Are there consequences to having an official dementia diagnosis?

Your mother is 89. I write to you as an 82 year old.
First of all, it is your intention to NEVER place your mother.
And you have told us that you ALSO are never going to be able to insure that she will have 24/7 "care" or "sitter" with her, due to financial concerns. It isn't something you can afford to do.

So we have here a set of fact. Your mom is living with you currently and that's what you want to continue so long as you are able.
Your mom is exhibiting episodes of forgetfulness that are not yet severe. That is to say she isn't wandering, especially outside; she isn't getting lost; she isn't having accidents with cooking flames and etc. Her sort of in and out and her up and down trajectory sounds a bit like Lewy's especially when combined with no smell and taste (typical of Lewy's). But WHATEVER signs she is having they are not yet severe.

I say this as an 82 year old knowing and accepting that we ALL DIE, and for many (most?) we would love to die in our own home. I say this so that you will know if you leave and your mother meets with an accident on the stairs or anywhere else, that's sort of what you risk along with not finding her right away.

So to me, given what SHE WANTS and what YOU WANT there is no reason NOW to jump any guns as to diagnosis that I can see. Whatever this is it is unlikely to have a cure. But:
1. Stop the argument. She is forgetful. YOU know that; SHE doesn't and will never agree to it and it is cruel to keep reminding her hoping she will admit it; she won't; she isn't aware and doesn't believe you and never will. So drop it. As we say to dogs with their favorite bone.
2. Test the urine with a dipstick for nitrites and leukocytes just in case there's indication for infection; if so follow up with her doc.
3. Make things as safe as you are able. I would consider a camera system now that you can monitor with your phone and would PAY to have it installed.
4. Get a care contract and POA in place while she can do it. Tell her for her protection so someone doesn't WHIP HER AWAY FROM YOU. Care contract covers shared living costs for home maintenance, payment, food, transporation and so on. This prevents her gifting you should she need government asst in future, and keeps all records of expenses on the up and up.

Now there are risks here. But to be honest there are risks with in facility care in that it may KILL her quick as easily as staying home somewhat diagnosed.

You know the skivvy. You did some of this work. I trust you to make decisions in her behalf just so long as you are willing and as you will NOT, in the event of an accident, blame yourself.

Good luck to you. Many of these things come down to individual decisions made by individuals, and I wish you both the best.

"First, does she need to agree to the testing?"

No, but you may need to employ a "therapeutic fib in order to get her in for the testing. I've done this twice. If you pass a note discretely to her nurse or doc or the check-in person, they will accommodate you, but you will need to stay in the room during the entire exam, sitting behind your Mom so she can't see you silently communicating with the doc. At this appointment ask for the HIPAA Medical Representative form and write in your name and have your Mom sign it. This gives her medical team permission to legally disclose your Mom's private information to you. You should also bring in your Medical PoA paperwork, her Advance Healthcare Direct, POLST, etc. to have on file. This has to happen at every single doctor or specialist she sees.

"Second, if there is an official diagnosis of dementia, does that mean that she can never again (legally) be unattended in her home?"

No, but you should not be leaving a demented elder alone. It will only take 1 time of trying to cook and setting the pan (or herself) on fire, or falling down the stairs, or wandering out the door for it to be her last. You wouldn't want her to set your kitchen on fire, overflow your toilets, stick forks in the electrical outlets, or do things (like a toddler) that your logical and normal brain can't even conceive of, right? All examples I just gave are things that have been mentioned by caregivers on this forum. And more.

"If she were to hurt herself while I was away, would I be liable in some way?"

Who would bring charges against you? If you met the definition of neglect/abuse if subjected to a APS review, then maybe. But someone has to first accuse you if it's not your Mom herself. And it may be if she has access to a phone. My Aunt opened the car door and yelled "help!" while I was inside the bank. Cops came to talk to me.

Please read AlvaDeer's response to you. Your Mom's care needs and oversight will only increase. Then read the copious posts on this forum under the topic Caregiver Burnout. This is what often and likely happens when loving and well-meaning but uninitiated adult children attempt to provide all the care themselves. I get that finances are a concern but then you should consider a different solution: you resign your PoA and allow her to become a ward of a court-appointed guardian. Then the county/state will cover all her care costs and make all decisions and you can the visit her to your heart's content while you keep your full-time job and earn money for your own old-age care. There really isn't any other financial solution unless your Mom has sufficient assets to pay you and contribute to rent, utlities, etc.

