I had to place my husband in 24/7 hospice care at the VA last week, and he is more confused than ever. What can I do?

Losing weight and strength and not having an appetite is part of the end-of-life process. Please talk to the hospice social worker and the hospice nurse for information about what to expect as the process continues. This is so very hard to watch in a loved one. Your presence is likely a comfort to him.

Can you visit every day and take on some of the non-strenuous tasks? Like removing his hearing aid, checking the batteries, cleaning his dentures? Perhaps helping him to get ready for bed each night? Not lifting him, of course, but helping him button his pajamas, etc. It sounds like you feel really bad that you cannot care for him at home. Even though he is in a facility you can have a significant role in his care.

Perhaps you should consider hospice care at a facility other than the VA? It's my understanding that Medicare covers most of it. Do you have Medicare coverage as well?

Garden, unfortunately, Medicare does not cover the custodial part of hospice - only a VA facility or Medicaid or private pay will pay for the housing part. Hospice through Medicare pays for supplies, persons, prescriptions, but not room and board:(
Drruth, you need to get in contact with the PATIENT ADVOCATE at the VA facility that your husband is at if you have not already. The job exists at EACH facility and its duties are explained at https://www.va.gov/health/patientadvocate/.
If he is in the Providence, RI facility - the patient advocate information listed for that facility is Patient Advocate,
Main Building - 1C, Room 140, 401-457-3093

Thanks everyone.. First of all, I took him off Medicare part B 8 years ago when the VA coverage was duplicate and have saved $100+ in premiums being taken out of his SS check. The VA is keeping him in hospice without charge to me - so no problem there. The hospice team called ME for a meeting that I have coming after he has been there 1 week, and that will occur today. I have made up a check-off chart that if they will use will help get some of the mundane things done like his teeth and hearing aids. Unfortunately, I live 45 minutes away and am still working 3 part-time jobs out of our home, and can't be there every day with him. I got him a stuffed dog that I hope is of some comfort to him. He's 85 and I'm 76 (still not retired)! I realize that his lack of appetite is not their fault entirely as he was doing that at home before I placed him 10 days ago, but offering some encouragement to him (with possibly volunteers) to eat at least a bite or two would be wonderful. Maybe my meeting today will help me understand their responsibilities and my expectations. Otherwise, the VA has been a great place for his treatment. He is refusing to have chemo (which would just make him sick and not CURE the cancer), so hospice is our last and final step. Miraculously, he has no pain - just tired, weak and "winding down". Hard to watch happening as he is a sweet, kind, gentle man (and always has been). He won't even ask for things from the hospice staff because he doesn't want to "bother them" when they are taking care of others! I have been blessed with a wonderful human being as a husband for almost 28 years!

Dear drruth,

I'm very sorry to hear about your husband's care. I know this is an extremely difficult situation. No one would want to see their loved one with this quality of care. Are you able to talk to a care manager? Social worker? Adult Protective Services? Is there a chance he could be moved to a different facility? I know its not easy and you are doing the best you can. Hopefully the social worker can give you more options.

My husband was in a rehab facility for four months this year, and we experienced much of the same thing. It wasn't a Veteran's facility, but where care comes in, it was pretty much the same. The food was awful. So, when I would visit, I'd bring in sandwiches from the outside. I'd even bring in leftovers from my own dinners. He was only changed twice a day. Once he was left on The toilet for 20 minutes and passed out when they tried to get him up. In their defense, there were usually only 2 aides for up to 30 patients.

Your calling a patient Care Conference is an excellent idea. You can put faces to names. Find out what their insurance will allow you to do for him. It's always good to pop into those places at varying times,too.

Drruth -- I'll address one of your concerns; "He is losing weight and strength." My late husband, who was also under hospice care, also lost weight and strength. His hospice nurse said it was a natural part of end of life. However, that is no excuse for the negligence you have seen in other areas of his care. Take advantage of the resources mentioned by Guestshopadmin.

You are indeed blessed! As you can tell from the threads posted on this site, not every aging parent/spouse is sweet, kind or gentle. Talk with him when you do visit, tell him your heart and that you want the very best for him and by all means - make your voice heard with the Hospice and facility staff - then follow up gently. If something changes for the better - thank the staff personally ---tell them you noticed!!! You will be in my prayers!

Last year my husband, also a kind, gentle personality man, spent two and a half weeks winding down his life and died. He was a victim of fast advancing Alzheimer's Dementia(seven years from diagnosis to death) and from my wheelchair i watched him get worse monthly. It hurt me also that I could not do all the things I wanted to do with and for him. During the last year I could only see him once a week, for an hour, while he was in a memory Care Unit. I went during a midday meal so it would seem like we were having a meal together, like a date. Please know that you are not alone in the current circumstances of your life. I made it a habit to be very pleasant to the working staff where he was; told them interesting things about my husband; some funny stories about our married life; all to make he and I more real to them. I also talked a lot to the staff about how he was doing; asking their advice if I could i do anything else for him; just more communication with the workers. Keep in your mind others are already on this same road, some further down it than you and others in the same place on the road. Now a year later I am starting to accept that i did what i could for him like I told him I would.

SilkLady

Unfortunately that is the VA, which is a crime. I guess the best option is to stay there all day and take care of his needs yourself then return home at night to shower and sleep. Then repeat each day.