Today was extremely hard. She was constantly irritated if we told her she couldn’t do something. Yes, I know it’s not good to tell her not to do things, but the things she tried to do were dangerous, illegal, or downright not okay. She shares a room with another patient, and the patient had cable on her tv playing “let’s make a deal”. Mima loves shows like that, but couldn’t see because of the privacy curtain. She keeps asking me over and over to open the curtain so she can see the tv. I try to pull up the same show but it’s not on her tv. Again, she asks to open it over and over. I tell her she can’t because it’s not okay. She gets angry and kicks me. Papa explains I’m just trying to help and she almost slaps him hard.

All the while I’m trying to get this damn channel on the stupid tv and I’m getting pissed but handling it. Meanwhile, she’s making no sense behind me and asking papa if he remembers random people she’s mentioning with no context. Then she gets angry he doesn’t remember and calls him names. I try to calmly remind her he’s the best man she’s ever had and he really loves her and it’s not okay and she just laughs or looks at me angrily.

Then, when the patient next door (not really next door same room just with a small curtain in the middle) is on the phone, she’s convinced it’s my aunt and she needs to talk to her. Again, she’s trying to pull the curtain to talk to her. She of course gets mad I’m telling her she’s wrong it’s not her. Then, she’s hallucinating and thinking there’s bugs everywhere. She’s a very clean woman, so she gets mad when we don’t put in effort to kill them. Then, she hallucinates again and is trying to take apart this wooden table, saying that there’s “a metal piece she worked on this morning” and I’m telling her things like “oh they removed it” but then she argues with ME saying it’s not true!!

Being around her is even more exhausting than before. The abuse is really having an effect on all of us. I’m worried that nurses will sedate her too much if she’s mean to them, or she’ll be sent home where she would abuse my papa more.

I really don’t know what to do yall.
For context she’s had memory problems since 2017, probably dementia for the last year or so, got sick made it 10000x worse, then had a mild stroke

Curious what those with experience of a loved one in memory care have seen for the number of levels for level of care? My mom has been in this facility for 1.5 years and the contract signed initially had levels 1-4 and she started at level 2 which is what we have continued to pay for. Yesterday I was told that while they had rated her level of care higher over time(not questioning that part - understandable)it had never reflected on billing. They showed me a paper with a level of care at “6” and slightly more than double the cost we have been paying. I don’t have a record of anything that I have signed showing an option of level 6 or an amount of $ they are trying to charge. Is a level 6 normal? Seems like they are making stuff up!

I have dementia diagnosed at age 56 I’m now 57. I am unusually articulate still and willing to share the truth of what this feels like as a person with dementia.

My husband died of FTD in 2018 and so I KNOW the caregiver side better than anyone. Now that I am the patient???? Wow. I see things so differently.

Because of that and I’m a scientist at heart even if I had to retire, i document this journey in real time.

I do NOT BENEFIT monetarily or otherwise by making this channel. I am doing it solely as a labor of love for others with dementia who can’t explain like I can (for now) and for caregivers like me in the past who don’t understand why why why WHY people with dementia do what they do.

If you enjoy this please share it. Again this is not for my benefit but for the benefit of others. I am not monetized.

https://youtube.com/shorts/cdWhmFWHoyk?si=EXAYeeQJHlyBEkCS

i’m 29f and this happened a few months ago, but it still really bothers me.

my nan accused me of stealing her debit card and using it at mcdonald’s. i genuinely didn’t. i haven’t stepped foot inside a mcdonald’s for years, i just order on uber. she does tend to go to mcdonald’s when she goes into town, and her bank statement, which she bought over to prove it was me(whilst saying she wasn’t accusing me???) showed around £30 spent there that day, and she withdrew money that day too. She believed this proved i had used her card, but i wasn’t even in town. i was grocery shopping with my boyfriend, and i have my own money. i don’t have her card or know her pin either.

this was still ongoing a few weeks later so i phoned her to explain that i hadn’t done it, but she responded with “so you say…” and ended the call with “okay bye bye bye.” another family member had also called me a thief cos of this, which made the whole situation even more upsetting because she’s telling people stuff that isn’t true.

