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Mom has vascular dementia, lives alone next door to my sister. Short term memory is limited, walks with walker, and doesn't do much of anything without someone pushing her to. She's managing as best as possible, but sis works and I live an hour away. We want to keep her in home as long as possible and not in a facility. Home health started last week (Nurse, Aide for bathing, and PT to help with simple exercises). Often, I'm present when one of these HH people are there - when they ask her questions, she lies or gives them wrong information. (Ex: She tells nurse she wears her Depends at night, when I know she didn't because they aren't on her or in trash.) Everything I've read says not to contradict/argue/correct.......but she's giving wrong information to these people who need to know truth in order to provide services she needs. She's never out of the room so I can give the info in private, so I usually give the correct info in front of her in a factual, non-confrontational way......but I can see by the frown on her face she doesn't like it. She will tell the doctor she's "fine, just fine" at every visit, but when I bring up a pressure sore or edema - she glares at me. She had been telling the Home Health people not to come when they called to let her know they were coming - because she's lazy and just doesn't want to make the effort for them. I've told them in front of her that I have Medical and Durable POA, and that she does not make that call anymore - and to come no matter what she says. Then I feel terrible for being the "bad guy" - but everything my sis and I do for her is to keep her as healthy and safe as possible and out of Nursing Facility - I tell her that often. Opinions? Advice?

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I got very good at positioning myself just behind my mother so when she gave a wrong answer I could shake my head no.
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Reply to SoVeryExhausted
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I think you are doing a fine job! You have many things in place already. Having an Aide, Nurse & PT visit is key, as with VD it's easy to lose track so supervision will be needed more & more to accomplish tasks.

For me, originally I was conscience of trying not to ruffle feathers.

So I gave wide-eyed looks or tilted head when the fibs were told. The professional would sometimes notice & nod.

Or walking the home visitor out if I could to give some brief corrections (out of earshot). Or writting letters to pre-advice & add to the medical file later.

Then I became more bold & said things more openly (but non-confronting). Eg: I see it a little differently... I've noticed... Let's mention the...

Any professional who's got a bit of experience has seen this stuff 😁. They are asking, but also watching/observing & collecting info from family members too.

A clever OT once asked about footwear (as a few falls were barefoot). Did the shoes for well? "Yes". Asked to see the shoes "I am wearing them". Can you take them off? "Yes" Can you take one off now to show me how the Velcro works? "It's hard" Why? "I can't really reach my feet". I see. (Bingo - mobility assessment needed....)

One time I lost patience a bit & said to the professional, if you want collaboration, please call me or other family members. "Ah-ha, right. Thank you! Yes, we will do that."
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pamzimmrrt Feb 28, 2021
I became an expert at the eye roll!! My favorite issue was Mom telling everyone she was blind.. then they would come in and find her reading a book! To be fair she was low vision,, but sure as heck not blind! I would nicely insert what I "saw" also
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Hey, Lisah, my mom would often do this, and it drove me crazy! She didn't have dementia, but she definitely had memory issues as her CHF progressed and her breathing worsened. I don't think it was a matter of "lying" per se, but, in addition to just not remembering things well: 1) she didn't think it was as "bad" as it was (especially in the case of her edema) 2) she didn't want to be a "bother" or a "burden" and 3) invariably, seeing one doctor often lead to seeing multiple doctors, and I think she was just tired of it. While I could understand that rationale - because the "doctor parade" has started for me already - she just couldn't seem to get it into her stubborn head that waiting and hoping to see if things would magically get better on their own was not a particularly good medical strategy.

I remember once sitting down with her for her to make up a list of what she needed to talk to the doctor about. When I told her "and your memory is getting worse" she practically bit my head off! So when I cited specific examples, she just blew that off as "no big deal". But it was a big deal to me, since I had been vaguely accused of elder abuse by an ER doctor when she let herself become so severely dehydrated that she had a bad fall. Up until then, I had felt much like you - I didn't want to be the "bad guy"; it was so much easier and much less confrontational to just let her decide how sick she had to be before we called the doctor. However, once I had that "conversation" with the ER doctor, I decided that if I had to be the bad guy, I would be; so long as she was living under my roof, and I was BEING HELD responsible for her well-being, then she was just going to have to deal with her daughter treating her like a child when her actions warranted such! If that was unacceptable to her, then she was free to seek living accommodations elsewhere. It was harsh, but I came to realize that I not only had to do what I could to keep her as healthy as I could, but I also had to protect myself and my family from any allegations of abuse! It sucks, that that had to be a consideration in my caregiving plan, but that's the reality of the world we live in; better to face the reality and make a doable plan, than to bury your head in the sand, hoping for the best, and when the time comes that that doesn't happen, you're left holding the bag!

One of the biggest reliefs to me once she was on hospice was that her desire not to seek more medical intervention wasn't frowned upon; if she decided not to tell her hospice nurses what was bothering her on any given day, the only one who suffered was her...once she realized THAT she started to tell them a lot more about how she was feeling!

