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I know it’s normal for people with dementia to have sundowning each night where they get confused maybe even agitated. My grandmother gets completely escalated nearly every night. I’d say at least 5/7 nights a week. And the 6th and 7th nights she’s still agitated or crying or something but it only last about an hour and eventually I’ll say something that seems to comfort her enough to agree to stay with me. Full on meltdown nights start at average 3pm and go well into the night until she wears herself out. And sometimes then she will go to sleep for a couple hours and wake up again still in the same agitated state and ready to get the hell out of this house at like 3am. Doctors just keep dismissing us, I’ve asked for psychiatrist referrals for months but I’ve resorted to seeking out my own and hopefully getting an appointment this month. The medications the doctors give us are not really effective in calming her down unless you can magically predict exactly an hour before she might have a meltdown (which I can do sometimes). But is this really normal? Is this really what people commonly experience and I just need to accept it? She’s slowly killing me and my mom with this. I try every too and trick I’ve ever read and most of it rarely works. And really it’s hard to tell when he’s actually confused or she’s actually just mad because she never wanted to live with us. Some nights it’s very clearly that she’s mad we won’t take her to visit her mother but other night she says she knows she sleeps here every night but that doesn’t change that she wants to be at her house and usually she knows which house she’s talking about and even though there is no one can stay with her to cook for her and make sure she changes and bathes and doesn’t fall, she says she doesn’t care and to let her be and live how she wants to live or she says/expects that other family (who can’t possibly make time for her) will just come and stay with her if she’s in her house. She has meltdowns any day a caregiver has to come here (or previously when she still was at her house). She is best behaved with me, but I cannot be her sole caregiver. Just, is all of this normal? Are we doing something drastically wrong here that I can’t see??

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Not normal. Tape a couple of her meltdowns on your phone.

When you see the psychiatrist, have a list of the meds they've tried and the dosages.

What med are they giving her now and what dosage? Have you asked, even over the phone if you can safely double the dosage?
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I just read your original thread. So, you and your mom seem to have brought grandma from VA to CA and are trying to care for her at home.

Sigh.....

You said in one hospital they knocked her out with Seroquel. Did anyone explain that the dosage may need to be adjusted, and that seroquel may be the best choice for this level of agitation and delusions?

Have you looked into a geriatric psych facility? Or just an inpatient psychiatric evaluation?
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I'm afraid that sundowning is really normal for many people with dementia. This really is what people commonly experience and you just need to accept it, to a certain extent. Don't give up trying to at least minimize it, though!

A psychiatrist is a smart move. If at all possible, try to locate a geriatric psychiatrist. Many psychiatric medications work differently in older brains, and that is the specialty that is apt to know most about this.

What kind of doctor is now managing your GM's dementia?

There is some sense in what she says: "she doesn’t care and to let her be and live how she wants to live." From her perspective, it seems like she is being punished, and what did she do to deserve this? Well, what she did, through no fault of her own, is get dementia. Poor dear. If it weren't for that, I'd encourage you to enable her to stay in her home as long as possible. Order meals on wheels. Disconnect the stove. Have a bath aide come in once a week. Have a housekeeper to do laundry and clean once a week. We did things like this to extend how long our mother could stay in her apartment. But with dementia there simply comes a point where that is not possible. Has your mother's doctor said she can't live alone?

The book "Being Mortal" by Atul Gawande addresses the importance of quality of life and well as safety and simply keeping alive, for elders. He doesn't address directly how to apply his ideas to persons with dementia, but I think you would find reading it will help your understanding of Grandma's "stubborness."

I don't think you are doing something drastically wrong. I hope you can improve your situation, but it definitely is not your fault.
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Another thought. Grandmother doesn't like living in your house. She might not like a nursing home, either. But if she has to live somewhere she doesn't want to, a care center might suit her better and would certainly preserve your sanity.
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I'm in a similar with my Mom...she doesn't like change...wants to go home...thank God for ice cream and Atevan!!
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Look into some sort of nursing home care. You're grandmother has dementia with sundowning and she's not going to be happy wherever she is. You and your mom need to take care of yourselves. As long as your grandmother lives with you, you'll all three be miserable. Don't guilt yourself into thinking you're not doing right by her if you move her into a facility. She needs to be somewhere that specializes in dementia related, late in life issues. She's going to be miserable wherever she is. No need for all of you to be miserable with her all of the time.
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Ok so try to be very open minded when reading this. As people age, their intestinal tracts start to deteriorate. The microbial communities decline and this starts the process of declining health. Some people start to become sensitive to the natural preservative in most foods. The naturally occurring preservatives are called “ salacylates”. People can have reactions to these foods in the form of crying and angry outbursts that can last for hours. Please look up high salacylates content of foods. Maybe she is eating something in the early afternoons that is triggering her behavior. Consulting an integrative nutrition specialist can help figure out if she is sensitive to these things. The episode can start anywhere from immeadiatly to 2 hours after consuming something high in salacylates. Fruits are the worst offenders.
So I know if you never heard about this it sounds strange, but psychiatrist know all about this problem. Good luck my friend.😇
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Hi Ema

I don’t agree with people that say this is not normal. Honestly all dementia patients are different.

