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My mother, who lives with my father and older sister, has had 16 strokes in the past 2 years. 14 of the strokes were TIA, with the last 2 being Ischemic. She is only 64 years old. Her mobility is extremely limited. We are now facing a complete lack of appetite along with Sundowners. The medical professionals she has, have not been helpful in managing symptoms. I have scheduled her with a Neuropsychiatrist to evaluate her emotional state and perhaps start her on an anti-depressant/anti-anxiety medication. She is up all night stating she is not safe and demanding that they hold her. I have ordered her a weighted blanket to help ease some of her anxiety. Any suggestions would be greatly appreciated.

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Increase lighting.
LED's are great they give a nice bright light.
Close blinds and curtains as it gets darker so you do not not get the "mirror effect" when looking at a window.
Keep the same schedule as best you can getting her up at the same time, bed at the same time.
There are herbal teas that might help calm her those might help until she sees a doctor. And if you try one inform the doctor as some herbals can interact with medications just like anything else.
Antianxiety medications might help. It might also take time to find the right med and the right dose so be patient.
*side note on the weighted blanket. I tried one myself and it was terrible, it was so heavy I could not move in bed.
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Hello,rebecca40

My father also has sundowners... I have noticed that sometimes, playing along helps a lot. To them, whatever is happening in their mind is completely real and they can become even more frustrated and nervous if they feel like no one else understands, which can cause more anxiety for them. Unfortunately, it is a cycle... and sometimes it can be really hard, because our reaction can determine, if the episode continues to build.
My dad is on a medication called Sertraline (Zoloft.)
This medication has helped him tremendously …
We also have started, getting him out of his recliner and in the bed earlier in the evening, which tends to help. A nap during the day helps as well. The doctor told us, my dad needed to be on a set schedule for rest. Changing up the schedule in any way, can cause stress on them, resulting in episodes of anxiety, which causes you stress.
I am definitely not an expert, this is just what I do to help my Daddy. It seems to keep him comfortable and the episodes with sundowners isn't too bad now that we have a routine and medication.

If you need anyone to talk to, I am here.
Praying for you! :)
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NobodyGetsIt Oct 2020
Dear "Ballen1012,"

You take such good care of your father!

I really liked your idea of playing along so they feel like someone understands, lessening the anxiety. I'm glad the Sertraline/Zoloft has helped your dad tremendously. I know both my husband and I have tried it but, we both stopped taking it for different reasons.

And actually, it's recommended that all of us have set sleeping habits regardless of age or whether or not we are even having health issues.
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Rebecca, we had limited experience with sundowning, but did make some changes.   I think they helped but they didn't resolve the situation, because I don't think that's possible.

We made sure that nothing was started around the time of the setting sun; we started earlier and carried whatever we were doing through the dinner hour and into the evening, not necessarily creating an overwhelming schedule but making sure that something was always available to do so there wasn't time to become upset and distressed over an issue that didn't exist. 

If your mother is awake all night, does she sleep during the day?   If so, I would gradually start changing that schedule so that she's awake during the day and can sleep at night.

I think also with so many strokes that just plain anxiety for another stroke, and what might happen then, is a major factor.    Strokes can be devastating, and if someone already has dementia, the combination can create a very unsettling scenario and panic mode. 

Two other thoughts:    the lack of appetite might be caused by meds.    Check out the side effects of the ones she's taking and see if appetite loss is a side effect.  Or it could be a combination of meds, with one affecting another.    But a complete loss of appetite sounds like something serious, such as med side effect or something more seriously amiss in her basic health.

Ambien can cause delusions.   If she's taking that, it might account for the evening anxiety.
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NobodyGetsIt Oct 2020
"GardenArtist,"

Good insight about having had so many strokes that she may have anxiety about having another one and like you said, if combined with dementia it most certainly could create a feeling of panic and be very unsettling for her.
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Thank you all for the advice. I will definitely try it. Anything helps.
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Dear "rebecca40,"

I have never had to deal with Sundowner's Syndrome so I don't have any suggestions for you.

I just feel bad for your mom having had 16 strokes in a two year period. I can't even imagine that - having one would be devastating enough.

I'm so glad you have her scheduled to see a Neuropsychiatrist to evaluate her since her regular doctors don't seem to be helping her.

Many good thoughts and suggestions have been given to you from the forum members. I sure hope something will help her as I know how stressful this must be not just for your father and older sister with whom she lives with but, for yourself as well.

You can also click on "care topics" in the upper right hand corner on the AgingCare teal/green bar (which is in alphabetical order) and find information there on Sundowner's Syndrome.

