When family is worse than the disease

ladamato, his siblings may be progressing along a path of dementia. Alzheimer's does have a genetic component. In any case, they are missing a crucial element of understanding. You might protect your husband from your feelings about his siblings. Often in life we just have to politely say, "No." I always think it is a mistake to treat ignorance as personal. I see you as very strong, and though I sorry you are in this position, you are the capable person in this situation. Even stronger because you are protecting the person you love. Don't let him out of your sight.
Bless you both.

@ladamato I'm not sure gently reminding these "all consuming, tied up in their life adult children" is the best way to go. Brain surgery three weeks ago, along with Dementia, and they want their father, your husband, to come over and help them move. Ridiculous. At best, all you can do, is to tell them, he loves them, but he can no longer help them. And tell them that as his care partner, you're doing exactly what the doctor has told you to do. Managing and providing quality care for him. As for your husband not understanding why you don't want to be around his children, anymore? Tell him, you'll gladly have them come over if they are respectful to you, no abusive language, and no unrealistic demands the puts your husband at risk. Or gets you upset. We have to set boundaries, especially when caring for a loved one with memory loss and its progression. Best, Karla

kjc, acknowledging the wisdom in what you say about boundaries, I would yield to the doctors who "clearly" state that exposure to stress is harmful to this patient.
These are not the children but the brothers and sisters of the gentleman, probably the eldest whom they have always depended upon for help with those physical tasks.
It can be irresistible to set down boundaries with someone finally, when they are disempowered by dementia.
You can set those boundaries repeatedly, because they won't, can't remember, even if they understand in the moment.
When you have all the power, you lose nothing by being gentle. But, the gain is garnered by everyone.

Please know that I share your concerns. My mother’s friends do not realize the stress I am under with being sole caregiver for my 89 year old mother with dementia. Each of her friends insist on coming out to our ranch to visit. We put out a blanket text that all are welcome anytime, but few have actually come. (2 out of 6 or 8 friends ) I even have lunch prepared for them when they come out because it is a 90 minute drive from the city. What they don’t realize is my mom is very sick with a progressive disease. Each day is different and can be devastating and demanding at times. I resent that they give me unsolicited advise and judge me on my mother being so far away and sometimes I cancel an appointment for her to receive friends when mom is experiencing agitation, extreme sundowning, or depression.
Hugs, Michelle

@gently he is not the eldest. He's the third. It's the eldest who verbally attacked and accused me. I'm sorry but you don't get to accuse me of a crime, elder abuse, and just get to gently come back into my life. Whatever that means.

@michelamio I'm sorry you are going through that. Why is it so hard for people to understand that the best thing they can do is spend time with them. Have lunch. Just be there. You sound like a wonderful person and your mom is lucky to have you.

@kjc48 thank you. It's a lonely place being the one who has to set boundaries but I will do anything I can to help him stay in the early stages as long as I can. And if that means his siblings and his children hate me well then, oh well. I guess I'm alone in this.

You're not alone. Every caregiver.....we're all in this together. And noone can relate better than another caregiver. Our adult children can't unless they have someone in their household 24 x 7 that they are caring for. I know what you mean about being in a lonely place, why I finally decided to take a stand and set boundaries. I'm in a blended family, 2 of our kids on my husband side don't talk to him, the other one (the youngest) is polite but not involved, and then there's my son from another marriage, who told me he'd be there for both of us in a heartbeat, but never calls, as he's too busy with his own family. At least they are not respectful; they just don't show up. Then there's my husband's brother and sister, in Maine, who are wonderful, but in somewhat denial. They still can't believe this is happening to their oldest brother. This is tough, but I do believe we have to stand ground. You love your husband, you are with him 24 x 7 and you simply know best what he needs. Every day, I pray to God, that these lequembe infusions will work for my husband, slow down his disease, and that I'll figure out a way to make the right decisions along the way for both him and I. I was so afraid at first, But I found in making decisions, clearing my mind, and establishing boundaries, I feel better and not so alone. Know that you are not alone either. Strength is in caregiver numbers, and that's one of the best things about this Mayo connect site. We are here for you. My Best, Karla

@ladamato PS, I just sent you a longer response but know those kids don't hate you. They probably hate the fact, that they don't have the type of relationship that you have with your husband. Or the ability to control their Dad the way they used to. What's interesting, knowing his condition, they probably wouldn't want to be his caregiver anyway. They just want to give you a hard time. There could fear, anger, who knows, deep-rooted stuff from when they grew up, and their parents divorced, and then hell, they blame the evil stepmother for everything while oh, by the way, that evil stepmother is the one doing the caregiving. I'm there. I know. Know that you are not alone and know that just the mere fact that you say, "i will do anything I can to help him stay in the early stages as long as I can" - you've set a loving boundary! Yes, you've got this in spite of his difficult adult children. You have my vote, Best, Karla

@kjc48 Thank you. It's a sad and lonely place to be when you realize that his entire family, his children and his siblings. You take care of him. I was really thinking that his siblings at least would be supportive and helpful. I'm doing the best I can. And I love him. And I will take care of him. I told my son yesterday. I guess I'm going to have to be that person. Who basically says no. No you will not ask him to come over in 100° heat and work on your house. No we do not know yet how is tumor and his cyst are doing from his brain surgery. So no you will not ask him to do physical work for you. His sister even texted him at 1:00 in the morning to ask him what credit union she should use. I mean when I say that these people seriously don't want to get it. It's not that they don't get it because their mother had it as well, as well as all of their aunts and their grandfather. So they've been through this before. They just don't care. They want him to be the way he used to be and he's not and never will be again. But I love him enough to keep trying.