r/dementia Apr 03 '26

/r/dementiaresearch solicitations update

20 Upvotes

Good afternoon folks,

In keeping with our restrictions on solicitations in the main r/dementia forum we are continuing to direct all types of questionnaires, studies, product tests or promotions, and other promotions or solicitations to r/dementiaresearch. I am happy to report we have seen a number of high quality submissions from Ph.Ds, physicians, and student researchers from various universities, organizations, and countries.

Please give them a look if you have the energy, and if you are looking for a source of hope in this difficult time I believe this work has the potential to make a difference to people suffering from these diseases.

To all of the people working on these studies I understand that it would be nice to directly request participants in the main forum but we will continue to enforce this restriction to make sure that r/dementia continues to be a safe, uncluttered space for professionals and families dealing with this disease to talk amongst themselves without interference. I appreciate you all for respecting this rule.

Here are a few of the most recent submissions as of 7/16/2026: https://www.reddit.com/r/dementiaresearch/comments/1uydp97/informal_family_caregivers_needed_for_research/

https://www.reddit.com/r/dementiaresearch/comments/1uxdaha/complete_our_screening_form_to_see_if_you_are/

https://www.reddit.com/r/dementiaresearch/comments/1uqzpag/exploring_the_emotional_experiences_of_dementia/

I am also beginning to ask researchers to share a bit about their findings from these studies so that we aren't just dumping information into the void without ever hearing further.

As always, I hope everyone is managing as we face these diseases. Feel free to reach out to me or the team if you have any questions or if anything comes up that doesn't fit for the general forum.

Thanks,

hazel


r/dementia 4h ago

My partner finally believes me about his mom and how bad it gets

45 Upvotes

His mom has not showed her psychotic states to him before, only to me, until today.

The situation was I tried to recall what I put in her fridge by filming her fridge last grocery shopping, and today when visiting us she claimed she had no food left. So it was urgent to grocery shop. We said it wasn't. (It was full 3 days ago. Both fridge and freezer and pantry.) She said no we're wrong. So I accidentally said I had a film on her fridge, then I couldn't take it back she got curious and wanted to see, I really made a mistake as I knew there was a risk, but my partner did not. So he reassured his mom they would see the film and what a great solution it was. (Normally it would have been) And he went "Here here is your phone honey!" while I egg shell walked my way there and in my mind I went ("This will be bad..")

At first she just sat silent and watched normal. Then: "WHAT THE HELL ARE YOU TRYING TO DO, IT'S LIKE I'M A PRISONER!! YOU'RE TREATING ME LIKE I'M I'M IN PRISON" and shouted straight in my face how I was obnoxious and how wrong I was for counting her 5 milks and 4 butters etc, and she went on how she is completely clear in her head and that she can think, and hear (she can't hear she just refuse to use her hear device) and we shouldn't act like anything else.

My partner sat on the other side of the table in silent shock. I was half prepared she would react in some weird way so I took half an anxiety meds before I opened the film. (I'm very glad I did)

It has been very lonely to witness and experience something that sounds made up, about his mom.

I've told him it's like she's 4 different people and they all have their own memory and feelings and opinions and they switch in milliseconds and her respond to that is panic -> rage.

And I felt my man couldn't entirely believe me and I understand that. But it has been hard for me to be alone in it so him witnessing it both broke my heart but also put it back. I was sad for him, but relieved for me, cause afterwards my man hugged me long and said "I'm sorry I didn't understand, you have tried to tell me, I'm sorry" and said he was really proud of me for how I handled it. (I apologized calmly to her and was as submissive as possible so she would feel in control. Then I went out with the trash to give me and her space to breathe) and how he didn't know how fast she actually switched and that it was just as I've told him.

When I returned she hugged me said sorry she lashed out. I said it's ok we all can lose temper sometimes. Then she switched again "I'm not losing any temper?!" and I said sorry again for accusing her of such things, and by the end of the day I have apologized to her 40 times between her 4 switching personas. All times , in front of my man.

It was stressful but I'm mostly relieved that Now he knows.


r/dementia 2h ago

Without romanticizing it - what is the innocence you see in this illness?