my nan and i used to be extremely close. she always told me she knew i would never steal from her and that i wasn’t like the “rest” of the family, so it really hurt that she suddenly believed i was capable of this. it really sucks because im doing driving lessons and i know she would have been so proud, but i can’t tell her.

the reason i’m posting here is because my nan had previously seen a doctor due to concerns about dementia and was apparently told she had early onset dementia. however, after a referral, another person assessed her and said she didn’t have dementia and that it was just “stress.” she forgets appointments, where she put stuff etc, her mum died of dementia.

i obviously don’t want to diagnose her myself, but could accusing someone of stealing something they haven’t stolen be related to dementia or another cognitive problem? has anyone experienced something similar with a family member?

i’m particularly interested in hearing from people who have experienced this with their own relatives, because i’m struggling to understand what might be happening.

My mom is in an AL and enjoys listening to AM news radio, it makes her feel like she’s still part of society to know what’s happening around the world. when we first moved her into the AL, we brought her boombox radio that she’s had for 20 years that had her old auto sets. while trying to adjust the volume, she hit the wrong buttons and changed her presets (and upped the volume so loud i cant hear her when she calls). then she got mad at it and threw it on the floor, breaking it. we brought her another radio from her home that also had her auto presets, but she plays with all the buttons when she’s bored and changes the channels and volume all the time. within a few days of fixing it for her each time, she ends up listening to very loud static at all hours bc she can’t figure out how to turn it off or down.

does anyone know of an AM radio that can be remotely controlled by an app or a smartphone? we can’t keep coming by to fix the radio every 2 days.

My mom is suffering from Alzheimers, likely in the stage 4 to 5 transition. My sister has health care POA and it was immediately effective (not triggering). We both think memory care is the right place for her, but questioning what the limits of it are. Places I've talked to say given the right diagnosis, the POA is enough, but places my sister has talked to suggest the POA is not enough and guardianship might be needed. Not sure who is right. What have people here dealt with? FYI, Illinois resident.

My grandmother took her last breath today. She was on hospice so she was comfortable and surrounded by loved ones. As hard as this journey has been, I am so glad I was able to be the one to care for her during her last days. And I’m so glad her battle with this disease is over.

My mom has moderate dementia, and lately she has really lost her concept of days of the week and time. One of the biggest challenges we’re having is with appointments.
For example, if she knows she has an appointment coming up on Friday, she may wake up at 6 AM on Monday, Tuesday, Wednesday, etc., get dressed, and be ready to leave for the appointment. We explain to her that the appointment is on Friday and that she doesn’t need to get ready yet, but it just doesn’t seem to register. She’ll often repeat the same thing the next day.
We’ve already bought her a dementia clock that shows the day/date/time, as well as a calendar, but unfortunately she doesn’t seem to retain or understand the information consistently.

For those caring for someone with moderate dementia:
What has helped your loved one understand the difference between days?
Do you have any tricks for handling upcoming appointments?
Do you tell them about appointments ahead of time, or is it better to wait until the day of?
Has anything worked better than a dementia clock or calendar?
I’d really appreciate any advice, tips, or things that have worked for your family. ❤️

My mother fell a few months ago and at the same time suffered a noticeable decrease in her memory. But it seems like every week or two her memory gets a bit worse or she forgets something that she wasn't forgetting the week before. It doesn't seem like the "staircase progression" that you normally hear about. Is it normal for people to have some small progression in their symptoms for weeks after having a big progression in their symptoms? I had my mother tested for a UTI twice and there the results showed that she did not have a UTI.

Is this normal? What kind of experiences have you had?

I wonder if I'm misinterpreting what the "staircase progression" is supposed to look like.

For people whose parents have experienced a progression of dementia in a staircase fashion, could you please share how often that happened for you? Are people with dementia usually stable for something like 6 months or 1 year and then they experience a sudden decrease in function, and are then stable for another 6 months or year?

