My daughter is experiencing severe sundowners and her sleep habits have changed greatly, she is up and down until she is exhausted

Unless you have loads of money, you will need to apply for Medicaid to get your daughter placed. You need to see if Medicaid in your State pays for Memory Care. If not, then she will need to be placed in skilled nursing. Remember, you are not responsible for her care. Medicaid will look at her income.

Just curious, have you ever got an explanation why your children had/have early onset Dementias? No need to respond if you don't want to.

I don't know how you can cope with this. She may be better served on Medicaid in a memory care facility. Not because you are not doing a great job but, because she needs a village to care for her.

Great big warm hug! It is difficult to lose a child, adult or otherwise, death or dementia.

Remember that you matter as well and she needs you to be her advocate and have her in a safe place in the event you can no longer be there for her. This doesn't mean you are giving up or don't care, in fact it is the opposite, you care enough to see her safe and settled while you are able to ensure that.

Are you able to "ask" her to help you with tasks during the day, like folding a whole bunch of towels, or sort & pair socks, etc? This not only gives LOs a sense of purpose it also burns mental and physical energy so she may sleep better at night. We do this with my 99-yr old aunt with mod/adv dementia and we were able to take her off Tylenol PM, which also solved her constipation problem. I think you should try this even if she gets prescription sleep medication.

My heart breaks for you. You have had a lot on your plate.
I have to agree that you should be looking to place your daughter in Memory Care . It sounds like it is getting to the point where it is not safe for YOU to care for her much longer.
You remove ALL her other underwear and replace it with disposable incontinence briefs.
You start carrying a backpack with extra briefs, gloves, ointment and an extra change of clothes. (very much like you did when she was a baby)
There is no reason for you to be embarrassed for her. I am sure you are embarrassed by the fact that she is incontinent. But she, herself is probably not embarrassed as she probably does not realize what has happened.

If this is a sudden change you might want to have her checked for a UTI.

There are medications that will help with the Sun downing, agitation and anxiety.

Just like most herbal products CBD does not work on everyone (personally I feel no effect and it seems to be a waste of money for me)
There are herbal teas that might work, melatonin sometimes works.

Hi Jean, and welcome to the forum. I read your profile & am sorry you are going through such a difficult thing with Joee. Have you spoken to her doctor about possible medication for her agitation and sleeplessness/sundowing? Some people find great relief with Seroquel or one of the other dementia meds. If that doesn't work, you may have to place her in Memory Care before your original plan of after the Christmas holidays, since FTD dementia is very difficult to deal with and you have health issues of your own to worry about.

One other thought is this: have you replaced all of her regular underwear with pull-up Depends briefs so she has nothing else to wear BUT those? That's always a good idea for people who refuse or struggle with the concept of wearing incontinence briefs.

Here is a link to an article about sleep issues with Sundowning & how to cope and what to try to reduce the issues:

https://www.alz.org/help-support/caregiving/stages-behaviors/sleep-issues-sundowning

Wishing you the best of luck with a very difficult situation. Please keep your own health and care a priority here as well, which is just as important as Joee's.