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

I think it is best left to your uncle. He is the one caring for her. visits often leave the patient in worse state of mind. Keeping things on an even keel is impossible when people who are never around all of a sudden appear.
I know you mean well, but as many above have said - these visits are for your benefit not hers. She most likely has no idea who you are. Having "strangers" looking at you in your own home is creepy and most likely frightening to her. When you leave he has to deal with the aftermath.
Be glad he is willing to care for her. Would you want to assume her care totally on your own?

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.

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!

Tebax45 it sounds like you are in need of a hug! Wow, you definitely are experiencing the brutality of an alzheimer's caregiver. My dear Aunt has passed since my first post in 2013 and is no longer suffering with this awful disease. Just for the record, my mother, her big sister, would have given up her life and cared for her 24/7 in a heartbeat, given the option. Today she is a home caregiver for patients with alzheimer & dementia & disabilities. It's strange how the last 2 posts from my initial message 'assume' all kinds of negative intent by my family. Just remember, you may be the current care taker, but they are still human beings with a soul that is loved and cherised by the family and friends they shared their life with whether you can handle it or not. Please find a way to keep them connected, pictures, blog, even a weekly email update, anything, just don't isolate. It's not good for you either! Take care.

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.

I am the caregiver for my sister in law. My husband has a couple more years before he can retire so I am with her just about 24 hours a day. The only other surviving family members they have are aunts and cousins, all of them live in other states from 500 to 2000 miles away.
We were transferred here with my husbands job so we don't know anyone here either. We try to make back to our hometown once a month, and that is only for a day because of my sister in law. I have given my precious time with my children and grandchildren to care for her. In return I get his relatives calling from hundreds to thousands of miles away to speak to her and behave as if I am the enemy. They make my life miserable by starting my sister in law up over not having a car anymore, and needing to get one. Asking her if she has a car yet, when can she come out, all the great things they are going to do when she gets there.
She CAN NOT GET THERE! SHE CAN NOT DRIVE, SHE DOESNT EVEN KNOW TO EAT UNLESS YOU MAKE HER. SHE WONT SHOWER UNLESS YOU MAKE HER AND SHE WEARS A COAT WHEN ITS 90 DEGREES OUTSIDE AND SHORTS AND SHORT SLEEVE SHIRT WHEN ITS COLD!
She doesn't read anymore because she cant remember what she read and reads the same thing over and over. I've told them this a million times and yet you bombard my home with boxes of books I don't want, she cant read and call and ask her how she likes them. You make my life more difficult than it already is and no matter how kind and considerate I am to you, you have no regard for anything I tell you! I have to listen to her fits of rage, feelings you stir up with your stupid phone calls and questions. You don't have a clue. We give her a wonderful life, she tells you every phone call every time you call that I treat her like gold. And they cycle repeats. I don't have to take care of her I could put her in a home but said a long time ago as long as I could take care of her I would. Maybe this is the uncles problem. I could say so much more, and yes I started stating it as if I was to them, made it easier and I got some frustration. To her family I say, come get her, you don't have a clue!

Is there a young person - an older teenager - who could reach out to the uncle? That great-niece or nephew would appear as an innocent, untainted by past "sins." If there is such a person with the proper courage and tact, it might work.....

I would not be that patient, but that is me. Only you can decide what you think is needed and how quickly.

Of course I'm not sure, but I don't think it's too much of a quantum leap to assume that this is your bio aunt and your uncle by marriage? If that's correct, YOU are the family worried about your aunt, but does he have any family who could be worried about him? Again, I'm guessing but maybe not?

Do you honestly believe from your conversations with him that he is competent? If you think he is not competent, he should not be caring for your aunt in any case, no matter what he thinks, no matter what she thinks. I believe you should end feel obligated to notify Adult Protective Services without hesitation and with no notice. They will show up at the door and demand entry and they will be backed up by law enforcement if necessary.

If he is competent, only you know if he has cause to be angry about something in the family, but regardless, I feel it would be time to write him a very short letter mentioning how you have tried to visit, you have tried to help, you have tried to arrange for the sisters to see each other possibly for the last time, but that now you are past all of that. This is your aunt and you need to check on the condition of her health and of her surroundings. You are not asking for a visit, just one I love you need to evaluate her status. Tell him that if he does not respond to you within 7 days and set a convenient appointment time for you to come within 14 days, you will be forced to contact the authorities. Tell him kindly that you don't want to do this but you will have no other choice.

When/if you go, go in alone they have someone outside waiting for you in the car. Both have cell phones with an open line to one another. Reason obvious. Uncle doesn't need to know that but your backup will know immediately if something's wrong and call the police.

If you get in and see for yourself what the living conditions are, you will know whether you have to report him or leave them be.

My first thought is something may not be right at the home. I would contact Adult Protective Services or the police to do a welfare check. The home could be filthy, or any number of things.

Ofcourse we offer all the time to give him a break!!! Are you kidding, we send flowers, baskets of food & treats, he won't return calls, emails and refuses to leave her alone for any amount of time. He needs a break but refuses to take it! She needs 24/7 care and he is overwhelmed but refuses to let anyone help, friends or family. In the beginning he allowed us to help, but after 8 years of the disease he now refuses ANY contact for anyone, including her big sister. it's really very sad, but we have now resolved to leave them alone, repsect their privacy and wait for the call, which will eventually come. Thank you.

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.

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!)

The visit sounds as if it would not be good for he since she sees others so seldom and if advanced in the disease could be very stressful for her and caregiver afterwards. I'm sure you understand the disease, generally, but without spending more time with her you really don't know. They say once you have met a person with Alzheimer's, you've met a person with Alzheimer's. They are all very different as the disease effects everyone differently. Is the visit more for others?

Ah, the REST of the story.

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.

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!

Your uncle holds all the cards and knows it. There is not much you can do except pray for your aunt. If her Alzheimer's is severe, she will die soon and you will not have to speak to him, but you can attend her funeral. Once a person dies, all legal papers are moot. This is not an uncommon family situation.

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.

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.

Is he doing it for her benefit? For example, maybe visits are stressful for her because she doesn't remember anyone. Does she have difficult evenings of hallucinating or false memories of events more often following visits? All of this is very difficult for someone with Alzheimer's, the not remembering and in my mother's case at time causes severe emotional distress. I have instituted rules on telephone calls, none to mom after we have started dinner. Why? Because dinner is the time to begin winding down and getting ready for a good night's sleep. When calls came later, everything would get tangled up and confused in her brain. She would think that her little girls have disappeared and she has not heard from them in a long time. Forgetting that parents have died and becoming emotionally distraught because she thinks she was never told or did not attend the funerals. Not understanding that her children are in their 50's and have homes of their own. The list goes on and on.... Sundowning can create so much stress for them, and in turn caregivers that deal with the after effects of well meaning intentions.

Are you supportive of uncle, or like Gigi said, critical of everything he does. Blame him for a multitude of things...

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.