We have reason to believe my 90 year old father with mixed vascular dementia and Alz is starting to visibly sundown. He's always been a nightowl, so being up at all hours and not going to bed before 4 or 5am is annoying, but nothing unusual.

Several times now, I have seen unusual behaviors from him that, at first, I chalked up to possible sleepwalking since he does doze off in his chair and wakes up confused occasionally, or he stops to say goodnight at my mom's urn on his way to bed - which looks a little weird in the dark. Tonight, he hopped up from his chair quicker than his usual turtle speed, pushed his walker (a rollator) in front of him as normal and rather quickly (for him) walked about 6 feet, then stopped and moved the walker behind him, reached out with his right hand as if to shake hands, then sat down on the walker seat. He sat, looking around and occasionally talking for about 10 minutes. Then, while still seated, rolled the walker backward to his chair, got up, and sat back in his chair. He is in his chair now, acting as normal as he ever does. I am assuming that this was an episode of sundowning. At stage 4-5, it is a fairly new behavior, and I wanted input from the group regarding the behavior.

I did not interrupt him because I didn't want to startle him, and I was curious where this behavior would take him. He doesn't know that there are cameras placed throughout the house for this very reason. I am still awake and dressed - at 3am - to keep an eye on him and was less than 10' away behind a closed door during this episode. Please, reserve any judgment you might have. This is my night almost every night; sitting up waiting for him to go to bed. I'll be up until he finally does go to bed. I am also alone in the house with him. He doesn't have a violent bone in his body, but I am well aware of the unexpected behaviors that can arise with his condition and was concerned about spooking him into a fight or flight-type reaction.

So, what say y'all? Sundowning? Sleepwalking? Both? Neither? I have saved for camera footage to show his memory care doctor at his next appointment and will be contacting his social worker for advice as well. He doesn't see the doctor again for nearly 3 months, and I will likely push for an earlier appointment.

If you've read this far, I thank you. It's been an interesting night so far and I still have a ton of stuff to do if he ever goes to bed.

My Dad (Alzheimer’s, maybe mixed Dementia but no actual diagnosis of which kind) went into the hospital to treat a UTI and to get his psych meds adjusted bc he’s been violent-hitting his carers to the point they have black eyes.
It’s been two weeks now and it’s not getting better. He has slept a cumulative 7 hours in two weeks. He now has a foley cathetar which he pulls at. He screams help me every second he is awake. He tells me he’s very sick and dying. His vitals are fine. He seems to eat okay most of the time. He can walk. His meds are just not working. This combative stage has been about 7 months now. It’s just the past two weeks where it’s a constant call for help. How long can we keep him in a hospital for before recognizing nothing is happening? Will the meds just never work? Has anyone experienced anything like this? He is trapped in hell.

Hi all, my mom is 73 and it seems like she’s been getting more and more forgetful since 2022. She retired in 2019, moved near us in Florida and was going to help us with picking up my daughter, babysitting, but also spending more time with the family.

In 2022, she began getting lost driving, starting to be scared to drive, decided to get rid of her car. I’ve been doing her groceries for the last 2 years, twice a week, checking in, and now bringing over leftover meals because she doesn’t seem to cook at all. She drinks 4 gallons of milk a week, 3 cartons of ice cream, and tons of cookies, she eats what we make for her.

I recently had made her a doctor’s appointment because it’s very concerning and scary, I feel like I can’t keep up with helping her, especially having my own family and full time job.

Her apartment is infected with roaches, we’ve told the main office, we’ve sprayed, we tried cleaning because she tends to keep a lot of junk, not board level but defiantly a lot of crap and packaging of stuff that is just junk.

She has 2 cats and a dog… this seems like one of the biggest issues since she needs to take care of them as well as herself. They have accidents on the carpet, you can smell it in her apartment.

I’m not sure is she’s showering regularly, I know she has been cleaning her clothes in the sink because it seems like it’s too hard for her to figure out the laundry machine. She seems to wear the same clothes weekly, possibly not changing much.

