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I have been caring for my Mother who was told that she cannot live on her own anymore. I brought my Mom up to live with my husband and I on Christmas eve of last year. She suffers with COPD, Dementia and we believe Parkinson's disease. I am becoming sleep deprived because I am awakend every night to my Mother's screaming, moaning, talking and thrashing about in her sleep. I am trying my best, but I am am exhausted. I also work a full time job where I have to be up by 4:30am for work. I am burnt out and really don't know how much longer I can keep doing this!!!

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There are medications that can help with hallucinations, delusions, anxiety.
BUT please get an accurate diagnosis on the dementia. LBD or Lewy Body Disease the type of dementia that is associated with Parkinson's is one that some medications that are given to other people with dementia can be problematic and even deadly.
While it is wonderful for you to want to keep mom at home IF this becomes a matter or your health and safety, your mental well being an your family's well being it might be time to consider placing her in Memory Care.
This is NOT a failure on your part but an acceptance that she needs more care than you can provide. In a MC facility there are people there 24/7/365 that can care for her.
Placing mom in a MC facility does not mean your caregiving is done, you still advocate for her, you still care for her but you can do it as a Daughter not as a caregiver.
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Reply to Grandma1954
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When this happens, you have to immediately stop and do everything for YOU first - if noting helps to stop this, and it is slowly harming you or worse, you cannot and must not tolerate it. Try to see if you can get her placed into a nursing home where Medicaid would cover the costs. YOU can't go on like this and under no circumstances should you allow this. You have to come first - please start checking now.
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Reply to Riley2166
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It is the worst that many of these medications take time to see if they will help - and sometimes see them make them worse and the constant battle and time it takes to find the correct balance - my heart feels for you.

As I said my mom did this during UTIs and even with her stroke comes behavioral and cognitive issues that we have had to figure out. My mom did start an SsRI but she also takes a 1/4 - 1/2 of a Xanax at night. It just has helped her get a sounder nights sleep allowing her days to be better. I know others here have also mentioned using Cbd products?

Is there a medication that your mom takes in the evening that could be more of a stimulant or causing a stimulant affect? I know I had to switch around some meds to be taken in the morning (that seemed to stimulate her too late in the evening) also causing her not to sleep well? I also noticed after moms stroke that I had to switch her to decaf coffee (she does not know this) but I did notice a caffeine affected her anxiety or focus after her stroke. Sometimes the smallest of things affect them.

I’m not sure if you have ever reached out to your local council on aging or a social worker to see if there are any local resources that mom may qualify for in regard to an aide. My mom also does not qualify for any government programs but there are some local chapters that she did qualify for local resources - some were 10/12 hours of free aide a week or discounted care and I used those to help us when we traveled to rehab as an extra set of hands to help us. Maybe requesting a social worker - as they usually have knowledge of any local resources that your mom may qualify for that will even allow you to get a break for a few hours a week. Best wishes.
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Reply to Momheal1
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" I am becoming sleep deprived because I am awakend every night to my Mother's screaming, moaning, talking and thrashing about in her sleep. I am trying my best, but I am am exhausted. I also work a full time job where I have to be up by 4:30am for work. I am burnt out and really don't know how much longer I can keep doing this!!!"

You haven't responded to the comments about considering facility placement for your mother. Why not? You take her to many doctors. Have you gone to your own doctor to see what he/she might say about the danger to YOUR health if you keep this up?

"I am caring for my mother Ruby, who is 74 years old, living in my home with age-related decline, alzheimer's / dementia, anxiety, arthritis, depression, incontinence, lung disease, mobility problems, parkinson's disease, sleep disorder, urinary tract infection, and vision problems."

Those are a lot of issues. Who takes care of her while you are at work?
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Reply to CTTN55
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CSimmers Nov 17, 2021
My husband is home with her until I get home, as he works second shift
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Get some night time help to come in.

