Going insane. Any advice?

I was a homecare caregiver for almost 25 years. I now operate my own homecare business.
I will tell you what I have told every family member in a situations like yours.

The demented "loved one" can no longer be left in charge. Stop obeying their orders.

Bring in outside hired homecare. Your mother will fight you on it. Do it anyway. It's not about she wants anymore. Now it's about what she needs. Wanting and needing are often two very different things.

You say she starts screaming if you've gone to the bathroom if she's left alone for a second.
You're allowing a 'shadowing' habit to form. Don't do that. Ignore her when she starts acting up about you being gone, completely ignore her. DO NOT allow a shadowing habit to form. Let her scream and cry about you being in the other room. Just don't go running in when she orders you to. When the homecare aides you WILL hire start coming, you leave the house during their shifts. Ignore all of her complaints. When she starts up, you tell her plainly that the things she's saying are not true and that you will not listen to her nonsense. Then walk away.
As for the constant repeating. That's called a dementia loop. This is how you deal with and break a dementia loop. You answer a question a couple of times. You respond to a statement or give an explanation a couple of times. Then you totally ignore the topic of the dementia loop. Not your mother.
It's maddening, but this is the only way that really works. Maybe distraction to something else might work. Try it but don't be surprised when it doesn't.
I remember a client I had years ago. I did a five-hour shift weekdays. Every second of the day when she wasn't actually eating something, it was 'I'm hungry' over and over. I'd tell her twice that she ate five minutes ago. Then I simply ignored it. I didn't feed her more. I didn't tell her ten thousand times that she'd already eaten. Usually after an hour or two of repeating it would stop.
For you, it's time to look at memory care facilities for your mother. Homecare aides are temporary respite for you.
Or when her delusions and paranoia start up, call an ambulance and have her taken to the ER. Follow with your POA documentation. Ask for a 'Social Admit' because you unable and unwilling to be her caregiver. That you have to go back to work and she will be alone. Beware of social workers making all kinds of promises about there being endless resources and homecare available. There isn't unless your mother is rich. Don't back down on your refusal to take her home. They will then assess her for dementia and will not pass that test. The hospital will keep her admitted until they find a memory care to place her in. This way will speed things up and get her in the system a lot faster than you could on your own.
It's no reflection on you or how much you love and care about your mother. You're living in an impossible situation and your mother should be placed.
As for a mean nasty side of dementia. It's ALL mean and nasty. It's a mean and nasty disease.

Here’s how I got my father to the doctor when he refused to go. I told him that his health insurance required he has an annual physical and some common tests or they would cancel his insurance. I lied further to say all insurance companies do this, even mine, so we will just pop in and see the doctor and he will give you a once over and that will be that and then we will go have lunch. That got him to go. That doctor told him he had Alzheimer’s which really pissed him off. He kept saying the doctor was “young and stupid” and he was fine. So I used that to my advantage and got him to go for the second opinion I needed to get the second diagnosis letter from a different doctor to activate my DPOA by telling him that he could be right and we should find another doctor “who knew what he was doing”. Obviously the second doctor made the same diagnosis. You have to be crafty and creative to get around their moods.

What i did for the evaluation appt was tell my dad the doctor just wants to ask him some questions about a physical condition.
He also doesn't know he has dementia.
For the brain scan, I told him a bone density test.

I am writing solely from my own experience. But our stories are the same. Like you, I’m an only, and dementia turned my mother nasty and demanding. But she sweetly showtimed for her Dr until I suspected he thought I was the one with the problem. Same issue - refused all care, demanded me 24/7, swore she was fine and the rest of the world was gaslighting her.

Eventually my mother wrote a suicide note because I refused to leave my own family to care for her 24/7. I used that to get help. Phoned EMS, showed them the note, police came, off to hospital, I cried that I could not keep her safe so either she had to go or I had to give up my kids. She showtimed her way out of the hospital but I raised hell. Got her in private pay care. Big $$$ but my life has value too. Perhaps I video of your mother’s behaviour would get her admitted for testing.

Those who didn’t believe there was anything wrong with her were shocked when she was finally assessed and she didn’t know her town (of about 20 years), age, grandkids or the year. In fact she took off on the hospital staff several times, making my point for me.

That put me in charge as substitute decision maker. She is now in care, and got a permanent placement last spring. She’s declined such that she doesn’t know me, which, frankly, is a relief, as I’m no longer the target of her rage. I’m just some nice lady who visits.

The moment an opportunity presents itself to call for help, take it! Behavioural, physical... whether you call for an ambulance, police, or take her to the ER for a behavioural change that could be due to a UTI, you must jump on the opportunity to get her condition recognized and outside help. Record events by video or in a diary. Even if she rages. Know this: your feelings are just as valid as hers. There is no reason we caregivers have to spend the rest of our lives in misery trying to appease someone who is impossible to please. All you can do is insure she is safe.

