RC: The larger issue in a relationship, and it’s so often unspoken, is how do two people continue over years to see each other as whole people when one is severely disabled?  How do people who were one thing physically when they got together, when they started going out, when they got married, evolve into something else over the years?  How do you see that person the way you used to see that person in terms of being strong, or being attractive or whatever your criteria are?  To me, that’s the biggest challenge to a couple.  

GB: What about reaching out and talking to others outside of your immediate family? 

MV:  We’ve learned to rely on friends when we need friends.  I think many caregivers don’t have a fear of accepting help, but they are embarrassed.  They don’t want to put people out and are reluctant to ask for help. I think it’s important to ask for help when you need help; not to shy away from that.  People want to help; so when we’ve needed friends in times of any kind of crisis, we ask.  And I think that’s real important for caregivers not to feel that it’s all on you at any given time, because it’s 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, you’ve coined some really great phrases regarding an area that we find challenges our readers as well.  I’ll 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.  

GB: What 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 don’t think any of us should hesitate to say to a physician, who is such an ongoing important part of our lives, that this isn’t working.  I think that people give doctors too much power.  I laugh when I hear the phrase “doctor’s orders” because I don’t 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.