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She gives my husband and I a hard time. Starts in the early afternoon with sundown and will argue with you and try to get out of the house.  So we deal with that on a daily basis, burnt out. At night she will keep getting out of bed and walking around with her walker, stubborn, and will not listen to you all while carrying her small purse like she is leaving. A continuation day and night. Need some advice!

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It may be time to get mom out of your home now and placed in Memory Care Assisted Living or Skilled Nursing care with Medicaid. Dementia often reaches a point where wandering in the wee hours is dangerous, impedes your quality of life, and everyone suffers as a result. There is no medicine to stop this behavior from worsening or stopping, aside from a calming med like Ativan which is minimal for Sundowning.

I suggest you read this 33 page booklet online about managing dementia and what to expect with an elder who's been diagnosed with it. Lots of Do's and Don't tips for dealing with dementia sufferers are suggested in the booklet.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 

https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.

The full copy of her book is available here:

https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

Teepa Snow also has videos on YouTube you can watch for tips on how to deal with demented elders.

Best of luck to you.
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Help finding care at reasonable rate for a few hrs times days and hours need to be worked out
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lealonnie1 Jun 2023
How will that help with nighttime wandering?
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Unfortunately it sounds like it's time to place your mom in a memory care facility, where she will be kept safe, and you won't have to worry about her wandering out of the house and you and your husband will be able to get some much needed sleep.
And most importantly you can get back to just being her daughter and advocate and not her caregiver.
I wish you the very best in finding the right facility for her.
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Memory Care is a wonderful thing. They know how to handle this and there's someone on duty 24/7 to make sure mom is safe.

You're experiencing caregiver burnout, and the only cure is getting mom out of the house. Yes, you might take advice about setting alarms on the doors or someone to watch over her at night and so on. But you're still not sleeping when alarms are going off at all hours, and someone to watch over her while you're sleeping is not a likely solution. Mom can argue with her aide and keep you up all night with that.

My SIL who has dementia was even put in a separate bed-and-bath building on their property with her aide, and it didn't work. Too much anger at her aide, and very agitated about being there. She's been in memory care for about 8 months, and she's happy and smiling, socializing, and eating dinner with family that comes to visit her in the facility. So much better!

I hope you find a good place for your mom so you can all have some peace.
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Careful balancing of medications and commitment to few naps during the day helped my father. When I became my father’s caregiver after my mother’s death, I found that he had a terrible sleep schedule. He had been allowed to follow whatever schedule he wanted and his body was used to that schedule (for example, he would wake at 3am, watch tv and eat cookies until 7am, then would go back to bed and sleep until 11 am). It took a while but I finally got him on a schedule of approximately 9pm until 6 am with a little nap in the afternoon. It took months for this adjustment.

What helped with the adjustment was changing his medications. I worked with his doctor (you have to let them know what is going on) and tried different medications and dosages until we got it worked out (or now because we all know what works today may not work next week……). What works for us at this point is seroquel and melatonin about 45 minutes before bedtime. As far as the sundowning, low dose Xanax has worked wonders, but you have to be prepared to administer it at the first minor clue that it is about to occur. I’m with my father about 120 hours a week so I learned to identify the signs, even if they are slight. For example, one of the clues that he is about to go into sundowning is him straightening his pants legs at his shoes so the crease is exactly aligned over his shoe. I have, so far, avoided putting him on a regular Xanax schedule and only administer it as needed. I have faced some criticism over the Xanax, but he is given the lowest dosage available which only calms him and does not make him “loopy.” I think that is someone had a headache, I would not withhold aspirin/Tylenol…. If someone had heartburn, I would not withhold an antacid…… if someone had constipation, I would not withhold Exlax …… so why would I not give him something to ease his agitation.

I hope that it works out. I know memory care facilities are wonderful for some people but for others caring for their loved one in their home is best. That is what is best for me and my father, for now.
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NeedHelpWithMom Jun 2023
You’re right about trying medication to help a parent get the rest that they need. The only thing that stopped my mother’s wandering was Seroquel and Ativan.
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To me, it is time for Memory Care, you cannot continue to lose sleep every night, it will affect your physical & mental health.

