I have been really tired and not very patient lately. It’s mostly when showering or when she just doesn’t try to do things. It’s like anything that requires effort or is even remotely a challenge she doesn’t even try. She says “I can’t…” at least 50 times a day and she doesn’t really have to do or try many things. She’s too cold, then she’s too hot. She is obvious about what she doesn’t like.
I’m just exhausted.
Yesterday we were driving and she just kept wiping her nose over and over. It was the most annoying sound I could possibly experience in the moment. I said, “Mom, just blow your nose.”
She does and then says “You don’t like me very much do you?”
I felt like I got kicked in the stomach.
Guilt, shame, sadness, frustration, anger then back to guilt, shame and sadness.
I apologized. Said it’s not her, it’s the circumstances.
And now I’m just spinning in the guilt and shame.
She doesn’t deserve to feel that way.
This is SO much more than I ever imagined it would be and she is A LOT. And, it could be so much worse.
I’m glad she told me so I can be more aware.
And I feel so broken.

Hi all, I am living in my own science experiment. I have had vascular dementia for almost a decade and after another stroke, my executive function is completely out the window

Via bouncing things off chatGPT because it doesn't have a doctor filter of lawsuits. I have determined that before things used to have an intrinsic value to them. For example cleaning the sink had a value to it over doing my laundry, so the sink would get done first. Now there is no intrinsic value to anything . It all is zero except the few things I have put to infinity, like seeing a girl I like or going out to attempt to socialize till my brains cache overflows and I have to run back home

Anyway, just for those who are watching someone decline, it's not that in some cases we don't know what goes on first underwear or pants, it's just they have the same material value to a demented brain.

I wish doctors asked the correct questions and not when did I notice that cooking which I love to do is challenging. I would tell them while I am still in this eventual tomb

She repeatedly tried to get to the bathroom through the hallway wall, forgot about the ensuite altogether.
We slept in the one queen size bed so I could keep an eye on her if she wanted to get up in the night.
She couldn’t remember where the kitchen bin was every time she needed to throw one of the billion tissues away.
Was obsessed with the contents of her handbag opening emptying and repacking it a lot.
Spent 45 mins obsessively cleaning her teeth each time and was cross when I tried to wind up up saying she hadn’t done the top ones yet.
So many conversations going in circles.
Needed toileting and showering. Assistance with eating dressing walking- everything.

But I loved every minute of it. I am acutely aware that these will be the good old days.
I hate this awful disease, she’s the sweetest person.
Things are declining quickly and I am scared of what next year will bring.
She looks well and is actually healthy but for this.
Gosh I’m doing a stream of consciousness dump here. It’s just a bit overwhelming to look too far ahead I guess.

I watch after my uncle with dementia. He is refusing to take the dementia medication. It's been about a month since he took his medication and his dementia is rapidly declining. He won't stop driving and he won't go to a nursing home and he can be really mean. Not sure what to do if a dementia patient refuses to stop driving and won't go to a nursing home. I found an assisted living that will take him but if he is bad they can't keep him. Not sure what to do if he refuses to go. Has anyone had to deal with this before? I’m just not sure what to do in this situation.

I was reading another post about someone's mom rummaging through her bag, or wiping her nose in a repetitive way. Made me think of my situation and wonder what else people are dealing with.

My LO taps, bangs, smacks EVERYTHING. I believe it's a musical thing for her but holy moly is it ever loud and grating. She'll wake me up nightly by banging on the walls 🥴

Trying, as we all do, to have empathy and patience about it 🤪😇

What are your people doing?

Every time she stands up she’s stumbling, falling multiple times a a day. It’s so loud when she falls. She spills drinks, smashes things. She’s done so much physio to help her balance and with the falls clinic and nothing has helped. She’s got vascular dementia and is awaiting a hip replacement for osteoarthritis.

The falls just give me so much anxiety my heart rate skyrockets every time she stands up. She’s covered in bruises i’ve tried to make the house as safe as possible and we are getting her a falls alarm but she could still fall and hit her head on the wall for example. She always gets all distressed and then laughs it off. I’m so exhausted my chest hurts constantly i’ve developed TMD from stress making my jaw lock constantly i’ve lost 10kg i’m losing hair i’ve lost my period i’m in agony. I have had 3 carers assessments cause nhs talking therapies refuses me and just refers me there and they amount to nothing. no support at all. i’m so scared and stressed. i’m really not coping. i feel like im always in fight or flight especially when i hear her standing up or walking around scuffing the floor and my blood pressure is high im only 24 and it’s killing me.

Everytime i mention her going into care she gets so angry and says she’d never put her mum in care and calls me horrible. she’s only 66 and can still cook/clean/dress herself etc i feel bad putting her in care since she’s just been diagnosed but the falling is the worst part.