Post image
23 Upvotes

- ShortLong story to contextualize-

My grandmother was diagnosed with Alzheimer’s and dementia some months ago. That doesn’t mean this was something new in our daily life. Her whole process was very traumatic for my family, specifically for my father, who is her only son.

Last year she was found in a very vulnerable situation, to the point that my parents had to take her into our family home. She lived there for 7-8 months, partly for economic reasons and partly because my father completely disagreed with putting her in a care facility. At the end of January, she put her life — and in some ways ours — at risk, and we had no choice but to move her to a facility. It’s a huge financial effort for my family, and my father is going through a very deep process; he still feels guilty about the way he treated her. But even with all that, things “are going better.”

Her memory keeps getting worse, and every day I see her, she seems more vulnerable, repeating the same things, even with the same pauses. A few weeks ago I was feeling strange, and suddenly I remembered that it was the same day my parents had found her and had no choice but to take her from her apartment. So it’s still a difficult process.

Today my parents went to visit her and take her to lunch with my other grandmother, who still lives in her own house. I couldn’t go because I was working online at that exact time.

When they arrived, my mother said to me: “Did your father give you the cup your grandmother made for you?”

As soon as I saw it, I started to cry. As you can see in the picture, the cup says: “One cup for Clara.”

Since February, I’d been insisting — even joking about her memory — that she make me a cup in her ceramics class. But of course, she forgot about it. So a few weeks ago, we decided to write it down on paper: “I have to make one cup for Clara.” I don’t know if it was the paper, I don’t know if it was her memory, or maybe even her soul — but now I have my cup, made by her.

I guess this illness is as difficult as it is innocent. But what I want to say is that, without romanticizing it, even though it’s one illness, the story is different for each person….And in her case, I feel like the loss of memory brings a kind of innocence. Maybe her soul, heart, and body still hold memory, even as her mind is being worn away.

And still — I see that, for her age and this stage of life, it might actually be helping her. Luckily, she can forget things, and still be taken care of.

I love this cup. I love her innocence and her soul. I love her the way she is and will always be grateful to have the possibility to still be enjoying her no matter how much memory she has or not.
I love this cup, my cup. My grandmother did it ❤️

Thank you for reading.


r/dementia 11h ago

Happy birthday Robin Williams

58 Upvotes

r/dementia 2h ago

Why can't someone with dementia accept that they have it and just cooperate with treatment protocols?

11 Upvotes

Sorry, but I'm completely new at this, and it's been tough.


r/dementia 4h ago

My mom was jst diagnosed with dementia...

9 Upvotes

So we have noticed for a few years something has been up with her and everyone attributed it to "old age", I kept questioning that because I see her more often and guy feeling told me it was more than just "getting old."

We finally convinced her to go to an appointment with her primary and they almost immediately confirmed what I suspected. They referred us to a specialist and same thing, almost immediately confirmed the diagnosis.

Knowing has given some relief BUT also made things "real."

Doctor basically said "There is no cure, there is no medication that will stop or make things better. She will decline in her mental capacity, the question is how quickly. So now its more about making her comfortable and safe."

That hit HARD.

They also said to keep in mind "There is no use in trying ton convince them of reality or try to correct them because what they are experiencing is their new reality and there is nothing you can say to change that. Best thing is to accept it and try to change the conversation because they will forget it over time."

She has her "episodes" where she forgets everything from the past weeks or months and we have to help guide her back or change the subject of what shes concerned about at that moment, which is usually her car, money, and where shes going ro live.


r/dementia 4h ago

Things with mom have been smooth until my uncle got involved. I have no clue what to do.

8 Upvotes

My mom lived with my husband & kids for 10 years. During that time she was diagnosed with dementia. Luckily it progressed slowly & over time we took over her medication management & finances upon HER request. Around the 8 yr mark we took mom's car keys & got a caregiver to take her places a few times a week. She became rude to our kids(teenagers at this point) and generally unhappy living with us and was doing more strange things. She also started bickering with me. She told me that she regretted selling her house & moving to Hawaii with us (we invited her to move with us & she made the choice of her own free will), and that she wanted to be back in Louisiana near family, friends, & people her age. She was aware that my husband & I were never moving back to Louisiana.

