5labudas
New member
- Joined
- Aug 25, 2007
- Messages
- 3
- Reason
- CALS
- Country
- US
- State
- pa
- City
- belle vernon
getting help inside the home
hi. i'm new to this forum. but it is much needed. my husband was diagnosed in 04. we have 3 small children 9.7 and 6. it is extremely hard to juggle it all. i work full time for the money and of course benefits. my children are very active in sports and etc. my husband said he didnt want them to stop any of it, because he didnt want them to remember that they couldnt do things because he was sick. i enjoy taking them to their activities though.
our relationship has very much dwindled down to nothing. he has become a very mean, resentful person. i dont know how much more i can take of it. any suggestions would be great.
AS FAR AS GETTING SOME HELP:
I live in PA our als assoc here put us in contact with the united cerebal palsy to get help inside the home. we have a home health aide come in 5 days a week for a total of 36 hours. he also qualifies for additional weekend hours, but they cant find employees for those times. you may want to check into it. it was definately worth it. they do ask income info, but they want just the patients info. since tim is on disablity pay, we dont end up paying anything for the extra help. they dont turn anyone down they said, you just may have to pay a little out of pocket--like 5-20 dollars a week if that. but it sure definatley beats the $17-19 AN HOUR! they break down tims entire day and figure out how long it takes him to do everything and what he needs help doing and then they figure out how much time you need someone in the home. it really is a great program.
they also had us in contact with the mda to look for help inside the home. but the UCP lead worked for us.
hi. i'm new to this forum. but it is much needed. my husband was diagnosed in 04. we have 3 small children 9.7 and 6. it is extremely hard to juggle it all. i work full time for the money and of course benefits. my children are very active in sports and etc. my husband said he didnt want them to stop any of it, because he didnt want them to remember that they couldnt do things because he was sick. i enjoy taking them to their activities though.
our relationship has very much dwindled down to nothing. he has become a very mean, resentful person. i dont know how much more i can take of it. any suggestions would be great.
AS FAR AS GETTING SOME HELP:
I live in PA our als assoc here put us in contact with the united cerebal palsy to get help inside the home. we have a home health aide come in 5 days a week for a total of 36 hours. he also qualifies for additional weekend hours, but they cant find employees for those times. you may want to check into it. it was definately worth it. they do ask income info, but they want just the patients info. since tim is on disablity pay, we dont end up paying anything for the extra help. they dont turn anyone down they said, you just may have to pay a little out of pocket--like 5-20 dollars a week if that. but it sure definatley beats the $17-19 AN HOUR! they break down tims entire day and figure out how long it takes him to do everything and what he needs help doing and then they figure out how much time you need someone in the home. it really is a great program.
they also had us in contact with the mda to look for help inside the home. but the UCP lead worked for us.