I'm certainly overwhelmed by the positive feedback. Thanks so much for taking the time to respond in meaningful ways.
What I take away from this experience, even in its ongoing status, is that it is a disease that will not go away, and most likely will get worse. Of course that's obvious to you who have been dealing with it for longer than I, but I had to come to the place where I switched from "ok, how can we lick this thing," to "Ok, how do we find balance together."
For "my" it has meant, learning to PATIENTLY walk slower; to view obstacles through HER perspective, and to continue to be forward-thinking in my approach to each day.
I have to ask myself honestly what it is that I need from THIS particular web-group. She has a ton of support (not only from me, of course) from the medical community, and yet I don't want to miss out on something I can tell her of that she hasn't learned about. If there was a medical breakthrough or a different medical approach, ....I'd want to be able to bring it to her attention to help her. So that's part of what I wanted from this site.
The other is purely selfish, and I readily acknowledge that. It would be helpful to me to know that when "I" am discouraged......when "I" am feeling as if "my" world is too much, .......then to have other "care-givers" to talk with is helpful.
It is not normal or common for me to have self "pity parties" and I don't LIKE that feeling when it hits, for two reasons......one reason is that I don't believe that a person does themself any good by being an Eore (sp?). It is better, I believe, to face life as a Tigger, (Winnie the Pooh Characthers, whose names I never really learned how to spell).
Secondly, I have learned that it doesn't do any good for the others around you, and in this case, it is counter-productive, and contraindicated, in my wife's life to see me struggling.
So I suffer quietly, without complaint, and carry a double load at home. Much of what she was able to do, I now do, along with my own duties at home, and add work to that, and the "caregiver" is a real busy beaver!!
Arguments with "God" about this whole thing have yielded only silence. He has offered no explanation, no reprieve, ........As a "Preacher's Kid" I can recite all the verses about hope and His care, memorized years ago, and can intellectualize the responses that are patently appropriate, but they just don't seem to be enough.
Our grown daughters who have recently both had sons, have been reserved in their allowance of letting my wife babysit, of late, since it is quite clear that "mom" can't do for them as well as she would like. My wife's joy at being a Memeré is boundless, and she was very upset when she realized that she was deemed a "risk factor" in her grandson's lives. (Our daughters and we are close, so this was an especially difficult issue in our family lately). They feel only comfortable about leaving their sons with us when I can be there.
My wife and I both understand the limitations that have presented themselves because of this disease, including the limitations with our grandkids, but it is not an easy thing to face for either of us.
Someone jumped into the thread and spoke about typos or spelling errors, and I'm sure you'll find a few badly constructed sentences and perhaps some spelling errors in my OWN words, and if so.......I apologize before hand.
One of MY pet peeves is the use of the word "pleaded" (as in "he pleaded guilty"). The correct word is "pled".......and Judge Judy is the only person I've heard use it correctly, in YEARS......lolololololol.
"I was so much older then; I'm younger than that now." (Dylan)