andrewf
Active member
- Joined
- Nov 18, 2021
- Messages
- 44
- Reason
- Lost a loved one
- Diagnosis
- 07/2022
- Country
- US
- State
- MD
- City
- Rockville
My father in law, Army Cold War Vet from the 1960s Germany..... It started way, back, back in 2020 with gait issues (he'd walked slow for years) then in 2021 surgery on his foot, and then his ALS really became apparent.
prior thread
Proper diagnosis June of 2022, and now in August of '23 he is very weak, unable to walk, arms still work, his speech is weak. He's almost 80, there is no fight in the man at all. I will say, unequivocally, that the VA has been tremendous support. I worked through PVA to get his benefits going, 100% disability + R1&R2 levels. They are providing supplies, gave him use of a super power chair, a hoyer lift, etc. VA provides like 36 hours of caretaker help and he pays for another 48 with his support money, that gets him 12-14 hours daily of help. This stuff can bankrupt a person. Having that off the table is a good thing.
That said, my mother in law sure is getting taxed by it. Shes always been the somewhat neurotic, over-analyzing type but also the type that is just not good at delegating. My wife is an only child, as am I. So we have to all work together to make stuff happen.
I'm kind of at the point where, as the Japanese say "Shakata ga nai" ...."it cannot be helped" I hope I spelled that right. He seems like he is gradually "tuning out." Not interested in anyone else or anything else. Doesnt read, never did. Doesnt play games, but never did. I think some vague form of FTD is creeping in, but its so subtle. Who can blame him though? Who can look at the situation and say "that's awful, you should be this other way!" None of us. I can say what I think I'd do. Be dictating my life's story to my family. Be rolling around on nice days in the sun, be just sucking the marrow out of whatever is left in this life. But that's me, 45.... and when I'm 80 (god willing) maybe I'd be just the same.
Whats hard to do is just stand aside and watch things happen inefficiently. My mother in law needlessly stressed out. But an important lesson I get is "dont add to the stress." People are who they are, and its not my role to manage it. I'm "supporting cast." We live close enough to help whenever needed, and we do. Its what family does
Just wanted to share this, its kind of cathartic to be able to write this down. I did realize there is something worse than ALS. Rabies. Got bit by a feral kitten 2 weeks ago and just finished my 4th and final rabies shot. Now thats a disease that strikes fast, messy, and permanent. Insidious, but also wicked fast.
prior thread
Proper diagnosis June of 2022, and now in August of '23 he is very weak, unable to walk, arms still work, his speech is weak. He's almost 80, there is no fight in the man at all. I will say, unequivocally, that the VA has been tremendous support. I worked through PVA to get his benefits going, 100% disability + R1&R2 levels. They are providing supplies, gave him use of a super power chair, a hoyer lift, etc. VA provides like 36 hours of caretaker help and he pays for another 48 with his support money, that gets him 12-14 hours daily of help. This stuff can bankrupt a person. Having that off the table is a good thing.
That said, my mother in law sure is getting taxed by it. Shes always been the somewhat neurotic, over-analyzing type but also the type that is just not good at delegating. My wife is an only child, as am I. So we have to all work together to make stuff happen.
I'm kind of at the point where, as the Japanese say "Shakata ga nai" ...."it cannot be helped" I hope I spelled that right. He seems like he is gradually "tuning out." Not interested in anyone else or anything else. Doesnt read, never did. Doesnt play games, but never did. I think some vague form of FTD is creeping in, but its so subtle. Who can blame him though? Who can look at the situation and say "that's awful, you should be this other way!" None of us. I can say what I think I'd do. Be dictating my life's story to my family. Be rolling around on nice days in the sun, be just sucking the marrow out of whatever is left in this life. But that's me, 45.... and when I'm 80 (god willing) maybe I'd be just the same.
Whats hard to do is just stand aside and watch things happen inefficiently. My mother in law needlessly stressed out. But an important lesson I get is "dont add to the stress." People are who they are, and its not my role to manage it. I'm "supporting cast." We live close enough to help whenever needed, and we do. Its what family does
Just wanted to share this, its kind of cathartic to be able to write this down. I did realize there is something worse than ALS. Rabies. Got bit by a feral kitten 2 weeks ago and just finished my 4th and final rabies shot. Now thats a disease that strikes fast, messy, and permanent. Insidious, but also wicked fast.
