Question about respirators and care at home (please help if familiar)

[Pearl]

Hi. My friend's husband was told that he may need a respirator at some point (sooner? later? not sure) but the doc also told him, "Your wife won't be able to care for you by herself."

Can someone elaborate? What type of extra help will the wife need and how much? He has bulbar onset , but still pretty good use of limbs. Any insight?

 

[HospiceMan]

My understanding as a hospice volunteer is that having a ventilator requires 24 hour care by a professional nurse because it is not something a wife can deal with. You might recall that when Christopher Reeves fell from the horse and was paralyzed, he was immediately put on a ventilator to save his life, but ever-afterwards he required a full time nursing staff/facility. This was NOT simply a luxury because he was a wealthy actor, but part of a larger problem.

My ALS patient has decided he will die naturally when he needs a ventilator because having a ventilator automatically disqualifies the family from hospice care. Instead, he would have to be in a private nursing facility, with estimated costs of $250,000 per month, much that would not be covered by insurance.

Now, I urge you to research this on the internet, talk to your doctor, your insurance company, etc., because my understanding is that going on a ventilator is a HUGE DECISION for an ALS patient, because it has HUGE financial and quality of life implications. It is not a simple thing!

My poor patient does not want his family to go through the agony and expense of having him in a private facility the rest of his life (which could be extended a long time with ventilation) so he has (pretty much for economic reasons and quality of life considerations) decided to "check out" when a ventilator is needed. This is courage and love at a magnitude I've never encountered before.

Having ALS and being a caregiver take insatiable amounts of courage and love. Don't try to do it alone.

 

[Pearl]

I don't think that all of that is correct - I know of people at home on vents and I'm also aware that they don't have 24 nursing care. I believe you are correct, however, that he will require someone to be with him 24/day. The one man I know of who is on a vent had limb onset, so his situation is different.

Thank you, however, for responding - all imput is appreciated.

Anyone else?

 

[pye101]

My husband was at Hospice, on a ventilator and PEG tube, for nine months. I was not able to have him at home, because he was on a ventilator, and I had no other help available. Hospice here in Florida, does provide ventilator care though. I don't think they believed that John would be with them for nine months though, when they took him to Woodside.

Susan

 

[Al]

OK guys. I'm in Canada where we have universal health care so it's different. BUT there is no way on this God's green earth that it would cost $250,000 per month even in the US with your ridiculous doctors fees to look after someone on a vent. Think about it. 30 days times 24 hours is 720 hours. At $30 per hour which I don't think even the best nurses are getting is only $ 216,000. On a vent you don't need a nurse, only someone trained to suction when needed and do routine maintenance. A family member can be trained in a couple of days and train others. Most family members will stay with the patient for at least 8 to 15 hours a day so that figure is out to lunch. Most doctors haven't any idea of how venting works because they actively discourage people from doing it. I have no idea why they do this but it is just wrong. It won't be easy and it isn't for everyone but it is an option that should not be discounted because of cost or work load. Just how much am I REALLY worth?
AL.

 

[Al]

Hi Pearl. Now that I've finished my rant did the doctor say a ventilator or ventilation support? He may have meant a Bipap which is not a big deal. Christopher Reeves had full time nursing care because he could afford it. There are at least 10 to 20 wives here that are looking after husbands on vents. It's not easy but can be done. The choice is yours and your husbands. If your doctor doesn't agree, get another one that just doesn't want to give up.
AL.

 

[Pearl]

I'm actually a friend of couple which is going through this.

The patient is already on BiPap at night and for part of the day also. The lung capacity has been steadly declining for the past year and the last conversation with the doc indicated that they need to be ready with a decision on whether or not to vent if needed. He is still mobile (can walk, although unsteady, eat, ect...)

I'm just trying to get an idea of what extra support his wife will need if he is on a vent - does he have to have someone awake 24 hours with him ? Does a vent require often suctioning? I imagine these questions are individual, but I thought I'd ask anyway.

 

[davis07]

Pearl

I agree with Al my doctor is the same way but the breathing
people at the als clinic, are worse. They seem like they dont
want nobody to go on vent. I bet if it was them they would change their minds. I dont see why they say medicare
in U. S. pays for most. As long as you got one or two family
members to help that should work.

