I've (49f) posted before in this community before about how I'm not sure if I believe mom's (68f) diagnosis. So just a quick recap of that post... Mom has always been a bandwagon jumper for attention and now that her sister has aphasia and her friend has dementia, she does too. She has some cognitive decline due to mini strokes (her report of Dr visit 10+ years ago). I have seen the cognitive decline, not being able to handle complex things, but she talks about her memory issues more than she forgets things. I think her issues are more depression and age related.

Right now I live 10 minutes from mom. I go with Mom to all her Dr appointments. I do not own a car, so we use hers. She doesn't drive on highways, so if she wants to go farther than Target, I drive. I also use it for special events, like my monthly date with my 13 yr old nephew. My sister passed away 2.5 years ago and we didn't have any other family in state, so that is very important to me.

For a couple years I've been wanting to move closer to my son and grandchildren. They live in a town 30 minutes away. I received a call yesterday that the townhouse right beside them is available June 1. This is the perfect scenario, my son's been a SAH dad and now that the 2 oldest (8 and 6) are in school all day and it's just the 3.5yo at home, he wants to go back to work. I would be right there to babysit him and get the older kids off the bus in the afternoon. Plus, this was always how I pictured it being once I had grandchildren.

Would I be wrong to move away from mom rn? If I do, the plan is she'd move near me next year when her lease is up. I'm very torn with this decision I need to make today. Any advice?

I just found out I am the beneficiary of at least one policy for my dad. I am his legal medical guardian but not financial. He is probably going to transition in the next year or so, and I am trying to plan as much as I can so I can do the grieving thing without the mess of the life things. Anyway, is it weird to call and ask for a copy of the policy? I don’t want to look like I am looking for money or anything, but I don’t work and if I have to come up with money for aftercare, I need to know beforehand. His wife pretty much said he will be cremated and that’s what that money is for.

He lives inna nursing home, so it’s not like I am being shady. But is it in appropriate?

Got the ok to visit today. Hope I don't upset him. Any advice for a 1st visit?

It’s so hard sometimes. I made her a personalised quilt, it took me a year of after work sewing and knitting. I brought it to her excited to see her reaction and I happened to show up during a very important moment in one of her tv shows, which caused her to miss what was said and she was furious. Couldn’t focus on anything other than the tv show.

She spent the whole time i was there huffing and puffing, threw the blanket to the side and said “it’s alright” when asked what she thought in between ranting.

Then I left and felt awful. It never gets easier.

Just sharing some positivity for a change on this Tuesday morning.

I haven’t really had much of an intellectual conversation with my grandma in months, her communication has really deteriorated especially over the last few months.

This morning I was just making my one year old some porridge, my grandma was getting herself ready to go to her usual weekly daycare visit.

She just pointed to a picture of a sliced up banana on the porridge box and asked “is that what I have?” So I told her it was.

“Oooh I really enjoy them. When I was younger my dad used to buy me them all of the time!” So I said “oh did he? We do for you now!” And she smiled and then asked me if I liked them, so I told her I did and it just brightened up her day.

As much as I always feel so happy and positive in moments like this, it does also make me feel sad that we are slowly losing her. And more and more of her every single day. But it’s all part of the journey I suppose

I’ve given up my life helping to take care of my dad for 4 yrs…. And anyway, my mom is my dad’s main caregiver, my Mom is literally killing herself taking care of my dad….i don’t want my mom to die before my dad…. So to me, putting my dad into a nursing home is protecting my mom..

The emotional part aside I’m sad to say it was a bad placement and I have to move my mom out already. After the Director of Nursing herself did the assessment we were quoted $4400/mn. First day of move in they tried to increase her a level and charge an extra $500/mn, she said she made a mistake counting points. We had her 30 day review then they told me they wanted to increase her two levels. Finally today they wanted to meet again to increase her 5 levels from move in! Double the agreed upon cost of care! Almost $7000/mn.

