We all get to start all over again. I can't really imagine anything worse than this so if you have something worse that will make me feel better- please comment! 😅

We just put my MIL in memory care a couple weeks ago. Long before she had dementia she always said she never wanted to go to a care facility, so we did everything we could to keep her in her home for as long as possible, but she called 911 on her home care givers claiming they were invading her house. They took her to the hospital and declared her unsafe to live at home and we had no choice.

I had countless people here and IRL tell me some version of "it's for the best", "it's what's in her best interest", "she'll adjust and be happy". I doubted it at the time and now I know it was all bs. "Adjusting" means she's still miserable and doesn't want to be there, but they've broken her and she no longer causes trouble and apparently that means keeping her drugged.

Maybe we picked a "bad" memory care place, but I don't think so. It didn't seem like it would be like this when we met with them beforehand. They seemed caring. I think that's just want this industry is. It's just so depressing.

This is so hard. Grandma got lost today. There’s really nothing she can do independently anymore. She needs someone next to her constantly. Today I took her to Walmart & I decided to try on a pair of pants. She’s deaf & uses ASL to communicate. We walked up to the dressing room & I signed to her “stay, im going to try on, wait here” I was in there maybe 4 minutes and when I came out she was gone. I asked the lady working if she saw the direction she headed & the lady had no clue. Searched everywhere and couldn’t find her. Her dementia brain is much different than her usual brain. She didn’t used to be super friendly or social but now she will stop and attempt to speak to people and wave constantly. I have to keep her directly beside me or she will engage with any and everyone.

Anyways! I was getting ready to give up and ask customer service to pull the cameras, but just then I caught a glimpse of her in the checkout line. I had put a hat in the cart & even though she had no purse or money, she went through the checkout line and attempted to purchase the hat. I’m assuming the cashier was waiting for payment and their was confusion and she realized grandma was deaf. When I approached, the cashier was attempting to get an interpreter. I approached and said “why didn’t you stay like I told you?” She said that she did stay! I wasn’t gonna argue with her standing there. Just said OK lets go. She could tell I was peeved bc she kept asking if I was ok. It was my fault. Normalcy is gone, can’t do things like that with her in tow and I should have known better. Every day is something different! (Edited to fix typos)

I’m tired of spending it sad and depressed. I think he would get a good laugh out of this so I thought I’d share here too.

And of course, an obligatory fuck FTD!

https://www.tiktok.com/t/ZTUJtfSNC/

Hi all I am 21 years old and my dad died of early onset dementia 3 weeks ago at 59. This all happened very quickly but I feel the same as others in the group about grieving the person while they were alive. I’m trying to journal to get my thoughts out but it’s still hard for me to process. If anyone has anything to help me that would be great

Whelp it’s starting. Enrolled my grandmother into hospice beginning of August, then had to revoke this weekend to take her to the hospital because she was throwing up so much I thought she might have a bowel obstruction. No obstruction, just pneumonia and UTI and colitis and dehydration. She failed her swallow test so now she’s on a puréed diet. She has way more word finding difficulty now and is showing zero interest in eating or drinking anything, which honestly is for the best because when I tried to feed her she mainly just held the food in her mouth. I imagine when she’s discharged home it will be for the final time. Her birthday is end of October, so I do hope she makes it to 80. But I’m at peace if she doesn’t.

I just got off the phone with her. She called me without any assistance. She was weaned off Abilify and we’re waiting for the Remeron to kick in. The paranoia is high, memory is non-existent and no connection to reality. She was crying like someone at a funeral. What concerned me most is she said 7 or 8 times that if she doesn’t get out of there she will kill herself. She even mentioned running outside and stepping in front of a car. I have never in my life heard my mom say such words. She feels like a hamster in a cage, I know and I understand. She’s in a small studio apartment, a major downgrade from her 1300 sq ft 2 bedroom condo. I’ve watched her on camera go from bed to couch to looking out a window that faces another side of the building. And of course she’s locked inside of MC. The other MC residents are largely non-verbal and she has a newish neighbor across the hall who constantly screams “help me” at the top of her lungs. I told her to keep her door closed, but she shouldn’t have to live like that. I don’t know what to do. I called the caregiver line and had them check on her. They said she’s been fine all day. I would go up there but I know I can’t calm her and she will just be more distraught. Redirecting doesn’t work. I could get her checked in at the hospital, but if the caregivers say she’s fine, not sure what I would tell them. But they could certainly keep her for 2 weeks until the new med kicks in. But a hospital is worse. She would have NO freedom of movement and I don’t want her to experience hospital delirium again.

