How do single ALS patients cope with effects of illness?

[BJane]

Our son, 38 years old, has ALS. He is single and lives an hour away from us in Philadelphia. We are trying to help him as much as we can, but we are in our mid seventies and live in a continuing care retirement center. What do single people do as their condition worsens? What does a single person do when they can no longer afford help to come in and care for them? We are struggling to envision a future for our son. Our other children also live about an hour away from him, and want to help as much as they can but they all work. Would love to hear others’ experience.

 

[lgelb]

If your son won't be able to afford care, it is possible that he could qualify for Medicaid, though every state is different. He could consult with SHIP in PA. Medicaid usually entails some level of home health support.

But that usually isn't enough, ultimately. Hopefully some combination of family members/friends/local organizations can at least chip in financially and possibly with hands-on support. I know that sounds pretty pat but there comes a time when a PALS needs 24/7 help, as you surmise.

 

[Firefighter58]

I don't know the costs where you live but I have had als for many years now and for the last two years I have lived in a full time nursing home. The home is what I need and they fill all of my needs and it has made life easier for myself and my wife.