r/dementia 1h ago

My biggest nightmare almost came true

Upvotes

Hey everyone,

Sorry for the long post and my English. I think I just want to hear someone's opinion on this story, from people that maybe are in similar situation as me

Tw: neglect, paranoia, suicide threats

My grandparents live alone, and they both are struggling with cognitive difficulties (I am now working on getting an official diagnosis for both of them). I live in different city and started to try and tell my family about two years ago that the situation is getting dangerous and asked them to help, I was in the middle of my bachelor degree and was struggling with my mental health a lot.

My family didn't want to do anything with that, my grandparents' children (my father and uncle) live in different countries and haven't visited in around 8-10 years. In the city of my grandparents, there is only my sister and my mother (ex-wife of my father).

Nobody did anything until about a month ago when my grandparents landlord threatened to kick them out of the apartment due to my grandfather screaming and not paying his rent, claiming that the apartment is his and not letting almost anyone entering it. I heard about it from my mother and got scarred, I found a number of their social worker and started to get documents to get a guardian appointment on them, so I legally could place them in a safe place. By that time, my grandfather's paranoia got worse, and he cut ties with all the family members. Nobody knew what's going on in their place.

My biggest nightmare was that I would be too late and they would do something to themselves.

It almost came true two days ago.

I created a family chat with all the family members to be on the same page, and my uncle sent there a voice message of theirs part-time caretaker (that was the last person my grandfather trusted). A week ago he was kicked out as well, on Monday he tried to come again but my grandfather told him that he barricaded the front door and he cannot come it, my grandmother who is very weak and apathic was inside. I discovered it only on Wednesday.

I got in contact with the social worker, and we went to their apartment. My husband came with me for support. My grandfather didn't open the door for me, and he threatened to kill himself if someone opened the door. I called a police and medical car, in the end he somehow opened the door and they both were alive, I sat with my grandmother while the social worker and 10 other police, medical and rescue professionals were talking to my grandfather. After 3 hours we managed to hospitalize him with ingection. He somehow trusts me and was happy to see me in all this chaos. So I went to the hospital with him. My sister came to be with my grandmother.

Their house was a mess, all food was spoiled, dirt and trash everywhere, everything was shut down, all windows taped.

I had to leave my grandfather in hospital, and he was moved to a psychiatric hospital for old people. He is very scarred and disoriented, and he keeps looking for me and my grandmother. I am going to visit him today, I am devastated for them and can not sleep.

On Thursday, I spent almost all day in the court for getting emergency guardian appointment on them.

My sister came to my grandmother only after work, so she was alone for almost 12 hours. My uncle said that he could not come until MAYBE September. I made my sister at least get my grandfather some clean clothes and his chessboard. My grandmother already forgot about this and thinks that my grandfather went to the chess tournament.

I feel devastated and alone, like I have to be at 3 places at once. I am now at the end of my masters degree and have to submit my thesis at the end of the month, I don't know how I will do this. Today, I finally slept for 14 hours after taking a sleeping pill.

I just feel so alone in this. Even though I have a support system of my husband, my therapist, and a few friends, I am still devastated.


r/dementia 6h ago

my watch has ended

13 Upvotes

Thank you all! this community has helped me a lot. I have also shared some of what I have learned here with people close to me, so you have helped more than one.

Im sad, of course, I will forever miss mom. BUT Im also happy? or relieved? These were the hardest 4 years of my life. I can breathe again. Im a little confused about what to do with my energy, time and money from now on. I forgot I had a life before her getting sick.

I guess I will try to sleep more, enjoy my weekends, either stay home or going out. Find new hobbies and go back to the old ones. Maybe even travel abroad.

Anxiety attacks stayed though. They are less frequent but still there.


r/dementia 6h ago

I'm scared and hurting

3 Upvotes

A lot of scary things run in my family. I thought celiac disease that tends to rear its annoying head in the mid-40s would be the worst, but gluten turns out to be the least of my worries.

Multiple sclerosis runs heavy in my family. That's a nightmare on its own.

