r/dementia

We hear this one a lot. By the time most families figure out what documents they actually need, they've already missed the easiest version of getting them signed. The POA has to be executed while she still has legal capacity — that's not a medical determination, it's a legal one, and the bar moves faster than most families expect after a diagnosis.

Sometimes they get it done, but it's close. Healthcare POA first, financial POA second. Both matter and they're separate documents. The rest of the caregiving (meals, appointments, housing) can flex. That part can't.

Anyone else seen this with their family?

ULTRA-SHORT SUMMARY

• My mom’s dementia led to impulsive moves, dangerous long‑distance drives, and repeated episodes of getting lost.
• I obtained emergency guardianship and placed her in Arizona memory care for safety and practicality.
• She’s now unhappy and calls me crying, despite the facility being of good quality and past attempts to live near me failing.
• I'm heartbroken, exhausted, and unsure what to do as I plan my own retirement and future move.
• I'm grieving what dementia has taken from the both of us.

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LONGER VERSION WITH DETAILS

I'm in Idaho and Mom's in Arizona. She used to live in Idaho, but sold her home here at the end of October 2025 and drove to Arizona on a whim in order to "cross the border" to Mexico for dental care. She got an estimate for dental care in Idaho and it was $2,600. But, because of Dementia, she was convinced the cost would be $26,000 and no one was going to tell her differently!

She then purchased a home on the fly while In Arizona. Things went downhill after that. I had to involve Adult Protective Services in her county in December 2025 to keep an eye on her. Mom got angry over that and took off late one night in her car with her 3 dogs.

She eventually ended up in Idaho (700 miles away from her home) and then got lost, calling me to help. I rescued her in a town 2 hours away from me.

She stayed in my city (formerly her city, too) for a couple of days and I tried to arrange for MC here, but it was over the Christmas and New Year holidays, so there were delays. Those delays caused just enough time for my mom's "best friend in the entire world" to convince Mom that I was out to get her money and restrict her driving!

Soooo, Mom got angry (again) and took off in her car (yes, again), this time getting lost in North Las Vegas (about 900 miles from me). She was found sleeping in her car with her 3 dogs in between a building and a dumpster, across from a truck stop.

It was at this point that I hired an attorney and got emergency guardianship. I had to then make the decision of whether to put her into MC in Arizona, or try to somehow transport her back to my city. I opted for Arizona because she had a friend there and she did nothing but complain about being COLD 24/7 while in my city. I figured she'd at least be warm all year around in Arizona, plus it was easier to get her transported to Arizona from Las Vegas than it would have been to get her back to my city.

She's been in MC since January 3rd and in a brand new facility (super nice that I toured myself) as of 2 weeks ago. I just got a call from her (she doesn't have a cell phone, just uses theirs). She started telling me how horrible it is there. That everyone else is "way worse off" than she is. She says they NEVER do activities (I've seen the activities calendar and every day they have at least 5-6 activities planned). I asked her about the huge Easter celebration they just had. She was shocked - "What celebration???" she asked! LOL. The pictures above are of my mom and another resident (my mom is the lady on the left in lavendar). And, of course, the other photos are of the brunch spread that was provided.

She ended up crying on the phone. Saying she couldn't make friends. That the food was "just OK" There is nothing to do but watch TV. She kept apologizing for screwing up and causing her to be placed into a facility in the first place. She cried that she wanted to at least be back in my city, in a small apartment, etc. I told her we already tried that last year when, in January 2025, she purchased a small townhome a short distance from my house. After only 7 short weeks of living there, she phoned her realtor declaring that she hated it and wanted to move and asked him to not tell me. He, of course, told me.

A couple months after that she was so angry with me for helping her and visiting often, that she went to an attorney and removed me as POA and wrote me out of her will (I was supposed to get 100% of her meager estate when she passed - now it's supposedly all going to the humane society, although I have yet to see the updated will with my own eyes). Ugggghhh.

Anyhow, if you've read this far, thank you. I'm just so fucking sad right now. I know if she was here in my city, she'd be equally as miserable and find things to complain about, but I certainly don't want to hear her crying on the phone to me all of the time. I've limited my contact with her so that she can adjust to her new MC, but it doesn't seem to be working.

