Out go the lights!

My mother had dementia and behaved as your mother .
The geriatrician told me when it got to that level , my mother could not be taken care of by family anymore because Mom resented being told what to do by her “ child “. Your mother sees you as a child again not an adult .

The geriatrician told me this is not uncommon and it will not get better . The doc said Mom had to be placed with 24/7 care with staff ( who were not family ) .

It is stressful for both you and your mother. Your mother needs to be in memory care and you need sleep.

I hope your mother has funds for memory care . Sometimes the promise to keep them home must be broken . You could not have anticipated her behavior .

((Hugs))

How much longer are you going to put up with this nonsense? You know it's only going to get worse, and from your obvious lack of patience, it will be you who is going to have to be hospitalized if it doesn't kill you first.
It's time to throw in the towel and say enough is enough, and get your mom placed in memory care ASAP before one of you gets hurt.
I just don't understand why you haven't had her placed already. Please don't be a martyr for the sake of your mom. If she were in her right mind, she would NEVER want you to do that.

Personally, I believe that when a person has dementia - it's a lot like taking care of multiple people - the person they were, the person with dementia, and the child they become. You literally never know which person you are going to get at any one moment. You have to be on your toes at all times. You cannot be alert and ready for anything if you are sleep deprived and you alone cannot be on duty 24/7.

So here is the issue with trying to do home care - at least alone. YOU are one person. The reason that memory care is so often recommended at this stage is because your loved one needs more care than ONE person can possibly give them. That is NOT a judgement. It is just a fact.

A typical person with dementia may sleep sporadically, fitfully. They may be up all hours of the day or night. They may experience Sundowners and Shadowing. They may experience fits of violence. Or of not remembering what typical household appliances do or if they remember they forget they used them (the stove is a great example). Through no fault of their own they need 24/7 care. That is different from having someone IN the house 24/7. That really means someone awake and available to CARE for them 24/7.

You are looking for solutions. I understand that. If you are REALLY looking for solutions you have to keep an open mind. Because DEMENTIA is going to change the way you approach everything. It's like when you have a child. Before we have children - many people often have some rock solid ideas of how they will parent "I will NEVER. I will ALWAYS". But once they become parents, they realize how difficult it is to really "never" or "always" do anything.

I understand that you intend to keep her home and provide all of her care on your own. And that is admirable. But you are going to burn yourself out fast. While SHE may operate on sporadic sleep - YOU need to sleep regularly. YOU cannot function for a long span of time without regular sleep.

If you flat out refuse to consider memory care - you should at bare minimum consider possibly a day time companion so that you can "leave" and go get some sleep somewhere else in the house. Time to rest, get your errands done, etc. You cannot possibly keep up this pace indefinitely.

Additionally, you need to come to terms with the fact that there is NO shame in finding a memory care facility for her if it comes to that. You are ONE person.


If you are going to keep her at home- as hard as it is to consider - there ARE medications that you will have to administer that may not sit well with you as things progress that they would administer in a memory care facility if needed. For example- for sleep or agitation - as a matter of course - to make the resident more comfortable they will give sleep medications or medications to sedate them so that they don't harm themselves, the staff or other residents. At some point, there may come a time when you may have to administer those types of medications if you keep her home - because she may harm herself or you otherwise.

Beyond that - my best advice is to talk to her doctor and get their thoughts. She can sleep whenever. You have got to get some sleep in order to think clearly.

Quite normal behavior for a person with dementia.

What is the reason that you have not placed her? Do you live with her or does she live with you?

She needs 24/7 facility care, this will get worse, much worse.

Take Care!

I agree with everyone. Mom needs to be in a facility now.

This is part of the illness.
And even without dementia, our sleep patterns vary.
Can you imagine someone dictating to YOU your OWN sleeping time and patterns?

I think all of this is telling you that the time is coming when the frustration of all this caregiving belongs in a place where people are hired on for a shift and there to handle all of this.
When the frustration rises to this level and becomes ever more frequent it is not only bad for your own sleep pattern, it is dangerous for your psyche.

I think you are dealing with more than you can handle now. Start to keep a diary. Reread it at the end of a few months and be honest in your own mind as to how much longer you can go on with 24/7 caregiving, because it is just that. It's 24/7. There is no time off for your own sleep.

The challenges of caregiving keep building, don’t they. The behavior you describe may be “normal” for someone with dementia, but it’s nothing the caregiver has seen before. I can certainly relate to your post. My wife had no sleeping pattern. If she was up at 2 AM, I had to be up at 2 AM. After a while, I felt like I was in a state of constant fog for lack of sleep. Sleep aids are a definite no-no. All OTC sleep aids contain a class of drugs called anti-cholinergics. Diphenhydramine is the most common. Some studies have shown that long term use of these drugs was linked to dementia, and if taken by those already with dementia, could aggravate the dementia symptoms. Some of these OTC medicines are Unisom, Sominex, any drug with PM, like Advil PM, and others.

Safety is a priority. If you can’t ensure your mom’s safety, including your own, it may be time to start looking for a “new home” for her. My wife once turned on all the stove burners ignoring a plastic container sitting on one burner. Luckily, I caught it in time. But that’s how fast things can turn ugly. It’s impossible to watch your mom 24/7.

Your lock on the door may prevent your mom from leaving, so far, but it didn’t deter my wife… at 73 y/o she went out the window!

So considering all the challenges to deal with, notwithstanding the delusions, hallucinations, agitation, and whatever, it may be time to investigate MC facilities.

You should discuss with her care provider to see if meds can be initiated/adjusted.
Consider placing her and getting your life back. You are not a 24/7 care facility. Would it not be easier to have her somewhere she can be watched 24/7? Then you could go back to work as well--even if she's stage 5 or 6 she could go on for a while and that's prime time for you to be earning so you have better social security income when you retire.

Also--why fight this exhausting fight each night? Does she have to be in her PJ's? What happens if you just tell her 'ok' when she says she's tired and you put out her things and go to bed, rather than having a tussle with her? Not trying to be a smartass here, just have given up some similar fights because in the long run they were about what I thought needed done. At this point I just aim for getting Mom in dry briefs and don't care what she wears to bed. She wears PJ's all day now too, but really, who cares?

HOME CARE DOESN'T WORK

Get her into a facility and then get a good nights sleep.

Yes, time for a facility now. You can't go on like this. If you have been caring for her in her home for at least two years, Medicaid may allow you to stay under the Caregiver Allowance and if you can pay the bills on the home.

I understand were you are, prompt so you can keep her moving. I have no patience, got that from Mom.