I need to hear from frontline dementia caregivers: Do you block other family members from talking to the patient?

No never..sibling chooses not to visit after being invited, however if I ask him to call..he will & I give mom phone

I allow anyone in the family to talk to my wife who has dementia but I have set guidelines not to upset her.

DH asked his cousin not to bring his aunt to visit DH’s mother in assisted living.

DH’s aunt was concerned about her sister. DH’s mother is manipulative and difficult. She would have latched on to her sister and nephew and sister and insisted on being removed from the assisted living facility.

It had taken a great deal of effort to arrange for her to go to the ALF from a hoarder house, then a temporary stay at a hotel, and a stay with her sister that didn’t work well to have her move to the ALF.

Once the reasons were explained, my husband’s cousin agreed that he and his mother would not visit her.

My MIL was not provided a phone when she moved into the ALF because she would call the police due to delusions.

She did borrow a cellphone from a neighbor and called her nephew, DH’s cousin, to pick her up. He called my husband, who told him not to do it, because he’d have the same problems he had before with her and that we all did not want to go through with that again.

My MIL could not remember my husband’s phone number because we had eliminated our home # and now only have cell phones.

She doesn’t receive any visitors beyond the staff of the facility because the visits would only aggravate her. As far as she is concerned, it is better that all the people who put her in the ALF disappear. We do follow up on her care, check with the staff on her health and make sure she has what she needs. Better no contact than to cause misery.

Her sister wishes she could see her, but the answer is always no. It is sad.

My brother blocked me from seeing & speaking to my mom who had dementia & lived across the st from me. I was the one who was caring for her before this.

It wasn’t until a year later when I hired a lawyer & found out why. He had taken her to a lawyer & had her amend her trust leaving everything to him 100% instead of the 50/50 split she had for 20 years.

He was afraid with her dementia that she would tell me. Best of luck to you

No depending on how advanced it is obviously some days are better than others. And I think at some level it is comforting even if they get the relationship wrong. Many times my wife forgets we are married to each other.

I haven't blocked or discouraged anyone from visiting, but I could perhaps understand if someone had a delicate routine for the day, and was cautious about letting anyone disrupt it, fearing that disruptions will throw the balance out of whack, making it difficult to get things back on track.

1. Yes, I would selectively block people. My Mom couldn't hold the phone anymore and sometimes, I just couldn't get these people off the phone. So I would selectively block and unblock them, just so that they wouldn't call daily or call during the times that my Mom was sleeping. If some of these people caused agitation to my Mom, they too would get blocked. However, I probably would have confronted the person before blocking them (Warning here: What my Mom heard on the phone, was different from what the person was actually saying. The only reason why I knew was because my Mom used the speakerphone and I couldn't help but overhead both sides of the conversation.)

2. Yes, I would have taken away the elder's phone if I discovered she was following the instructions of a scammer or a "dear friend" who keeps asking to come over or needing money. In my case, even though my Mom's number was on the "do not call" registry, the number of sales calls and calls that rang with no one on the other side, were just too many interruptions in a day.

Good luck!

My mother has the Alzheimer’s and dementia. She was also a hoarder. I got lucky because her family wanted nothing to do with her and her second husband. But I wouldn’t stop, or change phone calls, or friends from stopping by, I’d let them know she has a disease and it’s called dementia, I’d go out of my way to tell them , your looking at her, but her mind is gone, and don’t take anything she says personal. She’s not herself anymore. If they can’t understand that, then don’t come. Be polite but firm. Keep tigger friends away. And keep up the great work. Your a warrior, never forget that!

Make sure that APS speaks to Mom without sister around. There was a post saying that APS talked to their LO right in front of the LO that was they were there to make sure was safe.

If that was my mother, I'd go across the country, if necessary, and show up at her door for an unannounced visit. You need to find out what's actually going on there.

As for blocking certain people, yes, I blocked a couple of people from having access to my mother mostly for their own protection. One woman in particular considered my mom her lifelong friend, but Mom considered the woman a 70-year-long pain in the backside. She always tolerated her "friend," but as dementia set in, Mom's filter on her opinions disappeared and I knew the friend would be devastated if Mom blurted out what she really thought of her. I kept the friend up to date on Mom's condition and just told her that she couldn't hear well enough to talk on the phone (mostly true) and could no longer comprehend a disembodied voice on the phone was someone she knew (completely true).

So yes, there are times when blocking access to some people is called for. Most people do it if the callers tend to upset the person with dementia, but I did it to keep from upsetting the one who didn't have it.

I’d only block someone from calling if the patient became seriously upset when they talked with them. Rightly or wrongly, dementia patients DO react to some people negatively and the patient can become unmanageable. That interferes with their care. Dementia patients by definition are out of their mind. They sometimes don’t know who the caller is or think that the conversation was disturbing even though it wasn’t. Then that falsity sticks in their minds….for a while. Later it’s gone. At some point they can’t use a phone. But people outside the household might not realize that.