EDIT - I had just posted about her birthday and this hit me out of the blue.

EDIT - One of the caregivers called back. She saw my mom had been crying but said was fine now.

My grandmother and I have always played word games. In the last three years she has lost most of her memory, and one by one the games stopped working.

Crosswords needs old words, and they don't come. Trivia wants old answers. Sudoku needs her to hold numbers in her head while she checks them, and that's gone too. She really tries hard, but I just can't see her trying so hard and not able to do it.

What she still does, all day, is talk in half sentences. Only the needed words. She will read something and tell me in a few words.

At some point I realised that's what newspaper editors do. They cut a sentence down to the few words that still carry the story and call it a headline. She's been doing it without trying.

So I made that the game. A short sentence about something small and good that really happened, like a pizzeria that got eighteen prank pizzas and drove them to the ER. You cross out words until five are left, and the five have to still hold the story. Nothing to remember: every word stays on the screen the whole time, she only has to choose. We play side by side. I read the sentence out loud, she points at what stays.

If anyone wants to give it a try - Long Story Short (https://sheets.works/long-story-short)

I'm asking here because you know this disease better than I do. What would make something like this work for your person? Bigger text? Shorter sentences? No counter? I'll build whatever you tell me. If anyone wants to try it with their person.

As an old army that I was looking for T-shirts and I selected these T-shirts, they were OD brown or mud brown or whatever and I misread that it was not a two pack, but a four pack and I ordered three of them. lol.

And quite often when I wear this brown T-shirt and blue shorts and flip-flops and this ball cap

However, one time I wore a Star Wars T-shirt, and my mom kind of paused and looked at me and she said who are you?

So I’m not a doctor or an expert but ever after I wore the same brown T-shirt because I had 12 or 16 of them and the same blue shorts and the same ball cap

And one time because I told one of her neighbors who also became my friend about this and her favorite response was all these, “well, I just don’t believe you”

So I wore a Redskins T-shirt. Cowboy suck lol

I’m kidding I like the Cowboys also, but I went in where she stood outside of where my mom could see and my mom looked at me and she’s like who are you and then I took off the shirt and the brown shirt was underneath and she’s like oh it’s you?

And as I said, I’m not a doctor, but I would wear the same color shirt and the same blue shorts because I had like eight of them in mind you like they were washed. I wasn’t wearing the same clothing every day. And that helped my mom recognize me.

Everybody with dementia is different but if this helps anybody on this sub, Reddit, I hope it will help you

My mom also died in April 2026 because of the evil dementia she basically lost the ability to swallow food or liquids, and Hospice said you can feed your mom, but we’re not going to because if you feed your mom, she choked to death and the other way as we will have water swans for her and she will pass in peace because she was in Hospice already, and
it made me so angry and so upset

I despise this disease

my parent with Alzheimers has become unshakably convinced that they have been cured of Alzheimers and are now 100% fine and ready to move out of assisted living. They recently found and read a note I sent to their neurologist in their health portal describing in detail dementia progression over the past year (I thought they no longer read the portal because they have no accessed it in many months, but somehow they suddenly remembered how to access it) and they are now enraged at me that I am "lying" to their doctors, telling them untrue information about how something is wrong even though the doctor knows they are 100% fine, and even that I am secretly hiring other "bad" doctors to give them "bad memory" tests that are also lies. They've been having a lot of other kinds of paranoid ideation over the past year (mostly conspiracy theories about the assissted living facility) but this one is a lot of anger directed at me and I don't know how to manage questions about why I am hiring secret doctors (obviously not true) and why I am writing terrible secret letters about their dementia decline (it is true that I did communicate supplementary information to a doctor about things like mismanaging bank accounts that would not come up in a memory test- they just weren't intended to ever find and read that confidential medical note).

