FROM OUR FAMILIES
I. Patience
Bill Furlow
A retired journalist and communications consultant, living in Greensboro, North Carolina
As a person who spent seven years as a PSP caregiver, I have thought about the most important gift I would give others in similar situations if I could.
The answer is: Patience.
When you’ re a caregiver for someone who is afflicted with PSP, all expectations about how long things take to do or how difficult they can be to accomplish go right out the window. You and your loved one simply cannot do in a day or an hour what you once could do with ease.
Here are a couple of dictionary definitions of patience that may feel familiar:
• The bearing of provocation, annoyance, misfortune, or pain without complaint, loss of temper, or irritation
• The ability or willingness to suppress restlessness or annoyance when confronted with delay
Bear annoyance without complaint? Suppress restlessness over delay? That’ s not easy for most of us to do.
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Just as we know that courage is not the absence of fear but rather the ability to perform while afraid, patience is not the absence of frustration over delays or the difficulty in performing formerly routine tasks. Patience is the ability to power through frustration while maintaining an even keel and, we hope, holding onto our sense of humor.
To remind myself to try to be patient while my wife was in the late stages of her disease, I tried to think about how my showing, or failing to show, patience must appear from her perspective. It would not be unrealistic for me to be called upon to be patient 40 times in a given day. If I had a 90 % success rate, then four times during that day I failed to show patience. I lost my cool or snapped or said something I later regretted. And what was she likely to remember at the end of that day: the 36 times I was patient or the four when I wasn’ t? Even now, it hurts to think about that.
As caregivers, we must learn to slow our internal clocks. For me it was important to avoid putting my wife and myself in situations where we had to rush. Rushing leads to frustration, irritation, and, possibly, to accidents.
I learned not to extrapolate time because events rarely unfolded as I wanted them to. If I really wanted to jinx myself, I might think,“ We have 20 minutes to get in the car, and all we have to do is use the bathroom and brush hair. No problem.” Famous last words.
Instead of making assumptions about the future, I learned to try to envision it. I’ m talking about the next hour, or 15 minutes, or five, or even one. What needs to occur in that time, and what do I need to do to make it happen? I would literally picture the steps in my mind.