Recently, my spouse had a terrible health scare. During an office visit, his primary physician, concerned over severe symptoms and MRI results, referred him to a specialist within a matter of days. He had to see a neurological ophthalmologist who would let him know if partial or complete vision loss was imminent. We were both scared.
We took time away from work to arrive at the morning appointment two days later. The difficulty of rearranging schedules, the worry of potential incapacity, the fear of the impact that this would play in our lives had resulted in a sleepless night. For me, this presented a unique emotional hurdle. My first husband died in 2006 after a lengthy illness. Last minute visits to specialists make my heart clench.
When the nurse entered the room, I had that flashback to helplessness. Needing to do something, I took out my phone and opened a note app. I began to write everything that was happening.
Checking vision can’t read at 30 without help Cant read at 25 Nothing at 20. Left seems worse. Can’t read at 30. Near vision smallest is blurry. Right seeing double more pronounced.
I recorded the actions the nurse took as well as what I observed. Initially, I did this to simply keep busy and force myself to be calm. Yet, as I continued to take notes, I was able to learn more about the symptoms my loved one was experiencing. My husband can be very specific when describing weather, cars, and organizing an emergency response. At home, “I have a headache” could mean “I am experiencing a profound concentration of pain behind my right eye” or “I have a dull ache around my neck” or “I have sinus congestion” or “I’m not listening to another Taylor Swift song at top volume.”
My husband went through test after test. Each time, I wrote down what was happening, no attention to proper grammar (what!!!?) or punctuation. By the time we saw the specialist, not only had I calmed down, but I had more informed and specific questions to ask. I can talk all day long; but speaking with purpose requires having a point of reference.
Being able to go back and reference specific points in the visit was very helpful. Although I didn’t know the technical term for anything, by showing the point in the process and the description of what was happening, the doctor was able to provide more explanation.
My husband is going to be fine. There will be no loss of vision at all. We know what the next steps are going to be. I’m grateful that we found the right person who was able to provide the needed care. This experience was scary, but I feel I discovered a way to manage the fear and make a bad situation better.
Note Guide
Most phones already come with apps installed. Samsung phones have Samsung Notes. LG phones have Quick Memo. Apple’s iPhones include the Notes app. Any of these will allow you to open a page to take notes. You can title the note by the date and name of the doctor visit. While these are helpful, they are tied to the phone. If you lose the phone, you may lose the notes, unless like the iPhone app, the note apps are connected across devices or backed up to a cloud.
My personal favorite is a small, free app provided by Google. Keep is available to anyone who has a gmail address. If you are using a Chrome browser, look for the nine dots beside your round login profile picture. Click on the nine dots and scroll down until you see Keep. Open Keep by clicking on it. If you’re using a desktop, you’ll see a rectangle at the top of the screen that says “take a note”. Simply start typing there. You can type in the title of the note or it will automatically assign one. There are features allowing you to set reminders, share the note, change the color of the note, add an image, and archive the note for later. Do not worry about formatting the font or color of the text. It isn’t possible.
Because Keep is a Google product, it is automatically saved in the Cloud of your Gmail account and viewable on any device, including your phone. Likewise, whatever you create on your phone will be automatically viewable on other devices. If creating notes on a tablet or phone, your device might be enabled with a smart pen. This would allow you to handwrite the notes. The device will automatically convert your script to typed text.
Mobile Keep will also allow you to insert recordings into your notes. At the bottom of the Keep screen, you will see a small plus sign. Clicking on that will allow you to see the options of taking photos, adding images from files, adding a drawing, adding a recording, or formatting in checkboxes that can be ticked off later. The recording feature does two things. First, it records the voice of the speaker on an audio track that can be accessed right there in the note by clicking play. It also transfers the voice to text so that you can see what is in the recording.
A word of caution regarding recording. Many medical facilities have been blindsided in the past by social media posts of videos of clinic visits. Not only does this compromise the medical history of the patient, it compromises the privacy of anyone else caught on video. Do not violate any hospital or clinic policy. Be up front with your provider and all nursing staff that you are taking notes because you want to remember what’s happening and to be able to ask better questions. Do not take videos. Audio recordings are sufficient to help you know what is happening and to replay it later. It may even be helpful to your provider to place the device in such a way that everyone can see the screen to know that you are not making a video or taking photos.
Following the visit, as soon as you have a chance to catch your breath, sit down and review the notes you took. This may be easier to do from a laptop or desktop. You’ll notice if you are using a desktop version of Keep, you can select the three dots at the bottom of the note to see more options. By choosing “Copy to Google Docs”, you will have full editing availability to change the font type, font color, font size and reorganize text. Because both Keep and Docs are cloud-based apps, any work you do in either space is available on any device.
Health scares are just that: terrifying. It is impossible to remember everything you see and are told. Use your resources to track everything that is happening to your loved one. Your notes don’t have to be perfect and they certainly don’t have to be technical. Simply recording the experience will be invaluable to your mental well being and your loved one’s care.
written by STEPHANIE CALL BOETTGER
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