Hello dementia reddit. I’m back, and unfortunately, it is not good news. My dad has declined rapidly, to the point where he is throwing temper tantrums when told no, has no idea where he is (when I asked, he said he was in a suitcase) and that his focus is primarily on being a martyr to the world. I’m losing my dad everyday, and he didn’t even know it was my birthday today, and he just proceeded to bitch at me and yell and get aggressive. I don’t even know who he is, I don’t recognize him anymore. I don’t even want to be around him anymore

If you haven't seen this story yet, it's a good warning for those of you who might have a LO not living with you and being cared for by hired caregivers. Make sure all your POAs and legal and financial paperwork is in order.

There's not much doubt what this person did. Inside Edition also reported on the story and has videos.

https://www.wmbfnews.com/2026/08/27/this-is-my-dads-house-daughter-claims-nurse-took-deed-fathers-conway-home-before-his-death/

https://www.instagram.com/reels/Dcre0BkjSrp/

https://www.facebook.com/share/v/1JsMKug6Gn/

MIL (85, dementia, lives at home w/FIL 89) broke her hip and following surgery has been transferred to rehab facility.

I'm assuming she will be evaluated mentally while she's there? We don't know the extent of her progression - any time we ask, FIL just says she doesn't like doctors and won't take medicine. I think he's in denial, and has been covering up her most concerning/agressive behaviors.

Are there any circumstances that would prevent MIL from being released to FIL's care at home? They both have a tendency to fall, and this is so much more than he seems able to handle easily. Could they hold her until either she (1) is admitted to a residential memory care or (2) has 24/7 at-home care?

So today is a sucky day. Gloomy rainy weather, which makes my body hurt. Slept in a bit, then come downstairs to my mom, no shirt, wearing shirts as a skirt. Having to throw all her peed in clothes in the wash (need night time onesies, havent gotten those yet) Not leaving me alone while I try to make coffee and food to take a naproxen for my hurting shoulder (re-injured my left shoulder little over a month ago with a trash debacle). She doesn't understand giving someone space anymore.

I complained to my friend that a whole year no time off, and my brothers are scot free betting that have had days off from work and my friend's solution was to just drop Mom off at their place. Its very annoying when people suggest these things like I already haven't thought of them. I can't just leave her there. I already complained to one of them before that respite resources have been delayed, and they offered I ask other brother if my niece could do it. I did ask, never got a text back.

My older brothers are 52. Im only 36. What makes them think i wanna do this all the time? I don't. But I do it because I will not abandon mom like they have. In truth, they've abandoned me too. These are her born sons, I'm her grandson, she adopted me when i was a baby. It really says a lot.

She has 30 days to find a new spot. She needs to move into memory care, but I just left a bad marriage and needed to out my oxygen mask on first. We are in WA state. Any advice would be appreciated.

Hi and thank you for reading -

On July 12th my mother was admitted to the hospital and the overwhelming mess that is a terminal diagnosis began.

A little back story; I have 3 brothers and am the only daughter. After many years of abuse and demand I had broken off from the family and have spent 3 blissful years with my husband and daughter...that is, until July.

Mom is in the hospital? Suddenly everyone is calling me. Turns out, I am still her POA. I'm the kind of person that believes in Karma, so I have to accept the responsibility.

I'm absolutely shocked how difficult this is. Aside from the train wreck of Medicaid, nursing homes, memory care, bankruptcy, and her hoarder house, I am really struggling with the woman herself.

She has Lewy Body Dementia, the beginning of Alzheimers, and has apparently had 2 strokes. I understand this is not easy in any way. But I am so lost...what the heck do I say? She has tolerance for my brothers but I am the scapegoat once again...I put her in the nursing home. I took her credit cards, her car, her license, her cell phone. She is making clear that she blames me for everything and though I am not engaging, I'm so overwhelmed with the rancor I sleep or cry for hours afterwards.