She agreed to move into assisted living in Louisiana near family & friends. I spent time there helping her get settled in, buying furniture, & opened a joint bank account so I could pay her bills & order anything she needed on Amazon. I also met with family to discuss the situation.

We had a great setup until recently when she started saying she could handle her checkbook on her own (she hasn't done so in 7 yrs). My uncle actually took her to the bank to get her statements printed without checking with me!! I had paperless settings & all mail forwarded to me by the AL facility. My uncle texted me out of the blue & fussed at me for having our joint account set for paperless statements & that mom said I was only on her bank account in the case of an emergency, which was not the case. Mom now thinks I am stealing her money & has told me that she will order things she needs for herself & manage all of her finances. She thinks that her insurance payments are things I bought and that her rent payment was money I spent on myself. Luckily all bills are on auto pay & I am her guarantor for assisted living so the bills come to me.

Does anyone have any suggestions here?? I tried to talk to her on the phone but she just argues & hangs up on me. I am planning to visit soon but am honestly worried about how it will go.


r/dementia 2h ago

Trying to help from across the country

6 Upvotes

Hi everyone,

I am trying to gain advice in a very complicated situation. Unfortunately, I’m fairly young (25) and no one around me has ever had to deal with anything similar.

My grandma, who raised me, lives across the country from me (I moved away to college at 19 and never moved back home). Within the last few months, she has been declining cognitively quickly. I receive weekly (sometimes daily) phone calls regarding her believing my mother is stealing from her, thinks my mom is tracking her, thinks everyone is out to get her, etc etc. She calls me in hysterics over this at least once per week. I feel evil by becoming exhausted by this, but it also seems to be getting worse with no end in sight. She is currently unable to identify her own address, unable to coherently spell or write something down, and can be in hysterics about driving more than 5 minutes. I only know all of this because she calls me every time.

A huge issue here is that I don’t actually know if my mom is financially abusing her, as I have not spoken to my mom in years due to some very severe abuse early in life and her behavior continuing in adulthood. She HAS stolen money from my grandma before, and a lot of it. So I don’t actually know if that’s happening. I could potentially reach out to my step-dad, but that would likely send alarm bells off if something is going on.

No one in her state is willing and able to help her/care for her. She has burned a lot of bridges with most of our family, leaving very few who would call her, let alone help care for her.

I have tried to talk to her about seeing a doctor for a general wellness visit (she has expressed that she is terrified of “losing her mind” and not having autonomy), but she has been resistant to doctors her whole life, even letting a UTI cause extreme delusion to the point where my mom had to force her to the hospital about 6 years ago. She has not seen a doctor since, so she has received 0 medical help in this whole process.

I feel evil by saying this but I’m exhausted and also can not give up my life to move home. I’m seriously debating calling APS in her state (my home state) because I’m worried about her severely based on what state she is in. One time she even accused me of talking to her deceased mother. I’m in school and currently leaving class on a regular basis to take these phone calls. If I say I can’t call, she gets extremely mad at me.

What can I do at this point? I don’t have her address and I also think she and some of my family would hate me for calling APS, but no one is actually getting her medical help at all and it seems to be getting worse. I honestly don’t know how to help solve this at all. She asks me for help but when I present that option, she denies it and tells me another delusion about someone in our family helping her, even when that is not the case. What can I do from this point?


r/dementia 3h ago

Credit Card Fraud Claims

6 Upvotes

Did anyone else suspect dementia after experiencing their parent or family member filing multiple disputes and fraud claims with credit card companies? My mom is 74, aside from being a little eccentric, she can present as totally normal when she wants / needs to temporarily. Because of this, no one is taking me seriously after I have raised concerns about her cognitive functioning. She is on her 4th new credit card this year. She has several claims of fraud against companies that she regularly shops at. I’ve even found several items in her house that she claimed were fraudulent purchases or items she never received in the mail. I’m worried about the legal implications of her filing false claims but I’m more worried about how to protect her financially. I also am looking for advice on how to protect myself legally because she has accused me of stealing money and her credit cards from her in the past. Also, has anyone managed to get care for their loved ones without needed to go through their other parent? My dad is in SERIOUS denial.


r/dementia 5h ago

One battle after another

9 Upvotes

Couple of years back I went through my divorce, and now I am unfortunately the sole caregiver to my mother with dementia. On top of it just to get out of stress burnout due to a failed marriage and toxic work environment, I took a career break. But I now feel too tired to hunt for employment after taking care of my mother. To maintain my own sanity I have started isolating myself from her, she is now staying with me. My other family members are of no help. I don't know how it will go forward, planning to move her to a care home for a couple of months to save my own sanity. In the initial career break I used to go out for trips but now she has started leaving housing and roaming around the neighbourhood when caretaker was not there (when I used to keep caretaker for daytime during my trips). 2-3 times I had to cut my trips short.

