a reply to: Night Star
Thank you, Raine.
I didn't publicly say anything about this last night, but we got released from hospital yesterday (ie Tuesday).
Long story short, I am firmly booked in for surgery in the Ceske Budejovice (CB) hospital on Nov 25. They have the best neurosurgical team in the
region, so the neurosurgeons in Jindrichuv Hradech hospital (JH -- where we were until today) consulted with them and set things up. CB is the first
port of call for all the more complex cases, so the docs in JH decided it was better for me to have my surgery there. They often cooperate with CB in
cases like this.
Nov 25 is simply the earliest date they have available at CB for scheduled surgery. They always have to keep some times open for the non-scheduled but
urgent cases, like trauma or sudden, major deteriorations etc.
So, rather than have me sit around in hospital for three weeks, the docs let me go home. However I am now under some pretty strict conditions -- AKA
"doctors' orders". I must take things very easy, not lift anything heavy, and call an ambulance if I get any symptoms of further serious
deterioration. Meanwhile I'll continue my regular visits to my own doc for daily infusions, then in the week before I go into hospital he will do all
the pre-op prep stuff with me.
Meanwhile I have to care for Dada, at least until she goes into the temporary care center on Nov 12. She is now pretty far gone; the docs describe her
as "severely demented". She rarely responds to anything said to her, has to be monitored non-stop, and is frankly an awful lot of work mentally and
physically to manage.
The docs and nurses in JH were very sympathetic when they saw just how bad she is. They said it must be hard to deal with and yeah, they were right:
by about 7 in the evening yesterday I was exhausted from caring for her since we got home cca 4 hours earlier. (This was after a pretty long day in
the hospital, though.)
That's one of the reasons I didn't say much last night. I was feeling pretty down and negative, so preferred not to go into details.
However I need to point out that any major changes to her daily routine always unsettle her a lot. This is normal for people with her condition. Today
she is a little better than she was yesterday. Several times today she even responded directly to what I said to her. She's also on a new medication
to help calm her down a bit and yes, it helps.
Somehow I have to manage while I "take things very easy". However now that her new medication is starting to have its effects my work load is a
little lower and that helps us both.
As for me, I'm managing. I had my infusion this morning and got through the day pretty well. Nov 25 will come along soon enough, and hopefully the
surgery will go well and then, once I've recovered and she can come home, I can do a better job of caring for her.