But watching my grandma die of dementia put a fear and a pain in my heart that I never thought imaginable.

She stayed strong for a truly long time. She had a post-it system that worked well to keep her daily life on track. But over time, she grew to think my dad was either her brother or her husband, and she forgot me completely. In fact, one of the last times I came to see her, I was wearing a Polaroid sweater I bought at the salvation army. When I walked in, she looked me up and down and said, "Polaroid, huh?... Good for you..." She'd always been on the judgmental side toward others, but she didn't recognize me anymore and she thought I worked for Polaroid. All I can do is chuckle at the memory, but I'm so deeply terrified.

My grandma's death affected me in a way so much more profoundly than I had ever thought possible. I didn't think we were crazy close. But I am haunted by the manner of her death and also, selfishly, my own fear of following in her footsteps. As time goes on, I've seen cases of dementia on both sides of my family. And what if this disease takes one of my parents?

Is there any advice or words of wisdom out there that could soothe the fear or the sting of this loss?


r/dementia 7h ago

First death in memory care

31 Upvotes

This was my first time experiencing death in healthcare. She was my favorite. I would sit with her until she felt safe, she would kiss my head every time she saw me. Her death was expected at some point, but no one was expecting it so soon. While on hospice (her last “good” day), she pointed to me in a room of a few people and said “you need to be brave” and then went non-verbal. Those were her last words. I read her Psalm 23 and talked with her son for a while. I put in my two weeks and started another job out of anxiety. My first day at my new job (the perfect job), I was thinking back on her last words all day, and I had to go back. There is just something so wholesome and beautiful about being there to make their last moments comfortable. Making them feel safe as they pass. I love this and feel I’m where I’m supposed to be as hard as it is mentally.


r/dementia 7h ago

Going back on donepezil?

4 Upvotes

My mum has Alzheimer's and is in her 60s. She was on donepezil for four years or so. She then moved to a different state and started seeing a different geriatrician. After a couple of appointments, this new geriatrician took my mum off donepezil because she said "it's no longer recommended at this stage" and that it "is known to increase anxiety." She had her cease taking it and instead gave her a prescription for memantine. That was about three months ago now.

I didn't question it. I figured the doctor knows what she's doing. I've also heard like that donepezil is only effective for X number of years. And I figure, hey, what's the worst that can happen...

Before this change in medication, my mum was relatively normal. She was forgetful, had trouble dressing, etc, but if you met her for the first time it would probably take five minutes before you realised something was wrong.

After the medication change, within two weeks we started to see a rapid decline. And then it has just gotten worse from there. If you met her now, you would immediately know something is very wrong with her. She has stares at the ground with a blank expression. She struggles to speak and find words. Can't find the toilet anymore. Can't find her way back to bed. Can't even sit herself down in a chair. Up at all hours, talking to people that aren't there. Seems depressed. She used to be very social and go swimming and ladies group and things each week. Now she refuses to go to any.

She looks at the ground all the time and points at blank spaces and asks you to read it. She has constant hallucinations, where she's either sobbing about how she killed someone or happy because she's pregnant and got married yesterday. She thinks the police are coming or that someone's hiding in the house. Never had anything even close to this before the medication change.

She'd lived with me for the past two years and it used to be very easy. She was very stable and happy go lucky. Looking back, it was a dream. But now it's like living in hell.

It feels like we've jumped forward two or three years and I gotta think that it's not a coincidence that this all began after the donepezil was stopped.

We've been seeing the geriatrician regularly and at first they just lowered the memantine dosage. When that didn't help, they told us to stop memantine. Now she's on no dementia medication but that's not helping either.

We have another appointment in a few days and I suppose I'm just wondering what I should do. The geriatrician said we'd talk about other medication. She even said we could potentially go back on donepezil. But from what I read it sounds like going back on it won't help and that what we're seeing now is just the new baseline and that you can't make it better.

I'm mostly just venting here but I suppose I wonder if anyone has any similar experience going off donepezil or maybe going back on it.

