Mom has severe sundowning and is being removed from facility. Any words of wisdom?

Sounds like the facility is not doing there job. What kind a place do they recommend for her? I would be asking why and why they don't have the staff to work with someone like her. This would really piss me off. I would work with a Social worker to help you find what you need. Counsel on aging can help also. So sorry to her this. I have my dad is a memory care unit and I understand it's hard and sad all in one but you got this.

The person that mentioned Melatonin for sundowning, is correct. It seemed to helped my Mom with it too.

Have them transfer her to a psych hospital if they don’t have psychiatric dr services at the facility. They will find medication or combo of meds that will make her manageable. It is common, for example, for dementia patients to become violent & curse. My mother has ups & downs …her neurologist prescribed Seroquel. However, my mother stopped walking so there’s no wandering problem. When she was in SNF before I took her home 4.5 years ago, there was a woman who constantly walked ..& she wore a bracelet around her ankle. Another resident used to kick & hit CNAs & they sent him to psych hospital for medication adjustment & then came back to facility when he was calmer. So make this suggestion to them & after she’s calmer from his hospital stay, perhaps place her in Skilled Nursing Facility. Go with her when they transfer her to psych hospital. Talk to Nursing Director …Good luck & let us know what happens! Hugs 🤗

I would ask the facility to allow you a little more time to resolve issues and find a place for your mom. Perhaps an appeal of the eviction can buy you more time.

First recommendation:

1) GOOD checkup with PCP
   This should include complete bloodwork AND a urine culture (not just the dip stick test.)
2) Consider other medications to manage her behavior.

It is rather disconcerting that a search on Seraquil shows it is often used for dementia, yet WebMD lists it as something that should be avoided if an elderly person has dementia

Source:
https://www.webmd.com/drugs/2/drug-4718/seroquel-oral/details/list-contraindications

I have no experience with it or aricept (couldn't find a whole lot quickly regarding aricept and dementia.) I will say that sure, for some people these meds might help, but for others they don't. If she's having issues every night, then it doesn't sound like these are helping her very much. WE should not be dictating what you should try - that should be the doctor who checks her out. It's fine to say what worked for your LO, but we are NOT doctors and should not be saying DO these things! There are different causes of dementia and not all respond to the same treatments.

The only real sun-downing my mother had was due to a UTI. Others can experience this due to other infections (hence the need for complete bloodwork too.) She would be fine in the morning, like it never happened. She would be fine all during the day, until late afternoon, early evening, then all hell broke loose. She would insist she had guests coming and HAD to get out and go home, she would set off every door alarm trying to get out.

This was a woman who was mild-mannered in MC for 4 years and was well liked by all the staff. Not a problem or trouble maker. She had to take Lorazepam during the UTI treatment, which did NOT dope her up, did NOT cause any falls and kept her calm. Oddly online also shows this as something not to take with dementia, but as noted, it works for some. For her it worked 1st time, every time and didn't need to be weaned off it. I still suggest you take her in for a REALLY good checkup and ask for doctor testing/recommendations.

UTIs and infections can do strange things to elders, esp those with dementia. Mom's second UTI resulted in night time bed wetting, aka soaking everything! This despite toileting, max briefs AND a max pad inserted in the briefs.

If the current medications are not doing the job, they need to be reviewed, removed, adjusted or replaced with something that works. Given that she's had issues for a while, it may have nothing to do with any kind of infection, which is why it is important to get that checkup.

I will agree with others, this sounds like AL, not MC and she likely should have been moved to MC (or care home) before she had to move so many times. Each move will take a toll. While there are *some* MC places that accept Medicaid, they are few and far between. By all means get the Medicaid paperwork going, as that takes time, appeal the eviction to buy more time, get her to the doc for a good checkup and make sure the places you are considering accept Medicaid.

(All too often people suggest NH - in most cases this would require a NEED for NH, which it doesn't sound like is the case here.)

My Mom was in Memory Care when I received the 30 day notice that we had to find a Nursing home that could provide better care for her. Best decision ever made! Wish we had done so sooner. Nursing home accepted her even with Medicaid not being approved for another 2 months. (took 3 months to get her qualified for it) Best wishes for you and your loved one.