My step-mother is in memory care, she carries her purse everywhere, nothing in it except used napkins & tissues and junk she picks up from the floor. She is where she needs to be, in a nice home with 24/7 care.
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How long do you and your husband plan to live without sleep?

If you want to sleep peacefully, you will need to change something about the dynamic in your household.

Your mother is not being “stubborn”. She is demonstrating behaviors that result from the deterioration of her ability to think rationally, and remember and reason. These behaviors will not improve.

For YOUR peace of mind, have you taken a look yet at local sources of residential care? You may find that if you decide to make a trial of residential care, she is able to develop better sleep habits.

Sleep meds are a consideration, but ALL of them come with their own sets of compromises. My own mother had brutal anxiety attacks after she became unable to speak, and when given the smallest dose of Xanax, she’d sleep for overly long periods of time, once, 36 hours. There was no dose available smaller (20 years ago).

When you have tried everything, remind yourself that some situations in geriatric care have NO SOLUTIONS that are “good” for everyone, and make your choices based on what is safest for ALL concerned.
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Daughterof1930 Jun 2023
“Your mother is not being “stubborn”. She is demonstrating behaviors that result from the deterioration of her ability to think rationally, and remember and reason. These behaviors will not improve.” Wise words from Ann. This is definitely not stubbornness. Consider carefully your need for restful sleep and how long you can stay healthy to provide care without being that need met. Start with consulting mom’s doctor for advice on whether there are meds to help the situation, then consider more help either in home or outside to get you the sleep you need to continue as the not burned out caregiver mom needs
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Been there. It’s time to place her. It’s harder on you than her. Be prepared, it takes weeks for them to adjust. And they may still have horrible sleep habits. My dad sleeps all day and up all night every other week. I’m learning to call ahead to see if he’s awake for a visit. Worst disease ever. Prayers for you.
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Perhaps try speaking with her Physician first to see your options. I always see posts on here to ship them off to AL or Memory care and get them out of the house. I understand this is frustrating and you're tired and yes you need some help but try discussing this with a doctor first regarding maybe her medications. To me AL is the last choice. But that's just my opinion. Best wishes....
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MJ1929 Jun 2023
To refer to it as "shipping" someone off to AL or Memory Care is offensive.

Does it not occur to you that these people who post here want what's best for their loved ones and that moving them to a facility IS a difficult decision?

Shame on you.
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Play Teepa Snow on YouTube on Sundowning.
https://youtu.be/XQ-dr9JDR_0
I also recommend a medication review with her neurologist.
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My mom does the same thing, but she is in Memory Care. She roams, goes in other peoples' rooms, and tries to escape - over and over and over again - and gets angry when they redirect her. She was having a particularly bad (violent) night last night, so I went to try to help calm her down or distract her. It was the first time I've been on the unit in the night hours, and there were so many dementia patients up and walking about that it was like daytime! Seeing all this in action gave me a new respect for memory care workers - they directed traffic like pros! Meanwhile, I finally got home about 2:30 this morning and had to be at work at 8 am, and boy am I tired! I can only imagine how you must be feeling having the weight of her daytime care and nighttime recreation on your shoulders!

Every time I visit her in MC, I'm convinced more and more that MC is the best solution for her. In a good facility, they have people who understand and care for dementia sufferers and have such a talent for persuading them to do what they need to do. And by placing your mother in MC, you can enjoy your time with her instead of being run down, burned out, and frustrated with and because of her.
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sp19690 Jun 2023
Sounds like memory care is a lot like the walking dead.
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She needs to be in memory care. There are many kinds of memory care and all sorts of different settings. Have you shopped around for a good place? If not, do it now.

