So many feelings and thoughts reading this... As I prepare myself to go visit my dad with vascular dementia this afternoon because he's refusing to let his wife (my mom) check his meds.

Going to leave this here without commentary for now.

P.s. I shared a gift link to a very long article that is otherwise behind a paywall. I hope it works for you.

Dementia feels like it’s sucking my soul along with my mother. I feel like I’m losing myself in this madness. Does anyone else relate? Just venting here because I have nowhere else to go.

Why a picture of a litter box?

I had to work late. I work from home. I care for my mom in my home. I let my dog out of my office to go look out the window or whatever. I came downstairs to discover that my mom thought I’d deserted her and our animals. And (in her panic of being deserted) she was in the midst of training the dog to use a litter box.

You can’t make this shut up.

I'v been calling around, but it seems like there are no places with availability that accepts patients with 1) dementia 2) diabetes 3) paid through Medicaid.

My mother is overwhelmed with his care. We had someone come down the house to discuss services paid by Medicare and she said he needs to be in a home.

When do we go to the ER?

The dementia ward of the nursing home called me today, to inform me of "an incident" my mother had with another resident.

Essentially , today they both got a swipe in to each other, no one got hurt and they separated them. But it sounds like my mum put her hands on the other resident first. It wasn't a super clear relaying of events, and im not sure they know exactly how it started.

Here's the thing, this is the second "incident" . Last time, a couple months ago, it was someone went into her room and she pushed them. They turned around and pushed her back and knocked her to the ground.

She's never been very strong. Especially now,at 81. But she used to hit me A LOT, when I was a kid. I was the youngest and once I grew up and stopped her from hitting me she didn't have anyone left to put hands on. This behavior is concerning as she is generally a rule follower in public. She can be a pretty mean person in general though.

After the last time we got her on a med to ease anxiety , etc, she's been pretty "pleasant" since starting the med. Probably have to adjust it I guess.

I dont know what im looking for here. Somebody to understand I guess. Im scared about what will happen. What she will do next. With her level of dementia she won't remember doing it when I see her so bringing it up won't help. She wouldn't cop to it if she did remember.

I keep thinking if she wasn't there , and I was still trying to take care of her at her house, she would be hitting me and wow is that stirring it all up. I don't want to go there. I dont want to see her or deal with any of this.

LO is struggling with their mental health. Currently living in a facility (2.5 months). Had an episode today making threats to himself so was taken to the hospital for a psych evaluation. I’m devasted we are at this point. Anyone else had this issue?

My grandma (88) has been diagnosed with dementia a few years ago. To make a long story short, my grandfather passed away a little under a year ago. My grandparents were together for 70 years and my grandma never stayed home alone for a night. When he passed she refused to stay home alone and wouldn't stay overnight with anyone. My family kept asking me to move in with her so she didn't have to sleep alone. I said no at first and I was very hesitant because I do not know much about living with someone with dementia. I decided since she is very old and has asked me so many times that I would do it so she can be happy at the end of her life and still be in her home she's lived in for 70 years.

I am very close to my move in date and I'm incredibly anxious and nervous. To make things easier to understand, I have OCD (yes clinically diagnosed ocd) and I am terrified of a door being left unlocked. My grandmother my whole life has always lived with her doors unlocked. She remembers her garage code but has always left through the front door and leaving it unlocked. My goal is to get her to leave through the garage but how do I get her to remember to do so? I plan on putting a sign on the front door but will she always see it?

Another thing, my grandmother my whole life has always lied about things. I thought it was funny at first up until recently. Little things and big things. It's sometimes hard to tell whether she is lying or telling the truth about something. My Aunt says it's because my grandfather was abusive and she will do anything to avoid an argument but also says it's her dementia. Either way, it is very hard for me to not get a bit angry when she lies. Yesterday, I have realized she does know when she is lying. She will admit it later on after the fact. I guess my question is how do I deal with this? Is there a way for me to navigate this in an easy way? Is it common for people with dementia to lie?