Sorry about your mom. My mom had sundowning issues in the past but was due to a severe UTI that required IV antibiotics. After the IV'S she had no further episodes until the next infection which is less frequent now.. I gave her a small dose of Ativan and it worked well per neuro. I also tried Melatonin 5mg which worked well most nights but made her agitated and sleepy during the day. I know it works for some people. Good luck.

Get her off Gluten and sugar. It might help some. Fresh or frozen fruit is ok. No refined sugar at all. Gluten spikes blood sugar and creates inflammation in the brain. If you can ease inflammation she should calm down somewhat. Good luck.

I helped my mom through something like this. She was fine at home with 24 hour care but could not sleep at night and got up every hour and was distressed.
She had to move and something that really helped her was the MD who prescribed remeron. After that she was a good sleeper and less anxious. Caution that the dose needed to be reduced several times over several years because it was too strong as she got older.
Best of luck

Tokamame: Imho, as your profile states that your mother is in an AL, perhaps she HAS needed an MC.

For years, I'd give Mom 5mg. of Melatonin just before she started to sun down(nip it in the bud) and then another 5 just before I put her to bed. Worked perfect for us.

Doesn't the facility that she's in now have a Care Manager to assist you in the steps needed to transfer your mom? I would contact the Director there & see if someone help. If you refuse to take your mom after the 30 days, what would happen? Find out. If you need legal aid at that point please call on behalf of your mom as she is responsible for her upkeep. If you are financially & physically able to care for your mom at your house then take her home until placement is available, however do not take this step if your are not able or willing for this responsibility. She will need 24hr. monitoring & care. She may present with agitation, aggression, etc. that you haven't seen unless you've observed this behavior while visiting her at night. You would need to be prepared with respite time for you even if it's just an hour or two. It is not easy to care for LO at home. Just get informed about options, get advice from legal if needed, & be an advocate for your mom especially if you are not able to take her home until placement is available. Good luck in whatever happens.

Sorry about the spelling before I meant she had AS and medicaid.My mom was sent to the hospital for a one week evaluation and it was a total waste for her.Scary actually they tried different drugs on her and the sundowning continued.She went into patients rooms and caused trouble and did not want to leave.Did not work for us but I was reaching out for any help not knowing what to do.Please try to work with the facility she's at.... more moves will cause more confusion in her.My mom is no longer here but I cherish the time I had to spend walking the floors with her keeping her safe. At the time I did not know what to do. I hope you can work it out for a good result for both of you🌻🌻

This happened to my mom but I had my mom enrolled in hospice at the time.She was in a memory care assisted living in the memory card section.She had no money only As and eventually Medicaid but that only paid the facility.I do not know if you have any family members who can help but my brother and sister and I pitched in and paid a couple of the CNAs to help in the hours we could not due to work.The facility let her stay and whatever hours I couldn't provide we paid the CNAs.

I'd talk this over with a social worker or a health care provider who takes Medicaid. It sounds like the dark very much confuses her. So I would get her a special lamp that imitates sunlight and put on some soothing music and get her coloring books to calm her down.

If she is in Assisted Living, and NOT a "Nursing Home" - yes, they can boot her out when the level of care becomes greater than what the staff is able to provide. Assisted Living means that the person still is fairly independent. It sounds like she is beyond that point now. Her evening behavior is unfair to the other residents.

Most Assisted Living places do not accept Medicaid as payment; the ones that do are the exception.

But this should be your FIRST priority - getting her qualified for Medicaid - so that when a Nursing Home bed becomes available, she is ready for it.

They can’t just open the door and release her.
Call Social Services and make them aware of the circumstances.
Tell then about the notice and lack of places with beds.
I have to say, getting an attorney “pro Bono,” isn’t as easy as it sounds.
What a dilemma.
My heart goes out to you.

She might benefit from a brief stay in an inpatient psychiatric unit to get her evaluated and treated for her severe behavioral problems. Look for ones that specifically treat geriatric behavior problems related to dementia.