Best wishes to you and your family and I pray she will be helped by the Neuropsychiatrist!
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Great suggestions below. My dad suffered from sundowners at the end of his life. Getting exposed to sunlight during the day or at least sitting by a window was one suggestion. He was placed on an anxiety med along with melatonin and a sleep med for nights. Day naps were shortened so he could sleep some during the night. Glad you are seeing a new doctor.
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My husband, age 68, has moderate stage Alzheimers, and is now placed in a memory care facility. He had been suffering for at least 3 years, but it all started about 6 years ago with memory loss. He was getting highly agitated here at home, with confusion and boredom, and not being able to comprehend tv shows, reading, games, etc. Our primary doctor suggested activity outside the home, but due to Covid, our socializing is restricted, thus making him more irritable, especially with me. Anyway, since being at the memory facility for these past two months, they have put him on an antidepressant, Zoloft, and he's doing much better with his moods, and especially since he's around people and has some activities. Covid is limiting visitation, except for outside window visits, which is difficult because of the cold weather now. Anyway, I would suggest Zoloft, which I think with help with the sundown syndrome. Just wish that I could take something for myself, but my health limits some meds due to side effects. Stress is terrible, as well as guilt for not being able to control the situation nor take care of him myself. Best of luck to you. Pray, too
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InFamilyService Oct 2020
For yourself you could try chamomile tea and low dose melatonin. Try some CBD gummies, it def will take the edge off. Ask your doctor first of course. Good luck and I wish you peace.
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We have been fortunate with regard to sundowning. It is typically a symptom for him, generally of a UTI, a couple of times a fungal infection. When we treated the infection the sundowning went away completely.
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when they sleep most of the day they will be up all night.
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Weighted blanket helps, hospital bed with rails, adjustable height & bed alarm, melatonin gummies at least 10 mg (strawberry 🍓 @Walmart.com), calming lavender essential oil to rub on wrist and behind ear as well as in diffuser, sound machine are all things that helped with my dad. Keeping him awake in daytime with minimal naps and activities helped as well.
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My dad loves music. We put an Echo/Alexa device in his room. He has been taught how to ask Echo for smooth Jazz or Love Songs. He can also call my cell through it from his bed. Try music. I also use lotion on his feet and arms before he goes to bed. The lotion calms him down. I also pray with him too.
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i feel your pain although my moms sundowning seems to have eased up quite a bit. Your moms symptoms seem severe...has her neuro suggested any type of benzo, anti-anxiety. She sounds like she needs that badly for her paranoia & SLEEP! or seroquel (quetiapine) for sleep.
I really feel for your Dad & sister! For you as well but them b/c they’re right there. Sundowners is a real frightening experience for caregivers to go through! Unlike anything I’ve ever experienced. That & UTI’s.
How were you able to know that she’s had that many TIA’s & 2 ischemic?
my mom had a hemorrhagic stroke & the dr’s did state she’d likely have mini strokes, or those tia’s, moving forward until she has another big one of which she will not survive.
I am so sorry for you, your Mom’s so young.
godspeed.
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Please try CBD oil. 1000 mg. Under tongue or in liquid.
Start with half of dropper.
Give it to her about 60 minutes before her sundowners usualy starts.
No side effects. Works wonders.
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FreckleBut Oct 2020
Be really careful with CBD oil. CBD is the carrier for THC. What that means is CBD smooths the transfer of THC into the body (it doesn't make you high it makes the high quicker or stronger). If a person is taking some psychoactive drugs (anti-depressants or bipolar medications) and CBD oil the CBD oil will "rush" the medication through the body so instead of lasting 8 hours the medicine will only last 6 hours. For people taking pain medications taking CBD oil at the same time can be very VERY detrimental. Oxy combined with CBD can bring on a form of overdose because the medicine is rushed through the body system so quickly. In some people this can result in a seizure- type episode. Depending upon the prescription amount of Oxy the combination can be life threatening. If the person needs "extras" for pain and take Oxy the use of topical CBD oil creams directly on the pain spot do not result in any adverse effects. CBD oil naturally lowers blood pressure and depending on the aged medicine sensitivity to drugs can help with high blood pressure issues. CBD oil that has a tiny amount of tryptophan can help with sleeping but should be altered out with melatonin every few days. Tryptophan (in supplementary form) while helping with sleeping tends to rob the muscles of potassium. This is a body reaction for equilibrium of vitamins and minerals. Anyway if the elderly is not overweight and has no diabetic issues a yellow banana usually contains enough tryptophan to help sleep if eaten before bed. Green bananas are full of potassium and magnesium that combined in the body will make tryptophan (turkey has the same result). The more ripe the banana the potassium and magnesium is being changed in the ripening process to form a sugar. A yellow banana is edible while not being overloaded with sugars. Ok back to CBD oil. If your elderly does NOT have low blood pressure issues, is not taking a prescription pain reliever (OTC's are okay), is only on low does mental health drugs- CBD oil is a great addition to the curriculum. As with ALL Drugs- even vitamins, minerals and herbals be sure to do research before administration for drug interactions that may cause issues.
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Contact you local Alzheimer's Association, there are studies that show getting a special type of lighting in your home will sometime stop the sundowning. The Alzheimer's Association could fill you in on those details.
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My dad, who has Alzheimer’s, is now experiencing more frequent sundowners and has become more combative and verbally abusive to our wonderful night caregivers. The hospice nurse ordered lorazepam (Ativan) as a night dose to help lessen anxiety. We begin it tomorrow. Am hoping it helps. In addition, we don’t give him anything sugary after lunch. We try to keep him up more during the day, though he can take an hour nap if needed (he’s 90). Some nites he sleeps more, but his internal clock has been wonky for the past several years. One response suggested using touch. We will definitely try that! Good luck!