After trying to be my 90-year-old mom’s sole caretaker for almost 4 years, and my dad’s for two years before that, my mom needs to go into memory care. It’s going to be a big hit for my brother because he will have to pay for it out of his retirement, but it is time.

She has Vascular Dementia and moving from stage 6 to 7.

Question: he’s not happy about the center I found because they only have double rooms and not private rooms. I see the problem with having a private room when they are in memory care, especially at night when my mom is terrified of being alone.

Right now, we are in a split-level house. She sleeps upstairs and I sleep downstairs and I can run up anytime I need to, but she still can’t go to sleep easily now because she’s afraid. That’s why I think having another person in the room would be helpful.

Can anyone give me feedback on whether they have had their loved ones in private rooms in memory care? I was told it’s not common.

Just a year or so ago my mom would hate to have a roommate, so to speak, but now I think it would be better for her. The doors are closed, and she has claustrophobia, so she knows there’s someone else in the room with her at night when she has sundowning, I think it would be a big comfort. But I’m willing to listen to input.

Hello there! I am 56 and have seen a neurologist and had some troubling findings but I did not go the whole way on dx. I have it in my family and also have every conceivable risk factor and symptoms since my early 40s. I would be shocked if I didn’t have it but I don’t know if I should go the whole way yet - thoughts? Thank you to each every caregiver here - I know first hand how terrible that is

My mom has been showing signs of, increasingly, of having paradoxical reactions with seroquel (quetiapine) so -- due to agitation, especially overnight -- she's just been prescribed a low .25x2 times per day dose of risperidone (plus a PRN dose).

Anyone have any experience?

Advice?

Does anyone else have a loved one who won’t adjust to memory care? My mom has vascular dementia, and went into a nice care facility at her retirement community three months ago. It wasn’t a bad transition but things seem to be getting worse the longer she is there.

She won’t participate in activities, resists help from aides who want her to shower or brush her teeth, stays in her room because she’s scared and paranoid, and wakes up terrified and lost and hungry all the time but will barely eat when she is given food, and sometimes says she wants to die.

My Dad sees her daily for hours at a time and eats dinner with her. I see her weekly and my sisters call her. She thinks she’s all alone and never sees any of us, doesn’t understand her condition, and is really losing touch with reality. She used to be a high functioning and social person, but was always very anxious. She’s on Lexapro and it doesn’t seem to help.

Any ideas?

Hello my beleaguered colleagues.

My mother’s vascular dementia is governed by fear. She’s in stage 5/6 and is beginning to sundown hard.

I’m looking for advice.

This is the 3rd time where I’ve caught my mom thinking nobody was in the house and clutching an item (rocks primarily) to defend herself. We are usually asleep in our room and she barges in to say hello at 5 in the morning. When she realizes we’re home she leaves.

I’m just troubled by this and worry about it escalating. Do any of yall have experience in dealing with or mitigating it.

She’s got a decent rock collection, but what I’m more concerned with is if she discovers or picks up something more worrisome.

Do any of you have experience with this?

Thankyou

Does anyone here have a strong family history of dementia?
My fiancé and I care for his dad. His dad has early onset dementia, diagnosis unspecified dementia. He’s had symptoms since age 59, moved in with his son for care at age 63, and is now age 69 in the late stages, needing help with everything.
His sister, who is 3 years younger, started showing symptoms somewhat recently we think. We saw her about a year and a half ago and it was clear something is going on, but she and her husband are not ready to discuss it. I think it would be considered early onset as well because symptoms began before she turned 65.
Their uncle (mom’s younger brother, my fiancé’s great uncle) died of dementia in his early 70’s. Their mother (my fiancé’s grandmother) had dementia and died in her early 80’s. They called it Alzheimer’s, but from what I can tell that diagnosis was not official. I don’t know if they did a spinal tap to check her CSF. I don’t think anyone had an autopsy.
It’s troubling to me that it’s 4 people in 2 generations, and we don’t know exactly what kind of dementia. They moved all over the place, so while environmental causes aren’t out of the question, I think they’re less likely.
We are working on getting the amyloid protein blood test for my fiancé’s dad. It’s new and not covered by insurance, but we really want to know if this is Alzheimer’s or something else.
We also plan to do a full brain autopsy when he passes to see about other causes or mixed dementia.
Does anyone else see such a strong family history of it? If so, do you know for sure what kind of dementia it is?

My parents have vascular dementia. Dad is in stage 5/6 but is declining. He knows there is something wrong on his good days and has commented about dying. Every morning, I listen for him breathing. I have so many mixed emotions when I hear a breath. Is this normal? I feel relieved and also disappointed. His confusion makes me so sad, it's hard to see him like this and not the strong dad he was just a few years ago. Mom, on the other hand, has short-term memory. She doesn't realize she has a problem.