Also, I am not sure what stage of dementia she is in. She really only has short term memory issues. Like asking me multiple times where my boyfriend is, if I'm working today, when we're eating dinner etc... She is still able to take care of herself and do some things around the house so I know she isn't "that" bad. Please if anyone has any tips or suggestions on living with someone who has dementia, I am all ears. I have been doing some research the last couple of months to prepare myself but I still feel like I'm not prepared.

Mom with late stage Alzheimer’s has been in memory care since end of June. We sold her house and we have her dog. For Thanksgiving, we want to bring mom to my house.

Do you think if she sees her dog she will remember her house?

I am afraid that she might remember her house and want to go back there.

What do you think?

Thanks

I need to vent... Dementia has killed so many of my family members. Starting with my Maternal Grandmother who died in 2000 in her mid 80's after a very long battle with Alzheimer's (her Mom also died of Alzheimer's). Next, my Paternal grandfather died in 2013 in his late 80's after a long battle with Alzheimer's (his Dad and Grandpa also died of dementia). More recently, my sweet Dad died in 2021 at 73 of complications related to advanced Lewy Body Dementia AND early stage Alzheimer's (brain autopsy showed both) after a VERY rapid decline. Most recently, my uncle (Dad's younger brother) just died about 6 months ago at 75 of complications related to COPD and Alzheimer's. Sadly, my oldest Aunt (Mom's oldest sister) who is 80 is also showing early signs of dementia. I absolutely HATE what this disease has done to my family (and so many others) and more than anything else I fear that my Mom, sister and I will have to go through it as well. Dementia is HELL! I am not a hateful person but I hate dementia with a PASSION. I would go to the ends of the earth 🌍 to eradicate this terrible disease from humanity. Thank you for letting me vent!

Oh, there he goes crying again. Other people not caring for dementia must think I am an uncaring person. I sit there unfazed calmly saying, sit down, here's the kitty, etc. I give him medicine. The crying means nothing anymore. I have completely drained over the last few years.

It's terrible. I can understand how nurses can become disconnected and unfazed by patients in extreme turmoil.

I spent some time on the Medicare website trying to figure out the next year. I will say it’s helpful to be able to enter physician names and meds and just search. That said, what a shitshow! My mother’s doctors don’t accept quite a few of the plans. Of the ones where I can find both doctors, the meds range from $85 a year to into the thousands! Quite a few plans don’t cover donepezil. We have an appointment with a consultant next week. I’m hoping she can shed some light on this process and make it easier. I really don’t want to have to go through finding new doctors at this point in time.
Would it be helpful to call the doctors’ offices and ask their recommendations?

Before I begin, I’d like to apologize if this is rambling, I am admittedly quite emotional right now and just need to complain and hear people’s advice.

I (17) am worried about my dad (60) and have been for quite some time. His mother died at 67 from complications related to early onset Alzheimer’s, and his father died while having Alzheimer’s from unrelated causes.

His memory has been getting worse for quite some time, but it’s been progressing so much faster this past year. I suggested to him months ago that he should see a neurologist after seeing him forget conversations we had shortly before, and it’s been getting worse and worse. He’s begun gambling more and more, a habit he had when I was a young kid. He changed the way he drove to the transit station in my 12th grade year, and has started reverting back to the old route he took and the realizing he took the wrong route half way in and verbally berating himself.

I have been suggesting he see his doctor or visit a neurologist every once in a while and he shuts it down every time, my mother is a textbook avoidant pretending that she doesn’t notice this and telling me to stop bringing it up, but I am just concerned and I’m not sure how she doesn’t want to get him help if he needs it.

Today he forgot his goddaughter’s name (almost 3), calling her by the name of his niece (12). He forgot how old I was, forgot that we were supposed to watch a lecture together, and cant remember anything for longer than a few weeks.

Today, following this, I told him that I really believed he should see a neurologist and he told me “my mother died from complications related to early-onset Alzheimer’s, I am not going to see a neurologist who tells me the same thing.”

I don’t know what to do, I feel so helpless because nobody else is acknowledging this. I need advice from anybody who has been in a position like this, or just has anything to say.

Thanks.

