Awkward moment sin caregiving come and go
by Isabel Fawcett, SPHR
I'm From the Old World
Like so many Baby Boomers, I occasionally engage in comparing and contrasting days of old and contemporary culture. Then, meaning when some of us boomers were children and how we were reared by our elders. Back then, it really did take a village to rear a child.
One of my recent flashbacks from my childhood has to do with social rules of engagement whenever one visited friends or family in the hospital. For many of the adults in my childhood, common sense and social courtesy prevailed, including when visiting those who were chronically ill. It didn't really matter whether one visited a chronically ill individual in their home or in a hospital. There were overarching social expectations formally and informally conveyed to a generation of children, including me.
Old-World Rules of Social Engagement With Chronically Ill Friends and Family
- Hospital visiting hours were seldom breached ("Nurse Ratchet" might have appeared!). The first social expectation was to call the hospital's main number to ask about the specific nursing unit one would be visiting and whether there were special visiting hours in effect. ICU hours were different than surgical or maternity unit hours.
- Knowing whether the patient was allowed to have visitors was de rigueur. If, somehow an individual overlooked that not-so-minor detail, the visitors would be on the lookout for signage on the patient's door prior to entering the patient's room. Those were days when nursing stations were not disregarded by hospital guests. Visitors generally stopped at the nursing station first to ask whether it might be a good time to visit a particular patient. We always got a specific answer, too. Sometimes the nursing answer might be, "Just give us a few minutes," or, "Let me just check with the patient." Imagine that. There may have been a time when hospital patients were not socially invisible? Horrors! Like those old-time Virginia Slims cigarette commercials, "You've come a long way, baby," however dubious the long journey may be.
- Every visitor - even youth - knew when it was time to excuse him or herself by stepping outside the patient's hospital room, or leaving. Old World social etiquette meant that visitors vanished into thin air whenever any physician walked into the patient's room to speak with the patient. The same social protocol held true if any allied health professional needed to work with the patient for any reason. Sometimes close family asked the patient and/or hospital personnel who had entered the patient's room, "Do you need privacy," or, "Would you like me to leave the room….?" Imagine that one - dignity and respectful treatment of those who are chronically ill. Overly-invasive visitors and interrogatories about the patient's medical diagnoses and detailed health status updates from the patient were socially frowned upon. Individuals who chose to ignore such social conventions stood out like a sore thumb.
- If, at any time the hospital patient exhibited symptoms of physical or other discomfort or distress, the social expectation was that it was time for the visitor to leave and not test the patient's upper limits of physical endurance, or worse, stand and stare. Marathon patient visits were not the order of the day back then. Family members regularly fulfilled any marathon visitors' responsibilities.
- If the patient fell asleep or drifted off to sleep during the hospital visit, that would be the visitor's cue to exit stage, left or right - as we said our goodbyes to the nursing station staff and thanked them.
That Was Then. This is Now.
Fast-forward half century. I am full-time caregiving to a family member who is chronically ill. My mother's medical regimen requires multiple insulin injections daily, rotating to various parts of her body as medically recommended. She also requires multiple blood glucose finger-pricks testing. Mom is also mobility impaired, making it difficult for her to be the one to leave any room in our home if she wants or needs greater privacy. Some chronically ill elders suffer from incontinence. Others experience respiratory distress flare-ups without warning. Others may experience nausea at the drop of a hat. Eldercare is a roller coaster ride.
Having guests in our home for extended periods is not always convenient, unless guests realize and accept that there are times where greater privacy may be welcome by a person who is disabled. Sometimes there is an element of embarrassment or awkwardness for some chronically elders, spouses and occasionally primary caregivers, when others sit and stare at elders' care routines. Those are moments where the silence becomes awkward and palpable.
My personal commitment is to carefully think through extended-stay guests in our home for the duration of my days of care. All of our extended-stay house guests have the very best of intentions and are delightful company. It may be as simple as not having walked a mile in a chronically ill elder's shoes where feelings of social embarrassment can be sometimes subtle to the point of going unnoticed. Patient privacy is a reasonable expectation in acute and long-term care institutions, and just as often in the home.
Like other reasonable individuals, some elders want to blend and not stand out as being different.
Dignity in Eldercare
There is often no right or wrong way to handle these awkward moments. Sometimes caregivers must go with their best guess. As a personal reality check, I handed this article to my mother to read. I knew that if she disagreed with anything she would not hesitate to share her thoughts as she read. She chuckled her way through the content. She also made a few insightful statements that helped me realize that I have been successful in seeking to incorporate and understand her care needs.
Caregiving will always be about elder advocacy for me. Being a carer is larger than what or how I may think or feel. While I may remain a direct caregiver to Mom, I always will strive to balance her long-standing preferences and views on everything that affects her life directly. Once I understand what is important to a chronically ill elder whom I am assisting, I will honor and respect the elder's preferences and worldviews unless unethical, immoral, illegal and/or unsafe. No popularity contest here. I am just preserving life dignity for elders. They've all earned their social stripes.