Some really good suggestions have been posted for you. It is so unfortunate that you've had to move her so often since that has probably affected her level of confusion. Understandably, you did not have an option.
First, get an appt. for her to see her PCP to check for an UTI. That's always a good idea. It seems these are quite common and often go undiagnosed, which is so sad for the aging person and family that wants what's best for them.
Next, while you wait for the appt., contact an eldercare attny or legal service organization that does pro-bono work. This should be a absolute in order to make sure you know her rights, and yours as her caregiver. This "you have to move her" seems quite drastic esp. since they seem to enjoy her, and many facilities want to keep residents. Please make sure you check references and confirm their credentials prior to providing a lot of personal info, and esp. before you pay them anything, though.
Then, reach out to hospice in your area. My experience w/ hospice is that they can be a wealth of information when it comes to resources and support. Again, do your research to find a reputable one.
If your mom was part of a religious congregation, they may have some suggestions for sitters. Shoot, you could even see if there is a senior center in the area. They may have volunteers or "low cost" options for a caregiver to be with her at her current facility.
Good luck. Keep loving her and doing the best that you are doing.

Drugs or food or supplements like Magnesium helped my folks 85 and 95 starting approx 5 years ago. We need approx 400 mg in our food daily and more if we are deficient. low ferratin, low B12.. low sodium especially. My dad becomes low in sodium chloride because we don't eat processed food. I save the snacks and fast food for going out regularly. But he is susceptible to mood issues with low sodium and also when he becomes anemic and low in blood lab markers which causes cognitive issues. European descendants have a deficit in holding B12 or need the methylated kind.. It is over my head but it is stuff like that which more often than not causes a cognitive issue. Alternatively vascular issues of blood flow unable to get through calcified arteries or arteries that do not have elasticity. SO many things and Dr Dale Bredesen touches on this things on videos here and there on youtube .

Too much glucose floating around from juice and sugary oatmeal and icecream etc will also create cellular inflammation. We are only suppose to have 1 tsp of glucose or glycogen in our blood at any given time is what i picked up somewhere. More than that and we are in an inflammatory state.

If you can get her labs and take them to an online functional medicine doctor or speak or plead sincerely with her physician to look at her labs and rule out that her body is not going into a self repair activation mode to manage this loss of homeostasis, ,,,hopefully the dr specializes in geriatrics or dementia or Alzheimer's, that whole cognition umbrella. THose dr of many other types of health practitioners or even other people on this very site, know how to turn this around to make it more manageable. Otherwise i would not have been able to have my parents live with me. My mom would also come around naked, open the doors, yell, have agitation and be up so late. Once i got the windows open, got her out into sunshine for an hour a day... her D levels up and eating actual COD LIVERS, bumping up magnesium... (depends what kind because it can create diarrhea by moving the intestinal contents too fast. But the sun downing issues mostly resolved with getting the person stimulated enough during the day with a lot of activity and outdoor air. Except in her last few months, she began to get swallow issues WHen my dad behaves with more anxiety, he usually ends up going to have a bowel movement and his anxiety miraculously stops. This just happened last week. I am beginning to notice this pattern. I myself begin to get frustrated when i eat a whole bag of popcorn and feel just too packed in my intestines. With elders, their neuropathways begin in the intestines and if they are blocked or there is not enough of a diversity of bacteria to provide communication and digestion and get it into the villi and absorbed, the brain goes wacko. You can read up on that .... Look up "tight junctions" nutrient absorption, cognition, constipation, neurotransmitters, microbiome, magnesium, electrolytes, behavior, circadian rhythm, "sun downing" schedule, regularity, hydration, improvement, strains, reverse symptoms, ph, mood, dementia etc etc. You will get a lot of answers.

I don't know what the NPI interview is, but starting the Medicaid application is priority. Appeal the eviction letter from facility. That should allow more time to find an open bed. There may not be an open bed close by - might have to take what you can get until opening in your area.

I don't really understand facility trying to help you fast track her into one of the local facilities while, at the same time, serving documents to boot her out. Appeal. And submit copy of the appeal to your Ombudsman's office, too.

You might also ask the facility doctor to see about meds that might quiet her activities at night. It's very possible there is something for sleeping that might make things better and stay where she is.

How is current facility being paid for if she has no money and has no Medicaid. Did facility keep her and her midnight raids as long as she could pay and THEN decide it was time to move on when they knew the funds were depleted? If so, mention that in your appeal - she has been doing this for XX number of months and acceptable to facility as a self pay patient. Ironic it is no longer acceptable at the same time money ran out and would need Medicaid.

