Continuing my thoughts connecting
Jessica Alexander’s book, Chasing Chaos,
and the humanitarian aid industry to the long-term care industry …
Ms. Alexander points out one of those
tricky little problems that humanitarian aid runs into, namely the fact that
what they provide is not necessarily what the recipients want or feel they
need. Sometimes the recipients would
rather you gave them money to buy what they need instead of handing them a
bundle of supplies. Maybe it bugs them
when we build schools and expect their daughters to attend or latrines for
their refugee camps and expect them to use the smelly things instead of going
out to the bush like they’d prefer. Do
the outsiders with the money and education always know best? Do the aid recipients have any rights?
Of course, in long-term care, we do
prescribe to what is called the patient’s or resident’s “rights.” And one of those rights is the right to
refuse, whether it is something as critical as medical care or as “ephemeral”
as activities. It would be nice for us
providers if the residents always made wise choices. It would be nice if I always made wise choices!
It would be nice if we always knew what the wise choice was – drug
benefit vs. side-effect, wheelchair vs. fall risk, “healthy” food vs. comfort
food, activity participation vs. … wait a minute! … What could be good about
not participating in activities?
I
remember a resident I once worked with who was very limited in what she did,
usually spending her time in bed or in her wheelchair without moving much or
speaking. Well, we still took her to
group activities that we thought she might get something out of. This time, however, she moved around a little
and seemed to be trying to speak, so I leaned in closer to listen. “Get me the h*** out of here!” she whispered.
Her daughter and I were thrilled,
because in saying ‘No’, the mom had shown that she was still here, no matter
how passive she usually appeared.
On the other hand, is the tendency to only
trot out the same easy-going residents for every group activity. If someone says, “No,” then you don’t keep
nagging them. Maybe they say they’ve
worked all their lives and now they just want to chill out. Maybe they say they just want to be
entertained, and avoid anything physically active or productive. Maybe they just won’t let themselves be
dragged away from all the drama near the nurses’ station where they park their
wheelchairs for 12 hours a day. Unfortunately,
social scientists know that asking a person their opinion or activity
preference has very little correlation to what they actually do or not. We all know about the residents who say that
participating in religious activities is “very important” to them, but who
would never agree to come to a church service.
Where is the tipping point when there is interest but not yet the
corresponding action?
For my nurses’
station gang, I learned to take the games, crafts, sports, food socials, and
music to them. Near the nurses’ station,
they participated gladly. In this case,
as the saying goes, it was, “location, location, location.” For some of the men who were interested in
being productive, but didn’t want to do “girly” crafts, we got out the
wood-working tools and built “useful” stuff.
In this case, it was the content of the activity. Sometimes I’ve known residents who would not
go to a group activity by themselves, but would go if I made a point of
inviting them with their roommate or a friend and making sure they got to sit
together. In this case, it was the
relationship that mattered.
So, while the residents’ right to refuse
any activity is a good thing, we don’t give up too soon when they say, “No.” In the real world, there is negotiation, and
don’t we want our facilities to be more like that world?
© Donna Stuart, February 13, 2014*
Alexander,
Jessica. Chasing Chaos: My Decade In And Out of Humanitarian Aid. New
York: Broadway Books, 2013.
Let me know what you think.
*This article first appeared on the Metrolina Activity Professionals Association Facebook page on 2/192014.
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