Hospice Care/ALS /Ventilator
My Husband was flown to St. Cloud MN because it was the only place that would take a Veteran on a vent. I am in Kentucky and have to travel back and forth to MN to visit husband who is buried alive in his own body he can only move his eyes. He suffers a very progressive form of ALS (Bulbar) . I want my husband home is there any hospice care that will take him on a ventilator so he can be home with his family who loves him very much! I have two special needs children and going back and forth to MN which is 14 hours away and their hideous winters. Please help me if you can.
Thanks , Carolyn R
I am so sorry for your husband's illness and the situation in which you find yourself. I can only pray that you have family nearby and/or a good network of friends. This is way too big a load for one woman to carry alone, even the wife of a veteran--although I know you are tough!
I regret that there is not much I can do directly, but I can make some suggestions.
First, you should be aware that just because your husband qualifies for hospice, it does not mean that he must accept it. It is possible that services could be provided from some other source than a hospice. Palliative care can be provided by anyone qualified to care for a patient. Hospice type medications can be prescribed by any physician or nurse practitioner or physician assistant (depending on state regulations). A physician may be a good starting point for learning what, if any, services might be available in your state (or a next-door state, if you are close to a state line).
From my brief research, it appears that there is at least one VA hospital in Kentucky, in Lexington. It looked like there might also be one in Louisville, although that was not all that clear. I am assuming a VA hospital in Kentucky rejected your husband.
There is nothing special about ventilator care of a patient with ALS compared with ventilator care for other patients. I am certain that there are patients on vents in the VA hospital(s) there in Kentucky. There is also the possibility of his being cared for in a nursing home where ventilators are used.
Since your husband is a veteran, and since you have special needs children, I believe you are due special consideration (not that anyone asked me, this is just my opinion). I would talk to the administrators of the VA hospitals in Lexington and Louisville (I am assuming there are two hospitals in Kentucky--I could be wrong!) and ask them to help you. I would be surprised if you did not get support from them. They may not be able to do it personally, but they will be able to find resources.
If this does not turn up something, like a case worker/case manager to help you get your husband home (or nearer to home), then I would visit my state senators. Your senators are very well known--Rand Paul and Mitch McConnell. Both ought to be contacted, in as loud and public a manner as possible. Mitch McConnell serves on the subcommittee for the Department of Defense and authored a bill to improve health care available to veterans in 2013. (I found this out by googling them.) If anyone can help, McConnell's office should be able to. If you cannot get their attention, I believe I'd consider talking to reporters for a news station. You don't say if you are near a major city, but that's where I'd start.
I would also consider starting one of those online petitions. The group with which I am most familiar is called MoveOn. Google that and contact them. I think they could help you and it can make a difference. If you get a couple of thousand people worked up for your cause, and willing to sign a petition, that petition can be a way of getting attention.
I hope some of this will help you. I do not envy your situation, and agree that if at all possible, having your husband nearer by will make a difference for your quality of life and his.
Take care and God Bless!