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Boy I feel for you. My mom has dementia and I’m staying with her while my dad recovering from stroke in hospital. She got out last night at 3am and aid brought her back. She cried begging to see my dad until 530am has anger outbursts it’s horrible!! Her primary was not helpful. I had her zoom with psychiatrist she put her on .25 mg of Seroquel 3 x day . To me not helping. Another zoom tonight. It’s so difficult for you and family I get it!!! Please keep in touch on what takes place with your mom. My mom 92 dad is 93. I’ll put you in my prayers
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She may need a sleeping agent as well as anti-anxiety medication. If she is "up all night", she may be sleeping all day. Family needs to keep her awake during the day and active so she can sleep better at night.
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We started my father on Ativan about a month ago and what an amazing difference in his demeanor. Dad has COPD and related moderate cognitive impairment. He was often anxious about being able to reach my sister or myself and had flare ups of angry, confused, meanness in out-bursts that were unpredictable and sudden. With the Ativan he is much more reasonable and calm. It also makes him drowsy and more apt to fall asleep.
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The PA handling my husband's dementia suggested using melatonin 10 mg. at night. it is an OYC herbal supplement, that we used for years when we traveled. You can get it at any drug store or vitamin shop. Works for my husband and he is 190 pounds. helped stop the multiple ups at night.
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We found lavender essential oil to be extremely helpful with my mom. You would need to use a good quality, hopefully organic, brand. We use Young Living and Ancient Therapeutics. It has been a HUGE help. You can use it on the wrists (pulse points), on back of neck, but the most absorent skin on the body is the bottom of the feet so it works quicker used there - up and down the arch of the foot a couple times (you need a roller ball bottle) and at base of big toe, which I believe is connected to the brain. Hope this helps you as much as it has us.
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Getting in touch with a neurologists is a good way to go, they specialize in nerve trouble, dementia, epilepsy, and other nerve troubles. Your mother may possibly be developing dementia, don't what see a specialist and they can slow it from turning into Alzheimer's.
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clamcc Oct 2020
No they cant.
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Good morning.
Ive had this situation with my client. She would put furniture in front of doors, see images in furniture and shadows and more. Along with owning a personal senior care service I do what is called Raindrop Therapy, its used with particular oils. After taking chemistry on the compounds of the oils I gained understanding what pure unadulterated is. So the following is done with YL oils.
Lavender, Peace and Calming, CBD oil -
Ive used to diffuse, put drop on pillow, put a drop or two on brain stem, massage feet with one of the oils mixed with coconut oil. Also if she was extea active I would empty a drawer, kinda making a mess on her bed...she would organize and then go to bed.
Now when I arrive there is no chair against the front and side door no nightstand against her bedroom door, she has stopped taking shadowds thinking its a person. Also bedroom is a relaxing atmisphere, and I watch what she watches before bedtime. I also have her eat dinner a hour or so before bed, I make sure she does not need to go to the bathroom.
I no longer have this issue and she has advanced dementia. When I arrive her bedroom door is open and she is very peaceful. Science has proven what happens when we smell different things and what it does to the brain. Bless you, I hope this helps.
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Take her to Both a geriatric dr and a geriatric psychiatrist. Seroquel eased my grammas symptoms. Of course everyone is different but my gramma was 98 yrs old on 150mg. 25 is the lowest of which she started on and went up to 150mg as her body became use to the 25 mg after 3 years and that’s normal. So meds should be adjusted as needed. She was also on 10mg of melatonin. Seroquel also helped w/her appetite and delusional thoughts. Sounds like you need some night help until you get her symptoms more or less under control. If u can keep her up later like 10p is better and if she must take a nap do so early around 10a. She may never sleep 8hrs straight so don’t drive yourself crazy chasing 8hrs. 6 or 5hrs is the most u may get at one time and that’s plenty for her with an occasional nap for an 1hr. Furthermore You Will need permanent night help as her symptoms progress so you can get Your rest, please know there is no cure for sundowners. Her mind will never be right again and eventually you’ll have to just let her sleep when her mind let’s her sleep whatever time that is, that’s why it’s so important to get night help as her disease progresses.
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my2cents Oct 2020
I was going to suggest geriatric dr, too. I have found that the general med dr my mom used all the time is not in tune with elder care so much. Quite often, his response is to remind me how old she is. Really?? I know exactly how hold she is. And if my goal is to keep her moving so I can take care of her (with the possibility of her living to be 100+ like her mom), I need more than a reminder of her age. Geriatric doctors, especially at a teaching hospital, can provide more.
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I dont believe that is typical sundowners. Nevertheless, In my now 11 year journey caregiving for my other half who is now starting to stay awake all night arguing with people I cant see, I have found that all but 2 prescribed medications after Namenda and Aricept stopped working, had side effects that exacerbated the behaviors. I have resorted to giving him what I take to help me sleep which I found cheapest on Amazon, doxylamine succinate 25mg, their brand. Face it, we are saying "the long goodbye". We need and want to keep them safe and happy, but we can't do that when we are exhausted. Listen to your own wisdom. Look things up online. It has been my experience that adding drugs to manage side affects is not the answer. Getting rid of the drug and finding something natural is the better alternative. In that vein, have you tried camille tea? St. John's wort? Playing meditation music 528 hz or chakra clearing or guided sleep meditation from YouTube? until the sominex or benadryl take affect. Hot milk, hot cocoa. Hug her with a BIG stuffed animal between you so when she falls asleep you can extricate yourself without waking her. Check out Shaman Oaks healing meditations live. The music works to put me to sleep. Just keep in mind that doctors are still baffled by this disease and we know our loved ones. Empower yourself to care for her and be sure to care for you because without you she is s.o.l.
Namaste
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pronker Oct 2020
Excellent words to heed and I particularly like the large stuffed animal that she can be left with so her arms are not empty upon awakening.
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Try to keep her awake all day.
Meals - follow the old rule of
breakfast like a king
lunch like a prince
dinner like a pauper

