The Art of Advocacy - When to Stand and Lead and When to Sit and Listen

Written by: Lorraine Twombly

Published: April 2011

Back in December I wrote about visiting my parents in Florida over the last five years to spend quality time. This past fall and winter, I spent two months there making sure all their emergency needs were met, etc. Here’s the link if you haven’t read it and would like to: Helping Care For Your Parents When The Time Comes (Part 1)

Now I’m back in Florida catching a few minutes here and there to write this article. As you may already know, all of us in our organization write articles every month and, even though there are many excuses not to write them due to our busy schedules, I am appreciative of this time-constraint challenge because I have found writing down my thoughts (or writing helpful articles) is very therapeutic and helps me to focus on the emotional impact and to think of ways to express those emotions.

My dad is suffering from many ailments right now and has needed constant care as of three weeks ago. He’s near 90 years old and has his sharp mind intact, but his body is failing him, and he has trouble communicating due to being almost completely deaf. My mother called me two weeks ago for help and off I went to do so. I nearly went down before she asked me to, but decided to wait for her call for help because I knew she would be ready to let go of this overwhelming event eventually. I can now help my mother because she is receptive and is now very grateful to have me around.

Here are some things I learned as a result of my dad being in the hospital and the rehab center:

• My parents do not know what kinds of questions to ask and frankly neither did I until I asked for the help I needed.
• I asked my sister-in-law and my brother to come down to help all of us as they are going through the same issues with her parents and therefore know a lot about how to help (and were able to get away due to their support system back home).
• Doctors are not easily accessible to the patient as they rely mostly on the nursing staff to do all the work based on what they recommend for meds, level of care, etc. (at least here at this hospital).
• Most folks (especially my parents) trust and listen (without questioning) what is recommended by the doctors and there are serious consequences that can happen as a result.
• My sister-in-law has been coaching me on what kinds of questions to ask, how to gain the knowledge of what’s going on by asking for the pertinent records from all who has had a part (hospital, medical offices, rehab center, etc.).
• By gathering the records we were able to see where one doctor gave the wrong medication, causing my dad to have another emergency transport to the ER and we discovered what went wrong simply by reading the notes that were written by all concerned.
• Finally as of early April, my dad has been improving in rehab, but he has been delayed by two weeks from the meds he was not supposed to take while in the hospital.
• Every day that goes by now, my dad looks stronger and closer to coming home with my mom, but he may have passed away during this error.
• We as care givers for our loved ones must advocate for our parents or loved ones in order to keep the medical professionals on the right track. We cannot just take what they prescribe or recommend as treatment, especially if doesn’t sound right or you get a feeling that something is wrong or forgotten.
• Using inquiry and keeping an assertive tone of voice works well and letting people know that you are advocating for your loved one is the best solution I have come up with so far...getting angry or showing aggressive emotions gets you dismissed as a viable advocate, which I’ve seen happen to my mom because that’s her natural reaction.

The biggest lesson I learned so far is that although medical professionals are supposed to know what to do, that doesn’t mean they do. They are human beings and can make some serious mistakes if they are over-whelmed, over-worked, and over-obsessed with getting all their patients looked after, rather than take a few minutes to make sure everything is being done for their patients.

I hope this article will help you to understand how important it is to research (if you can) the professionals you are dealing with (they usually have websites that reveal how good they are and if they’ve had any sort of malpractice, and I especially like the ratings compared to other doctors or facilities, which is good to look for), to research the facility that your loved one is going to, to have serious discussions with each health provider to ensure all is being done, and most of all to ask about each medication these professionals are giving them.

Thanks for reading and if you’d like to discuss this issue or send an email with questions, please do not hesitate!!

Lorraine Twombly