The writing on the wall is clear they do not want to take care of my mom. I’m so blindsided by this and they got an extra $2000 non refundable fee so they are happy. I cried a lot today. I have to figure out a new placement for my mom and move her out within two weeks. On top of the pure hell it’s been to move my mom out she has to go through a big transition again. I am not happy. Very pissed. I feel I have been bamboozeled, swindled and fleeced. I asked several times when signing the contract if they would be in raising the level of care at the 30 day review they said no.

I asked specifically if the place could handle dementia, med management, and incontinence they said yes and for that price. I have lost all trust in the facility and management. I’m trying to figure out how I can report this later to someone as it feels they did not act with integrity here.

Any thoughts or ideas? Anyone else experience something similar is this normal and I just got got swindled as a nube on a used car lot? I am so stressed and want to scream into the void. This just sucks so bad.

i'll try to make this short but my situation is really fucked up and complicated. im 19 years old. i live with my grandparents, my grandmother is 64 with late stage dementia and my grandfather is the same age. his doctors believe he is in the early stages as well. he had a stroke a while back and he hasn't been quite right since then hes been getting his words mixed up more and more and is often confused. he and i have been taking care of my grandmother since she got diagnosed but things are going downhill fast and i know he won't be able to do it for much longer. i am their only caretaker and i just feel so overwhelmed im not equipped for this kind of thing at all. i've been trying to get outside help but i don't have POA over either of them which has made it really hard to get anything done as far as medical care. they are my dads parents but he's in prison. i don't have any other family who are willing to get involved. i just feel cheated i think i am too young to take this on by myself but right now i have no other choice. our house is filthy and i so desperately want it clean but things are so far gone i don't know where to start i feel like im in a hole i just can't climb out of. i do everything i can but i know we need more help i feel so guilty like im neglecting them. any advice would be appreciated

Has anyone had a really good experience?

My poor mom has been to two places since Jan 2024. Both looked amazing, one was referred by placement nurse, I check ombudsman, DSHS records, etc. Both places have ended in horrific experiences with the worst staff. Unbelievable things, life threatening. Thank God I have care sitters with her to be my eyes and ears, my mom's companion and to help advocate. But memory care are around 7k a month at least and for what? I need private care sitters because they don't care for residents.
They post a few activities online like it's this enriching environment (it's not), med staff that ignores residents, crappy food, and nasty management - I swear these women in MGMT levels have personality disorders or something. At least the ones I've had the misfortune of dealing with. They are unhinged.

I'm exhausted, heart broken for my mom. I'm in another state and desperately want her here but she needs medical treatment first. So here we are looking for another place. I feel sick, I think these places are terrible snd toxic and see our loved ones as $$ only.

I'm just wondering if anyone has had good experience and can restore my faith in this industry.

Hello,

My mother lives with my dad, who is suffering from dementia and daily bouts of delirium. The delirium has taken a bit of a turn recently, as he’s started to get mildly physically aggressive (he’s been verbally aggressive for a while). I am not sure how much longer she can continue to care for him, and frankly, I am concerned for her safety. As he will almost certainly get worse, I don’t know what he could do… as he doesn’t know who she is a lot of the time and thinks she’s stolen stuff or is an intruder.

My parents aren’t rich, but they may just barely be able to scrape enough to afford a care home of some kind (this is in Ontario, Canada). My dad doesn’t know he has dementia (it hasn’t been officially diagnosed as he would never cooperate to get any tests done), would never admit to it, and thinks he’s fine. He will also never ever willingly go live in a care home of any kind (especially since he thinks he’s fine). He is a full-blown narcissist and has been his whole life… but his current mental situation obviously has made him the worst possible version of himself.

Are there ways, if need be, to have someone force my dad into another living situation? We can’t have any care/medical people come to my parents' home, as he won’t let any strangers in the house. I honestly have no idea how this would work, and my mom has limited time/abilities at the moment to research this herself.

Thank you so much!

