Josephg
New member
- Joined
- Feb 14, 2020
- Messages
- 3
- Reason
- CALS
- Diagnosis
- 12/2019
- Country
- US
- State
- NJ
- City
- North Arlington
Hi all,
Im Joe. Im 21. My dad has a very aggressive form of ALS. He was officially diagnosed this past December 2019. I saw him back in August/September and he was perfect, walking, talking, driving etc etc. Fast forward 3 months to his diagnosis he can not walk, barely can talk, can not move on his own, wipe himself, or do pretty much anything. Doctors say they never see ALS progress so fast it is like he had it for years.
I lost my mom last year to Cancer. She was 55. Now im going to lose my dad he is 51. I am 21 with no other family members besides my girlfriend who is a great help she is amazing. We plan on getting married as soon as we graduate college this may.
So as you can imagine its so hard to care for him given my age as well as im in school i work etc have little money etc etc.
Lets get into my question.
Right now he cant walk at all. Not a step. He cant use his hands other than a tiny grip on a sandwhich (yes he can still eat thankfully but slowly getting worse) he cant clean himself so i have to or my girlfriend has to clean him. He calls me every 5 mins for help I havent had a full nights rest in over 2 weeks since I left my apartment where me and my girlfriend lived and got a new 2 bedroom to give dad 24/7 care. But He doesnt let me sleep and i cant live like this. We have an aid 5 days a week and its like $4500 a month. Crazy expensive. He is so demanding that i never get a chance to sit and take a breather. My body is sore. My shoulders my back my everything from lifitng him and moving him to get comfortable EVERY 15 MINS. He has to pee every 10 MINS. Its so much work and i cant do it now at the stage he is in..... now this really gets to the point of my question...
Him being where he is at now is SO HARD. Its only going to get worse.... how in the world am i supposed to do this when he gets to a point of 0 speech, 0 movement, 0 abilities basically paralyzed. If i can barely do it now how will i be able to then? I just dont know. Im so stressed so achy and so TIRED. Please help or someone tell me about what they experienced with their family memeber with ALS i want to hear stories to learn more and what to expect.
Thank you god bless
Im Joe. Im 21. My dad has a very aggressive form of ALS. He was officially diagnosed this past December 2019. I saw him back in August/September and he was perfect, walking, talking, driving etc etc. Fast forward 3 months to his diagnosis he can not walk, barely can talk, can not move on his own, wipe himself, or do pretty much anything. Doctors say they never see ALS progress so fast it is like he had it for years.
I lost my mom last year to Cancer. She was 55. Now im going to lose my dad he is 51. I am 21 with no other family members besides my girlfriend who is a great help she is amazing. We plan on getting married as soon as we graduate college this may.
So as you can imagine its so hard to care for him given my age as well as im in school i work etc have little money etc etc.
Lets get into my question.
Right now he cant walk at all. Not a step. He cant use his hands other than a tiny grip on a sandwhich (yes he can still eat thankfully but slowly getting worse) he cant clean himself so i have to or my girlfriend has to clean him. He calls me every 5 mins for help I havent had a full nights rest in over 2 weeks since I left my apartment where me and my girlfriend lived and got a new 2 bedroom to give dad 24/7 care. But He doesnt let me sleep and i cant live like this. We have an aid 5 days a week and its like $4500 a month. Crazy expensive. He is so demanding that i never get a chance to sit and take a breather. My body is sore. My shoulders my back my everything from lifitng him and moving him to get comfortable EVERY 15 MINS. He has to pee every 10 MINS. Its so much work and i cant do it now at the stage he is in..... now this really gets to the point of my question...
Him being where he is at now is SO HARD. Its only going to get worse.... how in the world am i supposed to do this when he gets to a point of 0 speech, 0 movement, 0 abilities basically paralyzed. If i can barely do it now how will i be able to then? I just dont know. Im so stressed so achy and so TIRED. Please help or someone tell me about what they experienced with their family memeber with ALS i want to hear stories to learn more and what to expect.
Thank you god bless