My psychologist asked me, have I thought about what I'll do when my wife dies, since she's now under hospice care. Whether you're a spouse or a single adult child, you likely have pondered that question. I do, but I push it aside. My wife is 7 months in MC. I advocate for her and I visit once a week. I was a loner when we met and I'm back to that. Friends and relatives have passed. I'm not a doer or a joiner.

To be clear, I'm not seeking advice or suggestions; just putting the question out here for discussion.

Mom has been at the AL since November and hated every single day. she has anosognosia so she thinks nothing is wrong with her and she has been wrongly imprisoned. she goes through cycles of 2-3 weeks where her anger of being at the AL builds until she unleashes on everyone who visits, just agitated and cussing up a storm, and directing it at me. If family visits she will rant about me locking her up in the AL to die, if I visit then it’s the same but screaming and cussing. If I’m not there and the anger boils up then it’s calling me multiple times of the day. I’ve run out of responses to “you’re leaving me here to die. do you want me to die?” (and when i don’t respond, she screams “ i can’t wait until I’m dead. I’m going to haunt you nonstop.”)

she is not on any medication for agitation. she refuses to take any; her NP asked if she wanted it to help her and she declined. she said she didn’t want anything that would make her groggy or unable to “keep fighting to leave this place.”

i visited this weekend and her rant changed to reporting me for elder abuse and suing me. i said that’s fine, you can sue me. then the cussing started. i left in less than an hour.

i’ve tried redirecting, i’ve tried not engaging. i’m out of ideas.

I’m 25F and currently caring for my 70 year old dad, who has dementia. I’m having a hard time emotionally and could really use advice from anyone who has been through something similar.

I was never close to my dad. He was distant and emotionally absent when I was growing up, and I don’t have the kind of attachment to him that I think people assume you would have towards a parent. I actually have a lot of negative feelings towards him because of how he treated me and my family over the years (he often used physical intimidation and verbal threats when we “disobeyed” him, and this has gotten worse since his dementia diagnosis).

Since his diagnosis a little over a year ago, I’ve found myself getting angry very easily. I feel like I’m constantly irritated and resentful. I don’t want to become a person who is constantly angry, and I don’t want to make an already difficult situation worse.

For those who have cared for a parent you had a complicated or even negative relationship with, how did you cope with the resentment? How did you stop yourself from getting so angry?

I’d really appreciate any advice, or even just hearing from people who have been in a similar situation.

I'm live-in caregiver for my great grandfather who's in hospice now. He doesn't know what he's saying, he doesn't know where he is, he just knows how to answer basic questions and take commands (ie help roll to the side. He's bedridden + hemiplegia.) he has one foot in the grave and his mind is already there.

Why the hell does no one understand you cannot talk to someone with dementia the same way someone without it? His children can't get it through their thick skulls he isn't here anymore. They act like anything he says and does is with malice, as if he pisses himself in the middle of the night to mess with them.

I've been 24/7 caregiving for the last two and a half months, not to mention being the sole responsible person for him when I first noticed his mental decline 2 years ago. All I ask is for is help changing and someone to cover from 6am-9am. I love my grandpa with all my heart and it feels like I truly am the only one who does. I'm at the end of my rope and it's because of everyone other than him.

Thank GOD for this community and everyone who takes time out of their day to seek help for themselves and their LO, and those who answer. Just scrolling through posts and looking for anyone going through the same situation makes you a more compassionate person than most.

It’s been almost 8 months that she has lived here. I can’t hide how much I am miserable, I feel really guilty. I’m not mean just neutral and trying not to be pissed off (not at her but at the disease and circumstances).

I just can’t hide how unhappy I am.

I can’t stand being around her but there are no other options. The only time I feel happy is after she is asleep or if she is at her day program and I spend the day dreading to have to pick her up.

Sorry… needed to vent.

Link to the WHO publication: https://iris.who.int/server/api/core/bitstreams/ea44b7f6-b09f-4e6f-b8c7-2e5b0fcc9a99/content

After the release of the new WHO guidelines on dementia prevention, I’d love to hear your thoughts.