What made you believe that you had to leave your job and do your mother’s caregiving full time? How will you provide for your own future if you try to keep this up? If you’re here to vent that’s fine, what you’re doing is beyond hard. But if you’re ready to change the situation and not do this anymore, let the group here know that and good advice will come your way. Please know your health and future matter too

Peace be with you.
1. Call 911 and have her transported to ER. From there they can provide assessment of her and, provide you with options .

2. Do not let them just send her back home with " follow appointments" that you already know cannot be kept due to her cognitive status.

3. Insist that they assign a Case Manager ( or other appropriate title) to guide you through the next steps.

4. Do not let them send her back home with you as you already know that for both her and your well being, you cannot sustain the 24/7 care.

5. Have placement options offered, and have her in some form of facility placement while you decide.

6. Yes, she will fight it. Do not allow her less than appropriate cognitive status to be a part of the difficult decision(s). She cognitively does not sound appropriate to make safe appropriate decisions.

7. You ARE the POA. Make decisions that will both provide her with safe 24/7 care ( perhaps a memory care unit placement) or other based on the assessment recommendations/ options; and that will allow you to address your own personal physical, emotional needs.

It certainly sounds like it's time.

Call 911 to transport her to ER.

Call on your faith based or other emotional support available to you for your own much needed and deserved support.

Call 911, go to hospital. You/They can then request an evaluation from a nursing home . (Even if you must tell your mother it is short term and this is what the doctor wants to help you). They can send her to the nursing home from the hospital. Do not return home. It can be out of your hands. They can evaluate her at nursing home and do 100 days more or less for rehab and reevaluate.

You have an awful situation. Absolutely no one would deny that.

No one wants to find themselves fighting a battle like you are dealing with. It’s normal to be frustrated and even angry in this situation.

You feel alone being an ‘only’ child. I get that, but I have news for you, there are many caregivers who have multiple siblings and none of the siblings help. So, they are ‘alone’ too.

The real issue is that this is too big of a job for a caregiver at home to deal with on their own. You are in over your head.

She isn’t going to change. You know that. You need professional support. You need physical and emotional rest or you will go insane.

You say that she is threatening to call 911. Let her do it. She needs to be evaluated and receive proper care. You need direction from professional providers on what to do next. Speak with the social worker at the hospital and ask about placement for her. Specifically tell them that you are no longer able to care for your mom at home.

She isn’t ever going to see to reason. So, stop trying to reason with her. Start deciding what is best for her and most certainly what is best for you. It’s clear as day to me that you need a break and possibly don’t want to be her caregiver at all anymore.

You do not have to assume the responsibility of being her caregiver forever. You’re entitled to resume
your life. Oversee her care done by a professional staff and then you can be her son and advocate.

Wishing you all the best.

No, she will never ever want 'outside help.'
This is something you need to take control of and arrange.
Do not leave it up to her to make these decisions because she (mostly likely) doesn't have the cognitive ability / brain cells to do so.

If situation left as is, she'll drive you to the brink ... No sucking it up - you need to take control."

Yes, it is difficult or challenging getting her to an MD.
* See if you can find one who will make housecalls. I know . . . insurance doesn't pay, expensive ...
* Often / sometimes, a fall or something else gets a person into the hospital for medical attention and then dementia is diagnosed.
* Sadly, you may need to 'wait' for this something else to happen before she'll get the MD diagnosis she needs.

As someone said below, if you are able to call 911 and get her to an emergency room, do it yesterday. (I didn't realize this was an option). It is AN EXCELLENT IDEA.

* IN THE INTERIM, get sitters or caregivers
--- as you need to take time off and get regular respites.
* If it will work, tell her you are taking her out for a nice meal / dinner or something she'd want to do - willing to get out with you, get in the car.
- Yes, she'll kick and scream when she realizes where she is going. So what? Expect this and do what you need to do. And, then tell her you PLANN[ED] to take her out for a nice dinner, TOO. (Keep your promise or say something to appease her - do not argue.)
* At ALL costs, you want to maintain your own mental health. If you go off the deep end, she has no one else. Take care of yourself.
- Do not 'listen' to her when she says "I don't want anyone else..." - you do what you need to do for her well being, and yours. Call in the troops.

YOU NEVER EVER want to argue with a person inflicted with dementia. It is more than a NO WIN strategy. It is emotionally and psychologically draining for all concerned. Do REFLECTIVE LISTENING, i.e.,
- acknowledge her words (I hear you saying xxx)
- Stop
= no argument
+ she feels heard (most likely or possibly she'll feel you are listening) so she is acknowledged.
= You then do what is necessary. Period. Take care. Get people in there.

Gena / Touch Matters

@elvisman67

When the ranting, raving, paranoia, and accusations start up call an ambulance.
Don't tell her you're calling one, just go ahead and do it. Show the paramedics your POA documentation and tell them that you want her to get checked out at the hospital. This is your chance to get some things done.
Please call 911 next time.