I think the current facility can be forced to find her a new bed if you can't find one. I was having a similar problem with my brother. He was a ward of the state they stepped in and forced place in the only bed available. It was not memory care, but frankly at that point nothing was going to help. The facility was more than adequate managing his care.

ok

I don't know which state you're living in but regardless of the area, I do not think that the facility is legally able to "put your mother out in the street". You may need to find a memory care facility that is out of the area to get good care for her. If you can drive to see her regularly, even if it's not daily, or even weekly, it is better than if the care is marginal.
Whatever you do ... do not take her home with you!
Keep looking and know that the deadline for her removal is flexible, especially if you're truly looking for a place for her.

Please find a geriatric neurologist and primary doctor that is familiar and sensitive to the symptoms. Insist on urine culture and blood work. It’s important to rule out a UTI and and/ or infection. My Mom (soon to be 99 with dementia) had 9 UTI’s in a 12 month period. She also suffered from severe sundowning and psychotic episodes. Once her symptoms were addressed with the sensitive geriatric specialists and geriatric psychiatrist an-evenness to her life and our’s evolved.
She is on zoloft for depression, remeron to help her sleep at night, risperadone (anti-psychotic med), a very low dose of liquid methadone for her pain ( from a palliative doctor).
The medication was prescribed by an amazing group of doctors over an 18 month period of time.
There is now a contentment that exists for Mom, caregivers.
it takes a lot of work to oversee that the input is consistent but it has paid off.

I’m exhausted but it’s the right path.
FYI, we were advised to NOT do CBD. It can make psychosis worse.

My heart goes out to you.

I also feel that medical marijuana can be extremely helpful to you The tinctures are effective and dosage can be easily monitored. I’m sad that the facility is not equipped to handle this as it isn’t out of the ordinary behavior. I wonder if she was self- pay would they be as quick to ask her to leave. Another suggestion would be see if they keep her active during the day .. not constant naps. Wishing you all the best

Check with an eldercare attorney and the Office on Aging and Adult Protective Services. I am not sure but I do NOT think they can push her out unless she has a place to go to. YOU SHOULD NOT, EVER GIVE IN AND ACCEPT HER AND TAKE HER HOME - IT WILL BE GHE END OF YOU. Seek professional advice how to handle this. And why is she not being given medication late in the day to make her sleep and stop the behavior?

You’re in a most difficult situation- I’m sorry for you and your mother. Some good advice has already been offered. I’d like to add that we kept my dad from consuming sugar n carbs after noon and his sundowning improved. If he gets carbs later let it be vegetables like broccoli or something! Medical marijuana was legal in our state & Dad took capsules that were 1/2 and 1/2 THC and CBD. Worked great to keep his mood more level and made him hungry, which helped b/c he was fighting cancer, too which made him not want to eat. If she can get more exercise & stimulation during the day her evenings may improve. There’s no magic bullet, but trying to follow a schedule and watching the diet may help retrain her habits and change some of those long, otherwise miserable nites. Good luck- am hoping it all improves for both of you!

Hi, my mother has been going DOWN this road for some time now (6-8 yrs) but recently had her neurologist suggest taking OTC Dextromethorphan aka Cough DM easily found at any drug store chain or Walmart/Amazon For her Sundowner's. She takes a morning dose (per package instructions 10mls) with breakfast and again in the evening with dinner, 10mls. This was life changing in it's effects on Mom. She did calm down. Also though she is now taking Seroquel 2x daily to help with agitation. I understand that she may need to up her dose overtime as her body gets used to the drug and her dementia/sundowner's progresses. I really do suggest trying the Dextromethorphan since it's drug free and safe for kids too - can't hurt to try. Hope it helps

Get an elder care lawyer ASAP. The lawyer can stop the facility from expulsion until a place for mom can be arranged. You are doing the right thing with applying for Medicaid. Have the lawyer expedite it for you.

In many ways your story is similar to my own and surely many who visit this site. My mom sundowns as early as 5pm every day, walks the halls, bangs on doors, etc. And sadly enough had to leave her assisted living facility. The key for us was to get her into a rehab which often double as a long term nursing home. Once there we requested long term care which takes an amount of paper work basically proving that she had no money, spouse, etc. but after a few months she was approved through Medicare for a term of 1 year. Basically they take her entire social security but provide full care with no additional expenses. The key is getting into the rehab first. If your mom were to go into the hospital for any reason ask that she only be released to a rehab facility and from there request long term care and they should be able to assist.