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My husband was diagnosed with Alzheimer's about 6 years ago. He is physically fine, but his short term memory is gone and he can't make decisions on his own. I've just about read all that I can about this disease and have also watched videos on it. I've learned what the triggers are and what not to say or do to aggravate or get him angry. I am his ole caregiver. Now my question is friends and or family have been told time and time again how to not annoy him or get him all riled up, but they do it anyway. In particular he has one brother that will call every single day and interrupt my schedule with my husband because I like to have a routine. I have told him time and time again but he won't listen. Then there is a friend who told him about a death of someone that wasn't necessary for my husband to know this information and then I had to deal with the aftetmath. I'm at my wits end with these people. I suffer from flare ups of Epstein Barr and all this stress has gotten to me. Any help out there is much appreciated.

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I think most of us have at least one family member or friend who is overly “helpful.” Most people would respect your boundaries and stop when confronted, but for those who do not understand the meaning of NO, you need to block them from entering in your life. Let calls go to voicemail, set boundaries at the door if they show up unannounced, or stop the conversation if it enters unauthorized territory. I once stopped my husband’s kids for changing his routine by telling them directly that I am not controlling but I need to be in control of the situation. I am the primary giver, so I call the shots. The power is yours to use.
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There is no requirement to answer a phone. So, do not answer it during a time that is inconvenient. Turn the ringer off if you need to.
The idiot who mentioned a death probably has no understanding of how repetitively destructive it can be. Send him a video that explains it, or simply tell him he isn't allowed to bring up any type of drama. If he does, he's out.

The circle of people who have access will narrow a great deal as you protect his and your own mental well being. Because most people have NO idea of the trauma that is caregiving, nor the trauma of having a brain that is dying.
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Cheeky79 Jul 2023
Thank you so much for your input. The friend who told him about the death is also the friend who brought him to a baseball game last year and when
he brought him home, he brought him to a strangers house and my husband was trying to enter that home with his key. Thank God he did not
leave my husband there by himself, he would have gotten lost. I reached my boiling point this time around with the death comment so I blocked him.
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Grandma1954 July 28, 2023 10:38 am.
Don't answer the phone until you are ready to .
You can turn off the ringer or just let the phone go to voicemail.
If anyone starts to upset your husband during a visit you can say, "I'm sorry but this conversation is going to end" If it doesn't they you can tell the visitor that they can leave.
If someone is on the phone with your husband if you see him getting upset or confused the call can end.
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Sorry for your situation. People can be so ignorant about dementia. Unless they are living it they have NO idea what it is like to care for your husband. Friends and family (at least my mom's!) are in denial that their friend/relative has dementia. From their limited contact, often just a phone call, they can have no way to understand what's really going on and are happy in their make believe world.

I guess you can't keep telling people things that they refuse to listen to. The brother calling - have you told him when he "can" call? When the phone rings, you don't have to answer it. If you're busy with something important that shouldn't be interrupted, let it ring.

Annoying that someone got him upset about a death. Hopefully he has forgotten about it and moved on.

I would try to accept that you aren't going to control these people to help keep your stress level under control.

Good luck.
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I think what you want to hear is that its OK to cut off these people. It is. And, I think you have done everything you can to explain what your DH needs and what you need to care for him.

I do better having some structure. I can't do chaos. I can do interruptions when I am trying to get something done. So as suggested, turn down the ringer on the landline. Out cells on "Do Not Disturb". When there are complaints you tell these people "You have no idea what I go thru on a daily bases caring for DH and trying to keep my own health in check. I need structure to do the job.

My daughter had to work from home. She told everyone, do not call between the hrs of 9 to 5. If her front door was shut, she was working.
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CaringinVA Aug 2023
Well said, JoAnn. ~CaringinVA, 8/6/23, 1:36pm est
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Would these annoying people be willing to learn more about your husband's condition and how best to communicate with him? That way the instruction wouldn't all be coming from you.

I've had this problem too. Rude Aunt would come over and talk talk talk to dad about matters he couldn't remember. She wouldn't admit he had dementia. So she never learned how to communicate with him as he deteriorated. All this did was stir up the household. Also, the people who talk about family members or friends that LO has forgotten, well, they're plain annoying. They think it's a way to keep connected, but all it does is exasperate me and wear out LO.

I hope it gets better for you.
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Tell his brother -
"We have a set routine and it is the only way to keep him calm. I will ONLY answer the phone between the hours of x and y." And then stick to it.

If you have a land line, turn off the ringer during the downtime and let the answering machine get it. If you have a cell, turn off the ringer.

As far as the IDIOT who took him to the ballgame, keep him blocked.

Since they cannot control their own behaviors, you have to control their access to your husband.
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If you have asked nicely to behave in a certain way and family and friends do not comply with your request I would tell them in no uncertain terms that they are no longer welcome in your house.
And be rude, if necessary. Yhey are blockheads and don't care.
Not really friends,
As for your husband's brother - when he keeps calling at these inconvenient times calls, do not respond.
You don't have to admit anyone into your house who does not respect your wishes, so out they go.
You are protecting your husband.
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Let this be much MUCH easier than it’s been for you both.

SAY NO. “No, he can’t have visitors today”. “No, he isn’t able to come to the phone”. “Sorry, not today”. No. NO!

YOU have RIGHTS as a caregiver in a difficult and taxing situation. HE has RIGHTS as the victim of a progressive, difficult illness.

If you see benefits, both for you and for husband, emerging from a peaceful, structured schedule, ENFORCE THAT.

Why on earth would you not feel as you do? Kudos for what you are able to do now!
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Cheeky79: You'll have to set the boundaries again by not answering the phone when the brother and the friends call as these individuals are not listening to your initial request.
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