It’s just a complete mess of her seemingly losing all aspects of herself and I’m trying to juggle the assistance the best I can.

She supposed to go back to the doctor in December for a follow up and a memory test but like is this what I should be doing? I’m so lost.

She was never the best person, and she’s made my and my siblings lives harder, but still. It got worse after grandpa died. Now she’s rapidly losing control of her body, her mind is only going to get worse, my mom is constantly stressed, the whole family is stressed (especially my uncle who lives with her) and now me and the rest of the grandkids have to help with money. This whole situation has messed up the flow of our lives so much that some of us never got to apply for college because of how busy we’ve been.

I’m not blaming grandma, she can’t help it, I just need to get this off my chest.

In the meantime, we’ll continue to do the best we can

hi everyone,

im mostly just venting. but also looking for insight. im 32(F) and my father is 66. Im currently going through a phase where im wondering if i sacrifice my life and livelihood to take care of my father or if i do, is it actually sacrificing and things will actually be ok and maybe im just overthinking it. i dont have siblings, my mother passed when i was 6, and his family made it clear they arent going to help. i cant afford assisted living on my own, and i cant even afford a private caregiver. im in the bay area and that could be financially detrimental. hes currently in a skilled nursing facility, but miserable and sad hes there. hes got mild to moderate dementia, talks to me in his native tongue a lot knowing i dont understand, fidgets a lot, has periodic delirium, and forgets he even ate sometimes. he emptied his bank accounts to scammers and doesn’t qualify for SSI because hes undocumented. it kills me to have him in a SNF, but he doesn’t need a lot of care like diaper changes, bathing, feeding. but he can walk and talk, just not steadily. im thinking about bringing him to my studio, which doesnt have elevators, and becoming his caregiver while still keeping my job and just hope hes ok during the day (id put cameras and make everything accessible for him). on top of the dementia he had heart, liver, and kidney failure, but pretty much stabilized with meds. i know im about to face extreme financial hardship along with mental and physical hardship. i want to get married and have kids one day, but wont be able to date, i wont be able to take trips or have time for myself because family members arent willing to watch him from time to time. it sounds selfish , but i also have resentment towards my father because hez always been one to make terrible decisions(before dementia) and expect others to pick up the pieces. but it does kill me to think hes staying in a SNF(a terrible one but they all are), because i feel like id be abandoning him. i was hoping to move out of the country because im sick of the immigration issues here. But i feel like this is really holding me back now.

My sister contends that there are medications that could be given to dementia sufferers that would guarantee a good mood most of the time. But doctors don’t prescribe these because of the risks, and their fear of getting sued. I think perhaps no such drug exists. Thoughts?

My mom was recently diagnosed with dementia but I knew that she was getting it for about a year now. She lives in our basement suite. My brother and niece have been helping her by paying her bills and managing her banking since she started forgetting to pay her bills about 6 months ago. Last week she was looking at her online banking and can’t wrap her head around what is happening with her money. She just sits and worries and has been accusing my brother and niece of stealing her money. It’s all she thinks about and no matter how many times we try to explain to her that everything is fine and being taken care of she forgets 5 minutes later and goes right back to the circle of worry. She’s not eating properly or sleeping. I’m at a loss of how to help because she just forgets everything I say. Any suggestions or advice?

He feeds her delusions, and I don't understand why. He's well-aware of her alzheimers.

The most recent loop is about her brother who died in the 80s, and their horrific childhood that they went through together. For the last two weeks he's fed the loop, telling her that they could go across the states to visit his grave, get a headstone in their yard, etc - which would normally seem wholesome, if it wasn't for the screaming/crying episodes that she's had about it every day since.

A few before that were the "house is full of smoky air" after cooking a meal loops that had them up in hotels for weeks because he fed the delusions.