There comes a time that a person's care requires more than you can provide.
Even if you did not have a full time job, her care is (and has been for awhile?)
beyond what you can provide without burnout, and affecting your own health.

You seem to have done an amazing job so far!

Your Mom is 74?
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Reply to Sendhelp
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CSimmers Nov 17, 2021
Yes she is 74. If we could afford a health aid that would be great, but her medicare does not cover home health care.
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Is your mom taking Donepezil, by chance? This medication has been associated with nightmares and night terrors with people suffering from dementia.

Otherwise, dementia is known to cause dramatic sleep disturbances including nightmares and night terrors which can be difficult to control, unfortunately. I think you need to research her medications, first and foremost, to make sure none of them are causing the nightmares. While you can never be certain, researching each one to see if nightmares are a side effect is a good start. The night disturbances are part of Sundowning which happens in the moderate to late stages of Alzheimer's and other dementias.

Another culprit that can cause severe nightmares for some people is Melatonin. If your mother is taking that supplement, remove it from her immediately and see if her night issues resolve.

We have a poster here on AgingCare that swears by the BioMat mini by Richway for his mother who was chronically upset & agitated with dementia and would not calm down with medications, etc. The BioMat is a heating pad type of thing that is infused with amethyst crystals. A person lays on it and it's instantly calming and soothing, or so some report. They are quite expensive to buy, but there are websites that offer rentals of a mini pad or a full sized one to try out. You can Google it if you're interested in learning more about it.

I myself had terrible, terrible nightmares from 5 years old until I was 28; my daughter went down the same road, sadly, and now at 28 herself, things are settling down a bit. The doctors were never able to help me (back in the day) and weren't able to do much for my DD either. I sincerely hope & pray you can find help for your mom b/c nightmares/night terrors are a horrible thing to suffer from, I know. To suggest this is somehow your fault or that you're not doing something to help your mom is ludicrous. I'm sorry that you are not sleeping yourself as a result of this nighttime disruption to everyone's schedule. You may have to consider placing her in a Memory Care ALF if you can't get the problem resolved in a certain amount of time. My mother is 95 in January and has been in Memory Care since June of 2019, which has been a true Godsend b/c her needs are tremendous now with advanced dementia, incontinence and being totally wheelchair bound and pretty immobilized. She's fallen 43x already and there's a staff there to pick her up each time, thank God.

Wishing you the best of luck with a very difficult situation.
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Reply to lealonnie1
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CSimmers Nov 17, 2021
No she is not taking Donepezil. Her neurologist has started her on Quetiapine (Seroquel) at bed time. She has been on that for a month but it doesn't seem to be helping. She is on a very low dose right now and we see him again on the 30th. I am going to talk to him about having a sleep study done.
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You have determined that some medications have made your Mom worse.
Ask for another medication review.

Ask the doctor to lower or stop all medications that are not necessary at this time.

Is she taking Cipro? Get it changed, imo. Of course, ask the doctor and pharmacist.
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CSimmers Nov 17, 2021
We have removed the medications that caused her symptoms to worsen and now are trying another. Her neurologist has started her on Quetiapine (Seroquel) at bed time. She has been on that for a month but it doesn't seem to be helping. She is on a very low dose right now and we see him again on the 30th. I am going to talk to him about having a sleep study done,
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My step mother had night terrors. Horrible nightmares, screaming, yelling. She even threw herself out of bed and has to have plastic surgery to repair a torn eyelid and tear duct because she scraped her face.

We determined that the nightmares were caused when her room was too hot. So, thermostat was turned down to 65 degrees at night, and the nightmares stopped.
You might try keeping her room cooler and see if the nightmares/ screaming stops
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Reply to Maple3044
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CSimmers Nov 17, 2021
Her room is set to a very cool setting. I am almost positive that these outburst are from the Parkinson's and Dementia. I am just hoping that we will be able to control it with the right medicine,
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These are called night terrors. My Mom suffered from them. Sometimes it was just a scared sound, others she screamed long enough I woke her up. I made her open her eyes and then told her to go back to sleep. She was OK the rest of the night. The most she had them was 2x a week. Her Neurologist did say if any more than that he would medicate her.

