handout for nurses to give new caregivers of family members who were unable to walk.
I submitted my research article to The Nurse Practitioner journal and was thrilled when they accepted part of it for publication. They condensed my year of research and 48-page thesis into a mere three paragraphs. Such is the world of publishing... They included it under Practice Pointers and named it Lending a hand to caregivers.
"If you need to counsel a caregiver of a family member who has recently lost the ability to walk, use these suggestions to ease the load. First, tell him not to try to give care alone, but to ask for and accept help from family, friends, and health care professionals. To relieve stress, suggest that he try exercise, massage, eating out, music, prayer, reading, and napping.
Make sure he asks a physical therapist for assistance in choosing a wheelchair, if his family member can use one. Suggest using cordless and cellular phones, a lifeline necklace, and a pager to communicate with his loved ones when the caregiver is out of the house.
Finally, when traveling, recommend the caregiver pack a travel kit with a list of medications, provider phone numbers, straws, wipes, and other supplies."
I can't recall the last time I saw a layperson use a pager, and cordless landlines are disappearing rapidly. Cell phones are commonplace now, but they were rare in 1998.
After I entered the full-time work world as a nurse practitioner, life seemed to become too busy to continue to do research. However, I have participated in the Nurse's Health Study 2 since 1989 conducted by the Harvard School of Public Health. Their findings collected from surveys every two years of thousands of nurses have contributed significantly to women's health. http://nurseshealthstudy.org If you are a nurse and were born after 1964 and live in the USA, they are looking for participants to join Nurse's Health Study 3. I hope you will do so and continue this wonderful research that was begun in 1979.
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