Caregiver or Care-partner

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This editorial was inspired by a conversation I had with an advanced practice nurse (APN). The APN described a recent struggle working with a multiple sclerosis patient who arrived to her clinic via wheelchair - along with his wife - also arriving via wheelchair. The APN exclaimed, “I couldn’t even tell who was the patient and who was the caregiver!”
Nurses often work with the family and friends nearly as often as we work with patients. Patients come to us through many different portals, and with them, a diverse support system. Across a variety of diagnoses, and in a variety of different conditions, family play a vital role in recovery for neuroscience patients. As nurses, we continually adapt and change to meet the challenge of providing evidence-based care. Often, these changes are reflected in our language.
Words matter. We have come to accept that the term “family” now applies more broadly than by blood and marriage. Three decades ago, I recall how we only allowed direct family to visit. Nurses struggled to embrace the needs faced by the girlfriend of 17 years to be with her partner. We adopted the term “significant other” to reflect this. Over time, the term “family” is creeping steadily back into our lexicon. How else to describe the relationship of a 72-year-old being comforted by the child she raised despite not being related by blood or marriage?
Words matter. It is now 2017, and time to recognize that we have caregivers, but we also have care-partners. I first heard the term “caregiver” during my first year of nursing school. At that time, the term was most commonly used when referring to the one person most closely related to the patient. I first heard the term “care-partner” about 4 years ago. As neuroscience nurses, we should lead the charge to clarify the difference between a caregiver and a care-partner.
Enter the term “caregiver” into Medline or CINAHL and you are likely to be overwhelmed with references to caregiver burden. Caregivers are described as person who provides (gives) care to another. In neuroscience, we certainly see this. The 65-year-old who cares for (and about) his 65-year-old wife after a stroke has left her unable to speak, walk, or toilet independently. Certainly, this person is a caregiver. But, does this capture the breadth of the dyadic relationship between patient and family?
Just over a year ago I was the nurse assigned to care for Mr. Smith (pseudonym), a 52-year-old man with minor stroke. This was his wakeup call. Although he had no residual physical deficits after his stroke, he needed to think about hypertension, lifestyle, and diet. Over the next 3 months, I got calls and emails from the patient, and his wife. She lived through this just as much as he did. Together they worked (partnered) to make changes in both of their lifestyles. Meals changed, sometimes he cooked, sometimes she did. Sometimes he forgot to take his meds and she reminded him. Although he did not need help walking, he appreciated having someone with whom he could go outside and exercise.
Referring to Mrs. Smith as a caregiver denigrates both Mr. Smith and Mrs. Smith. He was not dependent. He was not, unable to provide care for himself. He did not need a caregiver. (Quite frankly, I don’t think she had any intention of going down the caregiver road just yet anyway!) But, she was with him every step of the way. From the moment she called 9-1-1 until the most recent clinic visit, she has remained by his side. Words matter.
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