The problem with caregiving, in my opinion, is the steep learning curve and the high medical and emotional stakes of not having all the pertinent information at your fingertips when the need arises. Especially as a remote caregiver, this challenge feels overwhelming. You use websites, patient portals, calendars, ringtones, file cabinets, online banking and a host of other tools to stay connected and organized.
If I could recommend just one simple tool to combat this challenge (other than Family Link, of course!), it would be this: A SPIRAL NOTEBOOK. Get something that fits in your handbag so it is not one more item to carry. Maybe with a pocket inside the cover that you can slide a couple paper clips onto. Perhaps it can have scripture in the page footer. Or adorable puppies on the cover art. It can be a journal or something more in the school supply vein. Get a great pen in a fun color.
This notebook becomes your external memory so that you have everything at your fingertips instead of trying to remember everything.
1. Have a list of allergies and reactions listed.
2 & 3. Have a current list of medications with their dosages and a copy of insurance cards in the pocket, stapled in or transcribed, so it can be easily updated.
4. Have a brief medical history with surgeries and dates that you can reference instead of sitting in a waiting room racking your brain to reinvent the wheel. Most people have these on their computer and either forget to print it out prior to the appointment, or they are separate papers floating around that sometimes get forgotten at a doctor's office instead of just scanned and returned. Just keep a copy in your spiral notebook as your back up.
This notebook also records notes from doctor visits so you can convey information from one specialist to another. This notebook records facility staff names and conversations so later you can flip back to who said what when. Take notes on articles, videos and websites in this handy little pad. This notebook begins to be your go-to when trying to see patterns of behavior or trends in health issues instead of relying on anecdotal memory when making your case to advocate for a change in care. Set aside a coffee time to transcribe important things each week that are housed in patient portals like medication changes or questions for the primary care doctor.
It can also be your journal to process your stress and emotions as you persevere as a caregiver. It can be a means of looking back later over what your loved one expressed in these last months and years because you take a minute in the car as you leave to jot yourself a note of what they said. Use it to record what you are learning about yourself through caregiving. Or use it to relieve stress by doodling.
I keep my notebook in the trunk of my car in a bag that includes my POA and Health Care Surrogate documents, my mom’s insurance cards and checkbook, extra pens, a nail clipper and fuzzy socks because the ER gets cold. Something simple like a notebook can be the difference between being disorganized and conserving time and energy. It can help you focus during appointments and truly leverage a visit with a specialist. It can mean following up with the facility in just one email or phone call instead of a lot of back and forth. It can save your sanity and keep that hamster off its wheel in your mind at night. The return on investment is enormous.