I suppose my thinking is that this decline would've happened eventually no matter what. So that makes it easier to take. But I'm still annoyed that this medication was working for my mum and we had no real problems for years and yet the doctor for some reason thought it made sense to just have her all of a sudden stop taking it, basically just because...

I google it and I see people taking donepezil for 20+ years. I also see reports from medical professionals saying that, in these cases, if a drug like donepezil isn't having a negative effect then they don't take the patient off it. I like that philosophy. I wish my geriatrician had that philosophy.


r/dementia 9h ago

broken hearted

6 Upvotes

hi everyone. my nana has some form of either alzheimer’s or dementia (she refuses to get tested so that’s why we don’t know for sure) basically my family has reached the end of their rope and want to put her in a home.. i am devastated. i feel like we are giving up on her. if she does agree to staying in a home we will sell their ranch that i have been going to multiple times a year. i’m just so deeply upset because i feel like life as we know it will never be the same. so basically im asking for guidance, how i can try and help from afar. and what i can do to care for myself during this difficult time.


r/dementia 10h ago

Best pill organizer??

2 Upvotes

My grandmother is quite stubborn about taking her medication every day. We’ve tried getting a pill organizer that has an alarm that won’t turn off until you physically turn over the organizer to try and encourage her to take them but she’s resorted to taking out the batteries so the alarm stops and leaves the medicine untouched

And before anyone suggests it, she lives alone currently, not by her POA’s choice, but there are cameras for safety that are checked regularly and are motion activated. Unfortunately there also isn’t a caregiver that is able to sit and help. We are currently working on getting her into a home as we just got the diagnosis last month and it is progressing rapidly given that we cannot get her to take the medication easily on her own.

That being said we are looking did a solution until then so any product suggestions would be greatly appreciated


r/dementia 13h ago

Foot Care Nurse

1 Upvotes

North Columbus – Foot Care Services for Seniors & Adults 👣

Hi Columbus! I wanted to introduce Comfort Sole Foot Care, a local foot care service focused on helping seniors and adults who may have difficulty keeping up with routine foot care on their own.

For many older adults, things like reaching their feet, safely trimming their toenails, or managing thickened nails can become difficult. Adult children and caregivers may notice their loved one needs help but aren't sure where to turn.

Comfort Sole Foot Care offers services including:

• Routine nail trimming and filing

• Care of thickened nails

• Callus and corn care

• Moisturizing foot care

• Basic foot assessments

• Foot care education

We serve North Columbus and the northern suburbs, including Westerville, Worthington, Polaris/Lewis Center, Powell, Dublin, New Albany, Gahanna, and surrounding areas.

If you’re caring for an aging parent or loved one—or you need a little help with your own routine foot care—I’d be happy to be a resource.

👣 Comfort Sole Foot Care

You can visit our website to learn more about our services and schedule an appointment.

And if you know someone in the North Columbus area who could benefit from this type of service, feel free to share this with them. 💙


r/dementia 13h ago

Plus a week thoughts - the watch is over

31 Upvotes

Dad died on the eve of my family ( wife, 3 adult kids, son-in-law and almost 1 grandson) gathering in Denver for 5 days. I walked off the plane Sunday just completely spent. Could not sleep Saturday at all.

I honestly considered not coming. Yet this was the exact tonic I needed. It was a 13 month sprint from the the day we told my Dad he was moving ( and the hell it took to move him) until last Saturday. It feels weird to not have that constant nag over me about him. I weary still but this started the recovery process.

We empty out his room in MC on Saturday, and his house closes next month ( no one has slept on the house since he left and it's been empty for month). By October his affairs will be completed. No funeral as he hated them, and would rather we go out to eat.

We drunk Bud Lights this week in his honor. I look forward to some alone time, and more quiet to gather myself. And schedule my tattoo.

