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Forcing the Attitude of Reality

Article on Caregiving. August 6, 2018

People with Parkinson's disease, like, I suspect, people with any serious condition, can fall into two groups based on their attitudes toward the disease. Some people wear their ailments like a garment, never failing to let everyone around them know how much they're suffering. Others don a more stoic attitude insisting that they're fine when any astute observer can see they are not. Sandra fell into the second group. She never complained or exaggerated her symptoms, and whenever anyone, including her doctors asked her how she was doing, she insisted she was fine.

I have no experience with patients who publicize their symptoms, so other than observing that any litany can become tiresome to those who are exposed to it. I also suspect that caregivers who feel put upon by a constant diet of complaints are doubly cursed. Objecting to their carees' complaints is a fast track to guilt.

But patients who minimize their symptoms also present problems to the caregiver. For one, caregivers can underestimate the amount of care the caree needs. On several occasions, Sandra would insist she didn't need help when she tried to get up or cross a room, only to freeze or worse, fall. I learned that despite how she said she was, I had to be vigilant so I could intervene when it was necessary.

Compounding this problem was her desire to remain independent, or as much so as her disease would permit. My interventions often intruded on that wish, so I had to take care to let her try whatever she could, only stepping in when both of us could see she needed it. There were times I wanted to say something like, "If you'd have let me help you, this wouldn't have happened." But I would rather have stuck duct tape over my mouth. She didn't need to be reminded how vulnerable she was.

The other area where her optimism was a problem was when she saw a doctor. Too often when she said she was fine, the doctor accepted her assessment without any investigation. I learned to sit in the background behind her and frown and shake my head when she minimized her symptoms. With some doctors, when we went in for an appointment, I'd ask the receptionist to speak privately to the doctor after the examination and I'd provide a realistic summary of her condition. Most doctors appreciated the honest feedback and even learned to discount her insistence she was fine.

All of this forced me to recognize that being a caregiver means not just responding to immediate demands, but also assessing the difference between the caree's presentation and the reality of her symptoms.