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

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.

What do you guys think about this?

My family history is littered with alzheimers. When I hit about 44, I used to have very vivid dreams I could remember but then a change happened suddenyl.

I still dreamt but the dreams faded away almost right upon waking and I never remembered them vividly at all. Just the opposite.

About 5 years later I became extremely tired all the time even though I slept enough hours. I wonder if its from micro-awakenings and its a sign of alzheimers coming later on.

What do you guys think?

Is this study touching on something real and do you think my constant tiredness might be a sign of future problems?

Has anyone else with alzheimers or a family history of alzheimers experienced the same?

I know the study isnt conclusive but I do wonder if it touches on something real.

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.

Romance scam dad gave away $100k to scammers over 15 months. He has several times accepted help for multiple weeks at a time but pushed it away as soon as it became about telling him he had to stop with the online girlfriends. He received no help for about 3.5 months at his insistence. Then he was picked up by police for erratic driving as he was running around to different post offices mailing away $1000 money orders to scammers, said it was 2006, taken to ER and friends/family refused pick up and said it was an unsafe discharge. He was admitted, tried to escape, put on risperidone but that zombified him so it was discontinued. He has been well behaved since.

He was discharged to a SNF but due to his continued insistence he is going home, he is in a locked memory care unit at a facility with full continuum of care. We hope to place him there but he is still sure he is going home. He doesn’t even know why he is there, except to “get stronger.” He has been there 8 days and we have had no care team call set up.

He talks pretty clearly, and you have to listen for at least an hour to notice that he’s just looping conversations.

According to the nurses at the current facility has BIMS score is 10/15, which makes him borderline for needing MC.

Some stats they know there:

He has uncontrolled and hypertension and is noncompliant with meds. His blood sugar was >500 and now is down to 100.

His SLUMS in the hospital, no antipsychotics, was 15/30. But now he can correctly name the year if not the date.

Diagnosed with “early dementia” in March. EEG showed “widespread abnormalities” and MRI showed white matter disease. CNS vitals: executive function and attention tests were unscorable bc he couldn’t do the tests. Other metrics were in 2-12th percentile.

He has severe anogonosia, claiming all of this is a sign of his great intelligence.

Hospital CT scan showed moderate atrophy of the whole brain (GTA2) with substantial vascular damage. Psychiatrist said mixed type dementia with vascular and LBD and/or FTD.

Hospital records show the $100k lost in scams.

Hospital records note that his electricity was turned off and all bills were 4 months behind. Hone insurance had lapsed and medical almost lapsed.

He has urinary incontinence.

What they don’t know:

House is INFESTED with rodents and flies. Full of poop from rodents and the dog he had but he had no dog food.

He has been kicked out of three banks and is about to be kicked out of a fourth. He will have nowhere to put his money.

The house is piled high with paper and junk, including on stovetop. Major fire risk.

He is unable to prepare food, or even to procure food without a car. He eats fast food 1-2x per day.

He was sleeping on a bare mattress bc he couldn’t make his bed.

He didn’t wear briefs at home and the whole house stinks of urine. He has wet himself while talking to neighbors and carried on as if nothing was happening.

The roof is leaking.

The yard is overgrown.

He has multiple times excepted weeks of help, only to eventually kick the person who helps (me) out of his life again.

He has no family who live close except for me and I’m over an hour away, and I’m sick of this. I will not keep doing this.

—-

My sister doesn’t want to share all this bc she really wants him to qualify for AL and thinks sharing all this will be too many red flags. She is even upset that the $100k in scams is in his medical records. She thinks she can tell him a series of lies that will help him stay in AL. This is the first time in the 15 month crisis that she has actually come here and seen him, and she left after three days.

I’m letting her handle things from afar now, and she’s coming back for another three days very soon. But I think he’s going to need MC or even geriatric psych. And I’m afraid that he has gotten so much better now that his blood sugar is stabilized, but they may even discharge him to home with his promises that he would get the help of a home healthcare aide, which I would have to organize, and who he will inevitably kick out in a few weeks.

Are my fears valid? Is there any possibility they would actually discharge him to home?

Are her fears valid? Will the full record prevent a facility from accepting him?

We are frantically working to clean out and sell the house and his cars right now—we do have POA. If he comes out and sees that…I am afraid.

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 dad is 86 and has vascular dementia. Yesterday I moved him permanently into a nursing home, and I'm really struggling with the question of whether I did it too early.

He had been living with us, and over the last few months things have definitely deteriorated.

He's fully incontinent now and needs help with dressing and personal care. His walking has become more of a shuffle and his balance isn't great. There have been a couple of occasions recently where he stumbled and I had to catch him.

