I get upset here and there. I think people deserve respect. I think I deserve a please and thank you. I think I deserve an I appreciate you. I don’t think I deserve to be pulled down from driving the boat to be absolutely reamed in front of people. I think I deserve to exercise so I can continue to care for him.
Apparently all those things are too much. I have been Duane’s full time caregiver 24 hours a day for 613 days. 1 year, 8 months and 4 days. 14, 712 hours as a sole caregiver. No break. I have never been away from him for more than 4 hours – 4 hours has happened 3 times in 613 days.
My favorite quote between Duane and I… We were on the boat in Havasu with my parents…
Duane: huffing and puffing.
Victoria: Im trying. Maybe one day I will do something right.
Duane: probably not.
Tonight I told Duane that starting tomorrow (after putting it off for a WEEK) I will be leaving the house tomorrow at 7:30am to swim. I went to say I was going to bed early so I could get up. I said this in front of his family. Well it is to 11:43 at night, Duane went to bed at 8:30pm. He is now up again, complaining of pain and laughing at a tv show refusing to go back to sleep. He completely and totally sabotages me and my needs. He have 4 examples in the last week. It’s rude and disrespectful. Everyone tell me to just be nice… well right now everyone else is asleep.
-xoxo Victoria
THIS IS ALS 
Victoria, I have been following your journey. It’s HARD. While I don’t have experience with ALS, I do have experience with SMA. Because I did not take care of myself, I ended up in a horrible clinical depression. I had to learn that I am important too. Perhaps it’s time for help with Duane….whether he likes it or not. Hang in there…..there are a lot of us out here that care.
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