I am getting her a Raz Mobility Cell phone and am anticipating the chewing I will get for not giving her all her contacts and passwords. She is on social security and so in debt I have to file bankruptcy for her. I am trying so hard to be a good steward, but there is a valid reason I had removed myself.

My brothers are useless in this. 2 are enraged I am doing any of this despite a month of hospital assessment and direction. The other wants to take the guilt from himself and would put her wherever she wanted, not where she needed.

I'm sorry, I guess I needed to vent as well. But I desperately need help handling interactions with her. What do I say? She calls me a liar when she forgets things, pinches/bruises me when she glares at me. I want to stay in the background and do all the heavy lifting behind the scenes but I know she needs me. What the heck do I do?

Thanks so much for reading all of this. I appreciate it.

Sigh. I’ve been dreading this because I’m not sure what to do. I’m happy to just take her to dinner, but it’s her 80th and it’s usually a big deal. And yes, I feel an obligation. Mom is in MC and hasn’t been herself for a few weeks now since being weaned off Abilify. She just started (the behavioral specialist kept rescheduling her visit) an anti-depressant that’s supposed to help with her agitation, worry about her money and car, and the associated distress. It takes at least a couple of weeks to get into her system. Her birthday is in 20 days. The thing is I’m not sure who she’ll be by then. And with how she’s been acting lately (she hit me in the back in front of a caregiver last week after accusing me of stealing and saying she called the police on me), I’ve been steering clear of her waiting on the meds to kick in. But regarding any sort of gathering…

I’m not close to my family. Can’t even stand to look at my aunt anymore after I called her out for abandoning my mom when she was living with me. She lives 10 minutes away. She took my mom to lunch once and never saw her again until I had to check her into the hospital over a month later. She visits my mom regularly, though, so I’m glad for my mom. But my family is fake and it hurts me to be around them.

So not sure what to do.

Seven weeks ago, Dad could walk into a coffee shop, make an order, and pay. Likely without anyone noticing anything particularly off about him.

Three weeks ago, he unquestionably recognized me and, with enough prompting, sometimes knew my name.

Currently, he can't even stand up. My understanding is that physically, he should be able to, but he doesn't seem to understand the concept of standing.

We hoped that his sudden and rapid decline was temporary, pharmaceutically induced parkinsonism, but they now think it's Lewy body dementia and that this decline is a permanent change.

He's completely incontinent now. Obviously.

I'm not good at grieving myself, but I've been doing it for years with Dad. I don't think my sister had, and hearing the pain in her voice today as she told me what the staff told her nearly broke me.

This is hard.

I (26F) have a father (64) who has early onset dementia. I don't remember when he was diagnosed, but it's been a few years now. Over the past few months, we've all seen him getting worse. I currently still live with my parents and still trying to find a place to live I can afford and have it be in a decent area (at this point I might just have to find a roommate). So I've been seeing my father decline everyday.

My mother (61) his primary caregiver. He isn't at the point of not completely being incapable at everything, but he would need help with some basic things such as putting on clothes and other private stuff. I would be downstairs doing whatever, and I sometimes would hear mom going off on dad about something he did or forget to do. I try to help mom where I can with basic things like doung laundry or doing the dishes. If I'm going out somewhere on a day I don't have work (the weekend), I ask her if she needs me to pick up anything for her.

A moment I'm not proud of was one of the many times, my mom reminded me how I need to be more patient with him and in my frustration, I told her how she does the exact same thing and get annoyed with him all the time. She counterargues by saying she's constantly dealing with dad. I still feel really bad that I said that but all I could think about was how she was being a hypocrite. My siblings (36M & 33F) help where they can, but my sister has a family of her own and lives 2.5 hours away. My brother would come there at least once or twice a week to help out. Luckily most of the time I'm able to avoid him.