Seems you are seeing a Neurologist. Maybe for Mom that the doctor will just need to keep trying different medications until the right one is found. It could take a month before its found if the med is working or not.

You may want to consider placing Mom in a nice Longterm care facility. You can't continue to hold down a job and care for her. She is going to worsen. If she has any money, use it to get her in a facility that excepts Medicaid. My Mom had 20k. I started her Medicaid application in April. I placed her on May 1st and she paid for May and June. That gave me time to spend down her money and get Medicaid the info needed. June I confirmed Medicaid had what they needed and July 1st Medicaid started paying.
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Reply to JoAnn29
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Its definitely not a UTI. And this has been going on for a while. It was actually worse when she was living alone as she was hallucinating as well. The hallucination have subsided but the acting out in her sleep continues. Is this a symptom of Dementia and or Parkinson's?
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It has been almost a year and you haven't gotten her issues diagnosed? Hmmm, what is holding you back from getting her medical issues addressed? Whatever. Sounds like she may have REM Sleep Behavior Disorder, RBD. That could be a part of Parkinson's. Take her to a neurologist or better yet, a neurologist who is a Movement Disorder Specialist. You can find one by calling the Parkinson's Foundation at 1 800 4PD INFO. Ask them for their booklet on Sleep issues with Parkinson's. I suggest you actually do something to help her instead of complaining about its impact on you. You can do better. Not sure why you haven't. She may be better off living somewhere else and you can look into that while you are getting her medical needs finally addressed.
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Reply to vegaslady
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CSimmers Nov 15, 2021
We are seeing many doctors. So I am not sure as to why you think that we are not addressing her medical issues. Parkinson's disease can be hard to diagnose because so many other thngs can mimick the symtoms, She is seeing a fantastic neurologist and he is working on medications to help, but its just frustrating that its a trial and error to find the right medication that will work. Some medications have actually made her symptoms worse. I took over to help her by getting her doctors as she was ignoring her health. So your reply is definitely not helpful.
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First I have to say that caring for your mother is not worth risking your health over, by not getting the proper rest you need to be able to do your job and live your life. Lack of sleep is very detrimental to ones body and brain, and neither you nor your mother can go on much longer like this.
Have you talked to her doctor to see if there is any kind of medication you can give her, or have you tried Melatonin, as that can be helpful as well?
Your mother would not want you risking your health because of her, so it may come to the point that you will have to place her in the appropriate facility, where she will receive the 24/7 care she needs and you can once again get the rest you need to function, and just get back to being her daughter and advocate and not her fulltime caregiver.
I pray that God will give you wisdom and discernment in this matter and that both you and your mother will sleeping peacefully soon.
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Reply to funkygrandma59
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CSimmers Nov 15, 2021
Yes I have talked with her neurologist and he is trying medication but it does not seem to be doing anything. She has an appointment coming up and I will discuss other alternatives with him. Thank you for your reply.
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Is this a new change for your mom? I don’t have experience with dementia and sundowners but my mom is a stroke survivor and she did go through these nighttime issues - I did figure out when she has a UTI she has nighttime issues screaming - confusion etc and she didn’t even know or remember them.

I would check for a uti with any behavioral changes first. Also consider if she is on any new medications? You say she has dementia (so it could be changes of the disease or just a UTI that can bring on quick and extreme behavioral things as you explain above).
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Reply to Momheal1
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CSimmers Nov 15, 2021
Its definitely not a UTI. And this has been going on for a while. It was actually worse when she was living alone as she was hallucinating as well. The hallucination have subsided but the acting out in her sleep continues. Is this a symptom of Dementia and or Parkinson's?
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