Davis 07

 

[Pearl]

Davis07, are you saying that you think Medicare will pay for the vent and most care?
We are also in Georgia.

 

[davis07]

Pearl

The health care nurse the one said she could sign me up
for ssi said it would pay for the surgery and hopital stay.
I told her I was gonna stay on lont term dis at work. Thats
when she said medicare would pay . I think they provide some
help after wards at home also.

Davis 07

 

[Al]

Depending on the person they need suctioning every few hours. They do need someone in the room with them 24/7 in case a hose comes off or an alarm goes off. It does not have to be a nurse. Just someone trained on the equipment.
AL.

 

[quadbliss]

Medicaid pays for 24/7 in-home care. California has a program called the “Waiver Program”. Because I am on a vent and a
quadriplegic, I would otherwise be in a care facility. Medicaid establishes a budget for me based on the amount they would have to
pay that facility. They will pay in-home un-licensed workers, CNAs, LVNs, and RNs. with a different hourly wage for each being deducted from your budget. I believe most states have similar programs. If you qualify for Medicaid and are disabled enough to be institutionalized, you should be able to get into this program.



The only down side is, you are responsible for hiring and managing your own workers. There are agencies that will do this for you, but at the time we started the program, they had no extra staff to assign. This is how we ended up hiring RT students and training them ourselves. When you find someone, there is a single page form they fill out, then they just submit a monthly time sheet.



Mike

 

[CindyM]

Here in Massachusetts we have the same system. But my sense is that some states are not as progressive. I could be wrong. Often am, it seems, which is why I probably should shut up now before I give out any mis-information. :-? Cindy

 

[zemble]

re: at home care for PALS on vents

I know from personal experience that California is the only state where its Medicad (Medi-cal) program will pay family members to stay at home to care for a PAL. The state also pays nursing companies through state and federal funds so that nurses can come out and care for subacute patients. (PALS on Vents) Their reasoning is that if the vent dependent patient were in a care facility (not good), it'd cost them 650K plus a year and if the family and patient are willing to be at home, then the state will offer those monies to the patient and his or her family. So, I am a wife to stays home and cares for her husband. I get paid 10.00 per hour and the most I can get paid is for 283 hours a month. When a family (like me and my PAL husband) signed up for medicad, the most we can receive as a family is 30K a year. (It's medical welfare, we understand that) which explains why I don't get paid more. Anyway, we also work with an agency and have a nurse come out to our home monday through friday 9-5. We can ask for more hours, but this is calif. Our home is small and it's really a breach of privacy to have someone in your house for that long. The problem we have found is finding compentent nurses. There's a shortage and quite frankly, good nurses get better paying jobs in hospitals, so we've basically had to deal with one incompentent nurse after another. It gets so exhasuting training them that I just wind up doing pretty much all the work, which defeats the purpose. So, basically I am his primary caregiver 24/7. It's really hard and given all that we've gone through, I don't think he'd make the decision to go on a vent.

 

[zemble]

Hi. My friend's husband was told that he may need a respirator at some point (sooner? later? not sure) but the doc also told him, "Your wife won't be able to care for you by herself."

Can someone elaborate? What type of extra help will the wife need and how much? He has bulbar onset , but still pretty good use of limbs. Any insight?

To better answer your question Pearl. No one HAS to go on a ventilator. It's up to the individual whether or not he wants to have his life extended by being put on a ventilator. Most PALS (80%) chose not to go on a vent when it comes to that time because even in Calif, where we have the state covering some of the nursing care via medi-cal waiver, it still costs a lot of money to have a vent dependent person in your home. And that persons care needs will only intensify as will the expenses related to that care.
After my husband had ALS for two years, he made the decision to be put on a vent as part of his advance directive. Two years after that, he went on the vent when his lungs started to fail. So, it's your friends decision. If he goes on a vent, he may live a long, long life.
In terms of his wife caring for him full time and that she'll need help. Well, I care for my husband pretty much 24/7 and I can do it because I happen to be pretty tall and strong, but for some women, it's too much mentally and physically, it completely depends on the woman.