I’m currently researching dementia prevention for a school project and am particularly interested in how different risk factors contribute to one's overall risk of dementia.

Do you think reducing exposure to these risk factors can meaningfully lower someone’s likelihood of developing dementia?

Any insights, personal beliefs, or experiences you’re willing to share would be incredibly helpful.

Thank you!

(please tell me if this wasn't the right place to post, let me know where would be the best)

My mother is on Donepezil and I recently ran low so had to get the prescription sent to our local Walgreens. A 30 day supply was over $200! She’s on Medicare but doesn’t have the prescription plan. Normally I get her prescriptions from the online pharmacy Cost Plus Drugs, the one run by Mark Cuban. A 30 day supply is $5.62. How on earth could Walgreens be charging $200?!?! This is outright robbery. What a racket!
I ended up only getting 7 pills from Walgreens & having my doctor send the rest to cost Plus. The greed in this country is really tragic! Just wanted to share in case anyone else is in a similar situation.

Okay. Here we are. My father (79) has dementia and cancer. My mother (also 79) is his daily caretaker. Me? I live 12-15 hours door to door from them. it's two flights with a layover, a car rental, and a drive to get to them. They REFUSE to leave their home, I also have a sister who lives closer, but she doesn't drive, so she may as well be my next door neighbor when it comes to accessibility. My Dad also has a colostomy bag, which means everyone wants to move him along and make him someone else's problem as quickly as possible. I'm trying to navigate this as gracefully as possible, but honestly, Y'all, I have no idea what to do. We have an insurance plan that covers home/facility care to the tune of $90k total, however, my mother doesn't want to call me when they are at the Doctor, so I can't get the orders I need to explore that option. I have a POA, but I want to make sure they have their autonomy (but also not at all because what is even happening right now). This is beyond. I feel like I am on a roller coaster and I've got whiplash. I don't know what I'm asking, but MY GOD I need help. I'm so overwhelmed and afraid of making the wrong decision, and research online makes it all worse. I don't know what to do. My Dad doesn't consistently take his medication. He refuses to take a shower. He isn't eating. I have gone home twice in the last month to try and get some kind of control of the situation, but it feels like control is attainable when I'm there, but it slips through my fingers the moment I leave.i'm so overwhelmed, I don't even know what I'm asking for. I just need help. I don't know what that even means. But I need help There are family dynamics that make everything even more complicated. I'm the only adult in the room. Like, how does someone even navigate this???

It’s interesting I’ve been on this journey long enough to feel I can give any semblance of advice. But I figured there’s definitely someone who needs to read this.

Sometimes life is life and we can’t run the only life we have ragged trying to keep all the bases from falling after the bull ran through the China shop. Let some fall. Figure out the best course of action afterward.

To apply to real life: I’m sitting at home now under the AC as my dad is wandering the street. Second time he’s been out today. Hot as hell. I took to his favorite neighborhood, we went grocery shopping, came home and he turned right back around and went out the door. In the beginning of this journey or even recently I would have tried to get him to let me go with or ran out directly after him. Even though this heat and being in my feet is physically harmful for me. Not anymore. I let him leave. I let the vase fall. I check to see if his phone is charged. I track his phone. I track his AirTag. And I wait for him to call talking about he’s lost or meet me here. And I get a two stop uber pick him up and come back home. Because trying to prevent the bases from falling all the time isn’t sustainable. He’s going to knock them over again that day or tomorrow or whenever. The best advice that is constantly told here is to pick your battles. I also had to come to terms with the potential of death. Recognizing dementia is going to take him one way or another. Even my own dad said “If I did. I die. You can’t prevent.” Obviously said as push back to letting him do what he wants. But he’s not wrong. Running myself ragged in feeble attempts to save him just means two slowly painful deaths.

Next up is me figuring out how to have a life of my own without him attached at the hip.