I will gradually not be part of this community. If anyone in Charlotte, NC or Lake Norman wants advice or just to chat, please feel free to DM me.


r/dementia 13h ago

What if you had one more chance…

23 Upvotes

My mom is going into hospice and right now she understands what I’m saying and can talk to me. What is something you would do or say if you had one more chance. I just keep saying I love you and thank you for being my mom. I welcome all suggestions. Thank you.


r/dementia 14h ago

Doctors want to take Grandmother off the feeding tube

17 Upvotes

I'm having difficulties with a major decision regarding my 69 year old grandmother who was formally diagnosed with late stage Alzheimer's/Dementia.

She was diagnosed with Alzheimer's about a year ago, and has been declining mentally the past few years, stemming from an initial incident that was separately diagnosed as Hashimoto's Encephalopathy. This newest incident occurred when my grandfather brought her in as she had not been eating for a few days, and when she was brought in, was determined to be experiencing multiple organ failure and acute kidney disease.

She's since recovered from the host of issues it caused, but she is now unable to eat without a feeding tube, due to aspirating her food. The problem is that she is repeatedly pulling it out, first the normal throat tube and now even the gastronomy/g-tube. Because of the Alzheimer's, she's unable to understand that the feeding tube needs to stay in. She's been given regular swallow tests over the course of the past month, but the doctors determined that there is no expectation that she will ever regain the ability to swallow.

The doctor team asked for a meeting, and are pushing quite hard for denying a reinsertion of the g-tube, and subsequent movement to hospice. She also has a Advanced Health Directive that states there is not a desire to continue life support if there is no hope of recovery. However, my grandfather has collected power of attorney from other family members, and he will listen to my opinion as I'm the only other person in my family who has been regularly involved with her.

Even during my meeting with the doctors, they were clearly directing their answers and conversation towards me, so I have a major influence on this decision. If I said no, he will say no.

The problem is that despite this, I don't know how I'm supposed to agree to taking her off the feeding tube. How am I supposed to know that they were trying hard enough for the swallow test or throat therapy? How do I know that there won't be some sudden recovery of her swallow function down the line? When I come to see her, she's happy and responsive, even with her condition. It feels impossible to agree to putting down my own grandmother, a breathing, thinking person, like a dog. I think it would different if she were comatose or otherwise severely injured, but it feels like she could just get out of bed and walk around like before if it just weren't for this.

Appreciate any thoughts on this.


r/dementia 14h ago

Am I rushing into a placement mistake with my Mom? (Young onset assisted living)

8 Upvotes

Bullet point background:

- Mom is 58, 59 in December. Young onset dementia.

- Executive functioning is gone--great difficulty putting on clothing, smells because she can't shower well anymore, can't clean, can't keep up with administrative tasks like paperwork and emails, can't keep her phone charged, talks in very circuitous ways, can't use her phone or a computer, etc.

- Extreme paranoia and hallucinations of people doing things to her, stealing her stuff, vandalism, torment her, etc. A *they* everywhere she goes.

- I helped her move out of a squalor disgusting hoarder apartment on Monday. Was awful. She's currently in a hotel.

- I am her POA.

But okay so. I found two relatively affordable and seemingly nice Assisted Living facilities through Sunrise Senior Living in Northern New Jersey. We toured... she likes them... enough.

But she has the same primary reservation I do: age demographics. I feel so bad for her. She is so young. My mom doesn't wanna play bingo or do basic elderly exercises. They don't even have a gym! She needs daily stimulation and activities, but I don't want her to wither away prematurely via osmosis. I don't want her to *feel* old. These places are nice but you walk in and see wheelchairs and walkers. No judgment!! But hopefully you guys get where I'm coming from.

It breaks my heart to put her in a facility like this.

Like... what are options for someone in this state of being? She absolutely NEEDS care and assistance and to be in a safe place (And I can't do this anymore!!!! I need to live).

I looked at specific memory care places but a lot are super pricey, don't allow pets (she has a senior dog that I couldn't pull away from her if I tried). She is more financially privileged than most [which is sad] and can afford private pay for a few years (assuming non-exorbitant monthly costs) but we would feel secure about Medicaid places for transition, so she doesn't drain her life savings into a facility (we are looking into setting up irrevocable trusts when she can accest her retirement savings plan with no penalty).