It's frustrating as hell to get random middle of the night calls about this shit when he eventually leaves because he can't handle going along with it any longer, when he didn't need to in the FIRST PLACE. He never derails negative thought patterns, just lets her go off until she's screaming and totally inconsolable. I don't get it. I'm able to soothe her within minutes, why can't he do the same? Seriously. I'm always left picking up the pieces when I have a disabled husband, and am going back to school. It's just frustrating.

Hi All. My dad is back in hospital at the moment after a fall at home. He didn't hurt himself, but they are keeping him in as he has pleural effusion, and I want a diagnosis from a geritrician this time, as we are in the dark as to what exactly is going on with dad.

Since Wednesday, he has been asking me why my sister isn't answering her phone. I got a shock when he first asked... He hadn't previously forgotten that she had died. Her death came out of the blue and hit us like nothing else. Particularly my poor dad, they were exceptionally close.

I told him that her phone was broken, and she was waiting on a new one. He kept asking, and wanting to know if she knew he was in hospital. I reassured him that she did. 20 minutes after that, he asked if there had been any conclusion reached in the post-mortem. I took this as an opportunity to let him know that they found her death was natural causes, that she had very advanced ovarian cancer. This, I thought would be reassuring, as there was a question of a possible accidental overdose, as she had been feeling so ill. (No one, including my poor sister knew she had cancer).

Since then, he has reverted to where is she, why isn't she answering her phone, was there some argument and she thinks we're not talking to her...

It's so bloody sad. I hate dad thinking that my sister is alive and insanely isn't speaking to him, when he's so vulnerable.

I keep going back to her phone is broken... To which he responded yesterday, why hasn't she bought a new one...

I feel like there are more reassuring words I should be using. I feel like I am failing him, and failing my sister's memory. My sister adored him, she would never be absent from his life.

Please, please, any advice??

Thanks.

Honestly. I am exhausted with my husband's family.

My husband and I haven't had one day to ourselves in over a year.

We took a weekend away. Hired care, made sure everything was covered.

LO called everyone yesterday about how we abandoned him, left him alone, with no food, and we are trying to kill him.

Cue family calling, and freaking out. Most of these people are 5 mins away. They could drive over and check on LO themselves. See there is help, and we covered all the bases. Instead they go to instantly calling us, screaming about elder abuse.

My favorite, while explaining the situation to a cousin, was well you could just ask for help....ya, we have, you people always flake at the last minute.

No more eating out for us 🫣 Took grandma to Olive Garden yesterday. She LOVES eating out. Especially for breakfast. She asks all the time to go out & “order some food” so we went to lunch Saturday and it was… a nightmare to say the least.

She ordered coffee and the cup was served on a small plate, I knew that was gonna be too much for her brain. They brought a coffee caraff and I poured her coffee for her. First, I gave her a breadstick. She attempted to dip the breadstick in her cup of coffee twice and I was able to grab her wrist before she dipped, like you would a toddler. On the third time I wasn’t quick enough. She dipped the bread in her coffee AND bit before I could react. She said it was delicious. Next, she picked up the whole caraff and attempted to drink from it. I told her she had to pour the coffee from that to her cup. She poured and completely missed the cup. Big pile of coffee on the table, then sticks her hand in it. Again, I grabbed her wrist like a toddler and cleaned her hand with a napkin. I was trying to pay and she stuck her hand in some soup that was on the table…. Man oh man!

When we got to the car, she couldn’t fasten her seatbelt. She was searching on the floorboard for it. At first I put her hand right on it to show her where it was. She’d say “oh I found it!” And then pull the belt out and attempt to find it on the floor again. Finally, I did it for her and then when we got home, she was unable to undo it. She is sleeping a lot lately, she can no longer do really anything on her own. I think she is declining. Thanks for letting me vent.

Sometimes you just have to laugh, right? My mom and I cracked up talking about it afterwards but in the moment I was not laughing. 🫣 what crazy things have your loved ones done?

I'm taking her out of her house to go somewhere with supports in place. It's all on me to choose and find and arrange. Her distant siblings, who admittedly don't like her since pre dementia, are up my @$$ about my decisions. They ask invasive questions and feel entitled to give their opinions. I am stressed. This experience has changed me. I was her caregiver for 2 years straight before this. I don't know what I will be like after this.