Thank you, it actually is helpful. Sadly, in mom's case, I strongly suspect that she does know how to use the phone and that's why it's been taken

I have blocked my father's crazy cousin from calling. She is nuts, has threatened me, which I have in writing, and she and her brother tried to get my dad to sign a reverse mortgage without me, his POA and only child, there. I think I am justified in blocking her after threats and what I consider to be bordering on elder abuse. If your situation is something similar, block them and don't feel badly about it. My father still has his phone, though he doesn't really know how to call out anymore on it due to worsening dementia at 90 and Parkinsons. Anyone else is welcome to call and visit, but this particular cousin is toxic and has ulterior motives and I am not gonna stand for that. Use your judgements on who can call your mom, if you feel it creates a toxic or even dangerous/elder abuse situation, block them. I will add my elder care attorney advised me to do this as well after I told him what this cousin had done and showed him her hateful and threatening texts to me. Good riddance.

I never blocked anyone from calling my mother who had dementia and lived in Memory Care Assisted Living. Nor did I (or would I) ever have removed her telephone which was her only way to reach the outside world. Unless she was repeatedly calling 911 and asking for help, for no good reason, like her sister was doing, THEN I would have taken her phone out of her room in the Memory Care. There were a couple of nieces of hers who would call and get her ramped up with anxiety about different issues that they should have stayed mute about, given that she had dementia. And I'd ask them NOT to upset her when they called, but they'd call anyway. So I'd tell mom not to take their calls if she didn't feel like it, and oftentimes she didn't. That's the work-around we used to avoid heartburn with the callers who aggravated her.

This seems like a moot point anyway since your mother lives with your sister and you have no ability to remove her phone or block anyone from calling her anyway.

I also wouldn't rely on APS to do much of anything to help you here, unless they find a truly horrifying situation going on at your sister's house and in-your-face negligence towards your mother on her part. Otherwise, they'll say everything appears in order and close the case.

If you wind up getting your sister removed from caring for mom and want to block her from talking to mom in the future, I assume it would be because she has been abusive towards her. I guess just play it by ear and then DO block her from speaking to mom moving forward. The goal is always to keep mom's best interest at heart, nothing more, which can be a tricky road to navigate.

I hope your mom IS getting good care and support and you won't wind up having to take any measures to block anyone. I also hope APS goes out there soon to do an assessment and that you keep us apprised of the situation. Fingers crossed for you that there's a good outcome.

Of all mom's friends and family members I haven't blocked any from calling. That said I had a hard set-to with her nephew (my cousin). He is a leech and a whiner who has never held a job in his 60 plus years. Over the past 30 years I estimate mom has been convinced by sniveling nephew to send him $50,000-$100,000 for various things including a weekly housekeeper, a heavy duty toilet seat, and cases of Gatorade and fast food to eat while his water well was being repaired (mom paid for the repair too!) His calls left her extremely agitated and in tears because she could not remember how to send a check in the mail, let alone actually write one out. She kept an address book turned to nephew's page with "$2,500" written next to his name. She said that was a bill she had to pay! And that nephew would call to remind her. Once mom's dementia progressed to the point that brothers and I had to step in as POAs, I forbade nephew from any request of mom for money. If he wanted to talk with her he could talk about anything else but that. Mom lives here with me now. She lost ability to work a phone but she can have a conversation or video chat if I set it up and have phone supported on a pillow for her. Every other month or so nephew will call. Mom seems to enjoy talking with him now so I'm sure money doesn't come up in their conversation. Sometimes you have to put your hard hat on.

If certain people are annoying/triggering/unkind to your LO, well, I would think long and hard about allowing them access to your LO.

My mom hates with a grand passion, her SIL. She lived in fear this woman would actually call her (she did, once in the past 15 years and it was to tell her that her husband, mom's brother, had died). You'd have thought SIL was tormenting mom, but she had to tell her. They have not and will not speak again.

If mom were capable of answering her phone and dialing out, I imagine that YB would have a say in who could and couldn't talk to her. I myself have been in the hotseat more than once, and I know when that is b/c I'll try to get her and can call as many times as I wish, but she will never pick up the phone.

Trying to use a cell phone, esp a 'cheap one'. which is what mother has, is daunting to her. She can't hear the other person, she doesn't 'get' that when she talks, the other person cannot also talk and be heard. She can't figure out how to dial out and is completely flustered that telemarketers now have her cell phone #. She gets very upset by those 'your car's warranty has expired' kind of calls.

Personally, I think YB has screened 90% of her calls. He's made it as easy as possible for her to call out, but she can't remember how to do it.

It sounds like you are having other kinds of problems, so I doubt I've even addressed what you're trying to say. I'm sorry for that, I only know that when mom went to a cell phone (against her wishes) she didn't hear again from a LOT of people. Very sad. She could really benefit from phone calls from the few friends she still has who are living. But they are not in her cell.