My dad has stage four dementia. I’ve spent the last three days trying to calm him down from obsessive episodes where he is harassing my mom (they have been divorced for 25 years) about the conditions of their divorce. He calls her and hangs up, calls her at 5am, etc. He is obsessed with the idea that she was cheating on him with “three different men” 25 years ago. He texts incessantly about it but in a group chat with the both of us trying to get her to fess up. Then he doesn’t realize he typed something and starts responding to himself. Anyway, I digress. Things are already somewhat miserable and he is, I would say, miserable as he realizes but is in denial of his decline.

He has vascular dementia. He is currently take blood thinners to help prevent additional strokes. They are working but his dementia continues to progress. I can’t help but think that taking medicines to prevent strokes will allow him to progress into far later stages of dementia than not medicating him would and perhaps not medicating him might cause him to die an earlier death with more dignity.

I’ve had a really rough few days so please excuse me if these thoughts seem inhumane or insensitive.

I can’t remember my dads dying and the end of his life for the preceding months , he died 3 years ago, I have no recall , that and many other things that I can’t recall , he died with dementia , so I probably have it ?

Hello, my friends wife has early onset Alzheimer’s and he hasn’t been intimate with her for over a year. He’s at a loss bc he misses intimacy. At what point is it acceptable to date outside of the marriage? He cares for her, so do her older children. He’s going to take care of her at home until he can no longer do so due to working nights 3 nights a week then landscaping during the day. This may be way outside of this subs conversations, but I was curious as to your thoughts. If this is not allowed, please let me know. Thank you all for your time.

For example, redirection of anger, stepping into 'their world', keeping tabs on consistency of stories, etc. Have you learned anything useful and applied it to your coworkers or relationships?

My partner’s father (83) has had Alzheimer’s for many years and he is extremely sound-sensitive. When he hears someone walking around upstairs or a dish clinks or a toilet flushes, he reacts by lashing out angrily. This has made life almost unbearable for my partner. He has purchased noise-canceling headphones as well as other noise-canceling devices but his father won’t wear them. Does anyone have any suggestions? My partner has given up everything (his home, his career) to care for his father and he is getting depressed because he has to literally tiptoe around the house every single day. TIA.

Good morning everyone!

We are conducting a brief survey about some of the early signs and symptoms of senile dementia due to Alzheimer's and other memory-related diseases to evaluate the viability of a digital solution that would aid with the quality of life of patients and caregivers.

We would greatly appreciate it if you could respond to this short survey consisting of 9 questions.

Thank you in advance for your time.

The survey can be completed by patients, health professionals, caregivers or family members.

​

https://docs.google.com/forms/d/e/1FAIpQLSdMCTKITwHcu8t3_hcA-o4P-3EO-utkw3JNdH2Cl78z5lCacQ/viewform

How important is an appointment with a neuropsychologist? We were referred by my mom’s psychiatrist but I have been trying to schedule this appointment for 8 weeks at this point and they’re making it so difficult. Also, this appointment is supposed to be 8 hours long which I know my mom won’t be able to handle. I want to know if anyone else had this type of appointment and if it was helpful in anyway ? Tyia

Hi, I’m wondering if anyone knows of any Distros or software or other operating systems that are simple and easy to use to watch Netflix, Disney and YouTube,

My grandad has been using and building pcs since the beginning of pcs themselves, he thought me everything I know but unfortunately as the Alzheimer’s takes over he is losing the ability to understand and use his windows pc and is very frustrated about it so now I want to help him,

his computer and being able to use his computer means everything to him and I’ve been trying to find something that can make it easier and make the apps more clear and remove all the unnecessary junk and files he doesn’t need anymore and just stream line it and make it less confusing.

If you know of anything, please let me know Thanks

Hi r/dementia peeps,

What can I say 💔

We had to move my grandmother into a long term care residence. We didn’t have a choice because the memory care unit couldn’t keep up with the care my grandmother needed. It would have been negligent to keep her where she was.

We are still waiting for a bed for my grandfather in long term care. He has the #1 spot at the moment but will get trumped if someone from a hospital needs a bed.

It has been a very difficult time for him understandably. He cannot be reasoned with because his dementia is too advanced. All he sees is that we took my grandmother away from him, that we are cruel, that he wants to die and stop taking his medication and stop eating.

