It wasÂ 11:10 pm on a Friday night. And it sucked. My husband wasÂ away at a conference in Dallas. I’d just spent most of the day in the hospital with my mom, whose blood pressure had spiked enough to concern a home-health person. The home-health personÂ called Mom’sÂ PCP (that’s Primary Care Physician, for those of you not “hip” enough yet to know all the hospital lingo!). PCPÂ said to take her to the ER. Day lost.
But did I mention that the REASON Mom ended up in the ER was because the PCPÂ had her on a heart-stressingly high dose of sodium chloride WITHOUT CONSULTING her cardiologist first? Turns out that excess sodium (even in one who is deficient), when a heart patient, can fuck you up.
From ER, they “got her a bed” (euphemism for checking her into the hospital for observation and testing)Â where she would stay for the next two days. “Med tweaks” is the term of the day in situations like this. As in, “let’s keep her for a day or two, run some tests, and see if we can ‘tweak’ her meds to get her stable again.” They don’t call it a medical “practice” for nothing, folks. Trial and error–often, more error than trial–seems to be the norm.
I don’t think it’s a coincidence that, on the day of this particular drama, ‘rebarbative’ was the Merriam-Webster Word of the Day (it means “repellant or irritating”). I find the U.S. medical establishment to be rebarbative. Like when I try to get one doctor to communicate with another…over and over again. And it never happens. Or to get my mom’s PCPÂ to talk to me…ever, let alone in plain English.
Now, I appreciate slinging big words around occasionally like the rest of us, but I do try to know my audience. I’ve found that the majority of doctors fail spectacularly at this. There was about a decade, as I recall, when the medical community caught on and started using laymen’s terms when communicating with patients and their families.
I call this “The Doctor” effect, from the 1991 film of the same name. Sadly, it didn’t last. Only two of my parents’ many doctors communicate well (frequently using clear terms and explaining whatever 80-character medical terms they spew when relaying a diagnosis).
Oh, and did I mention that Mom has mild dementia? You’ve read about Dad’s issues with late-onset Alzheimer’s, but Mom was also diagnosed in December 2014. I recently learned (during yet another ER visit) that every year you live pastÂ age 90, your likelihood to develop dementia increases by 50% (of whatever your likelihood would beÂ based on your individual prognosis).
Essentially, when you have someone with dementia and they end up in the ER, you have two possible outcomes. They either understand why they are there. Or they do not. Frankly, you never know when you get the call, which parent you will meet in the ER. Will it be the one who felt unwell and knows why she wasÂ brought to the hospital? Or rather, will it be the one who felt unwell and upon arrival at theÂ hospital is confused, combative, has no understanding of why she has been brought here, complains she is fine and wants to go home? It’s always a crap shoot. That’sÂ the reason a family member needs toÂ be present.
When people take medications routinely, it is critical that hospitals and doctors know what those medicines are so that they do not prescribe something that may negatively react with a current med. It could be fatal which is, you know, bad! Now, I don’t know how many times I’ve heard a nurse or doctor ask Mom whether her meds have changed. Her standard answer is “no,” which is simply not true. Mom has no idea if her meds have changed. She doesn’t manage them. I do. I’ve asked her to respond with, “I don’t know,” and to give them the meds list that I keep up-to-date and with her at all times. She doesn’t do that, of course, because dementia.
I’ve learned a lot ofÂ lessonsÂ over the last few months. Among them, I have to force the PCP to confer with the cardiologist whenever medication adjustments are thought to be needed. I have to constantly communicate with the home health staff who look in on my folks weekly so that they understand what “normal” looks like for a cardiac patient–in Mom’s case, 148 BP is just fine. Over 200 can now be managed with meds. If that doesn’t work, THEN ER.
Another important lesson is that I have to take care of me as well. Too often, we caregivers put aside our own needs. But we’re helping no one when we do that. So, after one week where I had TWOÂ ER/hospital events with Mom, I got a massage at a nearby spa to de-stress. After another recent ER trip that hadÂ me up at 1 am and back home by 7, I scheduled a mani-pedi. The point is, as a caregiver, IÂ matter, too.
If I’m not whole and healthy, I’m no use to those I advocate for.