Becoming Another Persons Advocate: First Thoughts
This morning has arrived in glorious style and fashion, preceding two days which are supposed to be scorching hot and all will be hard pressed to deal favorably with the quick removal of mildew from our joints and tissues. We will draw on our sunglasses and grin and bare it I am sure and certain.
How differently my life energy was being spent just a year ago as I was the chief advocate in my Mother’s health care, holding the rank of Power of Attorney and resident caregiver. Now a year and two days after her death, I am beginning to sort out the role of health advocate and make some rules about how to teach someone to be an advocate – just what are my recommendations?
Get yourself “grounded” is the first thing that comes to mind. What I mean by that is look at your reality and the reality of the situation. What is really going on with the other person’s health and outcomes? Is this just for six weeks post surgery healing or will this be long term and do you have the time to give to the situation and the energy and time to devote to this person? Can you afford this time out of your own life and needs? What are the financial resources available and expectations? Where is all the paperwork kept and what will you need to have with you at all times? What is your plan B?
I know, I know you are a kind and loving person who does the right thing and your style is just to go for “it” and life will just take care of its self and keep on moving along one day at a time. When you need to know something you will just receive the information. I can tell you that I have never met an advocate who did not have a notebook of things written down and I even carried a cloth bag of information, papers, books, entertainment, medications and food nearly everywhere I went for the past three years. I have also heard the horror stories of patients under went huge surgeries because their POA (Power of Attorney) did not have the proper paperwork in hand, the patient died and left gigantic bills in their passing and none of that was part of their planned directives, which they had worked out with their physicians and the advocate months in advance.
Before you say yes to this advocacy role, be sure you investigate all the paperwork involved in this decision. My youngest daughter had 12 major surgeries in her early days and we did lots of educational and emotional advocacy for her along the way; we have a dozen 3 inch binders full of notes and medical records and x-rays that can document and assist her in taking on the world and being a productive member of our society. Some of these books are well worn and we added lots of the fun things from her worldview to the books so that they are life stories not just baby books or school memories. When I was going from appointment to appointment in one day often our notes were more current than what the next person could find on the computer. Having a list of medications in hand and what they are being used for and how they are being administered is mandatory. I am sure I saved one person the dreaded laxative/anti-diarrhea cycle and my Mother several times was given a larger dosage of medication than was necessary because it was the emergency room physician’s routinely prescribed dosage and not what the patient needed. Everyone needs a list of medications in their pocket at all times with the dosage amounts. Having an appointment log means more time with the doctor of choice and less time with the Medical Assistant.
What is a medical appointment log? An invaluable tool of communication and I have written about these Personal Health Records on a post on this blog – referring you there.
I will just add that I used my hand held computer for keeping records at the moment and then transferring them to the home computer for future reference. These small computers made the health record so much easier to use and even more valuable a tool. I just didn’t have one of those in the good old days!
The last suggestion I want to make today is that you truly need to open your eyes and see the person you are in an advocating for. Figure out what they are trying to tell you and have some of the hard conversations with them along the way, you don’t want to be putting feelings and words into their life that they do not need or want. Try to understand who they are and what they need and don’t let them go to the doctor or hospital alone; be there for them.
All this makes me think of a poem, I think I will share it with you here:
To Look at Any Thing
To look at any thing,
If you would know that thing,
You must look at it long:
To look at this green and say,
“I have seen spring in these
Woods,” will not do – you must
Be the thing you see:
You must be the dark snakes of
Stems and ferny plumes of leaves,
You must enter in
To the small silences between
You must take your time
And touch the very peace
They issue from.
~ John Moffitt