https://www.caringbridge.org/
Here’s something I used for years to keep family informed while minimizing the effort required. Here’s how I explained CARINGBRIDGE to our families.
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Let me explain. I use CARING BRIDGE to keep my and wife’s family informed about her condition.
She hates to tell them: feeling she’s always got more bad news to relate, a litany of ailments that is just a never ending kvetch, and it makes her focus on the fact that she’s not going to get better. Ever. The docs are not optimistic about this long term. Everyone refuses to give us a five year estimate.
So, it is our unspoken secret that: I let them know, they pretend not to know, and she can tell them “happy stories” about how she’s feeling better. :-) She knows I do it, but pretends I don’t. Women are SO complicated.
I think you might find what I write “cavalier and sometimes upsetting”. Especially since I write it for a select audience that know how “crotchety” I can be. (When I’m old, I’m going to make some nursing home aide’s life miserable.)
To a certain extent, I agree with Frau Reinke. The Universe does supply what you focus on. So it is important for her to stay optimistic and positive. I can be the pragmatic realistic fat old white guy injineer!
As her PiA (I call it “patient advocate”; she calls it PIA.), I keep all the notes, do the RXes, and generally fuss over her like a mother hen. (I have a lot invested in training her.) Hope you find it helpful, amusing, and distracting from your own more serious load. We’re at the end of the story; your girl is at the beginning.
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This was a handy “ruse” to prevent the repetition to every one who is concerned. For those interested, they control their subscription to the news. It can come in email or text. Or you can visit the website and read it when your up to it.
Now I know you may or may not on the same path as her. Eventually you’ll get it all sorted out. Medicine is much better than it was for her in the 1980’s.
I have tried to convince others to do CARINGBRIDGE for their loved one, but no one seems to be interested.
You might want someone to do this for you to prevent the “repetition” from getting you down.
You may want to read what I did to get a feel for how to do it. When my time comes, as it does for all of us, I’ll do my own site. Laugh! I am sure that there will be at least one reader — me.
FWIW YMMV
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Posted by reinkefj 
Reinke Faces Life 