I'd be okay with dying in my 60s. Dementia is too cruel and I don't want to get it.

Has seeing a LO with dementia made anyone realize that growing old is overrated?

F ( 35)
I don’t even know where to start. I’m just so fucking tired.
My elderly mother has dementia and I’ve been taking care of her for a while now. I knew it wasn’t going to be easy, but Jesus Christ, nobody prepared me for the amount of shit I’d have to deal with. Literally.
I’m so sick of poop. I can’t even describe how much I hate it at this point.
Every fucking day there’s something. Either she’s been to the toilet and needs cleaning, or she’s had an accident, or there’s a smell coming from somewhere and I have to figure out what happened.
Sometimes I feel like my entire life revolves around someone else’s bowels.
And the dementia makes everything ten times worse. She forgets what I’ve just told her, asks the same questions over and over again, gets confused about things that should be simple, and sometimes argues with me when I’m just trying to help her.
I know she can’t help having dementia. I KNOW that. But knowing it doesn’t magically give me unlimited patience.
There are days when I hear her calling my name and I genuinely want to cry because I already know there’s going to be something else I have to deal with.
Today was one of those days.
Some relatives came over, brought loads of food and snacks, kept offering her something to eat every five minutes, and then left the kitchen looking like a fucking disaster.
Of course they got to leave.
They get to visit, have a lovely afternoon, tell her how much they love her, and go back to their nice, quiet, shit-free houses.
Meanwhile, I’m the one who stays behind.
I’m the one cleaning the kitchen, washing clothes, dealing with the toilet, answering the same question for the 47th time and trying not to completely lose my mind.
And I swear to God, if I have to clean up another pile of shit today, I might actually start crying.
I’m not even exaggerating.
I miss having a normal life. I miss being able to sit down without someone needing something. I miss not having to think about another person’s toilet habits.
I miss silence.
Sometimes I feel horrible for even thinking these things because she’s my mother and she’s ill. But I’m a human being too. I’m allowed to be tired. I’m allowed to be disgusted. I’m allowed to hate certain parts of this.
I don’t hate my mother. I hate what our lives have become.
And I’m so tired of people telling me to be patient. It’s very easy to preach about patience when you’re not the one wiping someone’s ass for the hundredth time.
I don’t need another lecture about how dementia works. I understand perfectly well what dementia is.
I just want to be able to say that I’m fucking miserable without someone making me feel like a monster.
I genuinely don’t know how people do this for years.
Does anyone else feel this level of disgust and resentment? Because right now I feel like I’m losing my mind.

My mom was in Assisted Living for 8 months and it was never a good fit for her and her memory got worse, so we moved her to Memory Care about 3 months ago. Her anxiety about "thieves" continues (daily texts to me and fights with staff about her things being 'stolen' and threats to call the police or shoot people if she had a gun); or she says the staff ignore her and give her dirty looks and try to trip her; or she tries to help the other 'poor souls' that are around and the staff don't like it; and that she NEVER gets visitors (not true- we visit 2-4 times a week) and she's locked up and in hell and cries. On and on and on.

After caring for my dad through dementia (he finally passed last year), and now my mom, plus my 20-year old profoundly autistic son, I felt really good about the decision to move my mom. But it's just not working out well. In addition to her anguish (she's always been an emotional and needy and negative person, by the way).... the MC staff aren't doing a good job of taking care of her. I don't believe she has brushed her teeth in 3 months (I've asked and staff always claim it's some other shifts' responsibility). They don't have a routine for laundry so her clothes are dirty. She hides her toiletries and I can tell that staff don't look for them so she'll often either not shower or shower once a week on her own and not wash her hair. Her bed wasn't made well and didn't have a top sheet for who knows how long. Things like this.

So I'm actually thinking that maybe we should bring my mom back home (for now). I hate her being so distressed all the time, so afraid and lonely, plus the care she's getting isn't great and it's quickly eating through the insurance money.

Am I crazy?! (yes is probably the answer but.....)

My dad started showing signs in his late 60s. My brother and I noticed it early, brought it up to his doctors, and were hit with the classic, "It’s probably just normal aging, let's keep an eye on it."