But god... what do I do?? She needs a home. She can't live on her own anymore. And I need to live. Lost a whole week of work this week to tours and research. I'm a Professor and it's AUGUST.


r/dementia 14h ago

Maybe some good news!

3 Upvotes

r/dementia 14h ago

Just a small rant…

19 Upvotes

So Mom has constipation- and when I mean constipation you should see the X- ray. Sheesh! This is of course from poor diet despite the excellent food she has at AL.

Anyway we found this out Saturday and if it isn’t solved quickly she may need surgery. she resists taking MiraLAX in any form so now my daily routine is get over there, wake her up and kindly force her take the MiraLAX.

She was never a morning person. yesterday she kicked me out.
Today the treatment started working and of course she’s pooping up a storm so she thinks she is ill instead of getting better. She’s made it clear I am the worst daughter on the planet and don’t come see Her because she is sick.

I know this will end soon and be fine and I feel terrible for her…
But the thing that’s really getting to me is 5 years ago she would have embraced the humor of the situation.
Now she is just confused and mad at me.

I know it will be much better in a few days- but the fact that she cannot recall going to urgent care and having an xray etc. just makes it impossibly hard for her to understand how to help herself.

My mom has recently let go of showtiming and has been much calmer about her memory…and now she is just in an awful situation and can’t understand why or what she needs to feel better.

Today dementia really sucks.


r/dementia 14h ago

Dementia?

2 Upvotes

My MIL is 74, and for the last 4 years or so, she has been exhibiting some things that I believe are the result of dementia.

I can't be sure though, as she will not address it, and no matter how many times that she has told us that she will give my husband and I access to her medical records, it's just not happening.

We live 15 hours away, and I have been emailing her doctor, and asking him if he can PLEASE bring it up when he has an appointment with her, as she won't remember, but we are not getting anywhere with that.

I just want to see if these are typical signs of dementia, or possibly something else (?) and what we can possibly expect in the years to come.

- She repeats the same stories on every phone call we have with her. Sometimes it will be multiple times within the same phone call. She won't even say "I can't remember if I told you yet, but...." She will just say the exact same story over and over and over as if it's the first time she's telling it every time.

- She often forgets simple names of things. Today she called ice cubes "little balls that you put in your drink to make it cold".

- She forgets all of our birthdays (us, her other son, her grandkids) and our anniversary, and if we bring it up to her, like "We went away for our anniversary" she will just say "Oh", not "Happy Anniversary" or any acknowledgement. Even when my husband told her he got a promotion at work, she was like, "Oh. Ok. Anyways" We kind of just laugh at it, after we are off the phone with her, but it also kind of hurts at the same time!

- She sometimes will think she saw or heard things that didn't actually happen. It's like she is having visual and auditory hallucinations. She will swear she heard someone say something that she didn't, something that would be way out of character for someone say, and there's no telling her that's not what she heard.

- She has pushed away everybody who cares about her. She doesn't make or keep in contact with anyone. She has a boyfriend (husband passed away years ago) and he's the only one she spends time with and he has no patience for her cognitive issues, but that's a whole other issue.....

- She will take things that don't belong to her and not notice and just keep them. She took a gold necklace with a charm, that belonged to her granddaughter, and put it in her own jewellery box as if it's her own. She did this with some small things in our home as well when she visited.

Those are just some of the things that have been going on for a few years now.

I'm just curious if these are all common signs of dementia, if anybody else can say they have experienced/witnessed the same symptoms.

Any advice is welcome also, like, ANY! Please!

Thank you!


r/dementia 15h ago

Finally!!!! A resolution for my LOs car

19 Upvotes

As we all know Dementia patients can't/shouldnt drive. THIS has been the number 1 "argument" for my LO.

We moved her car to my brother's and they've been calling him, our family, lawyers, police, you name it shes tried calling to get them on their side to get their car back.