Some will tell you to explore every other option first. But why? When I think of a person wandering around all night, a lost soul, I believe that she should be where she can get the best professional help for her condition. If medication is recommended by her doctor, fine. But be aware that meds have their own serious effects on dementia patients, not all of them good.
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BurntCaregiver Jun 2023
@Fawnby

I agree and for me safety is the top priority.
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Frankly, sleep was a tipping point for us. Husband’s job requires great focus, plus our kids were in school. My mother would pound on bedroom doors and yell for me on and off all night. House has stairs, land is rural and rugged, and meds increased her risk of falls. She took off on the hospital. Once in care, she tried to escape the locked unit. Now she’s gone the other extreme and needs the familiarity of her room.
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mgmbaker Jun 2023
Oh yes! This is what I have found with my mom! When she was in assisted living, she had a much larger room. It felt much more like a small apartment without a kitchen, which suited her just fine because she never learned to cook anyway. When I moved her to Memory Care, we were under the gun (I was told she couldn't return after she punched a nurse in the face) to get her moved, so the MC I had already been looking at had to be the one, at least for the moment. The ONLY drawback to it was the tiny room, but they assured me she could take a larger unit when it came available. I put the best face on it that I could for her and she moved right in (unhappily for many other reasons, but the small room was never one of them). As it has turned out, the small space has solved a number of problems, most specifically her losing everything all the time - there was simply nowhere to misplace things and if she did, it was easy for me to find them. I realized after a few months that behaviorally she had settled down a lot too. That room was like a coccoon for her - tight and cozy and secure. She still sundowns, and she still has some pretty nutty behaviors, but at the end of the very long Alzheimer's day, she's happiest in her little room.
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I would advise you to put a lock on the outside of her bedroom door for her own safety so she cannot get out and wander. Also, have her doctor prescribe sleeping medication. Don't even tell her she's taking it. Put it into a snack before bedtime.

When she gets argumentative, completely ignore her. Do not engage. Lock the doors so she cannot get out. Her doctor can prescribe an anti-anxiety medication that can help with the sundowning. If she gets to be too much for you and your husband to handle, it may be time for memory care.
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southernwave Jun 2023
My personal opinion is once you want to put a lock on the outside of their bedroom door, it’s time for memory care.
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Please tell me that you will immediately confer with her PCP about this " sundowning" behavior for her safety as well as your well being and sanity. You do not mention if she has a diagnosed dementia illness but it certainly sounds like it; the PCP should be able to assess her current status or refer you to. Geriatric specialist for further management. It will only get worse so, Get help now ! You may also need to have a case manager ( usually a licensed social worker or occasionally an RN) help you navigate the facility care options for her potential placement into memory care unit or other dementia care facility for her Safety .
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Back when my mother was sundowning every night, I would put up a baby gate at her bedroom door (the door was open) to try and corral her. It kept her from wandering and falling down the stairs, but didn't solve the sundowning problem, because even though she couldn't figure out how to unlatch the baby gate and get out of her bedroom, she would just stand there and yell that she was being treated like "the dog". After coming close to having a nervous breakdown, I made some changes. I took her off of Mira Lax and started giving her Milk of Magnesia. That was huge. It took about 3 months to completely clear her system, but the sundowning has disappeared. In addition, I began to set the schedule for the day. She does not nap and is up and in the kitchen with me or a sitter from 11:30 am until 5:00/5:30 pm. She then gets one CBD (no THC) gummy and if needed, one 5 mg Melatonin gummy. She will usually go right to sleep and most nights she will only wake me up one time to go to the bathroom.Research Mira Lax and its effect on the brain - it's terrible for the elderly with dementia. Peace.
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southernwave Jun 2023
Thanks for the heads up about miralax
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If you are looking to solve the problem so that you are not bothered by her getting up and down each night, you will either need to hire a caregiver who can follow her around when you are sleeping or move her into a MC facility.

Is your Mom a fall risk? If not, what is the harm in her being up all hours of the night? Are you worried that she might walk out the door without your knowledge? Are you worried that she might attempt to cook in the kitchen and leave the cooktop on? What is your worry?

When my Mom was going to senior day care, there was a lady who tried to escape the facility many times. She would grab her purse and run for the open door. Someone figured out that if she couldn't find her purse, then she would not leave. Hence from that point forward, when she checked into the center, her purse was handed to a caregiver, then returned to her when he was ready to leave for the day. Worked like a charm!
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MeDolly Jun 2023
Interesting that you should mention that my step-mother doesn't go anywhere without her purse. So the 1st day while we placing her in a new MC, sitting with the admin we see someone holding her arm and coming through the locked door.

