Doctor appointments. Many of them. Different specialists. Different offices. Sometimes in the same day or week. It comes with the territory of being a caregiver for someone with a chronic condition, but it isn’t any less overwhelming.
There are two kinds of doctor visits. Doctor visits for discovery and doctor visits for follow up – which can sometimes turn into a doctor visit for discovery.
We recently attended an appointment with a highly specialized ophthalmologist. Like many other neurological conditions, multiple sclerosis can affect the optic nerve and may cause vision loss. And this appointment has been one of many over the last few months. Without even knowing it, the sheer volume of visits we have had with healthcare providers has trained me on how to manage the time we have with them efficiently.
Here’s what I’ve learned so far:
Tip #1 – Track Symptoms, Changes
Your loved one may or may not have the ability or capacity to manage tracking their own symptoms – but this is crucial, especially in diseases that are known to progress. A new or worsening symptom needs to be documented by the physician or healthcare provider. I find that it helps to use the notes application on my cell phone to write details about new or worsening symptoms including start date, duration, and specific details about the actual symptom. For those more savvy than me, there are fancy applications you can use to track symptoms – and lots of other things – if that is something you’re into.
Tip #2 – Transfer of Medical Information
Individuals who are living with chronic conditions usually see more than one medical provider to help manage different aspects of their disease. Most clinics will transfer records for patients – all you have to do is ask and fill out a form. Things may get complicated if the appointments are close together, and I recommend asking how long it takes to have records transferred and when you could follow up with the office to verify that the records were transferred. I have found that imaging results – like CT and MRI scans – can be difficult to share between providers because the files are so large and not all electronic medical records systems are compatible with one another. In those cases, I make myself available to pick up a CD of the scans and hand deliver them to the doctor needing them.
Tip #3 – Write Those Qs Down!
Medical appointment stage fright is a real thing and it’s happened to me, more than once. Time with any doctor is precious – but when you’ve had to wait weeks or months to see a doctor, attending that appointment and forgetting ALL of the questions you wanted to ask is just wasteful. Write those questions down. I have a running list of questions on my phone and I’m always sure to go through that list before we leave the office.
Tip #4 – Get Those Labs & Tests Done, Stat
Chronic conditions usually mean lots of lab work and sometimes other, regular diagnostic tests. It’s annoying, but it’s vitally important that those tests are done when they need to be done. If you have an appointment scheduled with a medical provider and they’ve ordered tests, do your best to complete those tests at least two weeks in advance. Some lab work needs to be sent out and can take some time to get results back to the provider. If a provider doesn’t have the test results they’ve asked for, how can they have an accurate picture of what’s going on?
Tip #5 – The Medication List
Another list – but this one will save you so much time. Keep a list of all medications – including the dosage and frequency – that your loved one uses, or has recently stopped using. Don’t forget to include supplements – like minerals and vitamins – as well as any OTC. Sometimes we forget that things like a nasal spray or laxatives – medical providers need all of this information to help them see the whole picture.
Tip #6 – Speak Up
I used to be timid at the appointments my darling had with his specialists (stop balking, even I can be timid.) That was a long time ago – but there were times when I wish I had spoken up, shared information that was lacking, or expanded on a situation that I found troubling. If you’re a caregiver, your perspective and involvement in the appointments is crucial. Doctors only have a limited amount of time with their patients – and if important details are missing, how can they evaluate and treat? If you are worried about usurping autonomy from your loved one, talk to them about your involvement in the appointments, and that you share a goal of keeping them well and that this affects BOTH of you. Caregivers know all too well that we aren’t the patient – but we are an integral piece of the puzzle that helps our darlings live their best lives.
Tip #7 – WRITE IT DOWN
Whether you jot it down in a notebook, or type a note to yourself on your phone, there are usually follow up items after a visit with a provider. Sometimes, it’s a referral to another specialist. Sometimes, its lab work or diagnostics. Trust me – write it down. We all have so much going on – especially caregivers – and keeping track of “to dos” can help alleviate some of the anxiety of remembering too late “that thing” the doctor wanted or needed done.