I'm 27 and I live at home with my parents to help my mom in taking care of my dad. My dad was diagnosed with ALS (with PBP) about 2 years ago I think. Until this week, his progression had seemed to have leveled off. Until this week, he was still getting around in a walker (very slowly) with just occassional wheelchair use.
On Monday (Oct. 12), my mom came home from work at lunch and he told her he threw his back out; he has a very bad back after a lifetime of construction work. We think it might have just been the disease progressing, but regardless, he could no longer get around on his own at all. She stayed home with him all week. Friday (Oct. 16), he could no longer use his legs. The right was completely locked up and even if we can get him to his feet, he can't support himself any longer. We actually had to call 911 and get him taken to the hospital because we couldn't move him and he was so freaked out.
Of course, the hospital just said this was normal progression. They are sending a home health person by sometime today and said that we can get someone for a couple hours a day, but there is no way that it enough. We can't lift him to get him into a wheel chair and it takes both of us to adjust him on the couch/in his recliner (which broke today!). He is calling us constantly, seriously at least every 5 minutes. He won't accept that his legs don't work anymore. Within an hour of getting home from the hospital, he tried to get up, fell and narrowly missed cracking his head on a table. We were only out of the room for 5 minutes!
Neither of us has slept tonight because he is constantly calling us. When the recliner broke, I had to call the fire department at 3am to move him for us. He refuses to touch the hospital bed we have, so he is sleeping sitting up on the couch. He's only needed the full time caregiving for a week and we are both already so totally, completely exhausted. Also, he has a caseworker through the UCSF ALS center, but they have not responded to emails over the past several months.
I don't know what our options are, but I don't feel like we have any. I don't feel like we can stay here when he doesn't care that it physically hurts us to move him or that we need sleep or a minute to go to the bathroom. I know he is imprisoned in his body, but we feel like we are imprisoned in our house.
On Monday (Oct. 12), my mom came home from work at lunch and he told her he threw his back out; he has a very bad back after a lifetime of construction work. We think it might have just been the disease progressing, but regardless, he could no longer get around on his own at all. She stayed home with him all week. Friday (Oct. 16), he could no longer use his legs. The right was completely locked up and even if we can get him to his feet, he can't support himself any longer. We actually had to call 911 and get him taken to the hospital because we couldn't move him and he was so freaked out.
Of course, the hospital just said this was normal progression. They are sending a home health person by sometime today and said that we can get someone for a couple hours a day, but there is no way that it enough. We can't lift him to get him into a wheel chair and it takes both of us to adjust him on the couch/in his recliner (which broke today!). He is calling us constantly, seriously at least every 5 minutes. He won't accept that his legs don't work anymore. Within an hour of getting home from the hospital, he tried to get up, fell and narrowly missed cracking his head on a table. We were only out of the room for 5 minutes!
Neither of us has slept tonight because he is constantly calling us. When the recliner broke, I had to call the fire department at 3am to move him for us. He refuses to touch the hospital bed we have, so he is sleeping sitting up on the couch. He's only needed the full time caregiving for a week and we are both already so totally, completely exhausted. Also, he has a caseworker through the UCSF ALS center, but they have not responded to emails over the past several months.
I don't know what our options are, but I don't feel like we have any. I don't feel like we can stay here when he doesn't care that it physically hurts us to move him or that we need sleep or a minute to go to the bathroom. I know he is imprisoned in his body, but we feel like we are imprisoned in our house.