Not sure if I'm looking for advice or if I'm just venting. Maybe a little bit of both! My husband and I will be retiring soon and likely will not remain in our current city. So, the last thing I want to do is move her here, then potentially move her, again.

I HATE THIS DISEASE.

Sitting down over the holiday, I vaguely remember going over an advance directive with Mom a few years ago. I don't remember exactly what she said, but it was attuned to "if I'm going be a vegetable/zombie/demented, let me die." This was after she was diagnosed with MCI, but before Alzheimer's, and I never followed up with her to be sure she was serious.

Well, she was doing decently well and living independently with assistance, when her colon ruptured and I was called from out of state. I consented to the emergency surgery. Now she's advanced from stage 4ish to roughly end of stage 6, and I'm guilt ridden.

... I did this. I consented without thinking. I thought she still had time and would end up recovering. But, she hasn't. And now I wonder, would she have preferred I let her die? I messed up, didn't I? Selfishly, I love having more time with her, but it's also gut wrenching to see her this way. Would it have been kinder to reject the surgery?

I don't usually swear, but F*CK

I’m 45 F, normal, educated, married, mother of two teens and one adult. I don’t drink or do drugs (I used to drink but I stopped in 2020 because my liver enzymes were high - they quickly went back to normal when I stopped - I’m not an alcoholic it was super easy to stop). I’m a normal boring suburban stay at home mom with no mental health issues or weird history.

I have seen a neurologist several times and my pcp is really really concerned. But I feel like I’m getting no where and I’m hoping to find guidance from those who have navigated similar situations with their loved ones.

It started with short term memory deficits I blew off as perimenopause. It dramatically worsened over the course of a year and one evening after asking my husband the same question 3 times in 20 minutes he told me to talk to my doctor. I’d also been forgetting words and losing what I was talking about mid sentence and or spacing out mid sentence. And having trouble regaining my thoughts.

When I saw my pcp and gave him examples of the severity he told me he it was far beyond perimenopause and long Covid (which he initially considered). He referred me to a neurologist. That was about a year and a half ago. In the time it took me to get into the neuro things worsened. I started having extreme executive functioning issue. I already have adhd and have taken vyvanse for decades and had been “better” on the vyvanse. But now despite the vyvanse my executive function has gone from bad to disabling. It started with bent unable to cook a meal. I had to FaceTime my friend and she tells me what to do. I can’t hold information while considering other information. Also in that time I started having what I discovered later was visual hallucinations. I think I see animals and children all of the time. But like then they aren’t there and I can recognize that it wasn’t real. I also started getting lost while driving evn when going places I go several times a week for years, even when using maps app navigation. I forget to listen to the instructions.

With those symptoms I saw neuro. Normal eeg, normal mri, a neuro tacks cognitive screening in which I scored exceptionally low in executive function, short term memory and one other area I can’t remember and then normal in the other categories. He also did a ton of blood work to rule out things like vitamin deficiencies and stuff like that all normal. He checked ptau which was 17 and I did not have the early onset Alzheimer’s gene. He wanted me to do a pet scan and a full neuropsych eval but my insurance at the time was terrible and it would be thousands and thousands which I didn’t have. So he wanted me to go to an Alzheimer’s clinic to be evaluated but they wouldn’t take me because I’m young and don’t have the gene and stuff.

So I ignored this for several months maybe a year.

Everything is worse but doesn’t seem too bad at times because my family has adapted and I’ve come up with strategies. Like using alarms (which isn’t fool proof because I would set an alarm called “turn off water” but then when it went off and couldn’t remember what water I meant to turn off so I flooded my backyard because when I couldn’t find running water I figure I must have set that alarm on accident), my husband does all the shopping and cooking, my kids are teens and can take care of themselves and remember their own shit. But everything is worse. Most days I don’t know what I did. I buy things and they come and I don’t remember ordering them. I get bad anxiety in stores because I get scared I’ll get lost or lose track of time. I don’t work. I have no responsibilities other than driving my kids places and I pay a few of the bills but recently I’m really struggling with that.