Staff at the home say he is depressed but has been eating a bit and has been taking all his medications.

He is fixated on dying. He says he was only living for my grandmother but now we are cruel and we separated them so he doesn’t want to live anymore. He closes his eyes tightly when he speaks to me. He says he hates me now.

I know this is all the dementia talking but it’s hard to hear.

Today when I was visiting him I found a metal hanger that was all stretched out. He had hidden it in his shower on the floor behind the curtain. Was he thinking of hurting himself or staff? Was he just tinkering with it? I have no clue.

He had no idea what it was when I took it out of the bathroom. I didn’t question more because everything I did was upsetting him.

Staff have been notified of all this and his family doctor.

I guess I’m wondering what can I do now? I am familiar with what to do with people who are suicidal but with dementia I have no idea what’s real ?

Thank you 🙏

Hey all, can anyone recommend a good system to monitor mom at home? Thinking bedroom, hallway and living room area. Ideally something with end-to-end communication.

Thanks in advance!

New here. My mom is 65 and has been an alcoholic all her life to the point where it's causing her health issues now.

She's always been forgetful (forgot watching an entire movie with my brother and me just a week after about 20 years ago), but this feels a little different. Her husband recently had some cancer removed, and an MRI detected a nodule, and he didn't want to tell my sister until after he had more information (which she hates). My mom told her when she saw her about 2 weeks ago, and last week had completely forgotten the conversation, insisting that I keep it secret. It seems weird that she forgot something that made her so anxious she couldn't talk about it without crying. It's obvious when she's so drunk she will black out, and she hasn't done that in a very long time (around us, at least).

I didn't think too much of forgetting the conversation, until last night when we went out to dinner and was worried she might not have ordered mashed potatoes. We had only been seated about 10 minutes and had just gotten drinks. We hadn't ordered yet. That seems unlike her.

She and her husband hide things from my siblings and me, and I'm the only one of us who lives in the same area, so it's hard to assess much else right now.

What are some other examples of confusion and forgetfulness I could look for?

I’m still in research mode trying to find the best solution for my mom, needing 24/7 care now most likely in a MC facility.

Has anyone delt with trying to utilize Medicaid and a MC facility? Most MCs I’m finding are private pay…so trying to understand all the options.

My 87yo (next Sunday) MIL has AFib and Congestive Heart Failure, as well as severe dementia. Based on my research and her symptoms, she's in stage 7 of 7. She had a dementia/memory test done last week, and we are awaiting results.

My SIL and I are her full-time caretakers. I work from home so I was able to temporarily move to her state (my home state) until October when my SIL retires from her job.

Last night was the worst night we've had. She was super paranoid, confused, and combative. She thinks there are two of both me and my SIL. She says my SIL (her daughter) has a drinking problem and is "whoring around." She was saying I was a man last night and wouldn't let me get her ready for bed. Both my SIL and I ended up yelling at her. It was awful!

I'm trying to understand what happens next. Can you die from actual dementia? Her nurse told us that she is now in constant AFib (heart beats irregularly). I have accepted the fact that she might just have a heart attack in front of me. Aside from falls (we don't let her go anywhere in the house without someone right with her) and her obvious heart issues, can dementia result in her dying?

My father was diagnosed with vascular dementia 3 years ago. He is 73 years old now.
Recently the doctors also think he unfortunately has parkinsonism, because he very often freezes in place. It has now happened numerous times, where he would be walking with his walking aid (walker), and suddenly freeze. It looks like his knees are locked and his back arches drastically, not being able to continue the movement (walking most of the time) he was doing. It look very unnatural. Someone needs to come help him every time this happens. He is in an elderly home luckily.

HIs fysiotherapist sees a drastic decline in mobility in the last few months. Has anyone experienced this before? We are now considering a wheelchair for him. I'm wondering what the decline of this illness looks like in terms of the freezing and mobility issues.