"...there is no such thing as a good long term care facility..."

My MIL (who just passed away yesterday morning) was in LTC for 7 years on Medicaid in an excellent facility. It was 3 miles from our house. Run by a regional faith-based organization. Very affordable. So please look beyond only the places you've worked.

The guiding principle is that the caregiving solution needs to accommodate the caregiver. If it doesn't, then burnout is guaranteed to happen. I wish you much wisdom as you figure out solutions that work for both of you.

Your mother can indeed be removed from her home by APS if a neighbor or someone else files a report with them that she's outside wandering, or alone in the home causing mischief with dementia, or screaming, etc. She doesn't need to be formally diagnosed with dementia, either, to be considered demented. Leaving her alone all day because she prefers that is negligent. Mom needs to be safe, fed, warm in winter and cool in summer, toileted properly etc. An elder with dementia can get into too much trouble alone at home, and set the house on fire! We've seen it before on Agingcare. All because you feel there's no such thing as good long term care facilities which is not true at all. You'd rather her be alone and unsafe than placed, is what you're saying. APS can certainly consider you negligent in your care if you're reported by anyone! Don't think neighbors, friends and family members mind their own business because they don't.

I suggest you rethink this plan and speak to an elder care attorney about your responsibilities as a POA for your mother. That's my advice.

Good luck to you.

She is a danger to herself and to others if she continues to live alone. Her condition will only get worse over time. If you do not want to put her in LTC and she cannot afford 24/7 care, you then need to quit your job and take care of her. You are kicking the can down the road by rationalizing that she can be left alone and she will be fine. Your mother is an accident waiting to happen.

Your responsibility to your mother is to. make sure she is safe and cared for. You wouldn't let a toddler live alone, same goes for elders with dementia.

How very strange that you *know* that there is no such thing as a good long-term care facility! How many have you been in? Five? Twelve? Fifty? And they were all places where you would never "put" your mother?

In 2024, according to The Checkup by SingleCare, in an article written by Lindsay Modglin, "There are 65,000 regulated long-term care facilities in the U.S." You're telling us that (assuming that you've been inside perhaps 50 such places) none of the remaining 64,500 long-term care facilities are fit to take care of your mother. Baloney!

I found three suitable memory care units in our community for my husband this fall. He now resides in one. I visit almost every day and was there this morning. His room is bright and cheerful, and so are the aides. The food is appetizing and good. For meals and at other times, he sits with three other men, all in severe cognitive decline. They smile, they fidget with their dementia toys, they look at magazines and watch for the two dogs who often visit the unit. Husband is kept clean, visits the onsite hairdresser for a trim, does PT and OT there, is taken outside frequently to see the plants, animals, and birds. The wives of the other guys in his group are frequent visitors, and the visits can get quite lively. It's not ideal, but all of us agree that it's the best it can be for all of them. None of us was capable of caring for them at home anymore. We did our best, but professionals do it better.

Your mother cannot be left alone in the house now. Would she know what to do in case of fire on a day when she's "wacky?" Could she escape the fire in your house, considering her limited mobility? What if she invited a stranger in, as my husband did, not knowing who the man was? Or turns on water in the bathtub and leaves it running? Or flushes things down the toilet, like her toothbrush and a tangerine? Or panics when she sees her own waste in the toilet and starts pulling it out? All these things happened in my house. They are not unusual with dementia.

Since you've already decided mom can't go to a facility and can't afford home care, you've already decided that it's all up to you. By the time it's all over, you will have learned quite a lot. I wish you the best of luck.

Can she afford full time adult day care while you work?

A proper diagnosis will lead to proper medications.

Your actual questions are “Is it legal for me to leave her unattended if she has been officially diagnosed with dementia? If she were to hurt herself while I was away, would I be liable in some way?” Yes, it’s likely to be ‘legal’. Document that it’s what M wants, including to take the risks involved. Look up ‘the right to rot’.

Your view that there is “no such thing as a good long term care facility” seems to be that they can’t be “home”. That’s not normally a definition of “good”. Is “home alone” better than the best facility you can find? And is your concern really about your own potential liability?