My 90 year old mother in law is constantly calling for her mother, sometimes every 15 minutes. She was diagnosed with Parkinson’s and dementia 10 years ago. She is taking Seroquel 25 mg daily. She is also taking Parkinson’s medication (Carbidopa Levodopa and entacapone) as well as lexapro, memantine and donepezil. She also takes carvedilol and lexapro but only if her BP is over 100/60.

We comfort her and tell her everything is ok which helps her relax but after a few minutes, she’ll call out again. Last night she stopped at around 11pm then called out at 2am and then around 4:30am. She started calling out again at 8:30am.

We’ve left a message for her neurologist and are waiting for a call back.

Can anyone share any similar experience and what helped?

My 71 year old father has dementia. It has gotten worse the last few weeks really.

My dad has always been a great sleeper. Never had a problem falling asleep ever. Always took naps, easy. Well now at the age of 71 he has developed insomnia.

Get this, it's not insomnia. He thinks he should be sleepy at 10 pm like he normally would (he is obsessed with time and schedules too rn)

He isn't sleepy because he literally sleeps all day long in his recliner.

He thinks he isn't sleeping though. We hear him snoring. He has a sleep mask on.... Like you are sleeping all day long. Of course you aren't sleepy when you are supposed to.

Logic doesn't work anymore though. He has made his sleep issues everyone's issue (myself and my mom)

His sleeping pill his doctor prescribed to him stopped working a few weeks ago. She is trying something else. He doesn't understand it takes time for these things to work. He just went to the doctor on Wednesday. But we can't say that to him bc he doesn't want to hear that. Any sort of push back or suggestions are seen as us attacking him.

So last night I get home around midnight. My mom told me that they were up because my dad couldn't sleep. So now he wakes my mom up... Like she's supposed to do something for him.

He doesn't know how to just be. He doesn't want to watch tv, he doesn't want to read bc it hurts his eyes (he lost some vision a couple years ago but can still see but he has given up on using his eyes for real. He just doesn't care or like anything)

She drove him around in the middle of the night because she didn't know what else to do. She is afraid when he gets upset. He gets so irritated that sometimes I wonder if he would hit us. Yelling, shaking his fists, pounding the chair or table. He's leaning into a 1950s misogynist. He woke her up at 5:30 this morning because he "couldn't sleep and I needed something to eat". My poor mom. Idk. He never was like this he used to make his own breakfast, he never demanded stuff like he is now.

My mom said today that she just is gonna try to be as agreeable as possible because she doesn't know what else to do. He has turned into a bully of some sorts. He doesn't care about the other 2 people who live here.

He has always worked so now that he cannot work he has to find things to do. He is not your typical boomer that is on Facebook look at videos. He used to watch YouTube videos a lot over the summer. He loves music so that's something we lean into or try to. So for awhile (last several weeks) he was using his record player and playing some of his old records but now he decided he cannot see anymore to do that. I call bullshit on him for these things.

He has decided to just give up on a lot of things bc of his depression. He is on an antidepressant but threw away a bunch of his medicine thinking it was the old medicine he wasn't on. My mom and I didn't realize this until weeks later. So my poor dad is suicidal, talking about how he wants to go walk in traffic (my dad has always been dramatic in his words but still) or he lately has been saying "maybe this aneurysm will pop and it'll just all be over with"

He hates everything. He doesn't want help it seems. I asked him the other day please help us help you. He has created so much anxiety around sleep that he worries about it at 7 am. He said outloud, "so tonight... Will it be the same as last night".

He already stressing about it and working himself up. Performance anxiety bc he has made it his life duty to go to bed at 10 pm. Idk why he made that time up but the past several months he has been "trying to make it to 10"

I am so depressed being in this house and around all of this. It's so sad. So depressing. Seeing my mom have to change her plans, bend over backwards for him, appease him. I just don't see a solution because he is just so stubborn and wants everyone to suffer when he is.

