My Uncle is caregiver to my Aunt with severe Alzheimer's. He refuses family visits, what can we do?

Is it possible your uncle does not want to subject his wife to what he may see as the degradation of mental decline? Maybe he prefers her to be remembered as she was before the dementia turned her into someone else. Are his family and friends being compassionate and supportive or just criticizing him for the withdrawal? Would he welcome photos and/or maybe in one of those digital frames? Flowers to brighten the home? Is there anyone he trusts, perhaps a doctor, who could assess whether he is, in fact, losing it? May the outcome be a blessing to all concerned in this difficult and frustrating situation.

Agree with above. With AD she most likely will not remember family members - or anyone else from present times. If she remembers at all, it would most likely be as they were from years ago.
While it's great that family members want to see her - it may not be the best thing for her as she is now. Since your uncle is the caregiver - he should know what keeps her the happiest/calmest now. He is also the one who has to deal with reprecussions from anyting that affects her.
Maybe you could ask him how you can help - going to store, staying with her to give him a respite for a few hours, etc. Rather than asking what you can do for your Aunt - asking your Uncle what you can do for him might make him more open to communication with you.

I think you have some very good answers here from everyone! When a person is very ill no matter if it is Alzheimer's or Emphysema many times the ill person and the family does not wish to have company from anyone. This is a difficult time for everyone and many times they just need their privacy and time alone. The ill person may do things that are upsetting and the care giver does not want others to see them in that light.

Her husband is difficult and demanding and is determined to keep you all away, but rest assured that even if he let you see her, she would not remember you most likely and you may not recognize her as well.

How about you being nice to him, why not send him a card or a gift or flowers or all of the above at different times and telling him, how much you appreciate him and how he has taken such good care of your Aunt. Granted you know nothing about how he is taking care of her but you are going to have to sugar coat this to see if anything you do can soften his heart. You may want to send him notes along and tell him things you remember about her and how kind she always was or you remember the day you all got together for the picnic and how much fun you all had, etc. You are going to have to soften him to hopefully be able to get through to your Aunt.....He is the Gatekeeper! By the way if you send flowers or anything to him, you should send something a week or so later to your Aunt.

You wanting to see her or give her things, is for YOUR benefit because she most likely will have no thoughts or recognition of what you are doing so basically you are doing this because you love her but it is to soothe you and your emotions.

God Bless You All In this Difficult Time!

Just want to add one little thing to what everyone else has already pointed out. Your uncle might be so tired from caregiving, and so in pain himself (he's older, too, don't forget), that family visits are just too stressful, and he can't even stomach the thought of having to get up, get dressed properly, and play host
to guests. Add this to having to get your aunt ready, too, and everything else, and it's no wonder you have trouble getting to see them. Perhaps if just ONE family member calls him, lets him know they understand, and that they will bring food for both Aunt and Uncle, and that it'll be only ONE person coming for a visit at first, you can make a breakthrough. He is obviously deeply depressed, and sounds like he needs love and understanding right now. (This is just a guess!)

All gr8 answers. When my dad had Alzheimer's, my younger sister virtually never came but my mom had to ask my older sister not to. When my mom and I went, I crocheted and she played hand held poker games. We more or less silently commune with my dad and he sat quietly and look back and forth at us, which seem to make him happy. My older sister was so disturbed by the lack of conversation, she would chatter incessantly, laughing and joking and being loud. When my dad would become disgusted, get up and leave the room, my mom tried to explain to my half sister (not my mom's daughter) how her constant talking disturbed him, but she would never comply by stopping.

Many you're later when my mom had drug induced dementia, she was really mad at my younger sister, who insisted on coming over and acting like nothing was wrong. After she left, I had to deal with several hours of aggravation not only because my mother was angry that my sister HAD come over, but that I LET her in. My mother didn't understand that even though I was the caregiver, my sister had obtained conservatorship and I really couldn't keep her out.

Only you can know whether your uncle is excluding the family because of some kind of harboring of animosity but at this point does it really matter. On the one hand, you visiting her would make you feel better. We can all understand that. But maybe it makes her feel worse. Only communication with your uncle would allow you to find out and you won't have any of that kind of communication if there are hostilities. I think "deserts" suggestion of finding out what ELSE you could do for her by helping him. If its just meanness, maybe that would soften him and perhaps it could lead to a visit down the road (but let HIM offer).