Recently I had a follow up with my pcp and told him my more recent “new” symptom which is that I’ll be driving and suddenly have no idea what road I’m on and what direction I’m going I still know how to drive and who I am and where I’m supposed to be going but I don’t recognize anything around me and I don’t know what direction I’m driving. It’s happened three times and two of the times I had to pull over and figure it out on maps. All three times I was within 3 miles of my house on a road I know well. One time I was just a few blocks away from home.

My PCP low key freaked out and said I need to go back to the neurologist and pay whatever I need to to do whatever tests he wants to do. He says it’s serious. He says I’m saying stuff that he hears he’s 80 year old patients say. Oh also I forgot to mention most my symptoms are better and worse some days with no apparent reason why. Also a couple years ago I started having weird movements with my hands and feet it’s not tremors, I CAN stop it if I concentrate. But when I’m relaxed I frequently squeeze my toes tight to each other or press my feet into each other and my fingers do similar stuff. It’s getting worse recently, my kids started noticing it and mentioned it. I’ve noticed it for a couple years but blew it off as nothing since I CAN make it stop if I focus on it. I can be still if I try hard.

So I’m supposed to go back to neuro now. I’m scared. I’m scared it’s Alzheimers or Lewy body or some other dementia. I think that’s why my pcp got so serious. And im just scared. I’m only 45. And I live in a town with no family and few friends. I also keep forgetting to call the neurologist to make the appt so that’s great.

I guess I’m looking for encouragement or advice maybe there’s something that it could be that my neurologist hasn’t thought about, maybe someone went through something similar and is ok. 😞

ETA I forgot to mention apathy. That’s a huge symptom that started about 6-12 months ago. I don’t really actually care about anything with the exception of a few random freak outs that didn’t make sense. I just care like 80% less than I used to. Which isn’t terrible tbh. My husband says I don’t have any personality changes he’s noticed.

My Mom has late stage dementia. She is losing her ability to concentrate enough or comprehend most tv/movies. She likes pretty scenery with not too much violence. Heartland was great. Can anyone recommend an easy to follow show?

I was watching a Dr Tam Cummings YouTube q&a video and she said that most dementia patients die from heart attack or stroke in stage 5. i cant recall the exact quote and I can’t find the video right now.

does anyone have any research or insight into this statement? Google wasn’t helpful for me. I am trying to map out the general lay of the land for this disease even though I know everyone’s progression is different.

Really simple, I want to build a bedside kit that she can easily access during nighttime wake up's to hopefully keep her in bed rather than wandering (she has a catheter and forgets often that she's attached.). I plan to include a couple of drinks and some easy grab snacks (suggestions on what kind since she often micro sleeps) since food and drink are a big motivation for her getting up. What other things should I have? I was thinking her tablet for solitaire and music and a couple tylonol that I can restock nightly if she wakes due to pain or boredom.

BvFTD around stage 5, highly verbal and okayish memory still. Likes to be extremely independent though can't do loads for herself anymore, hates being treated like a kid. She loves crafting, and animals. Her husband sleeps next to her and most of the time sleeps through her wakings until she drags her bucket.

Hi all, my grandma and grandpa both have dementia. I've been living with them for about a year and a half now to take care of them. My grandma started out doing much better cognitively than her husband, but over the time I've been here, she's taken multiple steps down cognitively while my grandpa has been mostly stable. She is mostly aware that her husband has dementia, but she's never really grasped what that means or that his ability to do certain tasks is completely gone (eg, she still expects him to hang pictures on the wall--even though it takes him hours of standing there doing nothing if I don't step in and do it myself). My grandpa has no idea either of them have it.

They've always had an... interesting dynamic in their relationship, in which she controls both of their lives and frequently makes snide remarks towards him. Over the past couple of months though, this has gotten a lot worse. She'll say mean things to him every night before they go to bed, make jokes about him being stupid, get snappy at him for taking out his hearing aids but then not actually tell him that's the reason she's upset when he asks what he did wrong. They also have a new dynamic where he'll ask her a question she can no longer answer (such as where the vacuum is stored in the house), and she gets rude and snappy at him for asking instead of just saying "I don't know."

