“That’s an odd association,” I can almost hear you saying. “Was he particularly prone to the illness? Did a particularly bad case of it hit him hard?” Well, no to both those questions –aside from all his chronic conditions, Dad was generally healthy as a horse. The connection resides in his lifelong refusal, in the face of nurses’ please and doctors’ dire warnings, to ever get vaccinated. Those conversations arose at almost every doctor’s appointment and ER visit, and his consistent response provided an important lesson: in the end, no matter how hard a caregiver tries to maintain a loved one’s health and well-being, that patient’s own will trumps it all.
The current flu season, a particularly virulent one, may finally be starting to wind down from its January peak, but I still am hearing recommendations for vaccinations for those who haven’t yet gotten the shots. Of course, the vaccine won’t protect everyone – as a recent AARP health story noted, vaccines typically are about 60% effective, and lower immune response can reduce effectiveness in older folks. But any benefit is valuable, especially given the particular risk elderly patients can face –the Centers for Disease Control (CDC) noted in January that more than 50 percent of flu-related hospitalizations and 90 percent of flu-related deaths occur among people over 65.
So why, given such statistics, did Dad repeatedly turn down the shots? He was convinced, you see, that the flu vaccine itself, would make him sick. No amount of explanation that dead viruses, not live ones, were used to manufacture the vaccine could convince him otherwise. He felt the same about pneumonia vaccinations. Early in his stay with me, I decided I wasn’t going to fight him on this, even if it meant some deep-breathing exercises every time a doctor or nurse resurrected the topic.
I was reminded of caregiving’s limitations this past week while reading a post in the Health AGEnda blog written by staff of the John A. Hartford Foundation, a group dedicated to elder-health issues. “Caring for Loved Ones: When Our Best Efforts Aren’t Enough” tells the story of an 88-year-old former geriatric social worker –yes, a social worker who’s career was based on helping patients and families organize elder care –began refusing the care she, herself, so desperately needed. Her daughters are both social workers dealing with aging issues and very attentive, and she has numerous friends also expert in the related issues. And yet, despite several near-fatal consequences, none have been able to convince this woman who still lives in her own apartment that she needs to re-think her living situation.
The situation must be maddening for her daughters– the writer puts the frustration all are feeling well, “How many social workers does it take to change the mind of a frail person?” I don’t think any number of social workers, or sons, daughters, doctors or nurses are likely to change this woman’s mind. But, as I came to accept with Dad and his flu-shot refusals (and any number of his other medical and non-medical decisions I thought to be ill-considered), I think that’s okay. It’s a tricky balance, between taking charge of care and respecting free will; but I think, until that will has completely lost all reason, it gets the final say. Accepting this point of view as a caregiver, though is possibly one of the hardest parts of the job.