Sorry if the language is offensive to anyone, but I thought most us here would appreciate this sentiment. Saw this for sale on FB marketplace and it immediately made me think of this sub.

Hello, everyone. I hope this is the right place. My FIL has advanced dementia and is bed-bound. He can still eat, drink, swallow no problem.

A couple of times he’s had a spell where he gasps? Chokes for air?? My MIL struggles with English and we haven’t been able to witness the incidents to know exactly what she’s seeing. She said his eyes looked like he’s not getting oxygen. Maybe she means he has a distant look? Or distressed look? But she describes the noise he makes like he is making a loud noise while barely exhaling. I don’t know how to describe it except to say it’s the noise Mr. Krabs makes when he first meets Ms. Puff, when he’s got bubbles coming out of his mouth. I know that sounds ridiculous but here we are. Both times she has called the squad to take him to the ER and usually inconclusive other than his recurrent UTIs from catheter use.

Sorry for any confusion. I want to help her out as much as I can and I just wonder if anyone knows what it could be. Thanks.

I am the only child and only living direct relative of my adoptive mother. She was abusive and I do not enjoy being around her. Now apparently guardianship of her is the only way to keep her safe and get her into memory care because she has too much money for a public guardian and not enough money for a private, professional guardian. I really do not want to do this. Just being her POA has already sucked all of the life out of me, put my marriage on the rocks, set back my career tremendously. Taking on more responsibility is the last thing I want to do. In fact, I would rather step down as POA than get more involved. But the elder law attorney doesn’t seem to think I have a choice. And they make everything sound like it’s simple when all of this is both expensive and time consuming.

A little update on my spouse's diagnosis / non-diagnosis.

Background: diagnosed in December 2025 with generic Dementia. Had a referral to specialty Neurology Memory Disorders Clinic (tops in the region) but the wait was seven months until initial appointment.

Spouse's symptoms didn't *really* fit into any category. Had a long-form neuropsych test that came back with mixed results - didn't fit any "regular" diagnosis for AD, PD, FTD, or any others. Just Dementia. Short-term memory is mostly intact. Long-term memory is intact. Problem solving skills are way below normal range. Plus, walking & balance issues along with incontinence. And so on.

I posted a month or two ago about spouse getting tested for NPH. NPH diagnosis is now confirmed and we are awaiting a call from the surgical center to get him on the NeuroSurgeon's schedule. Operation likely will happen within the next 6 weeks.

We have discussed at length the pros and cons of shunt placement/ brain surgery.

Pros: possible improvement in symptoms.

Cons: doesn't fix anything / potential worsening of all or some symptoms (due to anesthesia effects, infection, etc).

Spouse wants to move forward with surgery. I do not disagree.

I know that some of the folks on this sub have had poor outcomes.

My question: have you regretted moving forward with shunt placement for NPH? Y or N? How did you justify / rationalize / deal with your feelings either way?

My mom has gotten dementia pretty bad the last few months after a fall the only problem is she was physically abusive to one of my sisters and verbally and emotionally abusive to me and my other 3 sitters in are teens and 20s. Two of my sisters become no contact with her about 20 years ago. She did live with my other two sisters for several years but eventually that feel through and she had to get her own apartment and they no longer speak to her. I cut off contact with her about 10 years ago for a couple of years but slowly came back with bounders and we aren’t close. At the moment she can’t take care of herself, she forgets to take meds or take ones she shouldn’t be, doesn’t feed or clean herself without some telling her to do so. She can’t live me. Not only do I work long hours I have no help and I’m not going to put myself back in a place to be abused. She is already starting to act like she did before, being controlling, harassing, mean and nasty. I tried to hire a caregiver but it is not working out. She only has enough in savings to pay for about 6-12 months of at an ALF. I do not want power attorney and do not want anything to with her money, that is one thing she has always harassed people about, she doesn’t even want to pay her caregiver and says she doesn’t need the help. If a I find an ALF facility that accepts Medicaid, will they just apply for her when she runs out of money and do they mange her money. I am desperate to get her help but I can’t be the one to do it…I already feel like am back in that same spot I was in 20 years ago.

My family member passed last night and the caregivers at her memory care were so caring with my husband when he got there, and sat with him and told stories about what they'd liked doing with her. They really became attached to her, which is especially moving because she was only there 6 months and was not at her kindest while she was there. We would like to express our gratitude to the staff there, which is primarily aides who are of all different ages and come from all over the world. Any ideas? They took such good care of her. She had so few falls and UTIs compared to when she lived in IL or when she was in rehab. It was remarkable, actually.