Hi! My sister and I are carefully managing our 85 y/o mom's care as she progresses with Parkinson's and probably Lewy Bodies dementia, though we are in the middle of getting a fuller picture of that. She is currently in an independent living apartment in a place with graduated care. We think she's not too far off from needing some memory care help. She is currently struggling with language, most of all. Physically, she's actually doing pretty well. Part of our management is helping her with email and phone, but now that we cannot be with her physically with her we have encountered some limitations. My husband who is very computer savvy has managed to get her set up with remote assistance and she calls all the time to get help with various things that "happen" to her computer. We also monitor her email so she doesn't get spam, because she is unable to distinguish between friend and foe any more, and I won't even get into describing all the little pickles we've had to rescue her from. I rarely read emails from family or friends, for privacy reasons, but she has one friend who has been negative in the past so I thought I should check in on their recent correspondence, and I discovered that this friend is telling our mother that we, her children, are abusing her by making her stay in senior living during the pandemic, AND that she should get a second opinion from a qualified person regarding the Parkinson's diagnosis (btw, we took her to a top physician at a top medical school hospital)! I cannot even begin to describe to you the pain this has caused my sister and me. We are not sure how to handle it. Do we write to this person and let them know we saw this email (my mom hasn't mentioned it to us though we can see she has read it) and risk having that "friend" call her (we can't control the phone situation at all) to tell her we are monitoring her email? I mean we already feel HORRIBLE about invading her privacy but we know it's important right now in order to keep her safe, and everything else she gets is so lovely!!! We don't want to cut her off! I already blocked these people from being able to email her any more with out it going to a review place for me first, but should we block anything my mom sends out to them? And most importantly, do we need to address these people directly for THEIR abuse? Finally, would it be a terrible invasion of her privacy and would it harm her dignity for my sister and I to send a generic email to ALL her friends sensitively describing her situation, and take care of things that way? ANY guidance is appreciated. Thank you so much!!!
Who has POA?
What was your mother's reply to the email? Did she acknowledge it at all? I am wondering if Mum has LBD can she fully comprehend what the "friend" is saying?
The one thing you cannot control is the behaviour of the person who sent the email. If they have been a Negative Nelly all their live, they are not going to change now. If you tell them you read the email, it is in their twisted mind confirm that you are controlling Mum as opposed to caring for her. So I don ot feel a direct approach is the way to go. Screen Mum's emails and is you get more nasty ones, send them to spam.
If Mum comments that she has not heard from Negative Nelly for awhile you can ask you hubby to take his time checking for them.
I would not do a big email to all her friends, unless there is a significant change, Mum is moved again etc. But it is worth you while to regularly check the content of incoming and outgoing email.
I see no positive reason why someone in memory care needs a computer or a phone. The staff can help that person make calls or Zoom or Facetime visits if needed. Every time you get a communication from a person in memory care, it will disturb you or cause you to jump to for some imagined issue. None of it is real and it will cause you no end of grief.
I wouldn't worry so much about the privacy invasion of screening your mom's emails. You seem to have it set up now so that this 'friend's' emails get prescreened before your mom gets them and I like that idea and if you want to prescreen your mom's response I'd have no problem with that either. It is actually one way you have of evaluating your mom's current mental/memory status. And I'd also occasionally scan a few of the other emails to see what is happening but wouldn't do it routinely.
I wouldn't send anything out as a blast to all of her email friends just because of one or two who are out of line. That's a pretty big over-reaction and more of an invasion of privacy than just a quick email review. Your mom will continue to require more and more oversight as her dementia continues and seeing how she answers the emails will provide you clues.
I don't know what phone service your mom has, but is it possible to block that person's phone number too, so the person doesn't call and upset your mother?
When we moved mom to MC, my YB was all set to sign her up for TV and phone service. I suggested we wait. I didn't want her to sit in her own room watching TV. I also suspect she was beyond being able to use the controller. As for the phone, about the only time she would call me before the move is when she needed a ride to an appt, or needed food/supplies, esp after we took the car away. I didn't think the phone would be useful for outgoing calls, and if she isn't in the room, she would miss calls, but get all those junk call messages or calls when she was in her room. Given also her hearing is fairly well gone, no point, so I never set her up with TV or phone.