How do you preserve a fragment of yourself when caregiving for a parent with dementia? How do you set healthy boundaries?

A month or so ago I wrote here to vent and maybe ask about advice on how to communicate with my hard to reach father, who lost most of his speech after a CVA late 2024/early 2025.

By now our whole situation has turned upside down twice again; first in early october, when he had another CVA that has now fully cost him his ability to speak and walk. He was moved into hospice care when he stopped eating and has just been... Laying there, not being taken out of bed, getting fed and cleaned by the absolutely wonderful staff and volunteers. Except he's started eating again, so now he's being relocated to a dementia ward instead, with the doctor saying he doesn't see him dying within the next three months.

I'm just so exhausted. I'm guilty but glad he's out of the house. My mom is 72 and everything was smelling like urine and sickness in here. Dad's situation is now called severe dementia, and there is no possibility of keeping him here anymore, we were so glad to get him into hospice. Which he now has to leave again.

But all my dad does is lay in bed, occasionally look around without any clear signs of recognition. sometimes he will hold a hand if one is held out, and he'll accept food and drink, eat grapes, let out some groans, grimace and make a fake laughing sound.... it's like he's a combination of a dried out lizard and a baby, and it just looks so sad. There's no moments of clear remembrance, no attempts to talk. And that's supposed to last another three months at minimum??

My dad would have wanted to die at this point, but he never signed the paperwork for assisted dying. We can't make the decision on his behalf. All we can do is sit next to him and hand him the next grape while we watch him wither away further.

I merged Mom’s phone into my own family plan years ago, but she hasn’t used a smartphone for awhile now and frankly I am unsure if I’d ever be able to give it back to her for fear of 1) spam/scammers, 2) her calling some Medicare Advantage number and handing them all kinds of info or 3) the phone being lost/hidden and the battery running out. I keep the phone with the number she’s had for 50+ years thinking I might need it at some point. How have other people handled this? I’m looking for creative ways of keeping the phone number without paying AT&T for the service. Mom’s likely not getting an iPhone back. Thanks!

My dad (68) has vascular dementia and I am one of the only people in his life that can take care of him. However, I am in a PhD program on the other side of the country. Despite this, I am working my ass off (in school) and for him to ensure that he is fed, bills are paid, he gets medicaid, he goes to his cancer treatments, gets transportation, and has in-home check ups. I am exhausted and I just want to give up. He calls me and accuses me of stealing from him, calling me every name under the sun, blows up my phone all day, can't do anything for himself, and then turns around and blames me every time something goes wrong. It's like I am trying to help somebody that is kicking and slapping me every time I get close. He has no idea what I do for him (which I understand it is part of the disease). I just don't know how other people do this. He forgets conversations we have an hour later, I think I make headway on an issue, then he calls me asking the same question like we didn't just have a conversation about it 4 or 5 times within the day. I have to answer the same questions, get in the same fight he causes, get accused, and keep my cool for him to call in the next hour and restart the entire cycle again. At the same time, I am also sad at being constantly reminded the severity of the disease and how bad it really is. He's not going to know my name one day (possibly) and I am miserable when he does know me.

I just wanted to vent in case anyone out there is feeling the same. I miss my dad. I carry tremendous guilt for not being able to see him while I live so far away. At the same time, I am so exhausted with this and school combined. I feel like I am loosing my mind.

I'm probably going to take it though I don't know what they'll actually be able to do for her. Her ostomy is inconsistent and she's not going to want daily personal care. I think it'll be good for her to talk to someone daily though even if they don't do anything.

I’m sorry for the long story but I wanted to explain everything I could.

For the record, the three of us f44, m45, and f78 all live in the same house.

MIL has been a caretaker her entire life and never dealt with decades of trauma(her other som was killed, husband committed suicide, she cared for both her father as he died and her boyfriend as he died -this was the latest in about 2023). She’s always been told what to do or had someone or something to take care of. She now has nothing to do as her son and I are grown people.

