Out go the lights!

I have child locks on the handles of my stove. Get some ASAP. Try to keep her very busy during the day, limit naps, don't let her go to bed too early. Someone mentioned folding towels, etc. Not things you actually need done, just busy work to tire her mind and body out. If she's still mobile, get her out in the fresh air for a short walk. Or some simple exercises in the house. I had a chair exercise DVD for my mom.

Try not to argue with her though of course the situation is maddening! But take a breath and decide what really matters. At this point it is mostly about her safety. So as others said, don't fuss about her PJs. Whatever. Change her to a new outfit in the morning, that might be less triggering and less stressful.

Try to get her exposed to lots of light in the morning, especially sunlight when possible to help her circadian rhythm. Then dim the lights later in the evening to signal night time. Small things, but might help at least a little.

I would DEFINITELY talk to doc about appropriate meds for bedtime. That will buy you some time for trying to keep mom home longer.

You could really use some help. Using mom's money, have some kind of help to give you some relief. This caregiving for dementia patients is NOT easy, as way too many of us know first hand. Even if you got a few hours a week to get out of the house alone, that would be a start for your self care.

At some point, you may have to place her. For now, maybe a few minor changes will give you a little peace.

Best of luck.

Hire a caregiver for nighttime.
what a blessing!!

there are a few agencies…

a friend hired one for her DH. He got A COVID STROKE.

he his physically ok(?) but had aphasia..

so she asked the agency to find a younger fit man to play pickle ball and tire him out physically so she csn work on brain games with him on computer..

what a concept.

snother friend hired a caregiver a couple nights a week to Shadow her mom, just so everyone was on board to get a goodnight sleep.
yes, I’m aware of the expense.. mentally, physically, and financially, in all aspects of these situations..
this is the time to consider a caregiver… mom Will most likely behave differently with one.. you go to your corner of house and let caregiver do what is expected..
It was
well worth it for the few days..
. Had I had known about these caregivers s when my brother was left wondering the streets in dementia… you better believe I would’ve hired someone..money well spent.

so look up an agency. 7pm to 7 am.. a couple nights a week.. you get rest … and caregiver gets to make sure mom is safe.

DH was on hospice… I had no choice.. 48 hours or more of no sleep.. I became a target for hospice…. They were wonderful..

talk to you insurance company sbd hospice… to evaluate your mom.

a couple of nights with good sleep is a life saver.

I have anxiety and honestly, it's literally PAINFUL to feel it!!! W/O judicious use of medication, I would have chosen a path out of this world years ago.

I know how scary that sounds, but the truth it, anxiety hurts--my heart races, my chest hurts, I can't think or be calm on my own.

When I finally was properly dxed with anxiety/depression and put on the right combo of meds, my life became my own again.

It wasn't 'giving up' it was making myself MYSELF again.

My MIL is in Hospice and the worst thing she has going on is unbelievable anxiety. She's on 3 meds for it. when she misses a dose or thinks she going to get better--she spins out of control and it's awful.

Please don't just discount them as being a failure on your part. Our brains are chemically driven and we have the blessing nowadays of many options to help with the stresses of life-at whatever place we are in life.

When I'm having panic attacks, I am 100% useless to anyone, myself being the first.

Hi Ckamelian, I'm sorry that was rough night - but, forgive me, it was a fun rant to read. My MIL was a trip with her vascular dementia. She liked to light candles, I'm not sure how she didn't burn her house down. We found a couple of things that had caught fire. She constantly put a metal can in her micowave. She kept insisting she was sanitizing the can. When I had just arrived and found myself with a 5'11" woman who was like a mischievous toddler with all the skills and abilities of an adult - I was in a spin myself. I remember being on the phone with my SIL trying to pick up the Valium pills that were everywhere and blocking MIL one more time from the microwave and my SIL saying "UNPLUG the microwave". I guess I was too close to it to see the obvious.

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.

HOME CARE DOESN'T WORK

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

A couple of easy quick things to try, while you wait for a better solution:

1) Put a hook and eye catch at the outside top of her bedroom door. Easy to install, and it often doesn't get spotted.
2) The kitchen is usually the most dangerous room. Fit a door to it if at all possible, and lock it at night. The hook and eye may work there too.

Look , I meant I won't do the over the counter meds , to make her sleep. That I'm going to talk to her doctor about the medications she takes now ,please stop insinuating I said something I did not say , you misunderstood..

So I'm going to start there . Change my expectations , and talk to her doctor.
Thanks everyone .

So for the most part ,everyone seems to be in agreement to "place" mom . But this is why I take care of her ,so we don't have to . I think it will not get better,I know it will get worse but if there are other strategies I have not come up with , i have to try .
Yes my patience wears thin at times ,who's doesn't? I'm not a saint and I won't be a martyer but I don't feel like I've tried everything yet.
No it really doesn't matter if she wears her PJs to bed or not I guess. This is one of the things I know about myself and need to work on , I have expectations of how things should be and they are no longer realistic because of my mothers illness . And I am stubborn too..
I won't do the medication thing, I will speak to her doctor . Maybe we do need to change it somehow.

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.

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?

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.

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.

Would she take sleeping meds if you told here they were some other type of "vitamin"? Tylenol PM has worked for us in the past.

Please please educate yourself about dementia and what it does to people. I totally get every frustration you mentioned in your post (been there, done that especially the night-time routine) but there are techniques and strategies to deal with demented people: please watch some Teepa Snow videos on YouTube to help yourself. For example, when my Aunt would go on a tear or resist I would calmly and gently poke her in the chest until she looked down. This would create a break in what she was just doing and then I had an opportunity to redirect the conversation or activity. It wasn't perfect but often worked. And, everyone is different so what works for one person may not work for another. But you should try something new every day until you figure out what will work to get her dressed for bed. If she has to sleep in her day clothes, so be it -- it's not the end of the world and you need to pick your battles. Even if she falls asleep in the chair or couch.

Hands-on caregiving is all about problem solving. Dementia is progressive so what works one week may not work the next and you need to be mentally prepared for this. If not, then you need to contact social services to figure out what it would take for them to acquire guardianship and have her transitioned into a facility. I'm so sorry, there's just no good solutions, only "least bad" options.

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

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!

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.

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))

That's just normal behavior with dementia where they wander all night like that. Have you considered medication for her? Many stoves have removable knobs so you might want to consider taking the knobs off full time and just putting them back on when you cook.