I'm SO sorry you are going through this!! I totally empathize with you.

Your request to his family is totally the right thing to have done. Maybe they're worried it'll be too often, but honestly they should be ashamed.

Having said that, maybe if you approach conversations with whoever the decision-maker is, tell them you love him and know they do too... That you're trying to “Help HIM” and would love their input?

If they can understand it's 'for him,' and He NEEDS them too, they'll come around.

My heart hurts for you. ❤️

I have always been his caretaker. He didn't get sick until 20 years into our marriage. I hired the attorney and received medical and financial POA. I set up all medical payments. I am paying the nursing home. His family got mad at me when I asked if they could drop by the facility as they live 5bmiles from there and his sister works across the street! I'm a nurse and I know how facilities can be. I thought nothing of asking them. I also asked if I could every now and then sleep on their sofa in their 4-story homespun I could see Steven 2 days instead of one. They said they didn't have room. His mom, sister, and her grandson live there and I don't think they fill a 4-story house. Steven is 3 hours from where I live in a heavy traffic day. I have had medical problems too. I do realize it is the disease, however, when I see his mother and sister are good friends with hus ex-wife now, I can put things together. I'm not jealous. Steven loathes his ex so if her name was mentioned guess who would get the mess...me. Husband ex is remarried and I don't worry about her. I worry him family may talk about her and I would be seeing what I am now...shear rage being unable to express why.

I am so sorry that your loved one's family is not helping you weather this storm. Were you the main caretaker until he went into a facility? Who made the arrangements for him to go? Who is paying for his care? Could it be that his former wife has medical or financial POA for your husband? (Maybe he put her down when they were married and did not change it when he remarried?). That doesn't explain why his family is doing what they are doing, however.
I know that you can't get used to your husband's family's treatment of you, but you do know that your husband is not himself so his behavior is not an indication of his real relationship with you, right?
Maybe someone in this community has had experience that is similar to yours and can give you some answers. Meantime, hang in there! it is so hard to get through this disease when you love the one who is sick.

Thank you FredR and Gilloo. My husband was 58 at onset and is now 68. It has been a LONG road, one of which I do not wish on anyone. His family have deleted me from their lives. They have invited his ex-wife back into their life. She is listed on everything they do as their relative and have deleted me as if I never existed. We have been happily married 30 years! I am alone with my anger, sadness, depression, and now I don't have the love of my rock, love of my life, my husband! I live 2-1/2 hours away one way and visit him 2x a week or more to sit there and be ignored and humiliated! His family, however, live 5 minutes away but see him maybe 2x a year! His mother has taken his ex back and probably is taking her in there and he is confused. I never thought I would do this, but I'm thinking of not allowing his family to visit. They visit to cause him anger and leave. I get the hurt and leftover anger from him! He is not long for this world. Is it wrong of me to ask them to stay away from him? I am a very kind person. I have stood by him through everything! One facility 3 years ago kicked him out because of violence. He was put in a psychiatric facility in his own area. They opened the area at night for severely dangerous people and I stayed in his room at night because he could not speak or help himself. To think I have lost my husband's trust and his family for reasons I have no idea, makes me sick. I had breast cancer and his sister said, "Just have a double mastectomy and get over it!" I'm sorry to go on, but I am so confused, angry, thinking he would rather have his ex there makes me feel humiliated and mad. I've gone through 10 years of misery and stood strong. Now I can barely stand anything.

I am so sorry that your husband's condition is so severe for so long. Mine used to pass through periods of wanting nothing to do with me or our daughters, but usually it was temporary and he was mobile. Please don't take it personally--he probably doesn't know it's you and thinks you are somehow to blame. This disease seems diabolical at times and the most caring are often its target. Know that you are an amazing mate to your husband no matter what world he is living in. You simply cannot enter it and so are left to care for him from the outside. I do so hope that you have help because you need to take breaks in order to continue.