Do all forms of dementia cause people to make up lies? My dad has Alcoholic Dementia. He's 71. He also has terminal lung cancer and is on hospice. He has made up in his head that I had this great childhood. Friends...popular in school.. a nice place to live. We moved every 6 months, and I went to 10 different schools in 3 states before I graduated high school. He thinks that he and mom never fought. That's all they ever did. I just wonder why he thinks it was good. Maybe because he was never really there and he didn't see me stay home from school to take care of mom when she took to her bed because they were arguing again. And I was 12, cooking full meals at lunchtime because he was coming home for lunch and had to be fed. I don't know. Maybe it isn't important why. But it's insane as hell. Do I just go with it, and laugh? Do I ignore it? I can't tell the truth, because he doesn't believe me. I hate this. Dementia is crap.

Hi all, I am a student working on a current engineering project. We recently posted about facial recognition glasses and got a lot of useful feedback. We got a great response about jewellery/necklace idea that has fall detection and GPS tracking for family/careers, we have since shifted our project towards this. We were just wondering how useful this device would be in your opinion, and how often you have to deal with falls or tracking?

Kind Regards and we appreciate any feedback :)

May be a bit of a rant, but my mom with dementia had a fall the other day and has a fractured pelvis. She is in hospital now and will likely be there for a long time. We’re really struggling with her understanding where she is and what’s happened to her. We’re having to repeat every half hour what’s happened to her. At the best of times she seems to take it well, but last night she was getting combative and angry trying to insist she well and trying to leave. We’re terrified to leave her alone in the hospital for fear she will become confused and the nurses are spread thin. Add to that a language barrier- English is not her first language and the nurses barely take the time to help her understand. We’re at wits end. Are there services where a nurse or professional care giver can sit overnight or with a patient in the room to provide comfort/clarity? Not really sure what we’re looking for here bur it’s heart breaking to have this happen to her. She’s in a lot of pain, and doesn’t understand what’s happening. Thanks.

A social worker from our local County Council is visiting in 2 hours to complete a care assessment for my dad (advanced LBD). The outcome will mean allow them to come to THEIR conclusions about how many hours care he needs, daily. I’m so anxious that they’ll somehow say he needs less time/fewer visits daily and that we’ll somehow have try and fill in the gaps for his care, ourselves. He is bedbound and cannot walk/move himself in the bed. I don’t know if there’s an upper limit for how many hours care that a local authority will fund daily, but I hope he’s at it. Any U.K. folk got any tips, let me know.

My MIL is obsessed with birthdays, and every time we see her she asks us when our birthdays are and what we can do to celebrate. Her son's birthday was last week, so today we picked her up and brought her out to our favorite sushi place with us to celebrate. She was in a great mood and just happy to be out with us in the hussle and bussle of the city. It was a pretty day and all the cherry blossoms are out and she was admiring everything in wonder. They are often so confused and scared, it is so nice when they have these rare moments where everything is new and amazing. It was kind of like being out with a mildly drunk or stoned person. My favorite thing she said today was, "Well, it's not made of gold or anything. But, it was crafted with consice persicion!" I have no idea what she was talking about, but it sounds delightful.

Then at the restaraunt, I was trying to get her to sit down when she was standing in the doorway. The door blew shut and bonked her on the butt. She was fine, it just suprised her, and then she scolded me for giggling. But, then she sat down next to me and we giggled together until our table was ready. Then when the food came, she didn't want to eat any of hers, but ate some bites of ours. That's fine, it is so hard to get her to eat these days. She is convinced everything tastes sweet and hates sugar in foods that are not dessert. We could not convince her the soy sauce was not a sweet sauce. She complains that everything is too sweet and then says, "Where's the iced cream?", lol. So, then we went to the ice cream place next door and had sundays.

Anyways, it is nice when you catch them in a good mood and an outing doesn't go sideways or overstimulate them. My partner got to eat iced cream in the sunshine with his Momma, and she wasn't complaining about people stealing her stuff, and the nurse who gives her a shower, or arguing about bills. By the time we got back to memory care, she had forgotten where we went and asked if we were going to this other restaraunt and when our birthdays were. That's fine, we got her to enjoy being out with us in the moment. We will remember for her.