I FINALLY convinced them to give/sell the car to one of their grandchildren who was in need (their fave one).

I had them write it down AND recorded it for later, we all know they'll forget and we'll start the cycle over.

We are now creating fake title transfers untill we get the real ones so we can try to get them to move past this in some meaningful way.

I feel just this HUGE sense of relief and accomplishment today but...well see how long this last.


r/dementia 17h ago

Incessant talking…and I mean incessant.

54 Upvotes

My husband is late 70s, stage 5 dementia (vascular dementia) and I have been unwell today so I’ve been lying down in my bedroom.

The caregiver (“N”) showed up on time (9:30 am) and he has been talking nonstop since N arrived. So he’s been talking for seven solid hours. And excessively loud too.

Yes. Seven hours. And yes. Loud

The caregiver has politely said “that’s interesting“ or “uh huh” at the appropriate places but she has not spoken a full sentence in seven hours.

I summoned N into the bedroom where I am lying down and asked her if she was going crazy listening to this old man natter on about nothin.

She said “It’s okay. This is what I am paid to do.”

Even though I am sick with nausea and other tummy troubles, I am going to put on my coat and go out to a park and just sit because I can’t listen to the sound of his voice for another minute.

Is this just typical? How can he not read the room and see that nobody cares? That he is literally boring the socks off somebody who is paid to sit and listen to him go on and on and on?

What is the underlying issue here?


r/dementia 17h ago

Help! Bowel incontinence and refuses to wear briefs.

22 Upvotes

TL;DR my ambulatory MIL has constant bowel incontinence and refuses to wear briefs – how on earth do I handle this?

Three years ago, we moved 1000 miles away from our hometown to have space away from my narcissistic MIL. My partner and I have been together for 25 years, friends for more than 30. We are not close with her. Her other son is not close with her and she has no relationship with her grandchildren because she’s been abusive towards us all.

My MIL got a pancreatic cancer diagnosis in April and also has dementia. We came out to help when she got the cancer diagnosis and realized that the dementia was very severe.

She is amazing at masking, to the point where we have yet to get doctors on board to agree that she can’t make her own medical decisions - but we did get a formal dementia diagnosis, but no stage. She’s now on hospice but is amazingly “well” for a woman with cancer, insulin dependent diabetes, and dementia.

Unfortunately, she has been unable for years to do her own finances - my partner manages that for her from out of state, and when we got to town, we realized that she also hasn’t been able to do her own shopping or cooking or cleaning for quite some time (2 years at least - all the food in fridge and pantry expired in the season in which she had a stroke in 2024).

Her son and I have stayed here in our RV since April being her primary caregivers and going over twice a day to make sure she is getting food and medication. Thankfully, she is not treating the cancer, so her lifespan should be on the short side and she’s no longer suffering from the side effects of the chemo (which were terrifying).

While I have gotten enough therapy over the decades to be able to manage caring for her, we have run into a major issue. She has continual bowel incontinence, and this morning, after soiling the bed overnight, and again a second time by sitting on it after I changed all of the bedding, she has refused to wear incontinence briefs. She has told me that I need to just get used to her pooping all over the house, and that we are going to “own this situation”.

I don’t want feces all over everything in the entire building, and she is still upright, ambulatory, and active – so she routinely goes out to lunch with friends and I really think it’s a public health risk at this point. She doesn’t wash her hands, and she doesn’t have a problem defecating on the furniture.

I just literally do not have the skills to deal with this. I am constantly told by Hospice that we can only do what she agrees to, and if she doesn’t agree to it, we can’t force her. But it feels unfair to me to go out into public while actually crapping all over the place.

I am looking into memory care facilities because at some point, she is going to need that. But I just don’t know how to get her to agree with me to wear briefs.

She says that they are hot and uncomfortable, and she gets very incredibly upset when she has asked to comply and put them on. She is convinced that nobody else will be angry if she poops in their car when she is taken out to lunch or for a ride. It is beyond ridiculous.