As for email, and internet, she long ago bought a small computer, table and printer, which I set up with the dial up (yup, long time ago!) service I had, but she never used it! After we moved her, I checked on it - it wouldn't even boot up! So no email, no internet access needed. Saves some money anyway!
If your mother does end up moving to MC, perhaps try leaving out the phone and internet connections - maybe leave the service available for a month or so, but don't give her the phone and PC. If she doesn't miss them, cancel the service. Staff can always call you if she needs you, and often you can prearrange a call to her with their phone system or perhaps get them to set up some kind of video connection.
We often think our LO is in better shape cognitively because they're "doing pretty well" physically. The phone issue almost always comes up with dementia. And most people end up removing the phone from the living quarters because their LO gradually loses the ability to use it appropriately. So what you end up with is excessive phone calls from them because they forgot they just spoke with you, or are anxious, or just fiddling with the phone. Often times, when the phone rings, the person doesn't even know what the sound means. Please note that I said remove the phone from the living quarters vs. taking the phone away from your mother. There's a difference.
Someone recommended some screening of her in-coming/out-going emails. You should be screening them all if she continues to use email. You stated that your mom has already gotten into some "pickles," so she's already demonstrated that she has some difficulty using the computer appropriately. Don't allow a situation that results in her buying a whole jar of pickles instead of just a few.
You know your mother has some type of dementia (hopefully to be definitively diagnosed asap), she has difficulty communicating and she is being manipulated. Because the friend has already created some issues, you may want to speak to an Elder Attorney to determine how best to handle that situation.
It sounds like your mom needs much more supervision. At the least, I would recommend that she be moved to the Assisted Living section of her community where they can monitor her on some level. As POAs, these are some of the hardest decisions we face because we think we're taking something away. As dementia and PD progress, a LO's living environment and required level of assistance has to be modified, sometimes fairly often. There are two ways to look at it: The negative way, which is that things are being taken away from them. Or the positive way, which is that we modify the environment to allow our LO to be as successful and safe as possible with the current skills they have.
https://m.activebeat.com/your-health/women/robin-williams-death-9-things-to-know-about-lewy-body-dementia/?utm_medium=cpc&utm_source=google&utm_campaign=AB_GGL_US_MOBI-SearchMarketing_TR&utm_content=g_t_303659477023&cus_widget=&utm_term=lewy%20body%20dementia&cus_teaser=kwd-35132660&utm_acid=3040947159&utm_caid=1599827680&utm_agid=62022144433&utm_os=&utm_pagetype=multi&gclid=CjwKCAiA7t3yBRADEiwA4GFlIwXNqttVn7Uds_rHQseE0Lf2rFXNN0wDvS4RrIV-lP80ott8wAXsuRoClvoQAvD_BwE
I see no problem in checking her emails. But I would not do an email to friends concerning her health. This I feel is private. As her representative you need to look at her health as how she would handle it. Is she a private person? Or one who is very open? I would only bring up the Dementia when it needs to be because of the situation. And I would not go into detail. But then I am a private person.
Not sure if Mom is ready for MC maybe an AL. I am big on phones being "lost" if they cause more problems than good. Mom needs it in IL. Does it have child controls? If so use them. Then she can only call who has been programmed in. You can block others. But in an AL, she really won't need it. You will be made aware of anything that happens. If she needs to call u it can be done from the desk. Maybe you can set up one of those video chat things. There are alot of members where parents kept calling them for everything even at work. It keeps them from relying on staff to help them. Something they are paying big bucks for.
In this day and age we need to protect our parents. There really needs to be a law protecting them from scammers. There is such a fine line but with Mom having Dementia she can no longer reason or be reasoned with. I would write a nice letter informing Moms friend that she has caused a problem. I would tell her that Mom has gone to the best Drs. After many tests it has been found she has Parkinson's and LB. Since you and sister are involved in Moms care and you trust her doctor's to give her the best care, you would appreciate her emails not include anything negative concerning her care. Living across Country she has no idea what you and sister go thru daily on concerning Moms health and happiness.