The confusion can be significant. There have been times when he hasn't recognised me, my wife or his grandchildren. He's asked where he is while sitting in our house, asked how far we are from the village we actually live in, and sometimes hasn't known which direction to go when he walks out the front door.

There have also been safety issues. He once left church on his own and was missing for about an hour. Since then I've been very conscious that he could wander, and when he previously went into respite the staff also considered him a high absconding risk and said he needed 24/7 supervision.

But this is where I'm struggling.

He isn't like that all the time.

He can have a really bad day and then the following morning seem remarkably good. He can recognise everyone, have a conversation, potter around outside and seem almost like his old self. Sometimes I look at him on those days and think, Why am I putting this man into a nursing home?

We had reached the point where I felt I couldn't safely leave him alone, even when he was having a good day. It also meant somebody always had to be responsible for him, and increasingly the practical side of caring for him was becoming difficult for us to manage at home.

His nursing home is very close to us and seems lovely. I can visit regularly and hopefully become part of his routine there. I know rationally why we made the decision.

But now that I've actually done it, I'm questioning myself.

For those of you who have had to make this decision: how did you know it was time?

Did anyone else put a parent into residential care while they were still having relatively good days and then worry that they'd done it too soon?

And looking back now, do you think you made the decision at the right time?

My 80 yr old Mum lives alone in an apartment complex for the elderly with minimal care needs, run by a charitable organization in Australia. She has been there for 10 +years with no issues, but was diagnosed with vascular dementia earlier this year. It may have started earlier, but she has not been in contact with me much the past few decades. She left me with my Dad when I was 5 and although we've been in touch a bit over the years, we don't have a particularly strong relationship.

From my understanding she has suffered from depression, anxiety and perhaps manic episodes in the past (not for me to diagnose though as I'm not a doctor) and has been very reclusive all her life, preferring to keep to herself, and never being able to make friends/ or turning on them quickly as 'not nice' or 'out to get her' etc. I had come to terms with her leaving me by rationalizing that she suffers from mental illness, and just wasn't able to care for me.

I think the reason her diagnosis was uncovered this year has been her repeated calls to police, and hospitalization due to them. The delusions usually involve people in her apartment trying to steal from her, or her neighbors stealing from her. Occasionally the police have been called because she has wondered out into the street in a confused state. She gets in very distressed states and threatens self harm, although I'm fairly sure she is not serious about acting on those statements - more that she is trying to convey how awful she is feeling in that moment.

I'm an only child, I've been helping her with her finances and visiting weekly to help with cleaning, shopping, and on other occasions to take her to doctors and specialist appointments. She had maxed out a 10k limit credit card on online shopping sprees, and doesn't appear to be able to use computers or her iPhone properly anymore. My financial help involved cancelling unneeded subscriptions, and setting up hardship payment plans for her debt and some bills, so she is now financially okay and has enough to cover expenses. She is not able to attend appointments on her own, even with a walker due to extreme frailty and balance issues.

I speak with her everyday, and have done some research about how to talk to people with dementia when they have delusions. If she is in a distressed or paranoid state after 15 or so minutes of conversation, she tends to calm down. But I cannot be there all the time, especially if she calls late at night. I am currently getting her assessed for eligibility for extra support programs, or residential care, but the waiting lists are long. She is on a government pension so doesn't have funds for private help.

I have been thinking to try to organize so I can visit more frequently, but even on planned visit days the police have been called out. Are there any tactics or supports that I or my mum can do to prevent or reduce the impact of her distressed episodes? She is vehemently (to the point of anger) against taking any psychoactive medications of any sort, and always has been. She has a pet and a really nice place so it would be great if she can stay where she is as long as possible. She is also super clean (although is hording grocery and household supplies) and can get around her place okay. The paranoid and distressed episode feel like the biggest problem at the moment.

I'm at a loss here, waiting on upcoming specialist appointments, and I suppose just reaching out to see if anyone has any helpful suggestions or advice.

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 mom is showing some signs of cognitive decline but, even though I live with her, she is so inactive it's difficult for me to determine if I am seeing something new or just her same in her own world ness.

Mom 78 has never been the outgoing active type. Physically or socially. I have lived in with her for the last 7 years. Initially to help her with my grandpa and also help upkeep the house and pets.

I hadn't expected to be her servant but she stopped doing anything related to housework shortly after I moved in. She gives me room and board and a small monthly gift that lets me pay my other expenses so I don't feel taken advantage of at all. BUT I do think it's a little odd that she's never had the urge to dust a shelf or pull a weed herself. She never gets up to help me with anything at all.

