Welcome to On Caring and Grief! Here, you will find advice on how to advocate for the best patient-experience possible for your loved one or even yourself, all based on real life examples. What do I mean by the “patient experience?” Well, depending on where you look, you’ll find a different definition for the phrase. I’ll be using the phrase in regards to making sure you’re getting the information you deserve and are entitled to, the proper care and attention, making sure that you or your loved one’s medical team knows you or your loved one as a person and not just a patient with an illness, and more.
Let me stop here to tell you a little about myself before going any further. I’m not a doctor. I’m not a nurse. I’m not a social worker. I’m a user experience designer (think web design, but not graphic design). What makes me qualified to write about this topic if I work in a completely different field? Well, what I haven’t mentioned yet is the fact that I am also my husband’s healthcare advocate. The short story is that I have spent 15-months by my husband’s side while he has dealt with cancer and extreme (no, really, extreme) complications from chemo. 14 months of this ordeal were spent in the hospital, 345 days in an acute care facility and I forget exactly how many in a long-term acute care/rehab facility, to be specific. During this time, my husband was intubated twice, lost his vision, and is now in kidney failure. Feel free to read the full story here.
Clearly, the patient experience is an area that I have learned a lot about during this entire ordeal, and so this blog is a space for me to share what I now know with you in hopes of enhancing your own experience. With all of that said, though, I want to emphasis again that I am not a professional. I’m just here to share with you what I have learned and what has worked and has not worked for my husband and I.
So, what can you expect to find here? Topics such as:
- How to get the most out of your conversations with doctors. Don’t let them rush you out the door!
- Managing anxiety and fear when trying to understand what’s going on in an emergency
- Ways to stay organized – doctors appointments, receipts for tax deductions, paperwork, etc.
While I continue to get set-up (and writing!), feel free to click those social media links at the top of the page!