Thursday
Got another daytime false alarm! Excellent. I need to remember to keep my pump remote handy in the daytime (it usually lives on my nightstand) because the pump itself can’t tell me why it’s alarming. The remote has the display.
I did my full exercise regime including the two new ones, and I used my spirometer a lot. One of the new exercises is to stand up without using my hands to push off the chair and then slowly sit back down. Oof. Three times in a row is all I can manage!
I just watched the Antiques Roadshow (UK) nursing special and it was so interesting. Jo Brand talked about her career as a psychiatric nurse, they talked to the nurse who basically designed the whole system for caring for HIV/AIDS patients in the UK, they looked a historical nurses uniforms, they spoke to the daughter of the woman on whom the main character of “Call the Midwife” is based. I’ve never seen it, though I know it is much loved, but after hearing her described as “the James Herriot of midwifery” I am eager to try it.
They also mentioned palliative care, and that most people have never heard of it. I was one of those people till a couple years ago. My California doc set me up with palliative care but I only had one office meeting at which they basically said, “what can we do for you?” and I said “Um, what did you have in mind?” and that was as far as it went.
My Oregon doc suggested I try again and I’m so glad he did! This palliative care organization is SO much better. Nurse Adam comes to my house once a month or so. He checks all my vitals, of course, and we have a long chat about how I’m feeling, what’s going on with all my specialists, any medication or prescription difficulties, etc. He can read all the correspondence between my various docs and me, he can see all my test results and the notes from all my office visits. He is an extra brain who helps make sure all my care is coordinated and that nothing slips through the cracks. He set me up with physical therapy, and a social worker to help with my advance directive. He’s never in a hurry. He makes me feel heard and cared for.
Palliative care is designed for people with serious, complex, difficult health conditions. Terminal or not. Do look into it if this describes you or someone you love. Try to find an organization that makes house calls. If you’re in the Portland area, I recommend Signature Home Health.