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

Be prepared for the 1st Sun in Nov; daylight savings ends the first Sun in Nov for those states that participates.

That can do a number, no pun, on people who don't have mental issues, it can be worse for those that do.

This sounds very difficult. 5 moves in 4 years? Wow. I guess that this move to memory care could be her last move so at least that will be a good thing.

What is your relationship with this - her 5th - facility….. They like her and share concerns? OR they are over her? I ask cause what might be a way to deal with finding a new facility is for mom to get hospitalized and neither you nor the current place (that sent her to ER/ED) will take her back from the hospital. So the discharge planner at the hospital then has to find placement for her. The scenario would be…. the NH thinks that mom is exhibiting something that requires an Emergency Room / Department evaluation. A TIA aka transient ischemic attack could be this as it’s somewhat subjective as to what seems to be happening visually but needs an EMS to the ER run for the elder to get hospitalized or under observation. Then when she gets the all clear, the NH refuses to take her back as they cannot meet the level of care needed. Now you as POA / family will get the call also to come & take her but you too refuse to go & get her as you cannot provide a safe environment for her and the care & oversight needed. Discharge planner has to find her a facility. Would this place maybe do this?

On the 30 day notice, there should be a CC at the bottom of the letter. Usually it gets CC to a probono legal aid, you might want to contact them as to any suggestions for placement.

If realistically you cannot find a new place and mom has worn out her welcome in any other facilities, AND if you do NOT come to get her, the MC will likely contact APS… then APS will seek an emergency ward of the state action for mom. So mom becomes under the purview of the guardian (judge usually assigns an atty or other professional guardian vetted by the state). Sometimes this can be best as they can find a spot for her and take care of filing Medicaid. If this happens, it does not have to be contentious between you and the court appointed guardian. Perhaps view APS and the guardian as being able to do what you cannot as they have all the resources of the State to use. If there has been no financial misappropriation that would be an issue for mom’s Medicaid eligibility, having her become a ward of the state may be something for you to think about.

Her going naked probably is the tipping point for the MC. Has there been any discussion on changing her wardrobe? There are clothing lines that are “adaptive clothing”, basically clothing they can’t get out of them…. They get called “anti-strip” or “stay dressed”. Silverts Clothing & Buck & Buck carry them.

My mom was kicked out of MC as well. Yup her behaviors caused problems. She was hitting, biting, head banging, you name it. She was a danger to herself and others.

She was on hospice at the time. Hospice recommended a much smaller care home that take those that have been kicked out. That care home worked better for mom and would have been better for her from the beginning. And it was cheaper than the large corporation memory care.

Best wishes to you, this is hard.

What meds are being prescribed for her sundowning? A consult with a geriatric psychiatrist is certainly in order.

By all means ask for a behavioral evaluation, based on the fact that her current medication isn’t working.

Our AL has a geriatric behaviorist on staff. What a Godsend! If yours does, use that person. If not ask them whom they recommend.

Just so you know, 25mg of seroquel is a starting dose and almost always needs to be adjusted upwards.

Have you talked to the doctor who manages her medications about her behavioral challenges and the fact that she's may need to move? I think a change or adustments in meds is in order.

You can outgrow a MC. They are not equipped to care for problem patients. Does Mom have a Neurologist. If so, he should be made aware of her behaviours so she can get medication to help her. I think your next step is Longterm care since you are thinking about Medicaid.

Mom is currently in Assisted Living according to your profile.
Mom probably should have been in Memory Care since the first or second time you moved her.
I know many people do not want to move a loved one into MC "sooner than they need to be" BUT the sooner a transition is made to MC the easier it is for someone with dementia to adjust to a new routine, new surroundings.
Medication can help with the anxiety, sleeping.
Not to rush or push anything but if mom has any condition that might make her eligible for Hospice a Hospice placement would also "fast track" her into a facility. Not to push it but typically with a hospice recommendation a facility would accept a person with an anticipated shorter residential expectancy. (did that make sense?)

How does your mother spend her days? My mother’s MC has a policy of not allowing residents to sit in their rooms during the day And no TVs are allowed in rooms so they don't sit and sleep. There is a large TV in the common room so staff can watch the residents and rouse them if they nod off. There are 7 planned activities everyday to keep residents awake and engaged. The goal is to keep everyone awake during the day and tire them out so they will sleep at night.

Greetings Tokamame, As I read through the many letters, my heart went out to you after reading yours. My mother recently went through the "Sundowning Syndrome." Like many illnesses that hit our Senior's, this was different. I pray for you and send many prayers to your mother. Soothing her as best you can helps, allowing her to carry something meaningful to her helps and yes gentle music for the mind. God Bless You...

I’m so sorry you’re having to deal with this. One idea is that, as someone mentioned, you contact a psychiatrist and ask if she can be hospitalized to evaluate her psychiatric needs, as it sounds like an adjustment might need to be made.
This might take a week, not sure. You can ask if she can be evaluated in a hospital setting for 2 weeks?
Back when my mom was alive, she was on a 4 year waiting list to get into a Medicare bed at a long term care facility.

The only way to bypass that long wait was to have just been released from a hospital to do 30 days at a nursing home, and then they’d downgrade her to an assisted living. She didn’t have this happen, but I know it was/possibly is still a thing. I don’t know if it still works that way (she passed in 2013)...

...but if it does still work that way, it might buy you another month? I think her program was called the StarPlus program that paid for her long term care? Call to find out if they offer this and if the Hospital Stay/30 day Nursing Home/Downgraded to an assisted living with a Memory Care Wing is an option.

God bless you and your mother, xo

My wife has had Alzheimers for over 10 years and for the last 2 years her sundowning was making my life and hers very difficult. Our doctor prescribed Seroquel (Quetiapine) for her and it helped for awhile. The doctor then prescribed Depakote (Divalproex Sod) and I consider it a game changer. Her sundowning is very mild now and as a mood stabilization drug it has made the whole day more comfortable for her and for me. I don't know if it will work for your loved one but I am happier with these drugs now than I was before. If I am happier my wife is also.

Let the facility know that she is on a waiting list and check with mom's Dr to see if she can take an over the counter Melatonin every evening and if that and music therapy doesn't work then ask Dr if she can be prescribed a mild sleeping pill.

Would they be able to lock her door in the evenings to keep her from going on other rooms?

bad memory is.Caused by a lack of nutrients The b vitamins Is she eating too many sweets or not eating at all? I’m 95 and my appetite is dwindling because I don’t move around well. I have lost my sense of balance and must use a walker. If.
If she can walk well she should have a daily course of walking. Eat no sweets and a B supplement. I recommend Puritan Pride They make their own and are pure. Let everyone know so others can benefit
big pharma wouldn’t want this known since they love MONEY!!
Cancer also can be. cured by an alkaline diet. Acid feeds cancer
Diet is important

Contact the primary physician for the facility. Ask to have orders written for labs drawn (a morning when she is lucid), for blood sugar, magnesium and potassium level. Repeat blood sugar check when the problem behaviors begin. My brother began similar behavior and they found his blood sugar crashed after dinner. If all normal, have they tried Melatonin or a mild anti-anxiety an hour prior? Sleep aid will not only stop interruption of facility but protect her from injury. God Bless

Thats sounds very tough im very sorry. Im in MA and you need to be hcp to do anythi.g here. So if you are can you work with her dr to get her on some tranquilizers or nightly meds?

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.

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.

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

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!

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?

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

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 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.

ok

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.

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.

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.

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.