holdingouthope
Member
- Joined
- Oct 2, 2009
- Messages
- 23
- Reason
- Loved one DX
- Country
- US
- State
- tx
- City
- Around the way
Not sure if anyone remembers me or not; came on here around sept/Oct about my dad. well he's gotten much worse and is on a vent now. He can barely move his arms and can move his head side to side, thats about it as far as mobility goes. He was walking and talking in June and so this has been a huge shock for us; having a hard time coping.
He was transferred to a nursing home because medicare hasn't kicked in yet, which is one of my questions. We were always told it was a Teri claim and processed quickly but now finding out that there still is a 6 month wait for medicare, instead of a 2 yr wait. They are saying 6 months from diagnosis. So March 1st he'll have coverage and we can get into a better facility. The nursing home he went to was terrible.. he was transferred there after being in the hospital for 3 months when is respiratory system really declined. ANyway, so he was just transferred about 2 weeks ago and we are finding the care there TERRIBLE! They aren't answering his call bells and sometimes he can't find the call bell and had to use his scratching stick to bang on the wall and no one would answer.
I'm a nurse in NY but he refuses to come and let me take care of him so I come here as often as I can to check up on things and visit. My grandparents are here in tx but can't take care of him without help so we are all in a holding pattern waiting for medicare so we can get more equipment/help and take him home.
So. I don't even know what the point of this post is; maybe just to vent some frustrations (no pun intended). He has his days were he just wants to be sedated and asks or morphine every 4 hours. And other days when he's awake and talking and making jokes. He refuses to eat most days and refuses a peg. I asked him today if he's refusing to eat because he wants to die because if he's giving up, there are more humane ways to do this and if he wants to fight then he need to eat and needs a peg..... He said he's "still thinking about it" and wouldn't say which way he was leaning.
This whole thing is just freaking terrible. I'm so angry today and just frustrated. We had to transfer him BACK to the hospital yesterday because we found him unresponsive from being oversedated at the Nursing Home, and his white count was found to be about 28 in the ER so they admitted him and he's on heavy duty antibiotics; they think it's PNA but not sure because of the ateletasis in his lungs on the scans; makes it hard to tell.
ANYWAY, so they want to transfer him back to the nursing home with a picc and IV ABX and we are fighting them tooth and nail about going back. We don't understand why it's taking so long for the medicare.
Another question I have is; if and when his medicare is active, will they send help at home? Can he get a portable vent to go on the back of a powered wheelchair? The social worker said something about him being able to be on a home vent vs. a hospital one... I have no idea about those things. I just don't know if we are at a typical stage in als or not or what we can get as far as help, or what. I just feel so lost. I can't even get my thoughts or words to come out straight right now.
I apologize for such an unorganized and rambled post. I guess the most I need right now is just some support and prayers. please and thank you.
He was transferred to a nursing home because medicare hasn't kicked in yet, which is one of my questions. We were always told it was a Teri claim and processed quickly but now finding out that there still is a 6 month wait for medicare, instead of a 2 yr wait. They are saying 6 months from diagnosis. So March 1st he'll have coverage and we can get into a better facility. The nursing home he went to was terrible.. he was transferred there after being in the hospital for 3 months when is respiratory system really declined. ANyway, so he was just transferred about 2 weeks ago and we are finding the care there TERRIBLE! They aren't answering his call bells and sometimes he can't find the call bell and had to use his scratching stick to bang on the wall and no one would answer.
I'm a nurse in NY but he refuses to come and let me take care of him so I come here as often as I can to check up on things and visit. My grandparents are here in tx but can't take care of him without help so we are all in a holding pattern waiting for medicare so we can get more equipment/help and take him home.
So. I don't even know what the point of this post is; maybe just to vent some frustrations (no pun intended). He has his days were he just wants to be sedated and asks or morphine every 4 hours. And other days when he's awake and talking and making jokes. He refuses to eat most days and refuses a peg. I asked him today if he's refusing to eat because he wants to die because if he's giving up, there are more humane ways to do this and if he wants to fight then he need to eat and needs a peg..... He said he's "still thinking about it" and wouldn't say which way he was leaning.
This whole thing is just freaking terrible. I'm so angry today and just frustrated. We had to transfer him BACK to the hospital yesterday because we found him unresponsive from being oversedated at the Nursing Home, and his white count was found to be about 28 in the ER so they admitted him and he's on heavy duty antibiotics; they think it's PNA but not sure because of the ateletasis in his lungs on the scans; makes it hard to tell.
ANYWAY, so they want to transfer him back to the nursing home with a picc and IV ABX and we are fighting them tooth and nail about going back. We don't understand why it's taking so long for the medicare.
Another question I have is; if and when his medicare is active, will they send help at home? Can he get a portable vent to go on the back of a powered wheelchair? The social worker said something about him being able to be on a home vent vs. a hospital one... I have no idea about those things. I just don't know if we are at a typical stage in als or not or what we can get as far as help, or what. I just feel so lost. I can't even get my thoughts or words to come out straight right now.
I apologize for such an unorganized and rambled post. I guess the most I need right now is just some support and prayers. please and thank you.