In your case we have something in common. My mom does the exact same things. She is in assisted living memory care and not with me because we couldn’t do it.

Almost everyday she has a melt down and wants to leave and things she’s been abandoned. From the advice I have gotten here I have limited my calls and visits so she can adjust to her new environment.

My suggestion is to find a memory care facility that you think is good and move her there. A geriatric assessment would also be a good thing to have done. Then take a break, even if it’s a couple days and regroup.

There are a ton of people on this forum with great advice and knowledge. Come here and vent as needed!! It’s super rough and not something anyone expected to deal with. What’s worse is there is potential that we can get dementia as well as it looks like the numbers are increasing.

Good luck and prayers are going your way.
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My mother was showing the same behaviors, starting between 2:00-3:00 and sometimes even lasting all night. And to top it off, she refused any dementia-related medication! Ultimately, we had to take get her into a geriatric psych facility (which was horrible, but made a huge difference in getting her behaviors under control). If they are successful in adjusting her meds appropriately, that might be enough, as my mom is a different person now at night and much more manageable. Unfortunately, we knew that my mom would not continue taking the meds once home with my dad, so we had to make the difficult decision to place her in a memory-care facility. We’re all sad about it, but it clearly has been the best of all the not-ideal options. 

Just a note though. Our healthcare navigator stressed the importance of the geriatric psych facility BEFORE placement in long-term care, as those types of behaviors are not considered manageable even in a facility and could get her kicked out with a black mark on her record. With a history like that, it could make it hard to get her into many other nursing homes or assisted living situations.