I just feel like I shouldn't feel upset as I do with what I see and hear almost everyday because I'm not the one taking care of him. He isn't at the point of going to a home, and my sister told me as much at his last appointment (the appointment was near where my sister lives). We both agree mom should try therapy, but mom says she's fine (none of us believe this 100%) and we can't force that. Part of me wants to tell mom how this whole situation makes me feel, but I'm feel she'll probably tell me how she's the one taking care of him and how she should be more stressed. Besides...I don't want to be a selfish daughter who needs to tell her mother all her problems. I already know I can't go to her for my problems anyway.

I just feel I should stop feeling so upset and stressed about it since I'm not the one who has to take care of him. I also feel selfish for wanting to move out even though I've been wanting to for years before it got this bad. But...I can't take seeing this happen to him everyday. I know I'm being selfish with how I'm feeling for this whole situation, but I just wanted to get this out.

I fucking hate this disease and how it's slowly taking my father.

My father is still alive, and in a MC facility now. But from time to time I just chuckle and think that even though this disease is horrible and I wouldnt wish it on anyone in this world... there can be funny moments. My dad has always been a character for as long as I can remember. He always pulled pranks on me and my friends as kids growing up. So it wasn't out of the norm for him to do something odd.

But once the dementia progressed he didnt do things intentionally. He just did them.

The one my wife and I laugh about was a year or two ago when dad was still living with us. One of us was always there watching him no matter what. I ran to town to get parts. When I left dad was passed out on the couch watching TV. Wife was getting ready to take a shower. I wasn't gone 15 minutes and she called me screaming that we didnt have water and she had to shower before work. She said she was mid shower when it just stopped.

I told her go to the basement and make sure the well pump breaker didnt get tripped and to make sure we had water pressure from the well. She called me back a few minutes later. My dad apparently woke up and went to the basement door. Took a butter knife and got the screws out of the door knob(we kept it locked for his safety). He got the door open. Went down stairs and turned the well pump off. She found him down in the basement just turning knobs and flipping switches trying to figure out what did what. At the time she was furious but now we sit back and laugh about it. Luckily he didn't get hurt. She got him back up stairs, and tried to take a shower again. Within minutes he was back at it. This was a process until I got home and kept him occupied while she finished up getting ready.

I still laugh to this day, and joke whenever shes running late for work I'll "don't make me pull a dad and go turn the water off on you"

The biggest thing for me when I was looking to put my beloved mother into memory care and visiting like 20 places

Number one on the list was when I got the tour if I walked in and I smelled old piss or old shit, I would just walk out Because both men and women and memory care facility is deal with urinary tract infections, women more than men. So if they’re not changed constantly, they will get UTIs, which will cause further downgrade in hospitalization and if they’re sent to the hospital because they’re already confused that will cause a further downgrade on the ski slope of dementia.

Room size. Attribute small room or even if it is expensive as long as they’re mobile, it should be the shortest distance between the bed or their lounge chair to the toilet. The further they walk the greater chances they will fall.

Activities are they nursing staff has to get even the most reticent of people to go to activities and I would show up 3 to 4 days a week for my mother, but they knew my schedule which was Tuesday Thursday Sunday because my mother‘s best friend would be there Monday, Wednesday Friday, but I will also show up at odd times

My mom just wanted to sit in her room and die, and even when she broke her hip in in this different care facility, I’ll name that NHC They were great because it was temporary care and this one event coordinator when my mom was in a wheelchair and I was sitting there talking to her and he came in and then he waved me out and he said your mom refuses to go to anything so I said well let’s go in together and I said mom you’re going to this event or this activity and my mom said no the event coordinator looked at me and he said well I can’t make her and I said of course you can. She’s in a wheelchair. How the hell is she gonna say no but I also had full legal and medical power of attorney and I didn’t go in with her../. But at this musical thing when I was peeking through the window, my mom was clapping and singing, and laughing.

So the staff has to be willing to control or even blackmail your loved one to go to an activity… And I don’t mean like you don’t eat dinner tonight it’s like you can have a cookie when you get there or whatever your loved one likes.