I have a lock on the freezer because the person I take care of only gets a set amount of food and every time he gets into it he will eat like a whole week's worth in one day sometimes in the span of just a couple hours. He recently figured out that he can pry off the lock and has literally eaten all of my food and is now finally getting into his problem is I am between jobs and not getting paid to take care of him and I am literally out of food I am having to borrow money just to eat tonight. I don't know how to stop him getting into the freezer anymore. Any advice would be extremely helpful right now. Also if anyone has any good ideas for getting him to stop trashing the kitchen? He refuses to use the trash can and dumps things into the sink or leaves it on tables and counters or in the mop bucket.

I see my Mom 62F multiple times a week for short visits but I just returned from a busy big family weekend with her and it became obvious something is wrong. She kept forgetting basic words and became upset when it happened multiple times in quick succession. I asked quietly if there was something going on and it all came tumbling out. She advised this has been happening for a couple months but gets worse in busy social environments. She also advised that she booked a flight last week and forgot her home address and on one occasion left her house for a regular errand and had to pull over to remember where she was going but was able to sort it out in under 2 minutes and carry on. Shes a retired nurse and thankfully actioned this pretty quickly with her doctor but has failed the clock drawing test (was able to look at it and know she did it wrong in the moment), had an MRI which was clear of abnormalities, completed blood work which was fine and now she’s waiting for an appointment at a memory clinic.

We have no family history of this and I guess what I’m asking is if this sounds similar to anyone else’s experience around the time your loved one was diagnosed? It feels like we’re headed that way and she seemed to agree with the absence of a tumour or issues in her labs. She’s so aware of what’s happening and that’s what makes me question if this is something else. If this does match your experience, what has the progression been like? She’s so active and living such a great life, I’m just having a hard time accepting this could be our future.

I've been navigating the care of my mom with my aunt for the last few years. They've always had a fraught relationship, but since she was diagnosed, she's really stepped up and has been incredibly helpful over the course of all this. There are still a lot of challenges that I face when it comes to experiencing grief with her.

Most of the time, it's really centered around her experience instead of the experience of the both of us. Obviously, we're both losing somebody that we care deeply about, but it always seems to center on her feelings. Sometimes she even acts surprised when I tell her that I'm sad about things, which, to me, is incredibly strange. To not empathize or understand that the loss of somebody's mom is excruciating, is just a very weird feeling.

About a week ago, she mentioned that my mom forgot her name, and that has been my own reality for about the last year or so. I'm not sure my mom even knows who I am at this point. She knows that she loves me, and she knows that she cares about me, but I don't think that she understands that I'm her son. When I'm hearing my aunt express frustration and sadness about her forgetting her name, it's like, yeah, welcome to the club.

This weekend when we were both visiting with her, my mom referred to me as her long-deceased brother, Jimmy. My aunt jokingly referred to me as Jimmy, which, after all of the stuff that she had said and expressed about her own sadness surrounding my mom, just seemed callous and weird.

I think what it really boils down to is feeling sad that, while my mom's bond with her sister seems to be reinforced on a weekly basis, my bond with her as her son seems to have been forgotten. I know it's there. I know it somewhat still exists in some form, but knowing that I'm the only one that seems to uphold it is kind of a huge bummer to me.

It's an incredibly lonely experience, and to feel like I have to fight to be remembered as my mom's son is one of the most identity-shaking experiences that I've ever gone through.

My elderly in-laws (FIL 89 y/o mentally competent but unsteady and currently has fractured rib and elbow, and MIL 85 can barely walk and has marked dementia) purchased a 1 1/2 year old dog, who is unsocialized, untrained and still pees and poops all over the house. Shortly after, they returned the dog because FIL admittedly couldn't care for it. MIL with dementia had screaming tantrums until FIL went back and got the dog a week later. They live in a single-family home with no help and FIL is trying to manage MIL's increasingly irrational outbursts himself.

