Care Partners are often a forgotten entity when it comes to ill loved ones. The article below, reinforces the fact that doctors often overlook the importance of the care partner. Thankfully, Jamey's doctor DOES recognize my importance and always includes me in our visits. However, if you have a doctor that forgets (they are human after all), don't hesitate to chime in and share, or gently correct an answer your loved one gives the doctor. Loved ones often forget, or downplay, what they are going through. It's important to give the medical expert an accurate assessment of your loved one's issues.
All too often, when in the clinic, a medical provider focuses on the patient and not the others in the room. This is particularly true for Parkinson's disease. We maximize and monopolize the time to focus on the patient's concerns. But we [often] neglect the care partner. This may be the spouse, child, other relative or a friend. They can be a valuable resource of information to corroborate the patient's story or to build upon it.
I recently had a spouse of a newly diagnosed patient ask, "What is my role in this?", essentially asking me the definition of a care partner. A care partner should be educated on PD, supportive of their loved one's symptoms, and ensure safety. They will become (if not already) the conduit or steward of information to/from the health care professional. You can imagine how important this can be for improving quality of life.
At the same time, this responsibility can be daunting and difficult to juggle. Care partners have been known to sacrifice their own health for their loved one. If that happens it weakens the delicate balance of patient information sharing with the clinician. The clinician is not divorced form any responsibility either and should remember to acknowledge and recognize "the other person in the room". *
*Copied from The Parkinson Path, PANC (Parkinson Association of Northern California) newsletter, Winter 2009, by Suketu M. Khandhar, M.D., Medical Director Comprehensive Movement Disorder Program, Kaiser Permanente Northern California.
As my husband's care partner, I have an app I use that helps me keep medical information in my phone. For years, though, I wrote in one of those essay composition books that college kids use for taking tests. Whether you use a techno savvy app, or go "old school" with paper, it's important for the care partner to keep a good record of what to ask the doctor, what his response is, the loved one's medical history, and all other items pertinent to the health of the loved one. (If you're using a composition book, put together one for yourself as well. If using an app, create a section for you, too).We are members of Kaiser so I use Kaiser's app. It is all-encompassing and syncs up our appointments with all our doctors, allows us to order our medications, and also let's us send emails to our doctor directly, as well as keeping our medical records at the touch of a finger.
There are all kinds of medical apps out there that will do the same for you. One that comes to mind is My Chart (by Epic Systems Corp). It will sync with your doctor's office, pharmacy, and all other aspects of your health care. It will not work with Kaiser Permanente, but has great reviews for all other health organizations, including many PPOs and HMOs. Searching for a medical or health app can be painstaking, but once you've identified what you need and which one to use, you will not be disappointed. It will keep all of your medical information for you, and as you think about things to ask the doctor at your next visit, you can put them into the app (or in your essay book) as you think of them. No more racking your brain to remember what you were going to ask. Keeping track of medication has never been easier, either.
I encourage you to take this step in your caregiving process. Be an advocate for your loved one, because no matter how good your doctor is, he can neglect to mention things to you. If you are the one following up, you will have some control over the course of action. And your doctor visits and knowledge of your loved one's health will be much better.
A little medical humor for you...