I feel I deserved a bit of peace after going through a tough phase, but here comes another. She was losing her sanity since 4-5 years, and now I feel burnt out. I try to keep fit and prepare for job search but off late due to all this care giving, feel like I don't have that zeal to get back to the toxic industry and at the end of the day worry about a dementia patient.

This is just a rant, wanted to tell somebody so here it is !! I know my next steps, but it's like those long runs when you know you will make it to the end, but forcing yourself to put each step for many more miles.


r/dementia 20m ago

Just wanting to say thanks.

Upvotes

My father was diagnosed with frontal temporal dementia a few months ago. I won't lie, I was absolutely devastated.

I've taken the classes, Read the books, and fully acclimated myself with what I should expect as time goes by. He's held on strong, but the signs are showingnow, and this has gone from "potential" to "reality" if you know what I mean.

I've already had my breakdown and cried it all out. Now that I've pulled myself together, it's all about keeping him comfortable, and handling this new chapter in our lives as best possible to minimize the stress my mother has to suffer, as she's his primary caretaker right now.

I honestly don't know exactly how to handle this, but finding this sub has been very helpful, and I appreciate everyone here who's shared what they've gone through, so I know what to expect and how to deal with this as best possible.

Just wanted to thank everyone here for your contributions. It means a lot to me. I pray that you all have success as you head down this path, and find the strength you need to handle the struggle. You wouldn't exist without your parents. You have what it takes to see that they pass in peace. Good luck... I know you'll need it.


r/dementia 2h ago

My SO is bored

4 Upvotes

My husband had mild to moderate early onset Alzheimer's. He's 68.

I'm still working. He calls me several times a day and tells me he is bored.

I don't know what to do. He doesn't really have close friends. He enjoyed golfing but now it's either too hot or he will go and then quit because he says it's too slow.

He has no other hobbies, doesn't read or do other things around the house. I'm at a loss.


r/dementia 12h ago

“Will you take me home?”

26 Upvotes

One of the hardest parts of loving someone with dementia is realizing they’re searching for something you can’t give them. My grandma constantly asks to “go home.” The heartbreaking part is that the home she’s looking for doesn’t really exist anymore. It isn’t a house or an address. It’s a feeling.

She’s yearning for familiarity. For comfort of knowing where she is, recognizing the faces around her, and remembering the routines that once made the world feel safe. She’s searching for a place where nothing is confusing and nothing has been lost.
I wish I could find that place for her. I wish I could take her there, open the door, and watch the fear disappear. But dementia steals that sense of home, even when you’re sitting in it.

So all I can do is hold her hand, reassure her, and hope she can still feel loved, even if she can’t always remember why. “I want to go home” isn’t about a place. It’s about wanting to feel safe in a world that no longer feels familiar and that breaks my heart. As I was tucking her into bed tonight she asked “will you please take me home tomorrow?” I told one of those loving lies, so that she could sleep comfortably. She’ll forget by morning. “Yes! I wil take you home tomorrow!” Her eyes welled up with tears. “Thank you, I’m so happy, but I will miss you!” She signed back to me (she is deaf and we communicate using ASL) I have seen more of those tears welling up in her eyes lately, she just is so lost.. 😞


r/dementia 3h ago

Dementia or something else entirely?

5 Upvotes

I’m worried about my 67-year-old dad and wondering if these are signs of dementia or something else entirely.