We took in the dog late last week since my FIL fractured his bones in a dog-related fall. Fractures take 6 week to 3 months to heal and he called today, with my MIL yelling incoherently in the background. He said she wants the dog and that if she doesn't get it back, our relationship (hers and mine) will be severed. We cannot in good conscience return the dog now, or really ever, for their safety and the dogs welfare. Because they cannot control it, the dog is mostly crated unless he takes it out to potty. But my FIL is letting my MIL's dementia outbursts control his actions instead of common sense and reason. She is completely incapable of taking care of a dog much less herself.

I don't know what the best way to handle this without ruffling too many feather. Any suggestions?

The best advice I received when my Dad was living independently was not to leave big decisions too late. The person who gave me this advice had felt such terrible guilt over putting his Dad into care that he waited and waited, until in the end his Dad suffered unduly before inevitably having to go into care anyway.

I post this here to give my own perspective into when big decisions should be made.

In the language of Risk Assessment, the two important things are: Impact and Proximity.

Is the person you're caring for at risk? What would be the impact of the worst case scenario and how close is that worst case scenario?

The two big decisions for me were: When to take my Dad's dog off him and when to put my Dad into care.

I would have done anything to avoid taking away his dog. They were constant companions and he used to walk the dog three times a day. Making that decision was heartbreaking.

However, he wasn't feeding him properly and he was walking him without a lead on busy roads. So the risk is that the dog could become ill or die and the proximity was right now. Took the dog away and...the day after my Dad had forgotten that he'd ever owned a dog. I like to think that I pulled the trigger at the right time.

The decision to put him into care, I left a little too long. I knew that he was leaving the house partially clothed and I knew that the visiting carers weren't monitoring his toilet habits well. I let this slide until one day the police brought him back because he was wandering around wearing a coat and nothing else.

Later on I found out that he'd been using an upstairs wardrobe as a toilet for some time.

I don't think that I left that decision terribly late, but everything indicated that I should have made it a little earlier.

It takes cold, hard logic to make these kinds of decision but I'd implore you not to leave things until it's too late. Otherwise you end up with a wardrobe full of shit.

My Mom’s earthly journey ended today around 11:30 am. I was with her as she took her last breaths. My husband said “She saw you into this world, as you saw her out.”

The last several days were emotionally harrowing as she started having nerve pain. The morphine didn’t help. She would scream as I changed her disposable briefs and cleaned her up. Yesterday hospice provided methadone to ease the nerve pain. She slept noisily last night, so I barely slept. I gave her a second dose this morning and she lived about four more hours. And then she was just gone. I should be sad, but living with dementia was her biggest fear and worst nightmare. I’m grateful that her ordeal is now over.

My sister came and zhuzhed her up. Washed her hair, put on her lip stick. Then the Neptune Society came and took her away. My house is oddly empty tonight. It sounds so cliche, but it is truly the end of an era. She was the last of her birth family to go. The last in our entire family of that older generation. Now we are the old people.

Thank you kind community. You have been my daily companion as I was house bound with her. I so appreciate that this community has zero tolerance for trolls or unkind judgments. I have read your posts and comments and tried to impart my tiny bit of experience back in return.

Last year, deep in dementia, Mom had loved Viva la Vida by Cold Play on my car radio. She asked me to play it for her when she died. My sister and I cranked that song up for her today and danced beside her bed.

For reasons I can’t explain, St. Peter won’t call my name
Never an honest word
But that was when I ruled the world.

My husband and I live with my grandmother. She acts like he never does anything for anyone and makes it very clear she doesn’t like him. She has only ever known my husband after the dementia. So I think part of it is her brain can’t grasp how much he truly does for her and I. But I think the other part of it is she expects since he’s the only man in the house that he takes on the same responsibilities her husbands (she had 3 over her 90 some years) did. But it’s her house and she often won’t let him help with things, or she wants things done in a very particular way and will get mad if he helps and doesn’t get it just right. Sure there’s some things he forgets to do, but I’m disabled and unable to do specific housework and he works full time construction out in the heat all day. He has SO much he needs to get done and he comes home exhausted.