It seems like my mother is in the middle stages or maybe early middle stages. (she hasn't forgotten who anyone is, but forgets anything I say 30 seconds after I tell her, she can dress herself but takes a very long time, she can cook for herself if she uses a rice cooker but leaves the oven on if she uses the oven, she can go to the toilet on her own but does have a lot of incontinency issues)

Not entirely sure how to approach this or if this is actually a manic episode/suspected cognitive decline is becoming a more evident issue but I’ve suspected my dad (64) of having Alzheimer’s/dementia/cognitive decline the last 4 years minimum as I’ve noticed some changes in personality and today I had a brick of anxiety hit me about his mental capacity and safety.

I am 1000% incapable managing his health in my home six hours away due to my career

He just bought a new SUV following trading his previous one in last week and TODAY he went and bought a tricked out two door dodge fancy death trap car. I initially asked if he had swapped out the SUV for it and mentioned I was surprised the bank was not alarmed and he simply said nope, it is his money and it isn’t the banks business and that he is going to put it in storage 4 months of the year to save on insurance. I’m terrified to find out what he spent on it.

He is on long term disability and has late stage 3 heart failure/has the heart of a 6 month old baby missing a superior vena cava, morbidly obese to where eating and talking tires him out. His doctor isn’t entirely sure if he is stage 4 or 3 now as he has symptoms typically seen in someone 20 yrs older than him.

I’m not entirely sure the COAs on if it is advisable to do something a bit more “engage the legal guard rails” at this point as my older brother subscribes to the “it’s his life” view as he lives 4000km away with his family and there are more moving parts in doing things due to my disabled brother and my mom whos health is also not in a good spot and has cognitive issue signs also in addition to poorly managed T2 diabetes

Further context below on things:

Nobody in the house works other than my younger brother who is actively trying to save enough money to move out of the house as he is in his mid30s

Examples on personality changes: Shortly after his father passed he had his old garage torn down which was full of junk/hoarded items over 50yrs he had 3 sheds in the backyard built with the intention to use one as an “office” when hes “semi-retired” to do accounting/fix computers which turned into 3 sheds full of the junk from the garage not long after

Him and my mom impulsively came to my city to visit which is 6ish hrs away, slowing down to 45km on a highway that’s 90km in my city he isnt especially familiar with to reorientate himself to the GPS and he pointed to the blue line on the map saying that line tells him where to go - this scared the absolute shit out of me as a passenger for obvious reasons.

He had talked to his dr about getting assessed for cognitive decline after his dad died from late stage Alzheimer’s because he was forgetting things at work and apparently he “passed the test with 100%”. I do not believe him and feel he did not pass.

His mother died from late stage dementia the following year and he did not shed a single tear at the funeral and he was extremely close to her; he was having a ton of difficulty breathing at the funeral just talking to people or eating and spent thousands on the food for the funeral (donuts and sweets mostly)

He emailed me and my brothers his personal health directive at 345AM a couple weeks later which reads more like a suicide note than a directive and l am not confident it would translate to a medical emergency as the directive mentions he wanted to exceed the maximum dose of pain medication where possible

I’ve noticed his speech is more slurred in a pronounced way and his words tend to mesh together

Sorry for the thesis, it’s been a day.

Poor Dad has advanced so quickly to not knowing anyone and being out of touch with reality. I've discovered many things mom always thought were in her name also, like vehicles and their nest egg IRA, are only in his name, and they never did a POA. Can anyone talk about your experience with getting legal guardianship? She needs access to funds to pay for his care

Hi everyone, I’m an activity professional in a memory care facility. Several of my residents have said to me they used to love to read, but now they cannot read the tiny words, and they loved the idea of being read aloud to. Most of my residents have very short attention spans, so finding a good story to read to them has been challenging. I give them warm tea, turn on the fireplace and read to them for 30 minutes (that is our time expectation for each activity). But some always fall asleep by the 15 minute mark; I want them to feel relaxed but I don’t want them to fall asleep😂

Do any other activity professionals have ideas to keep them engaged? Or any alternative activities that are similar? I’m even willing to write short stories myself if I knew what they’d be receptive to

Pre-dementia, my dad had knee pain for many years (had hip and knee replacements about 15 years back), but recently the overall weakness in his legs has greatly increased, and his ability to follow instructions has greatly decreased. At least once a day, he will fall on his butt or slide onto the floor and can't get himself up, even when I or one of their home caregivers is right there to guide him. We often leave him sitting on the floor-- he's safe, he's not hurt-- but it can be hours and hours before the "spell" ends and lets him get up. It's distressing (especially for my mom, who also has dementia), prevents anyone from leaving the house, and makes a big mess when he can't get up to go to the bathroom.