"We also monitor her email so she doesn't get spam, because she is unable to distinguish between friend and foe any more, and I won't even get into describing all the little pickles we've had to rescue her from. I rarely read emails from family or friends, for privacy reasons, but she has one friend who has been negative in the past so I thought I should check in on their recent correspondence, and I discovered that this friend is telling our mother that we, her children, are abusing her by making her stay in senior living during the pandemic,"
So, again, this isn't really a privacy issue - OP doesn't interfere with family, but only this one who has been a problem, or the "pickle" emails... When someone starts losing the ability to make good determinations, someone has to protect them. This "friend's" lies may also be very upsetting to her mother.
When dementia does kick in, we have to protect our LOs - it is or becomes similar to protecting our children from phone/internet/email/social media that could be harmful. OP is NOT stopping her mother from having friends and family contact, she is protecting her from nefarious and harmful contacts. OP is doing the right thing.
Good luck and God Bless!!
Does anyone know a way to eliminate unwanted calls to a landline? I have entered her number to the " do not call" list many times.
Did you try Googling up this type of phone instrument with your questions with how to block? What does the available owner's manual tell you how?
vultures who will tell you anything to get you to move into a more expensive room/plan. It’s all about the money. If you do move her, be sure to get a camera in her room, even if you have to sneak it. I have caught some horrific things with mine. Unless you live in one of these hell holes, you really have no idea what goes on. I have pictures and videos with times and dates. My children all know that if I have a stroke or anything that causes me to lose my cognitive ability, they are to get me out and NEVER to put me in memory care. My will stipulates that any of my children who try to stick me in memory care will
get nothing when I die. They are all fine with that because they have seen my pictures.
Please do not take away your moms dignity, privacy, and possible safety by continuing down your current path. Don’t tell her what you have already done. Just undo it. And her independent facility should be allowing visitors with social distancing and masks, especially outside. Visit her as much as possible and let her know you love her.
A couple of comments.
Please let's not 'shame' anyone on this forum. We are all finding our way, and if someone is willing to put their family business on display, I don't see why anyone needs to castigate them for being honest. People find their way here when they are going some of the most painful, confusing, and difficult points of their lives, and they are truly asking for advice, because they don't know.
If you were to lose your cognitive ability, as you describe above, if the worst were to occur, what exactly have you directed your family to do to care for you? How would that work? What would you want to happen?
You're helping her with vital things she just can't do herself, so as long as you're honest, I see glancing at email as ethical. I haven't taken it as far as actually reading emails (beyond headers) but understand why you would in that situation.
The friend dilemma may be something only you can work out, since subtle details are hard to know here. From the basic info, my approach would be brainstorming to come up with another way you might have learned of the complaints. It would be a (white?) lie, but if it's critical for safety it could be worth it. You could just ask her firmly if she's OK with the whole situation and not have to bring anyone else up.
As for your mom's friend, her comments are disturbing and damaging. She either has her own set of issues, does not understand the depths of your mom's issues (many outsiders don't) or is malicious. Not knowing your mom's email client, I cannot say you can block her friends' emails but it may be worth looking into.
Good luck and best regards,
I suggest casually getting in touch with your mother's negative friend and just saying hello, and letting her know what's going on with your family. We have all sort of discussions with our friends when we are teenagers and our parents are none the wiser and don't need to be. Imagine your parents putting the kibosh on your friendships. You wouldn't like it and you don't need to put any energy into it. Let it be.
And, if your mother really is on the road towards dementia, she's not going to remember those warnings and admonitions coming from her friend. I'm sorry to be direct but that is the truth. Our parents with dementia live in the moment so I'm not so sure that gossip is really much of an issue.
If your mother is still able to use email and the phone, let her continue. There's no reason to make her world any smaller any sooner than you need to. If your husband has the IT skills to keep her safe from harm, then of course avail yourself.
I assume she doesn't have control of (much) money so that no one can scam her out of any of it.
Mostly, please know that you don't need to feel guilty about the steps you have taken. You are keeping your mother safe, and that's the most you can do.