Because I did that at the memory care facility also and the staff was good with it

Nightshift. It was a comment an among everybody at this rather expensive memory care facility that all the fall happen on the Night Shift, which is true for my mother also. I don’t think that can be avoided, but learn the hours of the shifts and have a predictable schedule and then show up off schedule.

Monitor medication, especially with Hospice because sometimes people or the staff are so overworked and understaffed they can’t keep up. It’s really up to the loved one to follow up and the staff got used to me asking questions and I said is no offense… And it’s actually something I learned from this somatic to monitor medication constantly.

Make friends with the staff and everybody else in the facility, the residence, and then also the loved ones of other residents It’s a network until a loved one dies and they basically disappear. However, we had an issue with Food at dinner time with I’ll say five of the loved ones. And we confronted the director of the assistant Director and they fixed it.

They knew we were basically a captive audience because it was the best facility in the area but what do you have five loved ones meeting with staff they also recognize a problem that you might go to adult protective services or the media although we never said that they recognized it

Also, as above big friends with the residents. I gave her stuffed animals and I had something called the bunny Club where the male dementia patients actually got jealous and they said don’t you think we like bunnies? So I had to buy more stuffed animal bunnies lol. Because this one lady her name was Melinda and she died of an aneurysm where she is probably one of the most cognizant people, but she just dropped dead. She would pull my mother out of her room to come color with her or go to activities with her.

Because at the next lunch thing like I was over there the next day and my mom kind of had asked with Melinda and she said Melinda says I’m a stick in the mud and I should go to Moore activities and Melinda looked at her and laughed, and she said well, (my moms name) you should. And my mom looked at me for sympathy and I said well I agree with Melinda and my mom so I guess everybody is a guest fee so I’ll go to the sing-along.

. And my mother also needed a lift chair while I was looking for one and they are expensive and this lady Melinda she only had a sister alive and her sister gifted my mom the lift chair save me about $10,000. When my mom died, I passed it on.

She has macular degeneration, one wet, one dry eye. She gets injections every 8 weeks. Last week her left eye was very red and swollen so my sister took her to the ophthalmologist who diagnosed it as dry eye and prescribed eye drops. My sister says it looks "awful." It's beyond awful. My brother sent me a picture last night. The lower lid is bright red, swollen, and drooping. My sister says she also has "goop" in there. She said the nurse put drops in Mom's eye and cleaned out the goop/pus before the doctor saw her. The drops obviously aren't working. The eye doctor said she needs to see a plastic surgeon to fix it and the appointment isn't until mid October!

My brother believes it's irritated because she rubs it all the time. He said she won't wear an eye patch. I'm not a doctor but I think she may have an eye infection, that's why she rubs it, and she needs antibiotics to clear it up. I did some research about eye infections and believe she needs to go to urgent care, not a plastic surgeon.

Has anyone else experienced something like this? Any thoughts or advice appreciated. My siblings don't seem to be hearing me.

Does anyone have any experience with sending your LO to adult daycare? My mother is physically in pretty good shape but the dementia is progressing. She lives alone, has Visiting Angels a few hours some days and me with her two days per week.

She seems incredibly bored and I'm always looking for ways to keep her safely occupied. For a while, I had a "not my job to entertain her" attitude. Sounds mean, but that's just a boundary thing. I'm her absolute circus clown 2 full days/week, lol. She has a great friend as a neighbor. I send her the daily newspaper, activity books, etc. But that still leaves a lot of hours where she watches like foreign language tv or just stares at the walls. I'm afraid this will eventually lead to wandering or her just generally getting in "trouble." (If you deal with a dementia patient, you know the kind of trouble.)

I feel like the boredom is both part of the dementia and also pretty understandable. I'm exploring maybe 2x per week at adult daycare, but she would need full, reliable transportation. I do not know if this exists, but I'm wondering if any of you had luck finding and using a service like that. Bonus points if anyone happens to be in the Lehigh Valley, PA.