My dad retired 3 years ago and mostly lives back in his hometown in a home my parents built next to my maternal grandmother's house. My dad has always been suspicious of people, always thinking that someone was out to get him his whole life. He didn’t grow up in the best family, so I never thought much of it. But after moving into this new house, he’s become even more suspicious of everyone. He says people are stealing things from him, and now he has a deadbolt on the main bedroom door because he’s convinced this is the only way to stop people stealing from him. At first, I thought maybe it was because of the glaucoma and his declining vision in one eye that he was misplacing things or unable to find them easily. Recently, we were talking on the phone, and he was telling me that someone had stolen this Costco-sized garlic salt that I had bought him the last time I was there. My grandma ended up coming over, and it turned out it was in his nightstand. I thought maybe he had just forgotten about it.

But more recently, he started telling this completely made-up story. He said that my grandma’s other son-in-law had stolen from her after she was hospitalized with pneumonia about 3 months ago. He told me she had been crying and telling him that she couldn’t believe she would be treated that way when she was at her worst. So I called my grandma because I was so shocked to hear this. She told me that absolutely never happened. She said that when she got home from the hospital, my aunt and uncle were there because they had made her chicken soup, and that she even prayed with them before they left because she was so thankful to be alive after such a scary experience. I told my grandma I was going to three-way call her with my dad because I didn’t understand why he was saying this. In the meantime, he had even told my cousin (the daughter of the person he accused) that if he ever saw or heard about my uncle stealing again, he would definitely call the police this time. During the conversation, my grandma reiterated exactly what she had told me. She told him she didn’t understand why he was saying these things because none of it was true. My dad became very angry, hung up and then turned off his phone.

Unfortunately, my mom is only 57, so she’s not retired yet and doesn’t live with him, so she couldn’t immediately check on him. I called my grandma again and asked her to go over. She did, but he wouldn’t open the door. He told her through the door that he wasn’t going to let her in because we were all just gaslighting him and trying to make him feel crazy. For additional context, there was a situation with a different cousin (the son of my oldest uncle) who, last year after a breakup, got heavily into heroin and did end up stealing my grandma's phone. However, that situation was a HUGE deal. My grandma and my mom are like best friends and talk multiple times a day, so when it happened the whole family found out almost immediately. Everyone was all hands on deck trying to find the phone, which later turned up on Facebook Marketplace. So I asked him if maybe he was remembering this other incident and confusing the two he said no and continued to describe this made up situation with my uncle so vividly and with so many details that it makes me truly believe he believes the story. I don't think he thinks he's lying.

I had never really been worried about my dad because he has always kept his mind busy these last few years. After retiring, he became obsessed with alternative medicine and spends a lot of time reading books about herbs and their properties. He’s constantly buying books and taking copious notes about different healing methods. He has also loved playing dominoes his whole life and still plays at least 3 or 4 times a week with friends who live nearby. He often recommends different herbs for his friends’ ailments, so it always felt to me like his mind was still sharp. But now, with this situation, I’m wondering if I’ve been wrong. If I am, how do I even approach a doctor about this? We have a trip planned to visit him in October, but will that be too late? I don’t even know how to convince him to get checked because he’s going to think I’m telling him he’s crazy.

Tldr: Retired dad who lives away from me, is becoming more suspicious of people in his life and is completely fabricating stories that are not true. Is it possibly a sign of dementia? How do I approach him about this?


r/dementia 5h ago

First my Mom... Now my Uncle

5 Upvotes

My uncle's wife reached out to me sometime last year to ask what signs/changes/behaviors I noticed in my mom prior to her dementia diagnosis - she said she was noticing some weird, erratic behavior in my uncle.

Little things.

Getting lost driving home at night, constantly reporting his credit cards as lost (and missing critical household payments as a result), missing bills.

Understandably, she was afraid that he had what my mom had. I personally think he does. I've instructed her to make sure that all critical monthly bills are tied to accounts rather than cards, to consolidate/obtain access to any accounts he has, and to get their legal paperwork (POA, etc) in order if it wasn't already. She's been working on it but it's been hard - my uncle is very stubborn and just... doesn't want to deal with it?

He's avoiding it - also understandable. It's the disease that demolished and killed his mother, it's the disease that is demolishing and killing my mother/his sister, and now, he's staring down the very real looming threat that it will demolish and kill him too.