It makes me so sad to see how much my grandpa loves his wife. He always apologizes even when he doesn't know what he did wrong, compliments her multiple times a day, tells her he loves her, etc, and she just gives him nothing but vitriol and exasperation back.

I'm very close to my grandma, but things have always been pretty awkward between my grandpa and I--even living together, we still don't really talk much. My grandma has always had a persecution complex, and I've tried to tell her to tone it down before, but she just turns herself into the victim and starts complaining about me "picking sides."

They're going to be moving into assisted living by the end of the summer and I'm worried it'll be even worse between them when I'm not around. Is there anything else I can do about this aside from talking to my grandma, which doesn't work?

I’ve been quietly navigating something I don’t think I was ever prepared for, and I’m hoping to connect with people who understand this world.

My mom was independent not that long ago. She was working, living her life, and slowly started having symptoms that didn’t make sense, mostly dizziness at first. We had no idea what was coming.

Now, everything has changed.

She’s in a care facility, and the hardest part is that she doesn’t understand why. She asks to go home, and I don’t have an answer that brings her peace. Her independence is completely gone, she is non ambulatory and completely dependent on others to care for her basic daily needs. Watching that disappear so quickly has been devastating.

There’s confusion, fear, and moments that feel like I’m losing her in real time.

My sister and I have tag teamed and have been managing this mostly on our own and trying to stay strong, but the reality is overwhelming. Memory care is about $10,000 a month, and I’ve been doing everything I can to keep up while navigating all of this emotionally and financially. We keep hitting walls and so much red tape for any type of help, Unfortunately my mom was not financially stable in life.

I’m not really here to ask for anything. I think I just needed to say this somewhere people might understand.

If you’ve gone through dementia, Alzheimer’s, or CJD with a loved one… how did you cope with the emotional side of it? Especially when they don’t understand why they can’t go home?

Any advice, shared experiences, or even just knowing I’m not alone would mean a lot right now.

Any real advice on how to avoid losing your temper with a parent that has early to almost middle stages of dementia. Sometimes I wonder if a specific behavior she is exhibiting is dementia or just being selfish. The one thing in the house I asked her not to do and she won’t do it for a months. Than all of a sudden, she does it and makes excuses that she was trying to help. I look at her and I tell her you know that you’re not supposed to do that, why are you doing and she continues to make excuses. Then when I get up, she plays the martyr. And she loved playing the martyr.

When I reflect on my end-of-life wife, I used to think it was me who was having a breakdown.

She would bring me a meal along with a snide remark. In the end, it came to me throwing the meal or drink up against the wall or onto the floor because of the hurtful message that always came with it.

I was convinced, or rather my wife convinced me, that it was I who needed help. These times got worse until I realised, as she comforted me in total denial, she had said anything, it wasn't me at all. Little did I realise it was the beginning of her Early on set dementia. I visit her every day, watching her drain away, not knowing who I am, feeling so guilty I didn't realise earlier.

I love her so much, but I feel guilty that I could have helped earlier.

hey guys idk really what im looking for by posting this but throughout the day it hits me that my dad has alzheimers and i just feel like i cant breathe..in complete denial and its been 2 and a half years since his diagnosis and im confsued on where the person i knew and had a close relationship with for 21 years of my life disappeared to...im only 23 and i just thought i would graduate and get my daddy a car and he would be with me but he is changing and this shit hurts soooooo bad. I just feel like im living in an alternate realm and all the color has faded...life doesn't feel like it use to at all. My dad is the best person ever i cant explain how he clicks with everyone and had love for everyone even those that mistreated him....had a smile on his face at all times of the year, that was something i always admired about him even now as he struggles he still smiles....anyways idk im just so out of it since summer 2023 and now my life is passing its already 2026 and each year i get more and more sad. I use to be optomistic and a happy person but idk if i can jump back from this one my dad is my everything i never knew i would ever get to such a low spot in life its crazy.

Recently my LO has started using her bed as a toilet. It's not incontinence. She's continent. She just seems confused about where to do her business. She did this right in front of us no less when we asked if she had to use the bathroom before we went out so we saw what she is doing.

Is this a behavior that can be corrected? If not, is this something a memory care can handle or are we starting to think about a nursing home at this stage?

