I devote a good amount of my time speaking with caregivers, most of them are young and many of them are in the ALS community. So many of them have the same questions and frustrations. The questions that no one can or will give them the answers to and the frustrations of a broken medical system.
I can’t do much for them but I can talk to them, I can tell them how Duane and I coped. I can reassure them, tell them they are making the right choices, listening to their hearts and that they are doing an amazing job. I can give them everything I know. I can share my story and what worked for us and more importantly what didn’t work for us and what it didn’t.
In an effort to reach and support as many people as I can I am going to start sharing experiences here. Giving our reasoning behind what we did. How I saw the situation, how Duane saw the situation and what we did to meet in the middle. Most people don’t realize the decisions and planning that go into daily life when you are caring for someone and trying to give them the best life possible. Even a simply trip to Costco takes planning.
Hopefully the right people will see these posts and get what they need out of them. If you have topics you would like covered or any specific questions please email me at firstname.lastname@example.org I would be happy to discuss them in a post!
– xoxo Victoria