Mom gives "misinformation" or outright lies to doctor, home health nurse and PT. How to handle?

Lisah,

I think my first question is, why are you opposed to Assisted living/Memory care?

If your sister works and you are an hour away, what does Mom have to keep her occupied?

The positive side of a facility is that there are lots of activities. Friendship and community.
Of course there are bad facilities, so you have to go visit and do some research.

It could be that Mom may be better off with folks around her constantly that keep her busy.

I understand how difficult and painful this decision is. If she can't live with you and living alone is becoming problematic, you may have to consider other options.

Assisted living/Memory care staff deal with this situation constantly !
They are more equipped than you and I to deal with dementia.

Best wishes!

Your mother's 'showtiming' and pretending to be fine in front of doctors and others is one sign that she's NOT fine and her dementia is progressing to the point where she needs care on a 24/7 basis. Pressure sores, edema, not wearing incontinence briefs...........all of that is a problem and will only worsen with time. Wanting to keep her as healthy and safe as possible and out of a managed care facility is a senseless statement, when you think about it. She either needs in home care on a daily basis so someone can make sure she's safe and fed, etc, or, she needs to move into Assisted Living or Memory Care Assisted Living where she'll be fed 3 meals & 3 snacks a day and helped with whatever she needs help with. Everyone says they want to 'age in place at home' until it becomes SO unsafe that they're in danger of burning that house down or inhaling chemicals & asphyxiating themselves! That's why Memory Care ALs are popping up like flowers on every street corner these days. Dementia is rampant and it's dangerous for elders to be living alone. I know, b/c I had to place my own parents in Assisted Living back in 2014.

Keep a close eye on your mother and get some daily in home help for her ordered asap, whether she likes it or not, since your sister works & you live an hour away. That person can report back to YOU and tell you how she's doing. She can help your mom with food prep, bathing, cleaning, laundry, whatever is required (in addition to the Home Health aids which work too few hrs). She'll also be your eyes and ears when you're not there to see & hear things for yourself. If you listen to only what your mom has to tell you, you'll hear wild stories that she invents for YOUR sake. My mother lies like a RUG and even told me that one of the caregivers 'threw her out of her wheelchair' the other day, that she didn't fall out herself! Dementia can go south very quickly especially as dusk approaches (sundowning).

As far as showtiming for others goes, my mother is STILL doing it at 94. To this day, I've had people say ask me, "What is your mother doing living in Memory Care, she seems so great?" Ha. Don't ask her a REAL question........she's fine with "Oh how are you today, don't you look lovely" and all the surface chatter that's muscle memory............but anything more than that & she falls apart. It's all an act and a very irritating one for US, the ones who have to straighten out the messes they cause & sort out the bull from the crap for the medical pro's who believe them! She can go from making sweet small talk with a resident to telling me she's coming over to my house to visit with her mother in a few minutes. Her mother has been dead for 35 years now!

For many years now I've spoken with her doctors privately before and after each one of her appointments (even prior to her living in Memory Care; as her POA, the docs only speak to me now). It's vital they know the truth vs. the confabulations our mothers want them to hear. You don't have to say anything to the doctor in front of her, but privately is always a good idea.

Good luck to you, you're in for quite a ride here, trust me. Dementia is such an ugly thing, and terrible to witness in a loved one who we lose to the ravages of it on a daily basis.

I talk with the doctor before and / or after the visit.  I also take a notepad and write down information.  Yesterday I took mom to an eye appointment because her eye is horribly inflamed and the dr was asking her questions and I was answering the questions on post-it notes for him to read after mom answered.  I don't want to embarrass her by contradicting her out loud.

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.

In Doctor's offices, I stand behind hubby and shake my head yes or no when the doc asks questions.

Imho, you, as her agent (PoA), are the individual in control of your mother's health and not her.

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.

Yes, you need to tell them what is going on with examples - like the diaper. She says she wears it, but not in trash. As for the diapers - is she going to the bathroom in the bed?? Or maybe she really doesn't need it at night. If you're trying to get her to wear it so she won't get up during night to go to bathroom, put a potty chair by the bed for night use only. Keep her using toilet as long as you can. Once brain becomes comfortable relaxing to allow you to go while laying down or wearing pants, it is very hard to reverse. Bowel movements will become normal to her as well. Use the toilet. (make sure there is something like a dresser behind the chair so it can't tip over)

You've already addressed one problem of her telling them not to come, so address everything. Explain to mom that drs and all the providers have to know the truth so they can manage her care. You might ask her why she answered a certain way when she knows it is not truthful. Maybe she's afraid if others think she's frail, she can't stay home.

