GB: What about
reaching out and talking to others outside of your immediate family?
MV: Weíve learned to rely on friends when we need friends.
I think many caregivers donít have a fear of accepting help, but
they are embarrassed. They donít want to put people out and
are reluctant to ask for help. I think itís important to ask for
help when you need help; not to shy away from that. People
want to help; so when weíve needed friends in times of any kind of
crisis, we ask. And I think thatís real important for
caregivers not to feel that itís all on you at any given time,
because itís not.
GB: I agree with
you that one of the biggest challenges we have as family caregivers
is to reach out and to ask. People want to help.
MV: Exactly, people want to help. I agree a hundred percent.
GB: Richard, youíve
coined some really great phrases regarding an area that we find
challenges our readers as well. Iíll give you a few of them:
communication copout, physician-assisted denial and keystone docs.
How do we better communicate with our doctors?
RC: I think that doctors need to recalibrate how they operate.
And patients need to insist to their doctors that they be seen in a
human way and treated in a human way. I wrote that too often we are
seen as cases and not people. We are collections of symptoms
and not human beings.
advice can you give a caregiver or someone living with chronic
illness about how to improve their communication with their doctors?
RC: I think that we shop for consumer items with more
care than we shop for doctors and I donít think any of us should
hesitate to say to a physician, who is such an ongoing important
part of our lives, that this isnít working. I think that
people give doctors too much power. I laugh when I hear the
phrase ďdoctorís ordersĒ because I donít think of anything a doctor
says to me as an order; I think of it as a suggestion. I think
we have to take more responsibility for our own relationships with
doctors. I think people are very passive and I think the days
of putting doctors on pedestals, hopefully, is coming to an end.
partner with your doctor, donít fear them.
MV: I think that a caregiver has to ultimately be the advocate
for the person with the illness and that means being their ears.
It wasnít the MS, it was with colon cancer when at the end of the
doctorís appointment, it was clear that Richard had missed so much
of it. Because he was hearing it, but it wasnít sinking in.
I think itís fair enough for the caregiver to be there with the
pencil and the paper and asking the questions because when youíre
the one with the illness, itís so overwhelming sometimes that you
donít hear whatís being said to you.