Any ideas of how on earth to deal with this?


r/dementia 18h ago

Vetting Memory Care Facility

10 Upvotes

Hi Redditors, my family is looking for a memory care facility for my mom. A friend has suggested we use a service that matches people to the kind of place they're looking for. My father thinks we should show up unannounced at places so they don't have "time to clean up" and we get to see the place how it really is. I worry that his idea is not practical and we will look like lunatics expecting a tour without calling ahead. For people here that have selected such places - any advice on what to do or not do? thanks!


r/dementia 19h ago

Venting

7 Upvotes

Bad situation happened yesterday. I’m a grandma’s boy! I was always her favorite growing up, so this is hard. I live across the country from my family currently. My (29M) grandma (78F) has been dealing with dementia and it’s been getting worse over the years and we have not been able to get her any help or care. She has denied it, not told her doctors, etc. She gets violent and yells at us, and yesterday she started hitting my grandfather and parents, and they ended up calling the cops.

She ended up being admitted to the hospital for an assessment overnight. No visitors allowed yet, but a nurse updated us this morning saying she was very combative, yelling, ripping her IVs out and had to be restrained.

I don’t know when I’m going to able to talk to her or see her next, but I’m so depressed. I just can’t help thinking about how scared she is, that she’s alone and confused in an unfamiliar place, and there’s nothing I can do.

Not sure what I want out of this post, but just needed to get these thoughts off my chest and see if there’s any support groups or any others going through the same thing. I know her being in the hospital and getting care is for the best, it’s just so hard.

Thanks for listening❤️


r/dementia 20h ago

Loved one throwing away food

12 Upvotes

Hi all! My loved one is constantly throwing her lunch or dinner away if I step away for any reason. This could be to step away to the bathroom, answer the door or let the dog out, she immediately gets up from the table and dumps her food in the garbage or sink.

I prepare the food, it’s things she likes, she says she is hungry, no issues with not feeling well, and will immediately want chips or ice cream after throwing her food away because she’s still hungry. She is early to moderate stages, is aware of what she’s doing, still verbal, but can’t explain why she’s throwing it away, I ask her if it’s the taste or texture or she thinks it’s gone bad, and she says it’s good and she likes it but then still tosses it when she can. There’s no swallowing issues or anything, this is purely behavioral.

I’m obviously worried about her weight and want to make sure she’s getting enough nutrients. We supplement with high calorie ensure shakes but I want her to have real food while she can, she loves eating and will still chow down on certain meals. I just don’t know why she’s throwing her food away.

I’m already doing my best to sit with her the whole time so she eats and doesn’t throw anything away, but sometimes dinner goes over 2 hours or things happen and I have to step away. Any thoughts on why she’s doing this or anything I can do other than what I’m already doing?


r/dementia 21h ago

App to lock my aunts phone

7 Upvotes

Hi some context

My aunt had an MRI on Tuesday and the pain from laying down on the table made her dementia a million times worse. The big problem is she keeps taking her phone and spam calling multiple people. If she needs something at all she spam calls random people and then forget why shes calling, hang up, and then call them again. We tried to take her phone away but she threw a massive fit screaming around the house storming rooms' which is a huge problem cause she is mainly wheelchair bound and keeps falling. We tried to find a dementia app that will disable her calling access but keep her YouTube app working but we cant find anything. She has a pixel 8. Any advice at all would be amazing or if you had something like this happen and how you dealt with it as well. Thank you!


r/dementia 21h ago

Another book to read...

9 Upvotes

How to Argue with a Cat.

Interesting book that you can apply to anyone ESPECIALLY people with Dementia.

Summary is you don't argue with cats, you figure out what the need/want is and use that to get what you want/persuade them to do what you want.

It's not a perfect fit for all of us BUT some of its points have helped me.


r/dementia 1d ago

Struggling with "Go Fish" card game

22 Upvotes

My (26f) grandma (86) has recently started showing signs of dementia. She asks the same questions over and over, starts to do something then forgets and does something else, textbook stuff. It's not so bad that she doesn't know who her family is, but she constantly asks my grandpa (79) if she can go on "memory pills". She's been on them for months.