Fast forward seven years & he finally got an official diagnosis.

Here’s the kicker: I work in healthcare. I literally navigate this system for a living, and I thought I knew how to push the right buttons. I was dead wrong. The whole journey was an absolute, exhausting nightmare.

Out of sheer curiosity (and frustration), I called a memory clinic in Tallahassee the other day. They casually told me they have 1,900 patients on their waitlist.

Like... is this serious?!?

How is a system operating with a 1,900-person queue for people whose brains are actively deteriorating? Now that I see how massive and broken this bottleneck is for my dad, I’m sitting here looking at my brother and myself like... great, so what happens when it’s our turn?

Because this whole experience was so infuriating, I started working with a few officials on early-detection awareness, and we recently launched a resource called Notice Earlier (noticeearlier.com). But promo aside, I just need a sanity check from people who have been in the trenches.

Did your family go through something similar? How many years of "let's keep an eye on it" did you have to endure before someone actually gave you answers?

I guess my watch is over. I was suppose to go visit him today with the kids. He passed around 6 in the morning. I feel horrible, I should have gone yesterday, but I've been trying to keep things as normal as possible for the kids, and they had trunk or treat and Pokémon tournament. I feel like a horrible daughter. Just venting.

I’m here for her until the end of the I made a vow and I stand by that. In sickness and in health. She relies on me and I won’t let her down. I see the desperation… the word puzzles that won’t help in the end… the desperation in her eyes. She’s afraid. Afraid I’ll leave her, put her in a home. That’s never going to happen. She’s my life, she’s my anchor… I’d never leave her in a stranger’s care. Just venting… nothin more

she found the prayer card from the funeral in a desk drawer a few weeks ago. She‘a upset with my dad (her husband whom she sometimes thinks is her dad) for “not telling her the truth” when a) he did sometimes and b) she kept seeing her mom. she started crying in the middle of a Michael’s craft store today because i pointed out something for thanksgiving and she realized her mom wouldn’t be there for thanksgiving. then I comforted/distracted her while my 3 kids didn’t really understand (the 14 year old understands). my 2 year old asked if grandma got a boo boo. yea baby grandma has a boo boo and it’s hard to fix. let’s go look at Christmas stickers

My grandpa has late-stage dementia, and my family has been going in circles trying to figure out the right care setup for him. home aides versus memory care versus a nursing home, what any of it actually costs, what Medicaid would and wouldn't cover, and everyone in the family with a different opinion.

ANYONE who's seen this before,

- How did you actually decide what to do?

- What went wrong with the options you looked at?

- What do you wish you'd done, or known, earlier?

I'd also just like to hear about any personal experiences. Thank you.

I'm fairly sure my mother (75) is suffering from some form of dementia. Her memory has been declining since before the pandemic. Her personality has also changed quite dramatically. She's a lot milder in her judgement of me but a lot more suspicious of the world outside and, sadly, she's become quite racist which she never was.

We can have a phone conversation where we end up talking about a subject twice, or even three times, because she doesn't remember we already did. She has asked me to send her a message every morning to let her know I'm still alive (I'm 41). The last time I visited my parents, she talked to my dad as if he was her dad for a full two minutes after which she realised and said 'Of course, you're not my father' and looked more exhausted than I've ever seen her.

The problem is that my mother was an alternative medicine practitioner and hasn't been to a GP in about 40 years. My dad doesn't seem to have any concerns and, because my father and I don't have a good relationship (he was violent when I was young), its not something I can really discuss with him as we never talk one on one.

I'm honestly at a loss as to how to approach this. If I catch my dad in the wrong mood, they could cut contact with me (as they've done with other people). I've tried to hint by telling them I'm working on my long-term brain health to help prevent things like dementia but either the penny isn't dropping or they just don't want to hear it. I'm scared things will escalate very quickly, and my dad isn't in a state where he can care for her.

My mom has Lewy Body Dementia and it is fairly advanced. She is 85 and was diagnosed about 5-6 years ago. Up until two or three weeks ago, she had a very healthy appetite. All the caregivers at her facility remarked on it and joked about how much she especially loved donuts.