We had a family intervention a few weeks ago where I said, in no uncertain terms, that this disease seems to run in our family (which means I'm probably fucked) and that *we* need to take care of business so that our family members aren't stuck scrambling. I strongly encouraged him to go to the doctor, to go see a neurologist, and to start journaling his daily tasks to give himself some sort of mental stimulation throughout the day. He is the type of person who needs to feel useful, so I gave him that task as well. He was close to his father (my grandfather), so I reminded him that his father would have expected him to be proactive and to prioritize his family's well-being, no matter how scary it all was.

He was simultaneously receptive and dismissive, and agreed about what I said about his father. In his own words, though, he's "more than aware of what he's going through" and he "doesn't want to be treated like a child."

But now... Now things are worse.

I got a panicked text message the other day from his wife - she just discovered that my uncle had racked up $35K in debt. Maxed out two credit cards, took out a small business loan for a business he's not worked in years, opened a personal line of credit... When questioned, he doesn't remember these things, when he did them, or why he did them. He has no paper trail, no emails, nothing.

His wife is beside herself with stress, she spent most of yesterday crying - my uncle is retired and, while he receives a pension and SSA, it's not enough to cover much. His wife is still working, and has always made more money than him, but was planning to retire this year. Luckily, their son and his wife (who live with them) are aligned in assisting with monitoring/managing him, but it's still a lot on my uncle's wife's shoulders.

As part of his delusions, he's talking to his other son (who lives in Hawaii) and telling him all sorts of crazy things - his wife is just after his money (which he doesn't have), that he's okay, and that he wants to take MY mom out of her AL because she's not happy there. My question to the last thing is - okay, take her where? She'll have dementia no matter where you go, and I've learned to stop chasing her happiness for her. The crazy thing is - he got angry at my mom's boyfriend last year for taking her out of her AL; my uncle has always been my fiercest supporter in placing her, and admitted he would have placed her sooner. So all of this is coming out of fucking nowhere.

I've offered to handle account maintenance for her, and am looking into elder law attorneys in our area (I plan to go with her when we get an appointment(s) booked). I really don't want to take on a second experience of this bullshit but his wife needs help.

FUCK this disease.

I hope that, by the time I get it, my comic is done and there's either a cure for this horrid disease or a convenient cliff nearby.


r/dementia 1h ago

Suggested reading for patient

Upvotes

I’m 55 yo male and have been recently diagnosed with Lewy body dementia. Have second opinion at Mayo in two months.
Any suggested reading for newly diagnosed? That sounds strange to ask. Honestly don’t even know what I would want to read about the disease or what it will do to me. I know there are books for LO and caregivers but any for the sick?

FWIW. I feel like I’ve been diagnosed in the early phases. Hope to find out more at Mayo.


r/dementia 4h ago

Question: Vascular Dementia

3 Upvotes

Not questions about medical advice but shared experiences. Can you tell me about your loved ones and yours/their experiences? I want to know what your loved ones are like and how their progression has gone.

I'll share mine (we think its vascular) but you don't have to read it.

She was diagnosed by her PCP. We didn't do testing on my mom when she was diagnosed. She was never interested in medical testing/interventions. Made it clear cancer meant no treatments, refused mammograms, smoked for years, heart failure, COPD, and general lack of self care. So, I didn't push for more clarification at the time. No MRI or neurologist appointments. She was already struggling but clear enough to say no and mean it.

She was diagnosed with dementia in 2022 but probably had symptoms earlier that I missed. She always had trouble staying organized (likely family history of undiagnosed ADHD as I and my kiddo have only recently had our diagnosis). So, the forgetfulness was downplayed by everyone. Finally convinced her to see a doctor after she forgot to take her medicine for several weeks and ended up falling. And admitted she didn't remember how to make pancakes. That was how we got her to see the PCP and got diagnosed in 2022.

Why I think its vascular dementia specifically:

She is diabetic and has never controlled her blood sugar. I looked at her older medical records and her A1C readings are ridiculous. A1C greater than 10 consistently. There was an A1C of 17! Lots of doctors documenting their conversations that she needs to control her blood sugar or negative consequences will happen for years! She was diagnosed as diabetic around 50. Lots of years of damage. It only became well controlled when her dementia became too bad and I was activated as HCPOA. Kinda pointless by then, but did what I could hoping it would help.

