My mother is moving from first stage dementia into middle stage and has been showing signs of Sundown syndrome. She gets very agitated, antsy/nervous, like she has had way too much sugar or caffeine (which she hasn't). Also, no new medications.
I have been reading on ways to try and alleviate it or make it easier, but was wondering if anyone else has experienced this and may have some tips.
Dad would call me saying the meeting at work ran late so he missed his bus home. So he will be staying the hotel for the evening. I believe Dad was thinking he was talking to my late Mom. And I knew this was the 1940's as that was last time Dad used bus transportation to get to work. The hotel was actually his room at senior living.
I didn't correct Dad on anything he was saying.... I just played along which I believed made him feel better. Correcting him would only confuse matters more.
Dad would power up that time machine usually after dinner. During the day, he had just normal age memory decline.
Our mother never lived with one of us after dementia kicked in. Initially the plan was to allow her to stay in her condo and bring in help as needed, for as long as we could, but after less than 3 months, she refused to let the aides in (it was only 1 hour/day, weekdays, and mainly a sanity/took meds check - she didn't need help with ADLs yet (wasn't cooking, but eating frozen dinners and boxed stuff at this point.)
To keep tabs on her and who was coming/going, we put in some cameras (we are all too far away to check on her daily.) Her "sun-downing" was outside the norm, sort of... It started just before she would go to bed, generally 8:30-9:30PM. Initially it would only be some nights, for a couple of iterations, but eventually became a marathon, lasting 1-1.5 hours! She would check the door lock, the sidelights, something in the kitchen that was out of range of the camera (turned out to be the dishwasher) and then the living room (light would shine through the pass-through onto the kitchen cabinets.) She repeated this over and over, tripping the camera every time (it only recorded a short bit after trigger, just enough to see what was going on, who came in, etc.) THIS would trigger my phone twice, once for the camera trip and once with an email clip sent - every few minutes, up to that 1.5 hours! OB was stupid, didn't understand when I sent him a link to sun-downing, and would call her to try to stop it. I suggested he do what I did - turn the sound off the phone until she stops. You can still check, mine still would vibrate, but the annoyance stopped for me by doing this, while still being able to monitor things. A few times she "snuck up" on the sidelights, like she thought someone was out there. Clearly it was her sun-downing, although it was outside the general time of day it happens. It can happen any time of day really, but most have it late afternoon/early evening.
We moved her to MC when the place we choose finally finished their rebuild and she didn't have any more issues, EXCEPT with a UTI. When I first joined this site, I would read about checking for UTI and thought it was hogwash, mostly. That changed when mom had her episode! It did coincide with later afternoon/early evening and she would rant and rave, wanted out because she had guests coming and had to go home! They called me to come - like I could do anything??? By the time I could get there, they had managed to get her into her room with a magazine. Of course this happened on a Friday evening, no access to doc. She did have an appt Monday anyway (wrong time but it was their mistake, so we used it to test for UTI.) Sure enough, she had one. Doc Rxed Lorazepam along with antibiotic. This solved the issue (she only had to take it until the UTI was under control, then she was back to as needed only.)
The nice things about this med, for us anyway, are:
1) it doesn't take days/weeks to "work". Within 10-15 m, even first time.
2) we can start/stop without issue
3) the minimal dose was enough to take the edge off
4) it didn't dope her up, just soothed the anxiety
Again, what works for some might not work for others. Certainly I would try all the non-Rx methods first - less is more, but if none of those work, you might have to "experiment" with medications. This one, as with others, is considered a potential fall risk, but I would rather that than her in that state which could cause more injury for her, the staff or another resident! It never caused any falls for her and was the lowest dose they use.
This is my wife before we found the only medication.
https://www.facebook.com/ellery.sir/videos/vb.1478413961/10210349485401673/?type=2&video_source=user_video_tab
This is after we found the medication and have been using it since 2013.
https://www.facebook.com/ginger.rose3X3/videos/10202389374773028/
Thank you for sharing!!
I would bring in the wine which was kept in the fridge in the medicine room & replace as needed - I felt this was good for her & the staff because she was easier to manage & she wasn't medicated with other problems associated - this was usually once a week or so
You need to find out what your mom will respond to in the same way because you know her best but off the top of my head you could try mini chocolate bars, granola bars - mainly something that doesn't spoil easily, is easy for the staff to give her & is portion controlled that is not going to upset dietary or medicinal restrictions [my mom was diabetic]
So my advice is to try to figure out what the frustration is all about, from the details of what is going on in her mind that she just cannot do even though she (or he) wants to do. Something may occur to you to lessen the frustration for her. I hope this is helpful.
Having extra lights on as the sun goes down can help too. As others have said, keeping a relaxing evening routine is most helpful.
P.S. I'm an RN and it occurs with many senior patients, not just AD.
The few tips I have is;
When she gets agitated try to redirect the conversation to something she knows, understands and likes. That is the best way I have tried to combat this awful disease.
Do not talk business during night hours and she most likely want to talk about things in the past; let her.
When redirecting the conversation go talk about things in the past.
Ssometimes to may have to leave the room to collect yourself cause it can be aggravating to you also.
She may keep asking the same questions just answer her.
I also recommend taking the Savvy Caregiver Training class given by Elder Options or if military ask the Veterans Administration. Although its mostly catered around Dementia, & Alzheimer they are all connected and you would learn a lot. The best thing is it's a free class and you will get sometime away and meet great people.
I hope it helps.
Your mother’s doc should get her on the med now because it takes time (a month for my husband) to take effect. You will see the night-day difference. There are many meds out there, so ask her doc for advice. Most are cheap with Medicare.
Another option is to try CBD - the non-addictive/good oil in marijuana. You can get them in capsules. It is available online, but not covered by insurance. It is expensive.
Dealing with someone having sundowning is NOT fun. You are not alone. Keep us posted. Good luck.
1 paper dixie cup small
1 cotton ball
lavender oil
we a dip cotton ball in lavender oil (just a little), place cotton ball in paper cup and hand to patient to walk around with. It calms them tremendously. They love to keep smelling it. We distribute these cups about the time we know they will start to sundown.
Try different oils on different folks. Some love certain smells over others but do not overpower their cotton ball or it will be too abrasive for them.
Just a little goes a long way.
Hope this helps...
We have to laugh when we can.
This disease is so horrible and just devastating, but having watched many patients and just recently my dear mom go through it, there are some moments of comfort that are found in the experiences.
She knocks on my bedroom door 4 or 5 times a night. She doesn't makes sense most of the time and is highly agitated.
She doesn't want the TV or music on. I keep a night light on in her room. I cannot keep her from napping during the day. She will scream, curse and fight you.
Melatonin, Trazadone, mirtrizipine, didn't change anything. We also tried some medication that was in a patch form but she wouldn't let me apply it.
She is now on Seroquel and it has helped some but the night before last she was up 3 times banging on my bedroom door screaming she was going to kill me.
Hwe dosage was increased to 100 mg in the day and 200 at night. I gave her 200 last night and she woke up after 3 hours and was up roaming again for 2 hours until she went back to bed. She is now up again and it is 5 in the morning.
I don't know what to do. She is 86, walks with a walker. She has roamed so much this last 2 weeks she has a trail from her walker in scratches on my wood floor.