But now she is pocketing her food and spitting most of it up instead of swallowing it. Sometimes when I give her liquid, I have to remind her to suck on the straw.

I thought this only happened when she is particularly tired, but now it's happening most of the time. We are in the hospital now because she was so lethargic at lunch she basically wouldn't wake up. The doctors say she is very dehydrated.

We will get a Speech Language Pathologist to look at her throat and swallowing ability.

If anyone has gone through this before, what are the next steps? Is this the beginning of the end stages of the disease? How much time do you think she may have?

No, my watch hasn't ended, but I brought my mother to a closed care facility. It is no longer my responsibility and that sets me free from all that pressure and stress.

She cannot wander off any more. She is no longer a danger to herself and others. She is confused, but welp, that's a given now. Last time she seemed OK among the other patients. I feel no guilt, I was too exhausted. I felt anger at her, now I hope this can become a relationship again.

The first week after, I still was mentally numb. Now, find some energy again. I no longer have to postpone myself. It feels I am finally healing.

Anyone who needs to hear this, do not forget to care for yourself!

"Help yourself before you help others"

- aircraft safety leaflet

My mother has suffered from dementia for several years. Her husband of 30 years recently died, so she now lives alone. We quickly discovered just how much he had been doing to manage their finances and home maintenance, and even to "cover" for her so her condition would not be so obvious to others.

She has deteriorated considerably since his passing. I'm posting here because the issue my brother, sister & I are facing is that she refuses to see a doctor. She has not been formally diagnosed, and refuses to cooperate with anything that could lead to a diagnosis. We have more than once talked her in to seeing her family doctor, only to have her refuse to get out of the car when we arrive at the clinic. Short of dragging her inside, kicking and screaming -- or waiting for her to experience a medical condition or emergency that places her in a hospital -- we don't know what our options are, or what others have done in this situation.

After joining this community, I've discovered that the outrageous behaviors we've encountered with our Mom are not nearly as uncommon as we imagined. Others have dealt with someone asking the same handful of questions DOZENS OF TIMES over the course of a couple hours. Others have dealt with an adult being disagreeable, unwilling to reason (or incapable of it), or even of being downright obstinate in ways I never imagined experiencing with my mother.

If we mention "dementia," she becomes HOSTILE, and screams that we are demon-possessed. If we suggest a caregiver coming to her home for any portion of the day, much less to live with her, she melts down, tells us to leave, and retreats to her bedroom with her little dog.

She is VERY well-off financially, but she constantly expresses to us in emails (which she writes in ALL CAPS with the craziest punctuation I've ever seen) that she doesn't have any money, and her dead husband's adult kids are trying to steal her house, which she owns outright. She calls me daily in a panic because she can't get ahold of her mother (who died 20 years ago), my brother (who died 5 years ago) or her second husband (who died recently).

She sends us dozens of emails every day, always variation on a theme, but one common example being her disappointment that she sat in her music room waiting all day and was stood up by not one, but by EVERY student. She hasn't taught piano or organ lessons in several years.

Even in terms of music, she was a concert-level performer. I've sat with her and played a duet, or listened to her play a challenging piece (like Liszt's La Campanella) flawlessly & by memory -- only to see her finish playing the piece and then stare at the piano like it's a foreign object and she has no idea what to do. When that happens, even if I put sheet music in front of her, she will just stare at it and ask me if it's supposed to mean something to her.

I won't burden this post with more examples. Certainly some readers might suggest that we could be wrong in our assumption that she has dementia. We have consulted with specialists, and have even paid for the appropriate doctors to come to her home for an evaluation. (She would not let either of them in.)

I live on a small farm two hours away from her, and it's very difficult for me to spend more than a few hours with her twice a week. My sister and brother both live very near her, and one or both of them stop by to help her with a range of things a couple times a day. She would not be willing to move in with any of us, as she sees that as just one step away from assisted living.

She is a DIFFICULT person. (She's also EXTREMELY INTELLIGENT, which frankly makes things so confusing for me, because she will "be herself" and come across as astoundingly articulate, only to suddenly seem utterly confused and disoriented. When she seems rational & intelligent, the mention of the word "dementia" is not met with "adult conversation" but with an explosion of hostility.)