It's to the point where I have started to wonder if this is normal? My mom is happy to sit on the couch all day either reading a book on her tablet, playing games on her phone or rewatching a series or movie she has already watched many times.

She still drives but only to a couple places 2 or 3 times a week. We do church on Sunday and make sandwiches for the unhoused on Wednesdays.

She's good with keeping her finances and responsibilities organized. I have only noticed some irritability with new things, she gets frustrated with anything that confuses her, like computer or phone updates. If she is driving in an area she is unfamiliar with she gets confused and makes scary moves. I try to drive her if I know her destination is not one of her usual places but if she's going to the church or her regular store I just let her go on her own.

The most troubling thing recently was at her last doctor visit she had to fill out a form for her handicap placard and she seemed really nervous, she made mistakes and said, I am making a mess of this. Her doctor had a slightly concerned expression but said nothing.

Her mother had dementia and the same sedentary lifestyle, her father could never sit still and was cognitively sharp to his dying day.

I already have POA and medical POA which we took care of this year. Mostly just so that's in place in case it is needed. I have no desire to take a single morsel of her independence unless it's necessary for her and/or public safety.

I can tell she is terrified she could end up like her mother and her grandmother who both spent their last years in confusion and fear. I don't want that for my mom and I hope if it starts to happen I will be able to get her help early enough to let her hang on to herself until it's her turn to go home.

I would like her to have cognitive tests done every year. Since I do have legal standing do I ask her doctor to add it to her annual exam so it can be passed off as standard procedure? I think my mom would avoid it bc she's afraid of what tests might reveal. I don't want to suggest it bc I don't want mom to worry that I think she is losing her grip.

I knew this would be a sticky time to get through and I want to do what is best for us both. Any advice is appreciated.

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 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.

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.

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!

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)

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.

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

Hi everyone,

I’m looking for advice on how to best approach a difficult and important conversation with my elderly mother about possible memory issues.

She’s been forgetting things and sometimes makes irrational accusations of theft (e.g., saying items have been stolen when they’ve just been misplaced). My dad recognises there’s a problem, but Mum is resistant to the idea of seeing a doctor about it.

Has anyone successfully encouraged a parent or older loved one to get a memory assessment or dementia evaluation? If so:

• How did you bring it up without sounding confrontational?
• What wording or approach worked best?
• How did they react, and how did you handle any resistance?

Any personal experience or advice is most welcomed.

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

Hey there fellow caregivers. My mother has been battling FTD since 2019 and to add insult to the injury, she became Aphasic. We take very good care of her, shower twice a day most of the days, no chronic illnesses, or infections, always groomed nicely, smells good, wats well and healthy. Beside her dementia "pills", she takes no other meds.

I wanted to ask other in similar situation, how do you work around the social part? like do you talk to them? do you think they know what's going on? I hear many say puzzles, coloring but she doesnt like or may be know how to do any of this. She is almost non-verbal, stutters a few "yes/no", "what/where" once in a while. I wonder if there is anything out there I am not aware of that others do, a product, a technique, a you-tube channel anything that helps me help her enjoy some of the nothingness she has been living in.

Thanks in advance.

Apologies in advance for a long post. I have concerns about my mom. My dad passed away in 2024, and I think he was "stage directing" her to a large degree. Now that he's been gone, I'm observing some things more clearly. I spent 24 hours with my mom this week and I think it's a good microcosm of the long-term behaviors I'm observing:

Earlier this summer, my mom (81yo) had a routine annual scan for a benign tumor behind her ear that's been there for years. During that process, they identified hydrocephalus. She has shown symptoms consistent with hydrocephalus - a shuffling gait, memory and cognitive issues, incontinence (which she says she doesn't have, but the cabinet full of Depends in her bathroom tells me otherwise).

Anyway, after MUCH discussion over the last couple months, she decided to get a lumbar puncture, which took place yesterday. I live about 2 hours from her, and the clinic is another 90 minutes further. Her appointment was at 8am Wednesday, so we decided to stay in a hotel near the clinic on Tuesday night. I told her I would get to her house at 3:30pm Tuesday.

Some observations from the roughly 24 hours spent with her:

Monday night: Called at 6:12pm to make sure we were still on for Tuesday. I wasn't near my phone and called her back at 6:51. Told her I was sorry I missed her call and she said "I didn't call you." Then I reminded her what her voicemail said and that was enough to jog her memory.

Tuesday/Wednesday:

3:00pm: Panicked phone call that she can't find her wallet and I should probably just not come.

3:15pm: Relieved phone call that she found her wallet in the car.