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!

They all lie to health care professionals, and the doctors are on to this if they know their patients. I secretly hand a note to the receptionist for the doctor to read that addresses concerns/problems. In that way I’m making issues that are important known. You can not do so much.

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.

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.

I got very good at positioning myself just behind my mother so when she gave a wrong answer I could shake my head no.

'I just hate contradicting her in front of others."

Whenever possible, don't. Also, don't bring up the POAs or tell the others to ignore her in front of her. What you've read is correct. It is BEST to try not to contradict, correct or argue. It sometimes becomes like dealing with a 2 yo. Can you win an argument with a toddler? Not really. Often with dementia, they are not really lying, they ARE living in a different reality, which includes living life years ago, before they had any ailments! In their own minds, they are fine, they are maybe 10, 20 years or more younger, all is good!

Since you are POA, you must have the contact info for the doctor(s), the nurse, the aide, PT, whoever. If you can't have a private word with them out of your mother's hearing, do it some other time. In the driveway, hand them a note in a sealed envelope, mail to the doctor or post in the portal ANYTHING that contradicts what she might tell him.

For those calls made to let your mother know they are on the way, tell each one if they make the call and mom says not to come, just go. They shouldn't say anything else to mom and you shouldn't lord it over her when she is present. My mother loved to cancel appts - I'd be on my way to pick her up and call to say "Get ready!" so she'd be ready to go when I get there. Hour and 1/2 each way just to get to her and she would say she cancelled it! I call doc office, nope. It was marked on her calendar, but she didn't follow through. In your case, they are calling first, but they can just say OK in response, but go anyway. It's not like she's going to be out, right? She doesn't drive. They should just be told to acknowledge it and go anyway unless you direct otherwise.

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!

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."

It sounds as tho your Mom has dementia that is severe enough that she cannot remember the correct answer, and she is making it up as she goes. This is called normal for this problem. And because she is alone the caregivers are assuming she is in good enough mental capacities to make her own decisions and to answer honestly. Yes, as long as she is living alone, they will honor her requests of when to come and when not to, and will take for granted that what she tells them is the truth. They are not diagnostitions. You are her POA. You are doing, in the doctor's office, exactly what you are there to do. When she forgets about the edema be gentle in inserting, for the doctor "Mom is forgetting about the troublesome edema of late, doctor" or "Mom, we should tell doctor about the pressure sore you have", and etc.
I think overall that you are coming to understand that your Mom likely needs to be in more care where records are kept and she is more carefully watched over and reported on. As POA that falls under your responsibility when it is needed. I wish you good luck in making plans for her moving forward, but basically, all you are dealing with is absolutely normal. Mom's mind is failing. Her "history" won't match what you know to be the case.
Wishing you the best.
One more thing: you say "that's not her call anymore". I am assuming then that your mother does have a written diagnosis of incompetency in her own care? Because until that happens everything is indeed "her call". She can in fact remove your POA in a second, and your POA doesn't override anything she says until she is incompetent in her own care.

First, they should not be telling her that you have POA and they listen to you and she can dobanything. Seems Mom is still "with it" to some extent. There has to be a different way they approach the situation when she tells them not to come. Have them say "your doctor has requested us to come and see you so we will be out of your hair after we do what he has requested" Yes, a little white lie, but u did need him to write an order for "in home" care and that usually stipulates what services are needed. I would ask that they not make you the bad guy. As the Caregiver Mom probably already looks at u as the enemy sirt of. Stand out of Moms eyesight and when she lies, give them a look or shake your head no. Mom is not the first client they have dealt with who has a Dementia.

Doctor is easier. You write a short list of what she does or doesn't do. Hand it to the receptionist and ask that the doctor read it before he sees Mom. This way he knows what questions to ask her. Moms doctor had a chair right next to the change table. When he'd ask her something, his eyes would revert to me and I'd shake my head slightly yes or no.

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