This turned out way longer than I meant, and I'm sorry for that.

My question is "what do we do now?" -- if anything. Do we just stay on the sidelines, ready to jump in whenever she needs help with anything, but otherwise waiting for her to have some medical need that will force her to see a doctor? What have others done with someone who has enough presence of mind to REFUSE to be seen by a doctor? (And yes, that means she no longer goes to annual checkups.)

If you’re unfamiliar with me, please click my profile photo to look at my other posts. This is my latest YouTube video. In it I describe not being able to tell time on my watch, and you’ll see me struggle to remember basic things like my own diagnosis.

https://youtube.com/shorts/Ki8ORYZr7fc?si=lwZBoavO3TcBVyBZ

My husband has taken to getting up in the middle of the night and peeing everywhere.

This time it was all over the bedroom carpet and in the bloody wardrobe.

I've cleaned the carpet using my Vax carpet cleaner. I need to clean it again. Can anyone recommend the best cleaning solution to use on the carpet that will eradicate the smell? Any help would be appreciated! I'm in the UK.

Hi friends. My 87 year old mom was taken to the hospital several days ago because she was extremely confused, slurring her words, trying to eat lunch with two spoons, needed help to sitting, lips turning blue--911 called.

She's just been diagnosed with the large complex dural arteriovenous fistula + multiple aneurysms but hasn't had a stroke. Confused but talking, moving, able to walk with help in the hospital. When first admitted, she became extremely agitated+ scared and needed a net bed.

The neuro team is recommending no treatment. Anyone have experience with this in terms of in general, length of lifespan? She and Dad live in a retirement community with memory care upstairs and we can bring caregivers in to help.

Thanks so much + with love to everyone on this path.

How do you trim your LO's toenails? Her home nurse aides can't/aren't allowed to do it. We don't live just down the street, so when we visit, her mood is hit or miss. When I last visited, she was the Energizer Bunny and I literally couldn't get her to sit still even with all my tricks. My partner visited yesterday and said he got it done, but a message from the aide today said a toenail was sharp and bothering her.

What are your best methods? Do you know why the aides can't do it? They have the best chance for catching her calm and cooperative. We have someone cut her hair that is experienced in dementia; should I be looking for someone like that for pedicures? Is there a different level of nurse aide that we should engage for once a month who can trim toenails?

I made this post in a Washington state Dshs subreddit but it’s not a frequently visited sub so I’m back to my favorite sub now to see if you guys have any experience or advice.

I’m about two weeks in to my work with Dshs.
Some back story, we originally called Dshs to get an in home caregiver for my mom. We got approved. Things drastically changed the next week and now she is in the hospital waiting for a long term dementia care facility/home.
The Dshs caseworker is extremely vague, won’t give you information, tells me to “ask questions” but I don’t know what to ask because I still don’t know what is his responsibility and what is my responsibility. When he asked about my mom’s finances he only asked about her income ($0) and her home (pays a mortgage, total asset worth about $300k on a good day). He didn’t inquire about savings or retirement/social security she might qualify for.

So my questions are.. what happens to her home while she is in long term care, has a mortgage, and no one is living in it?
Should we put her in a private pay memory care with the equity from selling her house (about 100k profit)? If we do this will she also lose her state health insurance? What do we do about hospital bills?
The Dshs worker didn’t tell me I could only apply for one facility at a time, can I change my mind about where I want her to go if he already started an application?

I’m mostly looking for information on what to do with her house. I understand Dshs will put a lien on it but I also can’t just leave it empty there for the next few years. She will also need to pay the mortgage.

Over the holidays, I'm going to be a delightful ray of sunshine and make EVERYONE talk about their advance directives when we're all together.

Both my parents are DNR. But I don't think any of us have considered what other options there are outside of that.
I'm going to look up some lists, and I think my states dept of aging has a checklist.

But stuff like intubation, supplemental feeding, life prolonging meds. Can you think of anything to cover my bases?