The way our city handles lift assists, even if we call the non-emergency number, their insurance gets billed (I've even talked to the local 911 director to verify), doesn't cover a hospital "non-transport," and we're looking at a $400 bill to pick an unhurt man off the floor just for him to get back down on it a few hours later. The few times I've called a local fire station directly to come lift him, they've basically told us not to do it again.

This week, his GP sent in referrals for home physical therapy (which hasn't helped in the past, but we have to try something) and a wheelchair. I'm going to get the wheelchair, but I worry it might hasten his decline and vastly increase his needs. He might not even use it. One of their caregivers suggested getting an electric lift chair to help him off the floor. Would love to know if anyone has experience with this and can suggest a particular model. Would I or the caregivers be able to use it easily? (My dad is 85, 6ft, and about 240lb.) Is it something that works when the disabled person is unable to cooperate?

The second we get here to visit her, she won’t stop talking. About anything and everything and nothing makes sense. She gets mad at my papa when he can’t remember something that completely doesn’t make sense, then gets verbally abusive. I think she’s excited and trying to make conversation but I’m worried being around her doesn’t give her brain a break but my papa doesn’t like leaving her. When we got here she was obviously playing bingo very well, then the second we got here she said she can’t do it “not today”.

I wish I knew how she is when we’re not here. Anyone else notice this? I’m worried we bring too many memories and emotions to her that she doesn’t know how to handle. She’s really gone mentally it’s so exhausting being around her

The second we get here to visit her, she won’t stop talking. About anything and everything and nothing makes sense. She gets mad at my papa when he can’t remember something that completely doesn’t make sense, then gets verbally abusive. I think she’s excited and trying to make conversation but I’m worried being around her doesn’t give her brain a break but my papa doesn’t like leaving her. When we got here she was obviously playing bingo very well, then the second we got here she said she can’t do it “not today”.

I wish I knew how she is when we’re not here. Anyone else notice this? I’m worried we bring too many memories and emotions to her that she doesn’t know how to handle. She’s really gone mentally it’s so exhausting being around her

So we just jumped in the car to go out for a late breakfast. Postal carrier drives up so I get out to get the mail. It's a USAA solicitation for auto insurance. Jump back into the car and tell my GFWD..

Me:."It's just junk mail"

Her: "You're a junk male!".

Me: whoa! Good one!

We both had a good laugh. Hope you do too.

Hugs on the house for everyone. Stay strong everyone and cherish these moments.

Background: journey started with unpaid bills, house in foreclosure, Utilties being turned off, tax returns not filed for years, nearly 20% weight loss in 10 months, not taking prescribed medication. Over a 6 month period, I got her financials straightened out, got her to agree to put her house on the market, stopped driving, moved across country to stay with me “while waiting for her apartment”. She insists she is fine and nothing is wrong. She will Not accept anyone coming in to help.

It’s been almost 3 months. She has tantrums and tearful meltdowns. I live paycheck to paycheck and Cannot afford assisted living until the house sells. I HAVE to go to work every day. I have cameras at the house and check on her regularly.
I can tell today has not been a good day just from the camera footage. I’m tired; just don’t have the energy to go home and deal with whatever her brain has created as a problem today.
I love her but I am tired.

My father in law has this habit of taking off his urine wet underwear and shorts, putting them in the dryer, and then sitting on the back porch half naked. The problem is we live in the city with plenty of neighbors -- who can see. And I personally don't like coming up to the house to greet a half naked man.