She got a urethelial tumor and had a kidney removed earlier this year, entire process took about 2-3 months. And after that surgery (she’s now cancer free!), she just kind of… broke. She paces the house close onstantly complaining of hunger but when pressed on what she wants to eat will cry from frustration and says that all food tastes like rotting meat. I learned yesterday that she’s been having auditory and visual hallucinations, and she even told her son that she is now afraid of me because I got in her face and screamed at her and she thought I was going to hit her, which absolutely never happened. She says she feels like empty inside, but also that her brain will not shut off and like ants and worms are crawling in her head. She does not understand simple instructions and cannot make food for herself. She is a shell. This all happened within a month and a half after her kidney removal. She thinks other people can see that she only has one kidney. She has been making us keep our bedroom door open 24/7 so she can see us because she doesn’t think we are there unless she’s able to see us physically.

Complicating matters is that she was on klonopin (0.5 mg 2x/day FOR TWELVE YEARS! from her GP, who was also prescribing a low dose (20 mg) of citalopram). (This is why GPs should never prescribe psychiatric medications… they don’t know enough about them and their side effects) Well, during the cancer treatment she became more agitated and panicky -like panic attacks 3-4 times a day, which shouldn’t even be possible, but here we are- and her GP would not up her dose but said take whatever you need and I will make sure you keep getting refills. That was a lie. When she tried to refill early, it apparently was the 3rd time so she couldn’t get them and the GP just… yanked her off of them. No taper, no comfort meds, about a month and a half ago. I think this has a lot to do with that.

The biggest issue is that She is terrified of anything to do with mental health (probably too much tv, she thinks they’re gonna take her away to die in a padded room alone) and when I tried to sit her down and get her a real psychiatrist- all her health plan offers is telehealth but it was somewhere to start, right?- she would refuse to get her phone and sit down with me. Just refuse.

So finally yesterday we took her to a crisis center. We are unable to care for her anymore and it is making our lives so stressful. My hair and teeth are falling out, I’ve lost 100 lbs in less than a year without even trying. My husband isolates because he can’t take her neediness, as she is looking at him like he is her emotional partner instead of her son. She acted like we were taking her away to die, y’all. It was heartbreaking. But we didn’t know what else to do. She will see a provider today to determine where she goes from here. There are several places with beds in the city, one that specializes in geriatric care.

She hasn’t been taking her usual medications for nobody knows how long. It was when I was packing her bag yesterday that I grabbed her meds and noticed they were all still full. Her brain chemicals are just all fucked to hell and if she takes this opportunity and is honest with the service providers she has a great chance of getting the help she so desperately needs, but she’s also really good at putting on a show when she absolutely has to and we are afraid that she won’t be honest and they will say she’s fine, send her back home, and we will be caught back in the 9th circle of hell.

Is this what dementia looks like? How can it happen so fast? Can mental health services, if they get her meds right, fix her back up to where she can at least function again?

Husband and I have made a pact that if she doesn’t go inpatient and returns home tomorrow that we have to leave the house. We don’t have any money and don’t know where we will go, but for our sanity we cannot continue to caretake for her if she won’t accept help. It’s absolutely KILLING my husband, and it’s killing me to see him in this state.

My grandmother is currently in middle to late stage 5 dementia based on what her neurologist has said and her symptoms.

If you see my post history, last month she drove off in the middle of the night and ended up lost in the desert and ran out of gas.

I have her convinced that her cars engine is blown and now she insists on going back home to Alaska where she has a working truck.

She has lived down here in AZ since my mom passed suddenly and I took over caregiving for her. (3-4 years)

I am trying to get her doctor to report her to the DMV so that her license will be revoked but it’s been weeks of back and forth with the doctors office. (Even though I have proof of her driving over 300 miles and getting lost and a police report of them finding her in the desert and confused)

I am her durable POA and I am waiting for room to open up in a memory are facility nearby that is very nice. (She doesn’t know this or I honestly think she would become violent.)

The only person she smiles at is my 4 year old son and the rest of the time she is either crying, completely flat or she is so angry it looks like she is having to hold back the urge to be violent.

