"It's been a roller coaster."
I haven't put up a post saying it's been a roller coaster, however, because It's been a roller coaster is fantastically clichéd - and seems oddly discordant under the circumstances.
Turns out it's not:
Patients with end-stage heart failure* have a trajectory of illness characterized by an overall gradual decline in function punctuated by periods of symptom exacerbation followed by a return nearly to their baseline. These exacerbations are not predictable.You can say that again.
Trajectory of End-Stage Heart Failure | Nathan E. Goldstein and Joanne Lynn
Trajectory of End-Stage Heart Failure
Nathan E. Goldstein and Joanne Lynn
Perspectives in Biology and Medicine
winter 2006 | volume 49 | number 1
p. 12
* I don't know what stage my mother is in.
My mom seems to be recovering -- at least, that's her plan.
ReplyDeleteTwo weeks ago I had two different doctors telling me it was time to send her to hospice (that's a story with a lesson); now we're wrangling with the nursing home over what kind of help she'll need to live in her house.
Characteristically, my mother thinks she will need no help at all.
Because she's going to get better.
Boy, that chart is about right. The time part is the mystery.
ReplyDeleteHave you thought about the sitter route? My mother was in bed 24/7 the last few months, but the sitters kept her in the house.
Hospice is sometimes tricky because they have these clear rules and if you aren't ready for them, they don't help. There's no in-between place.
SusanS
Hi Susan - I was meaning to call you yesterday & get a more 'precise' time line.
ReplyDeleteSo it was several months --- ?
Do you remember how things were after your mom got her pacemaker?
(Sorry everyone - I know this is way off topic.)
Getting back on topic, I have more than once wondered exactly what would be happening to C. now if he wasn't at Hogwarts.
ReplyDeleteDuring my public-school years of round-the-clock teaching myself math so I could teach C. math, I often asked myself just how much math I would be learning & reteaching if we had an illness in the family or a new baby or just one parent or significantly less income....
It is fantastically unfair to children, families, and citizens to expect parents to solve teaching & curriculum problems.
btw, one of the things I love about that chart is that it is a precise representation of my emotions.
ReplyDeleteCrash, then recover --- but never quite back up to 'baseline.'
(Which I think is good, actually. Didn't write that last to complain.)
For what it's worth, that chart is pretty much the path my aunt took two years ago. She was hospitalized a bit before Thanksgiving, after heart failure during surgery, and it was up and down until April, when she passed away (just a few days after we thought she was going to come home). So her whole trajectory was about six months.
ReplyDeleteOOps, I missed your comment, Catherine..
ReplyDeleteFor me, there were a couple of years of Mom passing out and fainting, with many meds being added on, before the pacemaker went in. Then, it was around 2 years with the pacemaker and a gradual, but distinct, decline. It was just like the chart. There seems to be a recovery after a crisis, but never up to the original baseline. Just when you think you've got a handle on it, something new happens.
I learned what true stress really feels like.
SusanS