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!!!
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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.
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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.
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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.
Good luck and God Bless!!
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