Texans 2014
New member
- Joined
- Sep 2, 2014
- Messages
- 9
- Reason
- CALS
- Diagnosis
- 09/2011
- Country
- US
- State
- TX
- City
- ARLINGTON
It's been a while since I have checked in. Life for my son and myself, as caregivers, is almost unbearable. My PALS is totally paralyzed from neck down. He has a feeding tube and is on a ventilator. He seems a little more depressed lately. Still doesn't sleep well at night so my son and I are constantly getting up and down during the night so we never, ever get enough sleep. We have no help. No secondary insurance, no VA, and no one wants to learn how to do breathing treatments, cough assist, etc. I get it. We can't work because he needs 24 hour care. Have run out of money and live solely off of my PALS SS disability (thank god he gets that). We do get $180 month in food stamps which has helped a lot. We don't qualify for anything more.
My sons life is passing him by. My PALS has been at this level for several years now. His friends are getting married, having kids, careers, and having fun at 28 years old. I see my son getting annoyed and feeling that he doesn't have a future. I keep telling him to go get a job, even if its PT but he says that it would be a death sentence to me by taking on 24/7 needs of my PALS.
Don't get me wrong. My son and I love our PALS but it is becoming more caregiver and less loved one. It is so difficult. We do this day in and day out and frankly I don't see much of a future for myself either. I don't see how this ends and I can't see my son and I doing this for 5, 10, 15 more years. We are exhausted!
He absolutely will not consider going to a home nor do we want him to.
He is holding out for a cure! Which leads me to my question. When they do cure ALS (and they will someday), will his body recover? Will the motor neurons repair themselves? I have tried to research this. I saw where with some other diseases, the nerve endings break where there is no chance of repairing but in ALS nothing is broken so it may be possible to regenerate muscles.
I don't want to give him false hope but I also don't want to discourage him if it is possible. Does anyone know the answer? If its not possible, I want him to know that. We are Christians and know that anything is possible but we are also realist and want to know the truth about this disease. If there was a cure tomorrow, is it too late to benefit my PALS?
I hate that I am going to post this. I don't want anyone to think that we don't love our PALS. We love him so much. This disease is H O R R I B L E ! We are high school sweethearts and have been together over 40 years but I am breaking down and don't know what to do.
I know that some have posted before that my son will be so proud of himself later and that he will get through this but I am ready for him to start living his own life. He deserves this. He is becoming bitter and so am I,
Thank you for listening...…………..
My sons life is passing him by. My PALS has been at this level for several years now. His friends are getting married, having kids, careers, and having fun at 28 years old. I see my son getting annoyed and feeling that he doesn't have a future. I keep telling him to go get a job, even if its PT but he says that it would be a death sentence to me by taking on 24/7 needs of my PALS.
Don't get me wrong. My son and I love our PALS but it is becoming more caregiver and less loved one. It is so difficult. We do this day in and day out and frankly I don't see much of a future for myself either. I don't see how this ends and I can't see my son and I doing this for 5, 10, 15 more years. We are exhausted!
He absolutely will not consider going to a home nor do we want him to.
He is holding out for a cure! Which leads me to my question. When they do cure ALS (and they will someday), will his body recover? Will the motor neurons repair themselves? I have tried to research this. I saw where with some other diseases, the nerve endings break where there is no chance of repairing but in ALS nothing is broken so it may be possible to regenerate muscles.
I don't want to give him false hope but I also don't want to discourage him if it is possible. Does anyone know the answer? If its not possible, I want him to know that. We are Christians and know that anything is possible but we are also realist and want to know the truth about this disease. If there was a cure tomorrow, is it too late to benefit my PALS?
I hate that I am going to post this. I don't want anyone to think that we don't love our PALS. We love him so much. This disease is H O R R I B L E ! We are high school sweethearts and have been together over 40 years but I am breaking down and don't know what to do.
I know that some have posted before that my son will be so proud of himself later and that he will get through this but I am ready for him to start living his own life. He deserves this. He is becoming bitter and so am I,
Thank you for listening...…………..