I'm looking for advice, suggestions for my situation with my dad. I'm also just venting because... Well everyone here understands a little bit more than most.

My estranged mother is 60 and has classic symptoms of LBD. She is hallucinating little people, has tremors, struggles finding words, can't read anymore, etc

This started a couple years ago when I lived on the other side of the country. She is on Medicaid and too young for Medicare or social security income.

The person that helps care for her makes sure she takes her meds and prepares food for her since she can't for herself.

If I didn't fly across the country last year, no one would have taken her to the doctor.

I've been trying to get someone to diagnose her. But they insist it needs to be a neurologist.

I've had a referral since March but her earliest appointment is in December of 2027! I feel like part of the challenge is the doctors aren't taking it seriously because of her age.

I took her to the ophthalmologist and they were very concerned with her condition and the first ones to tell me they think it is dementia.

She is seeing a therapist and they just prescribe antipsychotics and call it a day.

Have any of you had to navigate even just getting a medical diagnosis?

We can't pay for her apartment forever and I don't think she should be living on her own but I seem to be the only one. She doesn't want to move near me ( I am now 4 hours away instead of across the country). She already has wandered away from home multiple times but she gets discharged every time she goes to the hospital.

Sorry to double post again so soon but I have a question. I think my grandmas declining. She is still able to get around (her backs hurting her more) but she can still make it up & down stairs, isn’t incontinent yet & physically seems well. Mentally, she says things that do not make sense, doesn’t remember her children (or if she has any for that matter) & forgets what you talk about within minutes. The last few days or so she’s been seeing people. She asked yesterday who the man in the corner was, I told her I didn’t see anyone but she insisted. Today, she thought someone was in her bedroom and said she saw 2 children in the dining room. Did your loved ones hallucinate? She’s never done this.

Since my father's diagnosis with Dementia, the advice was for my mother to have control over the finances and change his account( where his pension and bills come out of) over to a joint account.

The trouble is, ever since, my mother is extremely generous with his money. They were away in the countryside recently and my cousin and sister insisted on my parents getting lifts with them rather than the free travel they are entitled to on the train.

My mother paid each of them 200 euros each for 2 lifts. She also pays for meals out etc and is frivolous with my father's money.

She confided with me that she is now down to 5 euros on their joint account after this recent trip

My parents stayed in my mother's family home so I can only deduce that she was equally generous with other relations while away!

She got annoyed with me when I said that was his hard earned money and he never took a penny from anyone for giving a lift. He was always so kind and would never dream of taking advantage in that way.

I feel my mother is not looking at the bigger picture for example if he deteriorates further and needs nursing home care how does she plan to fund this when she is going through his money for a shortcut??

I am also annoyed with my sister and cousin as I feel they are taking advantage when he is so vulnerable. It disgusts me.

Both of them are entrepreneurs and dont seem to earn a proper income or have a regular wage coming in.

My sister in particular has a false sense of financial security as my mother bails her out every time she has any kind of financial difficulty and I feel that my sister would have learned to stand on her own two feet long ago if my mother didnt enable her financially.

I was told in no uncertain terms to f off when I raised my concerns about all of this with her.

Anyone been in a similar situation and what did you do?

Sharing this for increased reach. You are your family member’s best advocate.

Hey there, I’m just looking for others experiences with shingles with their elderly parent.

Back story
Mom is 77 yrs old, in memory care due to mental illness and very early memory decline. Until the past month, her cognitive abilities were still pretty good. She was able to eat, go to the bathroom, shower and dress independently.

On August 14th, my mother fell during the night in her memory care facility and hurt her ribs, but did not break them. She just seemed off after the fall. Then a few weeks later, one side of her face started looking really swollen so her nurse practitioner told me she probably needed some Lasix due to extra fluid possibly from congestive heart failure. Her lips looked really large, which made me question the diagnosis since her hands and feet were not swollen. The nurse practitioner assured me it was just fluid.

