holdingouthope
Member
- Joined
- Oct 2, 2009
- Messages
- 23
- Reason
- Loved one DX
- Country
- US
- State
- tx
- City
- Around the way
So I haven't been very active here; there just hasn't been much time between the chaos of our lives and how quickly this struck my father and us all and how rapid it's progressed. At any rate, after so many obstacles we are able to finally get my dad home. He's being discharged from the hospital tomorow.
He's coming home on a home vent and the als association here is getting us a loaner power wheelchair, shower chair, lift. Communication is a huge struggle for us as I am not great at reading lips so we are hoping to get a loaner eyemax this week (god willing). The DME will be here to meet the ambulette and help us get settled at home the first day or so. We have suction and a nebulizer and basic suction equipment but not much more. We are hoping to get an inline suction script tomorrow and get that approved by medicaid (his medicare kicks in on the 1st of March).
now to my questions
1) we need a special hospital bed for the home because he's already got a stage 2 on his sacrum (it looked like a skin tear before but now def looks like a sore What kind of bed should we be looking to ask for? The social worker is going to be working on this tomorrow and we aren't going anywhere until that's taken care of (for obvious reasons)
2) how much help can we expect to get at home? We haven't heard anything about the home health agency and who will be coming, how often etc.
3) how much do you pay for your own private duty aid in the home? how often do they come and what do they do to assist you?
4) can you think of any supplies or things we will need that we should ask for upon discharge, just to get us over the hump before the home health gets situated.
5) I could use some encouragement because as excited as I am that he doesn't have to go to a nursing home 4-5 hours away from here, I am also so scared of not having doctors and emergency help available. My grandmother is a retired RN and I am an RN as well but there is just something about caring for my father that my RN brain goes dead and my daughter panic mode sometimes kicks in.
Pray for us!
-Lissa
P.S. just so you get the picture, and can think of what we'll need based on his needs: he's completely dependent and can barely move his arms/hands at this point. He can't speak because he's been aspirating and needs his cuff completely inflated most of the time (sometimes they allow it down for him to speak if no one can figure out what he's lipping but they really don't want us doing that often).
He's coming home on a home vent and the als association here is getting us a loaner power wheelchair, shower chair, lift. Communication is a huge struggle for us as I am not great at reading lips so we are hoping to get a loaner eyemax this week (god willing). The DME will be here to meet the ambulette and help us get settled at home the first day or so. We have suction and a nebulizer and basic suction equipment but not much more. We are hoping to get an inline suction script tomorrow and get that approved by medicaid (his medicare kicks in on the 1st of March).
now to my questions
1) we need a special hospital bed for the home because he's already got a stage 2 on his sacrum (it looked like a skin tear before but now def looks like a sore What kind of bed should we be looking to ask for? The social worker is going to be working on this tomorrow and we aren't going anywhere until that's taken care of (for obvious reasons)
2) how much help can we expect to get at home? We haven't heard anything about the home health agency and who will be coming, how often etc.
3) how much do you pay for your own private duty aid in the home? how often do they come and what do they do to assist you?
4) can you think of any supplies or things we will need that we should ask for upon discharge, just to get us over the hump before the home health gets situated.
5) I could use some encouragement because as excited as I am that he doesn't have to go to a nursing home 4-5 hours away from here, I am also so scared of not having doctors and emergency help available. My grandmother is a retired RN and I am an RN as well but there is just something about caring for my father that my RN brain goes dead and my daughter panic mode sometimes kicks in.
Pray for us!
-Lissa
P.S. just so you get the picture, and can think of what we'll need based on his needs: he's completely dependent and can barely move his arms/hands at this point. He can't speak because he's been aspirating and needs his cuff completely inflated most of the time (sometimes they allow it down for him to speak if no one can figure out what he's lipping but they really don't want us doing that often).