Well, seems she followed a worker out the door, no one knew her and she had her purse, so she just followed him out.

Never happened again, she didn't get outside just in the AL section of the home.

My brother & I were like "Oh boy, we must have made a wrong decision". Turns out that we did not.
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I would rather see someone adjust to memory care and do all the happy wandering they want to do, safely under supervision, then trying multiple drugs to try to stop the wandering. I realize sometimes meds are necessary even in memory care, but I would not be drugging up my parent so I can sleep and have them fall and get hurt at home.
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BurntCaregiver Jun 2023
@Way

If the person is given the right combination and dosage of drugs they won't be getting up at night to wander around.

Believe me when I tell you, a memory care is not as supervised as you may think it is. Especially on the night shift.

Wanderers wander into other resident's rooms. They get into bed with strangers because they're out of it and think they're in with their spouse or significant other. People get assaulted.
In Connecticut at an Autumn Lake franchise nursing home, a resident was choked to death by her "boyfriend" with dementia. According to the local news he believed she was "cheating" on him.
Given a choice, if I ever get dementia I would rather be sedated and drugged at home so I don't get up at night rather than be in a memory care. Really, the only "security" measures in a memory care is a locked door so residents can't get off the floor they're on. Other than a locked door there's not a whole lot of monitoring going on.
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wampum13326: Perhaps it is due time for your mother, Frances to be in a memory care facility since her Sundowning is affecting you and your DH (Dear Husband). There comes a time when caregiving for a parent with dementia/Alzheimer's no longer works in the home setting.
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Melatonin at night. It's natural and activity during day and no naos. There was a day care if you can't do the activities.
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I cared for both my parents for two months (mom with dementia, dad with terminal cancer). In the course of that time, I didn't get more than four hours of sleep a night due to my mother's ceaseless getting up to go to the bathroom or coming down the hall to tell me my father was dead when he wasn't.

I lost 10 pounds in that time and was a jabbering wreck by the time my dad died.
I did it for two months, but he'd been doing it for several years and I'm convinced it led to his death. It isn't uncommon for the healthy spouse or caregiver to suffer severe health consequences, and in many cases, die before the person they're caring for.

That's why nursing homes have staffs of caregivers, not just one person. No single person can be on duty 24/7.

As to the poster who ignorantly compares caring for an adult with dementia to caring for a child -- a child actually sleeps for a good portion of the night. An infant is confined to a crib, so if it wakes up it won't wander. A child isn't as strong, or as heavy as an adult, and a child has a functioning brain.

I had three kids in four years (the first with severe colic) and was also exhausted, but my kids also slept through the night after a few months. This won't happen with OP's mother. Medications don't metabolize normally in an aging brain, so sleep meds are not necessarily the answer either.

It's time for memory care, so you can be freed up to be her daughter again.
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My heart goes out to you. So very hard to balance everything. Your mom is so important to you and it's ok to feel frustrated and tired. I don't know your financial situation but there are resources for help. What if you and your husband took two days a week for regroup time. Hire someone in home for a 48 hour stretch of total assistance and go stay in local hotel to do nothing but sleep and rest. She will be in her familiar environment and you can come back refreshed for another week. Good for your marriage too. Even if it's one day a week. Make it a regular thing. If that too costly get other family to do it for one or two nights and stay at their house. ❤️
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Talk to her doctor regarding a sleep medication. You do not want it to interfere with her current medication. Melatonin might be suggested but always ask doctor first. My daddy was prescribed a sleeping aide because he would wander at night. I never put a lock on his door because I, myself, did not like the idea of locking him in case of an emergency.
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My mom was like that in the early stages of dementia. Now, I use sleep medications to help her fall asleep. You should consult her doctor on what medication may work for her. There’s no exact medication that works for everyone. You’ll just need to find one that works perfectly for her. It may take a few tries with different medications and doses that will relax her to fall asleep.
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Maybe you can get a home health aide to come in for a few hours to help with her.
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