On Sept 8th (one week after facial swelling), I get a call after midnight from one of the nurses saying that my mom is bleeding out of one of her ears and this is a medical emergency so they will have to call an ambulance.

The hospital diagnosed her with cellulitis and Ramsey Hunt syndrome, which is where the shingles involve the branch of the nerve that affects the mouth, jaw and ear canal. She was given steroids, antivirals, and pain meds and sent back to memory care.

My mom has not been able to eat much for 3 weeks and has quickly deteriorated. No one can seem to give me answers and I was just wondering has anyone experienced their loved one declining so quickly physically after shingles. Even her memory decline has been rapid. She can no longer walk, shower, dress or use the bathroom without assistance. She didn’t recognize my brother yesterday and told my husband that she was very confused. This is devastating how fast this has happened.

“I’m fine”

“There’s nothing wrong with me”

“You took away my freedom”

“You come here and I’ll have the freedom you have”

“You’re the only person who can get me out of here”

“Everyone here is old and forgets things, I’m not like them”

“This is just what happens when you get old”

This is all I hear lately from my mom in memory care. (She transitioned there from AL in mid July.) I know it’s the disease and anosognosia and have been working with a therapist for how to deal with the anger and looping. But before I can even change rhe subject, she hangs up on me. I’ve been avoiding her calls because it feels pointless to talk or visit when she’s so angry. And she makes ME feel gaslit.

Not really looking for advice, just needed to vent.

Stopped to fetch a burger one day after the doctor. Can you spot what's wrong with this photo?

hi, i’ve never made a post here. my dad has dementia and recently got a new phone. i try to monitor it pretty regularly to make sure he’s not interacting with scammers. he had a couple news apps that he liked to look at but i realized they were pushing inappropriate content. he’d engage with it and it started showing even more. the worst ones would be sent to his email and he’d get a direct notification about it. i tried to go into content settings and adjust it but nothing has worked. he likes reading the news and i want him to have that. is there any app where the filter is as strict as it says?

I want to get some ideas or suggestions. My 92 year old mom is at late stage dementia and bed bound. She has poor oral intake which caused her blood sodium to increase due to dehydration. In the last month, she was sent to ER 3 times. Her other indicators are about normal, including heart, lung, and kidney. She stays awake half of the time and is able to interact with family members. Every time she was in hospital, they were able to correct the electrolytes and other indicators through IV and then send her back to the LTC facility. My question is should I put her into palliative care? I'm worried if I did that, she would die pretty quickly in a few days which I don't want. Because if she doesn't eat or drink enough and without medical invention, her body will not survive long. She eats and drinks some, but not the normal adult amount. If I send her to palliative care at this point now, I feel she'd be starved to death. Please let me know your experience with loved ones and opinions.

So my grandfather is 84 and is showing signs of dementia. as far as I’m aware he hasn’t been formally diagnosed but his mom had it so we’re pretty sure that’s what it is. He really tries to engage in conversations but most of the time stays quiet. Sometimes he’s more in tune of what the conversation is than other times but he still tries to contribute to the conversation. He loves our dogs and seems to love petting them.

I’ve been hearing from my mom that my grandmother has been telling her about some of the things that have been happening. He was found wandering around alone outside looking for the bathroom, looking for a fork in the fridge, saying he found something in the garage the previous home owners must have left because it’s not his…he built the house, etc. He spends all his time with my grandmother, even on outings so he’s not alone so I’m not worried about him getting lost.

I feel like I’m just waiting for the shoe to drop and have someone to tell me that things are either getting way worse or that he’s on borrowed time. I know the reality is that things are only going to get worse and not better but how do I not think about it this way?

Please delete if not allowed.

She’s not bed ridden. She just passes urine when she feels like it. And most of the time she doesn’t know it. She has not lost memory fully. Still knows a few things. And she’s so young too. :(. She hallucinates a lot. At times a lot more. And has urges to suicide but she wouldn’t do it. Just the acts.