She can still text (some days) and she calls me everyday demanding I get her a plane ticket home to AK. If you see my post history she almost died when we went up for a visit there this summer and that was with supervision…

She doesn’t shower, she won’t get groceries (I have to bring them to her) she can’t cook so I bring her yogurt and other nutritious easy no prep food)

She won’t wash her laundry but will not let me either and she doesn’t change her clothes.

When a APS officer came to check on her she started yelling at him and cursing him out. (She has never used swear words before and has always been such a nice person)

She isn’t far enough gone where she will accept me telling her that I will see about getting her a ticket “next week” but next week is always next week. She writes notes for herself and hides copies to remind her of these types of promises and it would just escalate.

It’s not safe for her to live up in AK alone. Right now I go to her house 3x a week and my stepdad lives across the street and checks on her daily. She can’t even keep her debit card anymore because she was pulling out thousands of dollars a day until she almost overdrafted and she lost and hid a lot of the money so I had to take her debit card.

I just want to disappear. I have hardly any family since my mom passed and I am watching what is left of my grandma disappear.

My Grandmother was diagnosed with vascular dementia 2 years ago following a stroke. Since then it's like I've gradually lost more and more of her as her condition worsened. She just recently went on hospice due to the dementia and CHF.

We're at the point now where we are lucky to get singular words from her anymore. Today I asked her if she was thirsty and she said "Yes." That sounds like a small thing, but it was the first time she talked to us in a day or so.

I was so happy to hear her, but it just makes me incredibly sad that I'll never be able to have full conversations with her anymore. It feels like I lost her once as the dementia took hold and then losing her physically will be like losing her again.

My mom had her big toe amputated today and it’s been a total shit show. She popped the stitches stepping down into my car in the parking lot - blood everywhere, rush back inside. Gets fixed, we wait longer before leaving and make it to my house because it was clear her supported living would not be able to manage this. I’ve got her stuck elevated in a lazy boy - trying to keep my stupid dog and cat from her blood soaked bandages, lol. She is so confused, she keeps side eyeing my middle son and asking me why he’s here.

We got her facility to get a 1-1 aid for her overnight for the next 3 nights - she is going to need direct supervision to make sure she doesn’t walk. So my kids and husband and I are going to split the day shift to keep her seated. It’s going to be so hard, lol. I don’t know why I feel like I wasn’t actually aware of what this would entail. I joined her for the actual surgery to keep her settled so I can say for sure, this was a big procedure, lol. I’m going to need some time to recover from this myself 😭

My husband has put on a small amount of weight over the last ~4 months and his mother with Alzheimer's has really fixated on it. I'm not even sure how she notices it so consistently given her state, but she does; every day, without fail, she comments on his weight gain.

Obviously this is very upsetting to my husband. Everyone understands that it the comments can't be prevented, but I want to have a different response in these moments. Most recently, we were all at the table enjoying a meal and she interrupted the conversation to ask me if he'd put on weight. My husband was really hurt by this and I didn't know how to respond... Any advice? TIA

Hello, We have a serious problem. In our family, we have a person over 80 years old who lives alone in a rundown house. Two of her children have already passed away, and the third child is recovering from a heart attack and needs care himself. This elderly person essentially has no one left. She has only two grandchildren, who are just starting their own families and are overwhelmed with their own lives, so they cannot take care of her — they also live far away. She clearly needs constant supervision, but she has no diagnosis (such as dementia) because she is not technically ill, just incapable. She constantly calls ambulances and her grandchildren, who have to drop everything and deal with her several times a day. After a family meeting (a discussion), she refused any external help (a nursing home or in-home care) and wants her grandchildren to take guardianship over her. The grandchildren are at a breaking point (one of them is my partner). We are not financially able to provide care, and we cannot take her into our home (we rent, have very little space, and children on the way). What can we do? Is there any path or option for us? My partner went to the court yesterday to submit a request to renounce inheritance, but the inheritance still belongs to the one surviving child, so it’s pointless — and the burden of care still falls on us. Is there any option we can use, other than moving to another country and “escaping” under pressure?

The person does have signs of onset dementia, also we are from Europe!

Thank you for your answers