So if you are going to keep with your plan to let mom stay at home for as long as she can and keep her as safe and healthy as you can, you are going to have to be proactive with the medical stuff. More proactive than I'm sure your mom would want. And sometimes that's going to make you the "bad" guy. So be the "bad" guy and let mom get mad; as I said, if that's unacceptable to her, her alternative is placement in a facility.

Good luck!
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lisah13 Mar 3, 2021
Yes, yes, and yes. I've resigned myself to being the bad guy, and I'm at peace with that.......the Home Health assessment nurse was very impressed that my sister and I had been proactive, especially when I handed her a copy of Mom's Living Will, DNR, Letter of Incompetence from doc, DPOA and Medical POA. And you are right - deep down, she isn't "lying" - she's simply telling "her truth" as she sees it and trying to placate everyone to seem that she's "fine" - I've started arguing with her less, and just stating facts, or not giving her a "choice" - just simply stating what we are doing - "you have a doc appt today, so I'll be there at 10 to get you" It's helping alot. And we have the "reminder talk" often - if we don't take care of issues here at home, the next step is nursing home, and none of us want that. It's helping too - just has to be discussed often.
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Go online and look up “Activities for Daily Living.” This is a list of all the things medical professionals look at in older patients. Using that list when you write your letter to her doctor or a handout to caregivers let’s you be specific in your concerns. We were fortunate that my MILs doctor gave her a copy of the questions he asked and her responses so I was able to do a direct comparison between her response and what was actually happening, but the ADL list would work just as well. It allowed me to be very specific about her needs. For example, MIL told the doctor she still fixed her own meals. I was able to tell the doctor how she had spoiled food in the refrigerator, canned goods up to five years out of date, we had pulled the plug on her stove because she couldn’t remember to turn off the burners and BIL who had POA was allowing her to subsist on crackers, cheese and lunch meat.
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lisah13 Mar 3, 2021
Yes, I’ve completed the IADL checklist and gave to the doctor so he’s aware. I also told nurse who did the home health assessment that she’s not able to do many ADLs or needs assistance. Mom doesn’t see that everyone knows her limitations and doesn’t want to seem weak.
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What’s wrong with walking the caregiver out after the visit and letting them know the truth? I did this many times with my dad, he didn’t have dementia but often denied the issues in front of others. I had many productive conversations in his driveway. You can also write the doctors or use a patient portal and let them know what you’re seeing and that mom can’t be relied on for accurate information. And remember that docs and caregivers have experience with what you’re dealing with and may often know the untruths when they hear them
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Reply to Daughterof1930
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lisah13 Feb 28, 2021
Good idea.
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Before my mom has a doctor appointment I send a message through the patient portal sharing concerns. I tell him in detail what is going on so I do not have to contradict mom at the office.

She never tells the truth and just repeats the same issues each visit.

Mom is angry all the time and does not accept her diagnosis. She thinks she can do everything. I am accused of being bossy and controlling.

This is a great help and if you have no portal ask if there is a better way to communicate before the appointments.
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Reply to InFamilyService
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lisah13 Mar 3, 2021
Since there isn't a portal, I have begun to do a handwritten/typed "pre-appointment" concerns list for the doc to look over and address issues - this has helped and keeps me from being glared at during appointments!
My mom also went through the angry/denial phase, but as she declines, and I try explaining that everything we do, decisions we make, help we get - is all for her so she can stay in her home as long as she can. But I'm still the "bossy one" and for her sake, I'll accept that designation. Thank you for your input.
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Keep giving correct information to help keep your mom healthy and safe. You may want to consider keeping a journal of "current information" that is shared with health care professionals when needed. Then, "the book" can be the expert.
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Reply to Taarna
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My mom does the same thing- leaves stuff out or provides false information to her doctor and PT. She is still fully competent although I have all POAs. Some of it is she just isn't aware of the details and some of it is I believe she just wants to be left alone. She will get mad that I got her "in trouble" with her doctor. I explain to her that they really need to know what's going on so they can help her as much as possible and so she can stay out of a facility as long as possible. She understands and accepts that. I think you are totally on the right track. Best wishes to you!
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lisah13 Mar 3, 2021
Thank you!
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In Doctor's offices, I stand behind hubby and shake my head yes or no when the doc asks questions.
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Reply to MaryKathleen
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The care staff coming in already knows she has dementia because it's in her care chart.
Talk to them privately on the phone or in an email and explain that she lies and does not comply with any of the care plan. They will understand. If you're seeing things like pressure sores or any other problems that you see and they don't, make them aware of it by phone or email. When the nurse or PT is getting ready to leave, walk them to their car and talk.
As for you being the "bad guy" you will just have to ignore that. If she's refusing to let the help in the house then she can't be staying by herself anymore.
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