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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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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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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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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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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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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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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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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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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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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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