AVOID carbs, sugar and caffeine at dinner!
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If you're in a state where medical marijuana is an option, maybe you can get her card and give her gummies. THC gummies are easier to consume and dose. For instance, I will only take a quarter of a 10 mg square because I don't like to be stoned, just relaxed.
CBD is another good option, and does not require a medical marijuana card since it's not considered a drug. It just takes a while to build in the system to get any results.
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MumsHelper Oct 2020
Thinking a bit more and agreeing with the use of essential oils, such as lavender, my go to is vetiver -- the oil of tranquility. Just a drop rubbed on the wrist or behind the ear works wonders.
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Starting back in April or so, Richard had started complaining he could not sleep at night, but he would sleep too much during the day. Looking back I see now that was the beginning of his final decline. Kaiser doctor gave him 15 mg Temazepam, that would knock him out too much, started affecting his balance. I told the doctor I wanted him off it, they imstead renewed it at half the dose, 7,5 mg. I woul don,ly give him one when he absolutely demanded it. As time went on he stopped wanting to eat, slowly stopped being able to get from the bed to the bathroom, had several falls. Try to keep your loved one active during the day, do not just let her sleep, wake her up, give her a shower or a bed bath every day, sit her up as much as possible, do activities, go through old photographs or albums, have her do chair or bed exercises of moving her legs and arms, range of motion things with her hands, anything you can to help her body use some energy. Open the curtains, bring the light inside, put her in a wheelchair and take her out in the sunshine, or carry an umbrella and go for a walk in the rain. Try and spend good time with her.....
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Our primary care doctor prescribed Trazadone 50mg for my husband....up to two a day. I give him one early evening (around 5:00) along with two Melatonin. That has helped a lot. If he starts yelling during the night, I give him another one. Good luck. I treasure a decent night's sleep so I can make it through the day.
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I have reservations about the weighted blanket. I don't know if they are all the same, but the one my daughter gave me for Christmas last year is very heavy. She might not be able to turn over or get out from under it.
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Ativan usually works great for anxiety in elderly
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