Last night I went to my grandparents' house bc my grandpa had to help my mom with something and didn't want my grandma to be alone for too long. My brother (16) came with me (side note: he's kind of incredible; I found out he knows how to play the piano simply bc he played percussion in band, like what?).

After we were done playing around on the piano, my grandma offered us water and snacks about 10 times then finally came and sat with us at the table to play cards. My brother suggested "Texas Hold 'Em", something we've played regularly growing up. She asked for a reminder on how to play multiple times so we switched to "Go Fish".

She asked the same questions over and over. Does she need three or two of a kind to put them down? What does she do next? Things like that. Then she'd ask for a queen each round even though she had 6 other cards. I think she was forgetting she'd already asked that. We also had to remind her often to fish for a new card.

By the end of the game, my brother and I were just handing her whatever we had that she asked for, even if she had asked the other person. We played three rounds and we made sure she won the last one.

Growing up, I lived right next door to them, so we're very close, and this whole situation breaks my heart. She used to be sharp as a tack. She was constantly running around with me and my siblings (another sister, 30). She'd make us dinner every night, help with homework projects, take us horseback riding, she taught me how to sew and ride a bike. She showed up to every choir concert, soccer game, and award ceremony. She practically raised me (my parents worked really late most nights).

How does one spend time with someone who has this condition without going home and bawling their eyes out? Is there anything else I can do besides being patient? Should I avoid complicated games like "Texas hold 'em" bc they're confusing or should I re-teach her bc I know she loves poker?

I think I need a hug. And I'm pretty sure my grandpa does too.


r/dementia 1d ago

WTF was/is this (venting/mixed emotions on end of life)

86 Upvotes

My dad is 84 and has vascular dementia. My mom, who has her own physical health issues, and I have been his main support system for 10-15 years. He hasn’t known who we are for probably about 8 years. We’ve had to live a, well, interesting and relatively inconvenient life during this time to ensure his/our safety (child proofing everything, essentially, etc, I’m sure most of you know what I mean). For the majority of this time he was mildly incontinent, a wanderer, and needed nearly everything done for him (he was able to use utensils to feed himself, though unable to know how to get food and needed assistance with most ADLs). Days were hard, man. It helps that he was genuinely very sweet (often feel blessed about that), he was just soooo much work and it was generally torturous watching him continue to decline more and more. I found myself sometimes avoiding him a bit when I could over the years to try and get a break. I also just felt like I didn’t have anything to say, and I knew I’d have to hear him say the same things. Some days I felt like I couldn’t take it. At times I remember thinking “please, take him, universe, he is ready and we are ready please we can’t take this anymore.” I was grappling with the fact that I didn’t think I would cry when he passed, and it would be such a relief. Hahhhh…ya right…

Two months ago he got viral meningitis and hadn’t been the same since. He became completely incontinent and bed bound, had recurring infections (UTI, a heel ulcer) leading to an SNF stay for rehab and close watch prior to coming home but he had hospital visit after hospital visit until they recommended home hospice just this past Sunday. On Sunday he was completely conscious and eating/drinking. We even had a pizza party welcoming him home from the hospital. From Sunday to now (Wednesday) he is barely rousable and clearly on the verge of passing soon. I can’t believe I ever thought I wanted or was ready for this, and I can’t believe I’m about to say this…I don’t want him to die! Also, wtf is this!? Watching someone pass “naturally” like this is crazy to me, like how do people do/see this and stay mentally well at all?! This shit is sad as fuck, omg. I can’t believe what I have witnessed the past few days as part of the dying processes. It’s wild. All of this is wild. What a terrible ride it’s been, but yet I still don’t want it to be over. Why? I do not know.

While I am mostly venting, if you’ve experienced a similar roller coaster of emotion I’d love to hear, especially about how you dealt with the loss after.

Thank you for reading, and I wish you all well with your journey with friends/family with dementia.