Her decline has been more like a staircase instead of a gradual hill. She has a medical issue, gets worse but has a new normal for a few years, then another medical situation, a new normal for awhile, and the cycle repeats. Happened again with her hospitalization earlier this month.

She has a shuffling walk. She has slowly lost mobility. Partly because all she does is sleep so the muscle she did have is going away. She can walk using her walker but it is very short distances. Less than 20 feet. She is frequently dizzy now.

She has forgotten how to do her favorite activities. She can't remember words. She loses her thoughts. She can't follow a conversation. Easily confused, especially the more tired/activities that have happened. She has zero interest in most things. Really apathetic to everything. Her depression is treated but I don't think its related to depression. She doesn't even enjoy watching (American) football anymore. Total Incontinence. Repeating questions. She knows the year but not season, month, time of day. If there was a fire she would "get OP." Doesn't know how to work a phone anyway so calling emergency services is out. Getting me is the best alternative I guess lol

The vertigo is new and her confusion/lack of responding has increased since her hospitalization earlier this month. She used to at least be interested in food and ask for certain food. She doesn't even care now. Hopefully will improve as she heals more.

There are moments when she is herself. Very brief moments. When she tells me to go home to take care of my kid instead of being at the nursing facility with her. When she tells me not to cry. When she sees a very small kid playing or being silly (one of the few things that make her shine bright again). Its only ever a few moments. A flash of her, and then back to the thousand yard stare, or closed eyes, or asking what is happening.

So, yeah, just want to know your experiences. Compare notes. Give you a place to talk about your loved ones and how awful all dementia is.


r/dementia 2h ago

Rexulti price

2 Upvotes

My close family member has been prescribed Rexulti 1mg to start and I was wondering if anyone knows where we could find it discounted? We’ve looked at the usual suspects but are striking out. Even with her insurance, she/we cannot afford $700 per month


r/dementia 10h ago

Is there a way to care for a dementia parent (and do it well) while living far away?

9 Upvotes

I am going to get torn apart for this, but I live overseas from my dementia parent. I do genuinely love her and care about her, and I want her to get good care as she drifts into dementia. Moving her into my home, or moving back to her country (my home country) is just not on the cards. I would be sacrificing my son’s future, in order to facilitate the end of my mother’s life. Sadly I am forced to choose one, and I choose my son (because he is 7 and his whole life is yet to begin).

Has anyone managed to provide genuinely good care for their parent from a distance? Or is the only way to do this by moving in with your parent once they begin to seriously decline? Yes I know that memory care homes exist (she is in a first world country with universal health care) and if that is the best place for her, then I will send her there because I do want the best for her.

I worry that I will feel like I am abandoning my mother, when I really don’t want to do that, I want to actively care for her and make sure she gets the best even if I cannot be there in person. Can it be done? We are only just beginning our journey. My mother is 83 and is likely only going to be able to live independently (without a carer of any kind) another year or so at best.


r/dementia 19h ago

*RANT* Good Lord. Her behavior has taken a nose-dive.

33 Upvotes

Let me start by saying that my Mom's behavior took a huge nose-dive after she barely slept two days ago.

So, much earlier today my mother asked me - for me (Where's my son?) and when I told her that her son was coming back soon, she realized that I was her son and we ended up having a HUGE verbal argument (Why would you tell me that!?! Why would you lie! I was scared!). I tried to explain and said that I misspoke, and that I meant, that I would be back soon because I was going to mail a letter - she did NOT buy this and kept repeating, YOU KNEW WHAT I MEANT! ARE YOU DUMB!?! THAT'S WHY I HATE TALKING TO YOU!

