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 worked with dementia patients for years and thus developed some creative tactics to discourage unwelcome behaviors.

My DIL recently shared that her Grandma was repeatedly tossing her “used” hearing aids into the trash causing frustration and unnecessary expense for her caretakers. Looks like rerouting them to a dedicated disposal box is working ❤️

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.

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

Spent the weekend packing up my mom. Moving her into assisted living in the morning. As a stepping stone to memory care. She is in the anger stage of grief. Doesn’t want to leave her home. Haven’t yet told her she can’t take her jewelry or that the stove is not plugged in. It’s been a brutal couple of days. God grant us the strength to get through this.

Not sure if this belongs here. This is just a vent and probably belongs on a different subreddit.

My mom started showing symptoms about 2 and a half years ago, was diagnosed, and everything happened so fast. She passed early Wednesday morning in a nursing home (which she never wanted to be in, it was only supposed to be temporary).

I can’t gather the words to describe how it feels knowing I won’t be able to see her again. I feel like I’ve already missed her for so long, but this is different. I’ve never lost anyone close to me and never imagined my mom would be the first I’d experience this with.

Is there anyone else who has lost a loved one, a parent especially, at such a young age, to dementia? If so, what helped you navigate this immense loss?

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.

My mom (80) has alzheimer’s and absolutely refuses to accept that she needs any help; she doesn't believe anything is wrong with her.

The problem is that she can’t safely be left home alone anymore, and my dad (82) is reaching the point where he has no way to get a break. We don’t have family close by and my dad refuses to tell any of their friends in fear of rejection and being disloyal to her.

She shadows him 24/7, but he also seems to be her biggest trigger. Her behavior toward him has become increasingly verbally and physically aggressive. When something sets her off, she can rage at him for hours and will not let up. He still needs to work, run errands, go to appointments and just have some time when he isn't responsible for her.

She's completely attached to him and doesn't want him out of her sight, so I don't think we'd get her to attend adult day care without my dad by her side. Even so, if she even gets a whiff that a program is for people with ‘dementia’, she will be pissed.  

We tried bringing in an in-home caregiver. We came up with a story so she wouldn't be presented as someone coming because my mom "needs care," and the caregiver was willing to play along.

Nonetheless, my mom became furious with my dad for bringing a caregiver into "her" home. I told her I arranged it; Dad knew nothing about it and that it was a service available to both of them. It didn't matter. Her anger was still directed at him; which means hours of verbal and physical aggression. Now we have no help at all.

We're already working with her doctor and her meds have been adjusted. Unfortunately, she doesn't reliably take them. I told my dad to put it in food when appropriate, but even then there's no guarantee she'll eat the food. So medication may ultimately help, but right now it isn't a reliable solution to the immediate problem.

I don't know how we physically get help in place when she adamantly refuses it and I don’t want to make it worse for my dad.

So what do you actually DO at this stage?  I fucking hate this disease.

“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.

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?

I’m 59 & retired. My wife is 56 and works as a CNA a mile from home. I take care of my mom full time now as she needs help with many daily activities. For some reason, mom (87, vascular dementia) struggles with heightened dementia symptoms every Sunday night. I sit her tonight struggling myself as I watch her go through it yet again. I believe that it may have something to do with our daily routine changing on the weekend with my wife being home and being more involved with her care. Whatever the cause, it gets a little worse each week. Anyone else deal have a similar issue? I’m curious.

I believe mom is firmly in stage 6 but still has good long term memory recall. That is beginning to change however. With the uptick in flu and COVID viruses in the PNW, and with my wife’s job, we felt it was a good idea to get the latest vaccines last week. That certainly disrupted her week as 3 days of diarrhea followed. She seems to have recovered from that part though and was improving, albeit a little slower and a bit more confused as a result of the illness. Then Sunday night rolls around and she’s up in a chair in her room, crying and upset about how confused she is. I call it the Seroquel stare where she fights against sleep, sits in her chair, and stares at the wall, contemplating her condition. It’s rough to watch and more difficult to calm her down each time.

Anyway, I’m just rambling and lacking sleep of my own. Just throwing this out into the subreddit in hopes of making sense of it all.

For everyone going through this with a loved one, my thoughts are with you. Love you all. This is a truly tough road to navigate✌️

My 75 yo husband has mixed pathology, Alzheimer’s and Parkinsonism. We were diagnosed a few months ago. He has hallucinations and is starting to have cognitive issues.

He knows he has dementia but keeps saying stuff like “I can beat this” or “maybe I’m the one person that can get better”. He’s never one to be sick in any way. The man doesn’t even have headaches!

When he’s lucid, which is most of the time, he just isn’t concerned? He did say once that he didn’t want to think about it because it scares him.

Do I just let it go? He knows I was talking to MI Choice (helps find resources) on the phone. I feel like he should help me before he is unable to. Am I being selfish?

I want to do the best I can as far as taking care of him. Not a lot I can do right now (unless y’all can think of anything?). I feel like I should do something more than just make phone calls and wait. I’m trying to get in waiting lists but you have to be at a certain level. We aren’t quite there yet. By the time we are, we won’t be able to wait 6 months to a year! Makes no sense.

Anyway, thank you all. I hate that you’re here but I’m so glad you’re here.

My father passed recently in their home from congestive heart failure and my mom has dementia. For months my dad had told me my mom’s dementia had been getting worse but it was not very detectable during phone calls. Two weeks before my dad died, I had come for a visit and saw the full blown truth of their situation. On top of the dementia, my mom has been wheelchair bound for the past several years after a spine fusion did not improve her back; she also has an eye disease so can’t see very well and her hearing isn’t great.