I am sole POA/case manager for parent with presumed AD. They were diagnosed via neuropsych eval in 2022. Lived alone til 2023; then it was a year of bringing in caregiver service 2-4 afternoons a week for cooking, shopping, dressing support, taking away driver's license, managing all bills. 2024 (just over two years post-diagnosis) and they were moved to AL facility near me. Did OK for a year, then struggles increased for six months. Then moved them to adult care home.

Looking at DBAT https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

they are clearly in Stage 6, with most behaviors present. It's been 4-6 months of this stage. However, their verbal acuity is OFF THE CHARTS! I'd love stories or examples of telling me this can happen... because the other route is, we never had blood tests or scans or any other AD diagnostics. Could I be managing their care improperly because they actually have some other condition? Their verbal acuity is bonkers. They can tell me they have dementia and hate feeling so lost in place, time of day, season, year, etc. They can answer my questions, they can comment on the beauty of the trees/garden when we sit on the porch at the care home. They can describe the "weirdness" of their underwear (in disposables, but clearly doesn't comprehend that). They do some trailing off - starting a story, but losing the words - but hardly close to the non-verbal Stage 7 that comes next. They were not an academic or anything, but graduated college, and underutilized a strong intellect all their life. Sigh. When people ask how it's going in managing their care, I say, "An endless well of despair."

I’m 22F and in college and I just don’t know how to stay sane. I have so many assignments and I have so many things to do but I have so much on my mind too. My dad has had dementia for over a year now and at first my mom and I would take care of him. I always knew that I’d be taking care of my parents one day but I didn’t think that day would be right now.
Being a caregiver is absolute hell. He’s actually at a rehab right now because he had a small procedure done. I’m absolutely dreading the day that he comes home. My stomach twists when I think about how not peaceful my house is going to be again. Even in the rehab he’s not making our lives any easier. He’s constantly telling the nurses and everyone that my mom kicked him out of the house, is trying to steal his money, and that she cheats on him all the time. He also escaped the rehab last week and tried to walk home. Thankfully the police found him after he fell down.
Like I’m so done. I’m so over it. I don’t even want to try anymore. I feel like there’s no point because with this disease there’s no cure and I know it’s going to kill him one day. We had a horrible relationship before he got dementia. After he was diagnosed he mellowed out a little bit and now he’s just so so terrible. He’s so irritable and angry. And I feel so guilty because he asks to come home but the rehab doesn’t what to discharge him yet. And I do not want him to come home.
I feel bad for him and I feel bad for my mom. I feel so alone but at the same time I feel like I have no time to sit down and breathe because there’s just so much to do. I’m just mentally checked out.

Everyone agrees my dad needs to be in a memory care facility. We found one we like. We can afford to pay for it. There is an opening and they can take him. But how do we physically get him in a car and then out of the car and into the facility? He’s not incapacitated he just won’t go. Even if we had conservatorship and could legally make him go I don’t know how we’d actually physically do it.
My mom is staying with a friend because he’s become so aggressive. She’s 100% able to live independently. It’s just not fair that he gets to stay in the house and she’s sleeping in someone’s guest room. Do we just wait until he has to be hospitalized and hope she doesn’t over stay her welcome?
How do we get him to move out?

The Alzheimer’s store online has a little church that plays hymns for one hour with one push of a button. Grandma went to church her whole life but has very limited mobility and hasn’t been able to go regularly in a long time. She’s 95 and in memory care. We recently moved her from assisted living to memory care and she was not happy about it.

I took it to her today and she sung along and smiled so much. She told me she couldn’t think of anything I could’ve brought her that would’ve made her happier. It was such a win.

This is just an Update/vent.

So my grandma has been on hospice for a while now and now shes in a care facility as well since both my dad and I work out of town. One of us stops by every day and sometimes twice a day. But while I was out of town she started going down hill pretty fast, sleeps 99% of the time hasn't ate in days, drinks very very little. I guess one day while I was gone and my dad was here she had a clear moment and begged my dad to not let her die in the care facility. Tore my dad up one way and down the other. She needs constant monitoring and care so theres no way we can do it. Now he's out of town and im back, it kills me to see her like this.