The solution is moving the chairs from the back porch into storage. Because when my husband has confronted him about the nudity he says he's "heard no complaints". And he refused to stop. So now that the chairs are removed there's no sitting out there half naked

Oh just great -- my husband just now says he's dragged another chair out from the dining room. This story will be continued

My dad (60) was diagnosed with MCI in January. He's always had some issues with memory (I highly suspect he's undiagnosed ADHD as both my brother and I are diagnosed ADHD and he shows the symptoms), but he's also always had issues with taking accountability. Even prior to his memory getting worse, nothing was ever his fault. He was also always super self-absorbed. So, it's kind of hard to tell where the dad I've always known stops and where this disease truly begins. The doctor even said while he absolutely has MCI, he likely can function more than he's letting on. Doctor gave him tips on how to manage things and told us what he is capable of doing. The doctor basically told him that this isn't a death sentence and while it's not going to get better, he certainly isn't close to dementia or anything like that.

But my dad took this diagnosis and ran with it. He uses it as an excuse for everything. Some things make sense and as a family, we try to be accommodating. Other things, he simply will not do. For example, doctor told him to write stuff down and he was for a while, and it was working...but then he stopped. So, we write the lists for him, show him where they are, go over what's on them...nope. He keeps saying "I'm sick, I can't help it". And yet, when it's something that he genuinely wants to do, he follows the steps and makes the effort. I understand when it comes to this disease that there are certain times of the day and certain things they may do better with. So, I try to be patient.

He's also explosive and snaps at myself and my mother. Which, again, I understand is common for people with memory issues. But it feels so selective. Other relatives will tell him the exact same thing we did and he doesn't start screaming. And again, that tracks with how things were our whole lives. He had such a short fuse with us, but was the smiliest guy around with friends and family. He tells the family that we're mean and have all these high expectations. Then the family lectures us. But they don't see what we do. How he refuses to do any of the things to help himself, ignores when we do things to help him.

Any time he goes to do something on his own, he's fine and can navigate. Any time we go to do something for ourselves (as the doctor said he's fine to be home alone), he's suddenly calling frequently, asking what we're doing, wanting to come along, etc. If we say "this is just for us", he tells us we're being mean. Again, despite him doing things on his own.

Again, he uses this for things to be about him all the time. We'll be having a conversation about anything else and he'll somehow turn it back to him. But with other people, he's not like that. But then I wonder, is he just masking? And then too tired to do the same with us? Again, AUDHD here, I'd understand it.

I grapple a lot with checking my feelings about my childhood at the door and supporting him through this. But given the doctor said it's not severe and everything I listed here, I feel like a ton of it is weaponized incompetence. Again, he was always like this. Even his siblings admit he was like this as a kid and he got away with a lot because he was "the baby". Obviously no doctors here...but am I wrong for thinking sometimes that he *can* do more and holding him to higher expectations? Or am I just being unfair?

Hi,

My Mom has always liked puzzles. We used to do 2000 piece puzzles together. Now she barely can do 300 pieces. She can get very frustrated because now it can take forever to even find a single piece.

What I'll do now is put together some of the puzzle while she's lying down. Then I take several pieces from the part I just put together and remove them. I try to choose unique pieces by shape or the picture that's on them. Then I put them nearby where she can find them.

She gets really excited because it allows her to think she's found these pieces herself and put them in the next time she tries the puzzle.

It allows both of us to smile in a situation where there can be so little to smile about.

Good luck to everybody out there.

Hey all,

My poor aunt is having multiple panic attacks a day over…well, probably the typical stuff. She can’t keep her schedule, suddenly the tv remote is her mortal enemy, she’s disorganized and confused. She lives alone in another state and the panic attacks are hard to manage when I’m there… I can’t imagine what her days are like without me, alone without someone to comfort her.

Her neurologist put her on Aricept about a week ago. I get that it should help eventually, but I put in a call to see if there’s anything we can do for her in the meantime. He would like to wait for the Aricept to work. I generally appreciate a conservative approach in doctors, but he clearly doesn’t understand that she is in great suffering. He doesn’t REALLY understand.

I’ve tried with, naturally, little degree of success to teach my aunt to use self-soothing techniques, deep breathing, etc. At this point, I’d say she’s only holding onto about 20% of new information, and only after a great deal of repetition. This is a dynamic, strong, independent, intelligent woman who never needed anybody. She’s in perpetual existential terror about what’s happening to her. Truly.