Gigi's idea is good offering photos or flowers, all of which can be done without visitation to make him happy for now. And "glad" could be right about things that upset her, and not wanting to introduce those things. He's older now too and he may not be losing it but I do believe (and I apologize in advance for a sexist comment) that males don't cope as well with caretaking as women do. He is already a rare man to be doing this.

Try to be his friend without pushing the visitation question. See what you can find out if you can get on his better side.

Thank you all for your suggestions. My mom is 71 now and in good health however, needs a hip replacement next week. She wanted to see her baby sister before she went into surgery. We have stayed away for over a year now and it was at least year between our last visit. My Aunt is about the same and we have been through Alzheimer care giver training and understand full well his concerns and her behavior. It just seems unfair to not allow her only flesh and blood left (my aunt had no children) to see her at least once a year for 30 minutes max. Thanks again for taking time to respond.

Do you offer to sit or stay with her while he takes some much needed reprieve or do you and others just want to visit when it's convenient and then ask him a bunch of the same questions over and over. It's all tiresome for these caregivers. Real help is giving him some reprieve, bringing a nice dinner or several! Some nice carry out, offering to caregiver a few days so he can get away.

For the long distance "I could do it better". Fine! You come take relative to your home. Give up your life to care for them 24/7. You listen to the ones who refuse to listen to you (who are there 24/7 and do everything that is done).

If you don't want to step up and take over completely - then don't make my life more difficult than it already is by aggravating the one receiving care.

Call - say "Hi" Let the person you are calling talk (if they can). Keep it generic.
If you want info on their condition - ask me. Listen to what I say - the person you remember doesn't exist anymore.
If you truly care about them - do not aggravate/agitate them. If you don't listen I will do what is best for the one I am caregiving for and you will not talk to them.

For your information I send emails regularly, I dial their phone numbers and give her the phone. I DO ALL THAT! And in return I get nothing but grief. Might I add that prior to my husband and I taking his sister in she had not seen her aunt in over 20 years and most of the cousins as well. We traveled over 1000 miles to move her all at our expense.
She is also a hoarder, has been all her life. That means before she got Alzheimer's. The way she was living could of been an episode on the show "Hoarders." Filth doesn't even begin to describe it. And just because she has Alzheimer's now doesn't mean she isn't still a hoarder.
We are the best thing that ever happened to her. I see to it that she eats, has her hair washed and bathed and wears the appropriate clothing for the season. In addition to always trying to find different something that she can she find a little joy in considering her limited mental capabilities.
You weren't the caregiver so don't tell me anything. You haven't been there or done that. And that is exactly the problem. You people who have given up nothing to care for a loved one wants to tell us how to do it. HA!
All these "loving" relatives do is cause her upset and make my life harder. I rarely get any real time with my children or grandchildren or my mother.
Honestly the more trouble you people cause makes me really think I should just put her in a home and be done with it!

I did not mean to sound angry over having to care for my sister in law. I was and still am willing to care for her. The issue for me is not that I am my sister in law's caregiver but that their family is making it so difficult for me. There is no regard for my husband or me. They haven't seen her in decades but now that we have become her caregivers they call here regularly stirring things up. They don't ask us for information about how she is doing. They don't ask what an appropriate gift would be. (I honestly think they have just decided to start ridding out their house and filling up mine.) Sending boxes and boxes of books that she will not read because she cannot remember from one paragraph to the next or if she just read that sentence. They ask her about driving to see them! She has Alzheimer's! She can't drive, she can't dispense her own meds, she doesn't know when to eat, she doesn't know when to bathe, she doesn't know what the appropriate clothing is for the weather, she can't manage money, she cant manage a checkbook, she can't find her way around, she doesn't know what year it is, she doesn't know what season it is, she doesn't know! We have tried to keep relatives in the loop with information but we dismissed. We set all her doctor appointments and get her to the specialist she needs to see. We keep her out of harms way and see to her every need. The relatives make our very challenging job of caring for her even harder. They are the problem. The anger is at the relatives who have no true regard for real information on her. Everyone wants to be an authority on the situation but have not spent one minute in our shoes. Ignorance is bliss must be their motto.