Tess77
New member
- Joined
- Jul 11, 2021
- Messages
- 9
- Reason
- CALS
- Diagnosis
- 07/2021
- Country
- US
- State
- IL
- City
- Chicago
My dad got his second opinion/ confirmation from an ALS clinic in late July. He's had several EMGs all of them "dirty", all of them showing that it's happening all over his body. Right now he's just lost function in one of his hands.
Im terrified (obviously everyone here is too), but my dad has lived alone for 30 years. He lives half way across the country from me. I can't move back home because my husband is a scientist at a national lab, he's in the middle of the project he's building his tenure case on. Plus even if he wanted to leave/ reset his tenure clock, there's only been 2 openings in my husband's field in 100 miles of my dad in the past 5 years. We have two kids under 5. I also really don't think my dad will move here. He really can't take the climate here (in a northern city) he will only visit us between June and September.
So that leaves me stuck half a country away, terrified about who is going to take care of my dad and how I am going to make sure he gets what he needs when he needs it. He is focusing on doing all of the things he wont be able to do soon, which I support and I don't know how ready he is to talk about changes and what comes next (in terms of help, we have talked about medical preferences). He has lots of friends, but I don't know how reliable they are. My aunt and uncle live there and my aunt is very reliable, but I don't think he's going to move in with them.
I need advice. We need to start looking for somewhere new for him to live (I don't think he's super attached to the condo he has now, but it has LOTS of stairs). Do we look for an apartment for disabled people or buy a new condo and renovate? Do we consider a second bedroom for a paid care giver? I see that lots of people on this forum say it's better to continue to live at home with ALS, I don't love that idea since he's alone, but I've seen the arguments about the SNFs not having the proper training/resources. Also of course I'll ask him when he's ready to talk about it, I just want to be ready.
Also any gear that was helpful when you or your PALs couldn't use your hand but could use your arm still?
Im terrified (obviously everyone here is too), but my dad has lived alone for 30 years. He lives half way across the country from me. I can't move back home because my husband is a scientist at a national lab, he's in the middle of the project he's building his tenure case on. Plus even if he wanted to leave/ reset his tenure clock, there's only been 2 openings in my husband's field in 100 miles of my dad in the past 5 years. We have two kids under 5. I also really don't think my dad will move here. He really can't take the climate here (in a northern city) he will only visit us between June and September.
So that leaves me stuck half a country away, terrified about who is going to take care of my dad and how I am going to make sure he gets what he needs when he needs it. He is focusing on doing all of the things he wont be able to do soon, which I support and I don't know how ready he is to talk about changes and what comes next (in terms of help, we have talked about medical preferences). He has lots of friends, but I don't know how reliable they are. My aunt and uncle live there and my aunt is very reliable, but I don't think he's going to move in with them.
I need advice. We need to start looking for somewhere new for him to live (I don't think he's super attached to the condo he has now, but it has LOTS of stairs). Do we look for an apartment for disabled people or buy a new condo and renovate? Do we consider a second bedroom for a paid care giver? I see that lots of people on this forum say it's better to continue to live at home with ALS, I don't love that idea since he's alone, but I've seen the arguments about the SNFs not having the proper training/resources. Also of course I'll ask him when he's ready to talk about it, I just want to be ready.
Also any gear that was helpful when you or your PALs couldn't use your hand but could use your arm still?