And I agree with the above poster that says that this IS normal for dementia patients. My best friend is a neurologist and she told me behavior-issues like we’ve experienced (not the memory loss) are the most common reason that loved ones are placed in long-term care facilities. That being said, just because it’s normal doesn’t mean there aren’t more options to improve the situation. And you may also want to get her checked for a UTI, as that can exacerbate dementia issues and often doesn’t show the other typical symptoms in senior citizens. Best of luck! This is horrible situation for all involved. I saw a meme that I try to remember to give me perspective. “Remember, when someone with dementia is giving you a hard time, it is because they are having a hard time.”
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Doctor now. Check for UTI. Then, Ativan or something strong for agitation. Sundowning is VERY normal for elderly with dementia. My aunt was in a MC facility and EVERY single one of the 50 residents had meltdowns starting around 3:00-ish. They would start wandering the halls and moaning and mumbling. No lie, it was like watching an episode of The Walking Dead. Most would wander and babble. Others would get extremely agitated. Nights were horrible.
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Ema..you are not doing anything wrong. Both of my parents had Alzheimer''s and we could set the clock to their sundowning agitation. We had to place my dad in a small group home (wonderful care) because he became physically aggressive and combative (so sad). Mom lived with us until she died at 95 last fall. The BEST thing I did was get her on palliative care through a local hospice. They come to the house, provide a dr, nurse, social worker, etc. They also did the Alzheimer testing and knew when it was time for mom to qualify for hospice. I see you live in CA and there are these services near you. Not everyone can go into a facility..financially or otherwise. As hard as it was...I have no regrets for keeping mom here. With help from an anti-depressant, ativan, and seroquel we managed through it. (for her, wine for me!!)  Use the 'loving lies'  method with your mom/grandma.  Document her behaviors, educate yourself, and reach out for help. Take care.
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I think each case is a bit different. So id say in your case it is normal. Try to bring as much of her stuff over to your place as possible. Make it look and feel like her room . Try to get an anti anxiety med too. My Mother doesnt like not having control at all . So i try to give her choices she can make. To make her feel she has more control. Ask her if she cant stay in her house .what would make her feel more at home . ( during the day or night)
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Even though we've given it a name (dementia, alzheimers) the truth is, no one knows very much about either condition. Most of what is written is hypothetical, the drugs are dubious at best, most "treatments" don't work, etc. Imagine having a very old dog with rabies who's staggering around the barnyard drooling snapping and biting people. Would there be a team of "experts" trying to "manage" the dog's predicament? I think you see where I'm going. My father is in a psych ward right now because the care home couldn't deal with his behaviour. They call it "agitation"; they talk about "redirection" and "finding a baseline" and it's all a plethora of word salad. Let's call it what it is: Madness. Insanity. Old people often become crazy because they've lived to long; our obsession with "longevity" at any cost has turned old age into a living hell. We can label it, and we can allow Big Pharma to rake in millions on useless treatments, but the truth is - what we know about this disease is minuscule compared to what we don't know. You and your mother should not be spending one more day living with another person's delusions and madness. This disease wastes everyone's lives.
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It's not normal, but it absolutely is very common. And it was everyday for my mother. For Dad it was more an increase of activity, rummaging aroung the house, and generally being more confused, and less able to manage formerly usual activities. And if by get used to it, you mean stop expeting it to stop. But if you mean you can't do anything, then no. You are doing the right thing seeking help for the psychiatrist. You also may have to face that it's time for your Mom to get care in a setting that is better able to keep her calmer, and safe. Good luck.
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Ok, I read that you tried every trick., Have your tried some peaceful music? Its the only thing besides my sitting bedside for hours and speaking calmly that works for us. Thank God for that Alexa thing. Mother's complete meltdowns and sundowning are soothed by Kenny G and his saxophone.
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I agree with obtaining a nutritional consult. Also, really watch her sugar intake. I’ve cut back on giving my elderly mom with dementia/Sundowners any sweets after 2:00 pm, and this has really seemed to help with her confusion and agitation. Watch the caffeine intake, too. This can really ramp up the agitation.
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this is normal with dementia. please buy a good quality lavender essential oil like young living - with a roller ball. about that time of day roll up and down the arch of both feet, at the base of the big toes, and see how that works. if necessary you can also dab wrists and swipe back of neck. we use this for my mom every day - sometimes earlier in the day if we sense she's stressed - and always before bed. basically any time you sense them going into meltdown it has been a blessing for us!
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Meltdowns have been common in our house. My mother has insisted she wants to go home every day for almost 4 years. We are living in the house she bought 24 years ago. She doesn't think it is her house. She doesn't know I'm her son. She has no cognitive ability. She can't remember anything for 5 minutes. She is also deaf. It has been very frustrating. At night when I am tired and want to get some sleep, she starts acting up and insisting she is going home. I can't leave her alone because she will fall; she is not mobile on her own. When I take her to the doctor she doesn't want to come in the house when we get back because she says this isn't where she lives. The last time we ended up at the crisis center. There is nothing I can say or do to change anything. Mostly she gets worn out and eventually goes to sleep. This is very hard on me because I don't get any sleep and many times don't eat either. When we were at the crisis center I hadn't slept for 2 days, but no one really cares how the caregiver is doing. I am just a permanent fixture in the equation. This afternoon Mom was friendly and in a good mood. I left the bedroom to go to the kitchen to put some pots away. I came back in the bedroom 10 minutes later and her mood completely changed and now she is mad at me. When she gets like that she doesn't want to eat or do anything else except insist that someone is coming to pick her up to go home. Usually it is her parents, or other people who are not alive. She is in bed all the time. On better days she sleeps 18 hours a day instead of being agitated and confused.
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My mom was like this for years approaching a decade. At it's height it was bad. Like real bad. It would last sustained for days. Then slowly it petered out. Slowly as over 5 years or so. Now it's rare. Even when she goes ballistic, it only lasts for about 10 minutes. She still goes through all the stages, the screaming and door slamming, but it's all accelerated and shorten. I deal with it now like I dealt with it then. I leave her alone until it's over. That was harder to do when it went on for days. Now, I just go watch TV and wait for the next commercial break. 9 times out of 10, it's over by then.
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When my friend, Beth, for whom I was her POA, started refusing to let people clean her up after she pooped in her pants, I was told I should take her to a geri-psych ward in a hospital to find a medication (anti-psychotic drug) that would calm her down without doping her up. I found a nearby hospital that had an opening and took her there. It took 3 1/2 weeks to find the right mediation and dosage that would work for her and after that it was smooth sailing. She was easy to work with. When her husband, Jim, began sundowning and becoming argumentative in the late afternoon and supper time, the doctor prescribed depakote sprinkles. A light dose of that helped a lot. A heavier dose is usually prescribed for seizures, so using it is not the normal thing to do, but works for him. A good geriatric doctor should know these things, but the geri-psych ward was the best answer. Insurance paid for her stay. I visited her several times there to check on things and found her calmly reading and happy. Everyone seemed to treat her with kindness and respect and someone could tell me about what they were trying with her. I never knew such a ward existed and was happy to find a place like this knowing how to handle dementia patients with such skill. Good luck to you. As we all know, this is very hard to manage in a home. Thanks for reaching out!
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It’s not UTI for sure. And it’s not even like she’s just wandering around moaning and mumbling. It’s like she gets antsy to go somewhere around 3ish. It usually starts off as she had an appointment or supposed to meet someone and then morphs into she has to walk to her moms house this instant because her mom is sick. Or sometimes morphs into she’s going wherever her husband is because she never goes anywhere without him. We have no idea how to ward this off or respond better. I feel like we have tried everything but it always turns out that she’s livid with us for not taking her where she wanted to and we become the good-for-nothing kids and then when we try to convince her to stay/keep her from walking out to the street and eventually we become the terrible children that are keeping her hostage and she never believed that her kids would do this to her. So she resorts to physical aggression if we get close. Haven’t a ton of success with meds but we’re atill trying. She just spent the weekend in the hospital and they tried different meds but are sending her home with the same stuff we had before, just increased dosage so hopefully it makes a difference.
Thanks for everyone’s support, it’s all been tough and venting on here was my own little meltdown haha
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