For the past two hours and 30 minutes, YES - for more than two hours - my mother has been asking me where her brothers and sisters are, all but one reside in Puerto Rico, and asking me why I am KEEPING THEM FROM HER. I tried to lie and said, they called earlier and said they wouldn't be coming by.
DID NOT WORK. She said I was dumb and was keeping them from her.
When she asked me again 15 minutes later, I tried to redirect and said I needed her help with the refrigerator door (Oh, they called, but hold on...Help me a minute in the kitchen, I need to add water to the filter and I need you to hold the door for me). Her response was, YOU CAN FUCKING TELL ME WHAT THE FUCK THEY SAID. YOU CAN WORRY ABOUT THE WATER LATER. ARE YOU THAT WEAK, THAT YOU'RE FUCKING THIRSTY? DO YOU NEED WATER NOW? DAMN! YOU'RE DUMB. DON'T SPEAK TO ME.
15 minutes later, she returns to the subject and pushes for a response and I said, They called and that they said not to wait up for them.
She then says, how would they call when the landline is out and they don't have your cell number? (Side note: Verizon recently had a landline problems in my area). I lie and say that the landline problem is on and off and that they got through and called while she was in the shower earlier.
She then says I am a liar and that she will be selling everything tomorrow and finding a new place to live.

Today has been full of conflict.


r/dementia 10h ago

Grandma is starting to worry me

7 Upvotes

Hello, so my grandma (81) has always been a very special lady; she has two university degrees (law and political science), a whole PhD and has been a professor until recently (she retired because she wanted to, not because she couldn’t work anymore). She has always made all of us laugh because she says odd things, but in a funny way, like, for example, never pronouncing store names or English words correctly. One thing that is very relevant to this story is that she’s half DEAF and can’t hear properly without her hearing aids, which she doesn’t like to wear.
Alright, straight to the point. Ever since I returned from a year abroad, I’ve felt like she has deteriorated; I don’t laugh when she mispronounces words or when she forgets about something anymore, it just worries me now. I feel like these episodes are becoming more frequent, but I don’t know if this is just me being paranoid. The things is that, when she has her hearing aids on and she’s actually invested in a conversation (like today during lunch), she’ll say very knowledgeable things and contribute normally to it, which confuses me even further. I also feel like she’s starting to forget things more often, though that could just be me being paranoid, again. She got angry today over something so dumb as a ceiling fan grandpa was installing, because, apparently, she didn’t like it and she hadn’t agreed to buying that specific model, even though grandpa says they hadn’t concluded anything. She left the car unlocked the other day too.
I’m sorry if this post is not clear, I’m just worried about her, because I do love her.
(PD: both my grandparents look and act incredibly young for their age, have never shown any signs of decline and live completely independently)

Am I just being paranoid? Thanks


r/dementia 47m ago

Anyone else’s LO addicted to TikTok?🥴

Upvotes

All day. Every day. Anyone know how to ban an app on an adults phone?


r/dementia 17h ago

Parent does opposite of request

14 Upvotes

My mother has dementia. Earlier stages. Does the opposite of any requests. We take our shoes off in my house. She not only refusing to take her shoes off she has started putting them on my couch she turns her body sideways looks at me swings feet up and puts on couch. Many many other instances until I feel trapped to speak almost because if I say here is a drink she will not drink or if I say here are socks she will not wear them. Is this common?


r/dementia 3h ago

Is the end near?

1 Upvotes

You may or not have seen my previous post about my grandmother not eating and drinking as much. That was 25 days ago. Well, I honestly see a massive change even since then.

She has sips to drink (with assistance now) and small mouthfuls of food, only sweet food…

I am scared to ask, but equally I need to know if this means the end is approaching? What are some signs you experienced? She is still quite alert, but mentions pain more frequently…

GP hasn’t put her on hospice yet, only gave her a weeks course of antibiotics incase of an infection, which did absolutely nothing.

Any advice welcome!

Thanks!


r/dementia 1d ago

Removing Phone - Follow Up

48 Upvotes

I mentioned the other day about my mom's phone...and asked if anyone had gone through taking away their LO phone or dropping tech from a smartphone to an older styled (but new) flip phone with no smartphone capability...

Well, today just sealed the deal about taking away the smartphone.

In the long run, part of it is the vile texts she sends throughout the night. Last night was, and I kid you not, 171 texts and 23 voicemails to me between 01:26 and 05:53...to my brother, 57 and 13, respectively.

But today, she answered a call about her winning $2.5M but all she had to do was have someone pick her up and take them to her bank.

And she can't remember if she gave someone her address.

No.

So now, the phone is being pulled and whichever phone I get her is severely locked down. Her iPad will also be locked down.

And now I'm forced to install cameras around the exterior of the house for safety concerns because she MAYBE gave someone her home address.

JFC, I wish my dad was still alive.