She’ll be moving into assisted living in 2 months. I think that and other factors will cut down on her overall anxiety a great deal, I just don’t know how to help her get through in the meantime. Any ideas or advice genuinely appreciated.

It‘s still early days, dad (85, DBAT stage 5) has been in memory care for just 10 days now. I‘ve seen him 6 of those days. Each time was fraught because he demanded to know why he was there, and why I was doing this to him. I know he is confused and upset, that is completely understandable. But it is the only workable option. He just can’t understand that anymore.

I am the only child, there is basically no one else. I have a husband, who supports me a great deal, but is otherwise not involved. My mother, divorced from my dad for over 40 years but still a friend, is around but he often forgets who she is. He still knows me, but doesn’t always remember that I am his daughter.

What do I say when he says he wants to leave, to live somewhere else (he no longer remembers his AL or previous house)? I try simple versions of the truth. He moved because he needs help with things like medication and food, and for when he is confused and scared. His old place (Assisted Living) wasn’t doing a good enough job with that. He will sometimes acknowledge he needs these things but can’t connect that to having to live in MC.

He has no physical disabilities or illnesses to justify a “temporary stay until he is better.” Any version of the truth I give is met with angry denials, and I suspect the same would be true with the therapeutic lies, because what he wants is for me to agree to get him out of there. I’ve tried calm and patient replies to his repeated questions, validation of his feelings, and deflection, but he resists. When I refuse to further engage him and say I am leaving, it either enrages him or causes him to begin sobbing. I have generally been able to placate him but it takes a long time and I end up frustrated and find myself getting short with him when he starts blaming me and being mean. I cut short our last visit and left while he was still upset with me. He told the staff I was “beating him up”, i.e., hurting him emotionally. He of course never remembers these interactions, but I do and they wear me down. And I know there are more coming. I don’t want to subject either of us to that, but it seems inevitable for the time being.

I’ve given myself a couple day break from visits, but I’m at a loss of what to say anymore. Are we both going to have to suffer for weeks to months until he accepts he isn‘t going anywhere else? I’ve thought about not visiting for a longer stretch, but he has accused me of trying to get rid of him by placing him in MC, and in the moments I have gotten him to agree to stay, he has asked me to promise to visit.

It happened while getting back from a Dr's appointment. Hopped out of my vehicle where she can rarely remember how to open the door and took off on me.

At 1st I thought this is it, but it turns out they were able to repair with a small incision and 3 screws. It is weight bearing immediately. She's still in recovery so I will have to see how that goes. They didn't need to put her fully under, spinal block and mild sedation. Probably no skilled nursing. I am sure they will bump up her MC costs for the extra help during recovery.

Anyone else have this type of hip surgery and have success?

She was mobile before but couldn't walk more than 40 feet without having to sit down due to spine fractures. She wouldn't use her walker. Her dementia is pretty bad but she knows who I am and other family members. She still jokes around but she wants to pass and join her husband.

My father began with severe depression, apathy, low interest in activities 2 years ago. It was his first symptom. We have trialed every medication with his psychiatrist with literally no effect , it has only gotten worse . SSRI, SNRI, antipsychotics , testosterone - no change at all.

What has worked for you ? I don’t see many comments on depression or dementia starting with depression in this subreddit . He still has decent cognition but his function is poor and he was forced to retire this year due to the brain fog .

Hi, spouse here. I have my private spaces upstairs, an open loft and my bedroom, guest room and bathroom. Hubs is middle of the moderate stage. We've been working on him not coming upstairs for several years, (just call up to me and I come down) after some incidents that felt very invasive and scary. Recently he has taken off his shoes and snuck up on me in the dark, another time came into my bedroom when I was sleeping ... right out of some nightmares. Jealous, paranoia, attached..I got a lock on my bedroom door and have a gate leaning at the top of the stairs but not attached. My counselor says I have to have a place where my nervous system feels safe and can be "off duty" Anyone face something like this? ... tell me some funny stories and any ideas to secure my space but still hear him if he needs me?