Im not sure if its dementia but he sleeps mosly all day long, not wanting to go out into the community not shaving not eat that much and has anxiety.

Hes lost interest watching tv, talking about things he used to do and its been the same ever since hes gone off klonopin.

Hes tried SSRIS,SNRIS,and Auvelity but I remember when he used to be on remeron he wasnt depressed and used to enjoy looking up stuff on google but now hes quit auvelity hes on no antidepressant.

What would be the next medication his doctor gives to relive this depression he has?

My nan has alcohol induced dementia she's suddenly become much worse. She thinks the TV is controlling her life. Her TV is always on in her head and if the TV is on the lights won't work, Even though the TV is off she thinks it's on. She sits for hours waiting for the TV to turn off even though it's off. She thinks the lights are off even though they are on. She thinks the TV is controlling the washing machine. She thinks the TV is making her deaf and controlling her hearing. You can no longer have a conversation with her as she tells you to shhh and be quite to watch to see that the TV is controlling everything. She's unplugged and ripped wires out, she's not talking about anything other than the TV and how it's controlling the house. This has happened in the span of a month or so How has it progressed so fast?

Late stage 5 dementia. He went into the hospital with RSV 4 weeks ago and was hospitalized for 2 weeks. From there he has gone to rehab where his is doing PT. He's been in Rehab for over 2 weeks now.

The PT is going ok. His vitals are good.

I would say that he sleeps in excess of 22 hours a day and when he is awake he says nothing or mumbles. He shows zero interest in anything around him - including sporting events that he should be very interested in, news on the war, visitors, or news stories of interest. He is a shell.

The staff at the Rehab center don't appear to have my level of concern. They insist that he has been sitting up, finishing his meals, doing fine. I wonder how that it possible since I visit him multiple times a day for hours and never see a light in his presentation at all.

I know that you aren't doctors, but I need to hear something from someone who isn't only trying to tell me what I want to hear.

So the gist is, my dads favorite hobby has always been movies. He liked a lot of things but for the most part new movies or movies he hasnt seen before are too confusing to him to enjoy. Im trying to gather a collection of movies that hes seen and loved.

He was Born in 1952. So if you could help me gather a list of all the greats between then and the 2010's or so. If you can all help me, id really love to give him all the options so he doesnt have to be so bored watching the same things on streaming services over and over while im at work

Hi . A little back story : I moved over to a different country to live with my grandmother a few years ago after I turned 18. She was in the days of ‘Oh she’s just a bit forgetful’ back then. Three years later she’s wearing diapers and doesn’t remember who I am, her only grand daughter.

I live here alone with her and my dog, my mother lives abroad and comes over occasionally to help out (could be for two weeks in a month and then a break of a month or every weekend for a month it depends). Last September I agreed to give up hours at my job and care for her on the weekends since we had a weekday carer coming in.

Silly me thought this would mean I would have more free time to go out and not be trapped in my menial college weekend job- I was wrong.

I have to clean up her defecation, feed into her delusions to get her into bed or anywhere for that matter, shop for the house, manage her money and medication and also try and be a normal 21 year old. I used to be a party animal, as a 21 year old should be, but now I can’t be that person anymore because she could wander during the night or she might refuse to go to bed it’s exhausting.

My mother is a bit disillusioned as well- she’s convinced my nan is a blessing and that she could be way worse and blah blah and that makes me feel guilty for struggling with this.

She’s hard . It doesn’t matter that she’s not violent- she’s anxious and defensive and sometimes rude.

I don’t know what to do. If I decide I’m not doing this anymore my mother will have to quit her job to come and care for her I am the one eveeyone is relying on but I can’t do it anymore. I want to be a normal 21 year old.

Any advice ?

My husband in pt rehab. He has midstage dementia. I think they are neglecting him. I call he accidentally hangs up and the line busy for hours.

I'm 60 yo F and knew something was wrong so when I saw they were doing trials I self enrolled. And I qualifies. Yippee. Problem is I haven't told my PCP and the infusions start today. I think it's a combination of fear and denial. Obviously I need to tell my doctor. Could doing this trial put me at risk of being denied care if for any reason I change my health insurance? What do I say to my doctor who I actually barely know.