The Partnership of  a Lifetime

Lately, I have been hearing from a lot of caregivers about dealing with their loved ones medical professionals. It doesn’t matter if you live in a bustling metropolis or in scenic rural community; this seems to be an issue of great importance to all of us. In response, I’d like to share the following email from a reader also dealing with this issue:

Dear Gary,

It seems that as my relatives have reached the stages in lives where their health has become an issue and caregiving has been needed, I increasingly find that those providing the day-to-day care are not given information or respect by the "professionals" in the medical community.  As one who has found through unhappy experience that these people don't know everything, I tend to read extensively and look for as much helpful information as I can. 

My dad is dealing with rheumatoid arthritis, stroke "recovery" and prostate cancer. I do not know all of the medications he is on. The doctors seemed to feel no compunction about scolding our brother that my dad was losing weight and muscle mass. What bothers me about the doctors, then, is that this is done without really knowing what he does eat, without scolding my dad for his finicky tastes, no discussion of the need for exercise to prevent loss of muscle mass. 

And here's the kicker:  when I ask my brother (who accompanies my dad to the doctor and has primary responsibility for the backbreaking task of caring for him, which he discharges selflessly) if he asked the doctor any practical questions about how to do this any better, he tells me he is afraid to alienate the doctor for fear of reprisal.  This fear is not unfounded.  In our one-horse town any such question is actually treated as some sort of challenge of their authority.   It would certainly be in the best interest of their patients if the caregivers are treated like a part of a team and armed with the most comprehensive information they can use and if their practical questions are answered.  If they have no answers why do they need to pretend that the questions are inappropriate?  

LB

Dear LB:

I think you have made some incredibly important points and I’m glad you took the time to write.  First of all, you hit the nail on the head about communicating with doctors and family members. This is a primary reason that I wrote The Fearless Caregiver book.  Your goal is to become an acknowledged member of your loved ones healthcare team. After all, the other members of your loved ones professional care team see him a few times a week, once a month, or even less. At the same time, your family’s knowledge of him is consistent and much deeper. You should be considered an asset to them as they plan and evaluate his health.  I know that, in many cases as you mentioned such help is not easily appreciated or sought after.   Understanding that you have your hands full with an entrenched medical community in a small town, (not to mention a parent who is not an active participant in his own care), making a solid case is your best bet.   

• Start (or have your brother start) a journal of what your dad really eats throughout the day and his daily health, include his exercise regime (if any)
• Create a list of questions that you want the care professionals to answer  
• Find some research backing up the points you want them to consider and
• When you are ready, make an appointment with the doctor and/or dietician with these specific communication goals in hand.

In this manner, you put the ball in their court. They cannot easily say that you are just an over-reactive daughter when you are armed with the facts. If your dad does go into a care facility (rehab or hospital) they have care plan meetings in which you should be able to participate.  What you are working against are the points that you brought up, but also the fact that your doctors are scientists and have spent many years dealing with concerned but unprepared loved ones, who do not bring these things to their attention in a manner in which they could and would respect. Let them know that you are a formidable ally in your dad’s care, and that you are not going to go away quietly or easily.  

Your dad is lucky to have you and your brother on his team.

Take care

Gary Barg
Editor-in-Chief
gary@caregiver.com

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Let's Talk About It - July 2008
Do you ever get angry about your caregiving role? If so how do you handle it? To participate in this this month's discussion, click here
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