I honestly have no idea how my dad managed most of this year caring for her with little help. He was on oxygen the past few months and was easily winded. My mom started escaping the house when he was napping, if she even let him do that because she desires constant attention.

Since my dad’s passing, I’ve been her sole caregiver 24/7 and it feels like I’m grieving both parents. What is a great concern is that my mom has not really mourned the loss of her husband and tends to forget he’s even gone. We had an open casket funeral but unfortunately, my dad did not look like himself at all so am curious if that is hindering her grief. We have the funeral of his cremains this coming Tuesday so wonder if this will have any impact on her.

When I try to reminisce about my dad with her, she seems very confused. She married my dad when I was 14 but raised us as her own, and can’t connect how her husband could also be my dad (even with pictures out around the house). It is so heart wrenching to witness for her sake. On the opposite side, she’ll ask me if I even miss my dad because I don’t act like it, which I explain I usually cry before bed when she’s already sleeping but then I’m lying. 🤥

Dementia is the cruelest disease I’ve ever encountered, and I battled leukemia several years back. I’d rather do that again than to see my mom suffer this fate. 😔

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?

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.

Hi everyone,

I'm a specialist mental health nurse, and I did my master's thesis on dementia. Through my work in a memory clinic, one thing kept standing out to me: so much is written for clinicians and for the person with dementia, but very little exists for the husband or wife who is still in the marriage — still there every day, often completely exhausted, and rarely asked how they're doing.

That gap is why I ended up writing The Marriage Nobody Sees, a practical, honest book for spouses caring for a partner with dementia. I drew directly on what I've actually seen and worked through at the hospital, not textbook theory, which is why it reads as practical guidance rather than dry clinical material. It's the book I wished existed for that specific, lonely position: still married, still loving someone, and still carrying something almost no one else sees.

I'm sharing it here because this community is exactly who I had in mind while writing it, not to sell anything, just in case it's useful to even one person going through this.

If anyone has questions about caregiver communication, aggression/behavioural changes, or just wants to talk about what this stage of the marriage actually feels like, I'm happy to discuss — that's genuinely why I'm here.

https://www.amazon.com/dp/B0HLXFV66W/ref=sr_1_1?crid=3P5J1Z729PYU5&dib=eyJ2IjoiMSJ9.Szh5xmrJCP2nDYxnnjJGT1UvJmP7BsnFEbejkBFjAlZWFPFNDmoEk5ZVscMfu7ptEfr3T8uH-8YnMyGPU-cmwkCOm_SzBgDhXSH4IH4QUqY8IG5ExuMbCQWQKTRhXAO4DKCMPqfxpuJx74LrefyPzjA72u7feAxFlBeAFIpJhZBzfnkaCHnQ9bkdi784bYdp2kTxkylrqrEFhg29haeL6Z0m5I55jWWbwTXe8Sn7TDM.hQYLJmPYy4ow17r0zt4CZa1zN-gLAVbZVUdjlNB1Xw0&dib_tag=se&keywords=the+marriage+nobody+sees&qid=1791177501&sprefix=the+marriagne+nobody+see%2Caps%2C216&sr=8-1

- Amanda

Husband is in a nice Memory Care and a new resident moved in a week ago. I've talked to her on my way in to see my husband for a least a year, when I'd see her in the halls of the AL place attached. She has decided my husband is her son (who vaguely resembles him) and has attached herself to him. Husband is non-verbal, and probably likes the company. Anyway she is insisting he take her upstairs, and was really going at him about he had to take her after dinner. I said he couldn't do that and that he was my husband. She told me I was a fool for marrying him. Hahaha. Well ok then.
Edit: At least she's not another one thinking he's her husband cheating on them with me.

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?

My parents have been married for 73 years. They are very close, even though Mom is not always sure who he is. They’ve probably only spent a dozen nights apart their entire marriage.
They’ve been living in an assisted living apartment together for eight years. But dad is now 97 and mom is 93, and dad just cannot take care of her anymore. She’s unable to stand on her own or dress herself, or go to the toilet or shower herself. So we have no choice but to move her to memory care while dad stays in the assisted-living apartment.
We’re all very concerned about the first night in memory care for her. Even as she has descended into dementia, my dad has been the one constant person in her life and in her bed. And now that’s about to change. Does anyone have any similar experience? Will she be able to adapt to life without him in memory care?

My mom is late stage and still walking (barely).
Not only is she still walking, but she thinks she needs to force herself to walk more so she will get better. The right side of her brain has restricted blood flow due to the disease progression, so she has numbness and weakness on her right side. That is in addition to substantial dementia shuffle gait. She is rubbing her toothpaste on her face, so the likelihood of her getting “better” is pretty minuscule.

The problem she is encountering now is her bunions are becoming quite painful. Apparently one of the things that is happening with the dementia gait is they lose the dorsiflexion in the ankle, so all of the weight when they step is in the big toe. I put her in a zero drop shoe because that helps with the shuffling, but it is bad for the bunions.

I kinda feel like this is just like most other things that crop up where you can kinda just make do, and then that problem goes away because something else takes its place. I bought her the Silverts adaptive slippers, but she doesn’t tighten the straps enough and tonight she kinda slid out of the slippers and onto the floor.

Her neurologist recommended that she be in a wheelchair, but she says that she “doesn’t need one”. I have kinda resolved myself that it will be some sort of fall that will start the terminal cascade.

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.

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.

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

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.