GailAnn, this is heartbreaking to read. Quality of life is incredibly important, especially for someone who has dealt with ALS as long as your husband and you have. The point of some of those visits should be to see people who can advise you and provide resources to improve or maintain as much QOL as possible. Unfortunately, you are going to have to become the squeaky wheel--and the VA does respond to that. We were treated by the Durham VA, one of the very best in the country, and I still spent a LOT of time advocating and following up. It's time to get serious with those people. Which rep have you contacted? I'd make a list and start calling the following, and then follow up each call with email so they know there is a record of you having contacted them: his PCP, VA Social Worker, VA Patient Advocate (and if you don't hear back from the patient advocate, contact the head of the hospital), and PVA rep. Keep copies of all you followup emails (even something as simple as "thank your for taking the time to discuss XXX with me today. I'm looking forward to hearing back from you soon because, as we discussed,----." If you don't hear back quickly or don't get the answer you want, you will want to send copies of them with your email/letter to your congressman. Explain that you expect help with this journey. Every visit we made, and we went quarterly, we learned something or came away with new equipment or assistance of some kind. We didn't know we needed these things--that's why you see them--so they can recognize the need and recommend. Make a point of stressing that YOU as a caregiver for this many years need this help as much as possibly more than people who have a quicker progression. Make it very clear to them that for you to continue caring for him at home you need more support (trust me, they don't want to pay to place him somewhere, and whether or not you would ever all that it doesn't hurt to let them think you would. Ask the Social Worker where he will be cared for if something happens to you and he needs to be turned over to the VA for care while you recover--explain that since you can't get into the clinic there are things you need to know to be prepared). Also, the argument that the length of time he's had ALS determines need is a poor one---his current situation is what dictates need, and it sounds like he's at a point where you need help. As others have said, if they can't schedule him in they need to pay to send him to an outside ALS clinic (Durham sent us to Duke and then made all the purchases that the folks at Duke recommended). ARGH. I'm really worked up right now!!! Do you have a copy of VA Handbook 1101.07? It describes the VAs responsibilities for caring for vets with ALS. Read and reference it--it's possible the people you are dealing with are not all familiar with it. No vet with ALS should be ignored in this manner. Don't accept it. I'm sorry if this rambles, but the more I write the more worked up I get. This is a great place for support, and there is also a Facebook group for Veterans with ALS and their Caregivers. Again, I can't stress enough how valuable the Paralyzed Veteran's of American can be. They are probably the best advocates you can find for veterans with ALS--they know what our VALS need and which buttons to push to get it done.