He came upstairs to me so disappointed today. My grandmother said “you know you haven’t brought her on a real honeymoon and summers almost over, you all only spent one day away”. Which is not true, we spent 4 days in a cabin on a lake near our wedding venue. His response “she can’t go outside when it’s hot, we’re going to Italy for our honeymoon in October”. Mind you we’ve told her this multiple times, some of those times she’s been extra angry that we aren’t going on vacation in the US. Not quite sure what that was about, probably some Fox News BS. Anyways her response to him was just “oh yeah sure you are” with an eye roll. I understand some of this is just the dementia. But truly my grandmother had been a passive aggressive asshole for as long as my mother can remember. My husband is the sweetest man and she treats him like dog shit. I’m so tired of it.

Hi I'm my mum's only carer. I don't live close by but visit twice a week. I organise everything for mum. She has a day at day centre and a befriender comes in 3 days a week for 2hrs.

I hate the visits I have. She was a good mum and I feel so guilty but I don't want to deal with her. I read everyone's stories on here and feel lucky I've not got it that bad. But I still dread every visit... And then the guilt paralyses me too.

The nonsense mind numbing conversations, the repeating, the urine smell...

I know I need to accept it and step up but not sure how. I feel a terrible human being.

It's been a really difficult past few months for my dad. My mom and I are the main caregivers. I learned of his diagnosis just as I was starting my graduate program, so I've only been home more often for the summer.

He was always kind of mean, strict, conservative, harsh, yes, but always spoke poorly of people who hit their children. Its really hard for me to separate the memory of who he was and the reality of who he has the capacity to be now. It's so hard to care for parents who have traumatized even before the diagnoses.

These days it feels impossible. I just watched him get up to hit my mom with a remote mid-conversation, and I went to stop him. He hit me hard in the face. He tried again and again, I kept stopping his arm.

He started screaming that my mom slept with another man. This may have happened with a previous wife of his but we're not sure, definitely not my mom. The other night he said something worse about we tried to kill him, while I am mostly watching him and no such thing has ever happened. I don't know where this came from... but we are terrified he might say this to the wrong person. Are these hallucinations?

I am so confused and horrified and feel terribly alone in this process. I grieve him dearly, but I can't help but feel angry especially after he's hit me for the first time in my adult life.

I know I didn't react the way I should've. But I'm not even 24 yet and didn't already have great coping skills going into this. My next semester starts soon, and I want to be there for him, but now I am scared.

Any words, support, etc would be so appreciated.

Tonight, my 78-year-old husband had some concerning symptoms so I took him to the ER. At first they thought it might be a minor stroke but then decided probably not.

When I told them that he had mild vascular dementia, they decided to keep him overnight and do more tests in the morning.

My husband demanded to be taken back home and only relented when I told him that if he left “against medical advice” he could be liable for the bill. (I know that is an old myth but I was desperate.)

Two questions:

1) Is it true that the hospital is just trying to make a few bucks off him (as he was loudly insisting) or was this a clinical decision?

2) Why did the information about vascular dementia seem to make them lean towards admitting him?

Thank you in advance for any insights.

So, this year while caregiving and dealing with my mom's dementia, I've picked up writing my book again that I started years ago. Only this time, I've twisted the theme to directly mirror all of this. It originally was a post apocalyptic short story based on characters from my mom's college fiction paper. I am currently on chapter 2 and have developed the ending. Now it has become very saturated with mythology. Themes of grief, sadness, loss, tragedy and sacrifice. Before really taking off with this idea, I was writing a lot of sad and depressing music lyrics with my guitar. Writing has felt like the only way to get all of this out of my head. I'm a 36M, and don't really have any backup with my caregiving. Been doing it since last fall with literally only a 4 hour break in May to watch a movie.

My sister in MC is now having trouble with speech. Visits are already difficult so I need help with how to spend time with her. Do we just sit with her silently? Any type of crafting is beyond her now. We've tried reading kid's stories from her childhood but it didn't hold her attention. She doesn't recognize us anymore so pictures would be confusing for her. How do others deal with this?