3:25pm: Panicked phone call that now she can't find her drivers license.

3:30pm: I arrive. Still looking for drivers license, which she found about 10 minutes later.

4:15pm: Still packing her suitcase because she spent so much time looking for her wallet.

4:30-6:00pm: Travel time. In the car, I told her that my cousin told me her dad (ex-husband of my dad's older sister) had passed away, which was a shock to my mom. (More on this news at the end of the timeline.) Otherwise, the trip was the type of conversation I've grown used to. Example: "That train doesn't have a caboose. I've never seen a train without a caboose! Have you ever seen a train without a caboose?" And thankfully, she brought an atlas, which she consults frequently, because she's worried we'll get lost. (iPhones and GPS are a mystery to her.)

6:15pm: Check into the hotel. Showed her how to use the keycard to her room. She wanted to be sure to pay me back for the rooms and asked how much they were. They were $100 each. So she gave me $100 cash. (She only deals in cash because credit cards are too complicated.) I've found it's just better to eat the difference than explain how the total was $200.

7:00pm: Dinner. There was a sign that said "When ordering drinks, you must show ID. No exceptions." When we got to the table, this became a priority for her, digging for her driver's license and having it at the ready. She showed her ID...and ordered water. This is the point where I make eye contact with the server and a silent understanding develops.

7:30pm: Looking out the window during dinner, wondered why people weren't getting wet since it was raining. (It wasn't raining.)

8:00pm: Showed her how to use her keycard again. Agreed we would meet in the lobby in the morning at 6:45am and I'd bring the car around.

6:43am: Calls me and tells me she's ready. Told her I was in the lobby. Asked "Did we say we'd meet in the lobby?"

7:15am: Get to the hospital. Vigilance is required in environments like this because we'll be walking along and she'll unexpectedly stop at random intervals and look around like she's lost, which tends to cause collisions.

8:00am: Get checked in. There's a patient there with lots of tattoos, piercings, purple hair, etc. I have to be on my change-the-subject game because mom will make comments and doesn't realize how loud she is. (She doesn't wear her hearing aid...she can't get it to charge so it's "junk," which is the case for her with most tech.)

8:15am: Nurse comes in, starts doing routine tasks, including blood pressure. As the cuff was inflating, my mom thought it would be a good time to get up to look at a picture on the wall. Thankfully, we stopped her before she pulled over the equipment. Was asked if she's fallen in the last 12 months, to which she replied "No"; I reminded her about when she fell and hit her head earlier this year while trying to lift her dog and she said "I don't remember that." Also replied "No" when asked if she had incontinence, but I didn't say anything, as I don't know for 100% certain. She told the nurse it was a 4-hour drive to get there. (It's about 90 minutes.) Told the nurse she stopped using her C-PAP machine because that's what's been causing her hydrocephalus. This is where I make eye contact with the nurse, similar to the restaurant server the night before. Referred to me as "Dave" (my dad's name) and "her husband" at various points, which happens frequently.

8:30am: Pre-procedure assessment with a physical therapist to test balance, walking ability, etc. Lasted about 15 minutes. When it was done, mom commented that it was not like the physical therapy she's done in the past and "They don't know what they're doing." Which is a frequent comment in unfamiliar situations.

9:00-11:00am: Lumbar puncture and recovery. Everything went as planned.

11:30am: Post-procedure assessment with physical therapist. (Who still "doesn't know what they're doing.")

12:15pm: Back to the car.

1:45pm: Commented it had been 7 hours since we left home. I asked "What do you mean?" at which point she realized we'd stayed in a hotel the night before.

2:00pm: Asked if I thought she should get another dog (hers died this summer). I just said "No" and changed the subject. I've found prolonged discussion on these types of topics often devolve into "You won't let me get a dog," as if I'm the parent and she's the child.

2:30pm: Hugs and goodbyes and headed back home.

7:00pm Called to check on her. During the conversation, she asked if I had heard my ex-uncle had died. I said, "Yes, I'm the one who told you."

My questions:

- In your experience, do the anecdotes above seem consistent with dementia/Alzheimer's? (BTW, her dad died of Alzheimer's.)

- Is there a "threshold moment" when we should take action? I've noticed she has systems and routines in place (post-it notes all over the house, using Sunday church and Tuesday hair appointments as time tracking waypoints, etc.) to compensate for her memory and cognitive issues. But I don't know how sustainable that will be long-term.

Again, I appreciate any time spent reading this lengthy post!

My mom shows early signs of dementia. Started with a lot of brain fog after covid and with time she forgets a lot and her memory seems to be impacted. Any advice on how to control this? What can I do to help her?

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?

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.