Worrying about what's next
Entry posted by avantgardener
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Before I say anything else, I'd like to express my gratitude to everyone here. I don't know how I would have endured the last 6 weeks since Larry's stroke without this site. The people here, especially those who have already walked this path, are so caring, generous and wonderful - I was thinking about all of you today and wishing that we could have met under less traumatic circumstances, but I am SO GLAD you are here!
Larry had a very full dance card today. Of course everyone comes to visit on the weekend (which is actually good, since his therapy is minimal on the weekends, and the visits don't disrupt as they would during hte week). His brother from out of town visited today, along with his niece, and then right after that Larry's son Eric, and his wife and baby. Our friends Joy and Albert, who were here yesterday and saw Larry then, were back again to pick up something they left behind and wanted to visit again, but I told them that I thought it would be over-stimulation and they understood.
I finally went to see Larry late in the PM. I took advantage of everyone else's visits to get some things done around the house, but went over at around 3PM. Larry was OK but seemed a little down. I don't know if it was because of all the visits or what, but I suspect it was too much stimulation and that I should try to space it out a bit more. It's hard to tell his relatives (especially his kids) that Larry needs to rest and that sometimes he's not ready to see them. Hopefully they will understand!
The Kaiser case manager called me Friday afternoon. She said that Larry's progress is not as fast as they'd like (probably never is!), and that I should be prepared for the idea that they might transfer him directly from the SNF to home, rather than to acute rehab and then home. She also told me that I might get as little as 48 hours notice of the transfer. Needless to say, I freaked out. I asked her if she thought 48 hours was enough, and how she would feel if it was her husband - she had no answer - I told her that I expect and demand at least a week's notice, since I will need to hire an in-home caregiver, finalize the bathroom remodel, etc. etc. ad infinitum...I think she heard me, but it's very scary since I have NO power here. She then called back and said that she talked to Larry's doctor at my insistence, and that the doc will monitor Larry this week (as opposed to what? Total neglect all the other weeks??) and that she'll have the case manager from Acute evaluate Larry's progress, and they'll let me know what they think.
I am looking forward to and dreading Larry's return home. I know that as difficult as things have been so far, it's as nothing compared to what it will be like when he's home. I can't afford a live-in person, so that means I will need to work full time, then come home in the evenings and be reponsible for his night-time care, as well as weekends. This sounds exhausting to me already, but I will have to find a way to make it work - I am fortuntate to be able to afford even the 12 hours/day 5 days/week care; there are many who can't manage even that. I'm hopeful that Larry will improve in the weeks and months to come, to the point that perhaps he'll need only 5-6 hours of care per day, but that may not happen. That's the thing about stroke...no way to tell what will happen!
I'm just taking it day by day and trying not to get overly upset about things that may or may not happen. One thing I'll say about stroke is that it certainly does make you appreciate the moment and not try to control the future, because you can't. I wish I could have learned ths lesson some other way!!
xxx's and ooo's
-Janine
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