there are many people that have this condition and it is a just as heart breaking as all the others. there are so many questions that i would have liked to know how to handle things, and what to expect. seems like no one really wanted to talk straight to us about it. had to learn so much on our own and found out things later that would have been more helpful if social workers would have told us sooner where to get help.
You gave so much of yourself as a caregiver and now you need care. It's got to be difficult to accept. I'm sure that you've contacted the ALS people and looked at their site at alsa.org.
I'm sorry if you felt a sense of rejection when you contacted the site since that isn't at all what I, or anyone else, meant. You wondered why ALS wasn't discussed more on the site and I wanted to explain that the site tends to lean where the readers take it. I failed to understand that what brought you to the site itself was that you’ve been a caregiver and that you are not a young person, either. You are now guiding us along with ALS.
Please check in with us often to let us know your caregiving story and your feelings about being a care receiver. We would love to hear updates on how you’re feeling in general, as well. You can help others with your story and we hope to help you in any way we can.
Take care,
Carol
Take care,
Carol