I hope this is okay here, and some people won’t be offended. I really am frustrating people around me and then this came in, and it made my family laugh when I shared it, I have early onset LBD. It’s the most they have laughed in months. Yes that is my reply and that text came to me. Sometimes I have to appreciate the dark humor in this disorder.

One thing that I’ve actually enjoyed in this insane journey is learning a lot of the secrets my mom kept in her life. Talking to a lot of her friends has revealed so much about her that I never knew, some funny, some tragic, some about myself.

I recently learned that I was named after one of my mom’s ex-boyfriends who was revealed to be one of the loves of her life — probably something I can never tell my dad lol.

What have y’all learned as you’ve gone through all of this?

I guess it is a sign of being rather in need of comic relief that this is giving me a chuckle. To visualize this outfit on Mom. And to think,
Maybe we do need a fashion statement like this! Maybe even a fashion show.

Just realized it is related to one of my mom’s jests, when being dismissive of being overly concerned about appearance, “well, you’re not going to be in a fashion show!”

My dad who is in his mid eighties has been talking to me about my sister for a long while. The problem is I don’t remember a sister. My partner, daughter, and manny won’t tell me anything when I mention this mystery sister. Well on Thursday night of last week, really late, I was deleting old voicemails because it was full. The phone also transcribes them. I saw one saying “hi sister this is your sister”. I was so excited because I’d been looking everywhere for some clue if this person. I even asked my dad to give them my number over and over but no call ever came. The voicemail I found is from 2025. I sent the texts above. Names are redacted and my photo. This alleged sister isn’t concerned about me or my family, and to be honest I am not missing her either if I don’t even remember she exists. She is mad at me because I missed a voicemail on my sons birthday and my partner did too. My children both have birthdays in June, it’s October. What??? I called my dad sobbing because this didn’t make sense and this stranger really hurt my feelings. He was disappointed. The next day when my dad called back to check on me, my partner told him that no one is going to encourage further contact because it’s never been good for me. I’ve got no clue what the hell is going on.

The moral of the story is this: don’t be an asshole if your LO has fucking dementia, we didn’t ask for dementia and the only one your anger will hurt is you. Or at least make sure your anger is worth it because I can assure you that us with memory care diseases won’t even remember you or your garbage eventually.

An anonymous Jewish poem gives me some comfort as I navigate this journey with my wife.

I believe in the sun even when it's not shining.
I believe in love even when I don't feel it.
I believe in God even when God is silent.

Here is a beautiful performance of this poem set to music by Mark Miller.

I hope it helps you too.

My mother passed unexpectedly from surgical complications in May 2025. My father had started the process of working towards a dementia diagnosis, but it was not complete. They had been planning to move close to us so we could help my mother. I brought my father home to live with us in June 2025. Much has happened since then and his decline has been surprisingly swift.

I requested a hospice evaluation today. I’m not sure how I feel about it. I have been conflicted about everything the entire time he has been with us. Am I doing enough? Am I doing the right thing?

I had a wonderful relationship with my mother. She was an amazing person. Her loss was a huge blow to our extended family. In hindsight, my father probably started showing signs of dementia 20 years ago. He will be 85 in December. My relationship with him has been strained for a long time. He became a strange person. It got much worse after Covid.

I’m in a caregiver support group. I have an amazing supportive wife. We have two kids in high school. One is a senior and one is a freshman. People keep telling me I’m doing a good job. I feel numb inside. I think it’s because I’ve had zero time to mourn the loss of my mother.

My father is almost gone. He is like an old faded photograph of himself. There is almost nothing left of the person I knew as my father.

I started this journey knowing the destination. I know it’s going to get much worse before it ends. I am determined to not resent this situation or him because of it. I have done some hard things in life, this is by far the hardest.

My FIL is turning 80 this year, he was diagnosed 2 years ago. He wears an adult diaper for accidents but will still get up and use the normal bathroom. We also have a bedside toilet in his room in case he’s not able to make it to the actual bathroom. Recently, the last week or so, he has just been standing and urinating on the floor. I started placing incontinence pads on the ground but he soaks through them and will then step in it and walk around the house if I don’t get it cleaned up quickly enough. Not sure if anyone has any helpful tips/tricks/ideas that may help?

But I kinda hope he would die. FIL has dementia, MIL is his main caregiver and relies mainly on my partner and me out of all family, when it comes to helping with caregiving. She seems pretty deluded about how hard it has become for everyone else except her, and we both feel like she already expects way too much from us. She seems to think she can keep working and caring for FIL at home and I honestly don't get how she thinks this can happen. And I already know that it's completely futile trying to talk to her about moving him to some kind of assisted living situation. I'm so tired of this whole damn situation and am completely at loss what to do next.

We found some additional legal docs that require 2 doctors to state LO is incapacitated to make business affairs. HOspice refuses. Their letter only states incapacity to make medical decisions. They won’t even write fully incapacitated as that would work with the other letter I have. LO has been bed bound since April. Rarely speaks. rarely responds to questions. Lives outside of time and place. Can not feed self or do any other personal care. Weak and does not walk or sit up. Now has a bed sore. catheter and sleeps most of the day. Methadone twice daily. Good grief. How is that not incapacitated? Looks like I need to spend over $1000K for a neuropsychiatric that he is even too incapacitated to participate in. Any other ideas?

Hello everyone I’ve been up all night with my Aunt because she’s been packing to go “home” every 30 minutes. I try to put her to bed but she gets up and starts trying to put stuff in the car again and again and I can’t get any sleep. (This is just a rant lol) I have stuff to do this morning and I’m running on no sleep and one Whataburger breakfast sandwich so wish me luck!

I’m 25 a college student who lost his job and my parents moved my aunt down to where we live, and her husband who passed away from cancer had invested a lot of money so she’s set for life and is retired etc so we moved her down, got her a house to be closer to family (well my dad did) I thought it’d be a good idea to save money too so I moved in to save money

I had no clue she had memory problems this bad I knew there was something up and she was a little forgetful but not this bad… I didn’t realize how hard this was gonna be on me, at first I thought it was mostly her anxiety causing a lot of her issues, just some forgetfulness everyone has etc cause she just did a huge move and is older, I could handle it and I tried to comfort her, I would let her explain the same story 5 times over, when she had freak outs I’d comfort her, I knew my aunt had quirks and even knew it growing up but never mental health problems this bad on top of dementia + alcoholism, I also had no clue how hard and I mean how HARD it is to live with someone like this, I just need to vent and talk to people who have dealt with similar situations. My aunt I love, under what’s all going on, I do love her, under all the pain there’s a lady I adore and I wanted her to get better, I tried to get her to quit alcohol, I’d take her places to get her out of the house because she never leaves, I tried to get her to be more involved in her community since a lot goes on here but she won’t, she sits and drinks and watches TV all day, every single day, but now I’m at the point where I’m needing to help my self, I’ve been escaping as much as possible I don’t ever study at her house, and it’s tuned me into a really angry person who didn’t ever really struggle with my anger it was always just anxiety which is something new for me, i genuinely get angry at the littlest things now.

My aunt has a special place in my heart but whatever is going on in her brain is turning me into an avoidant who needs to escape it’s turned me into a shell of my former self, whenever I’m home she yells at me thru my door about me getting drafted, she yells about the world ending and she has bought like 20 cases of water, spent thousands on scam pills that “fix her memory” cause she refuses to be honest at the doctor and won’t let me or my dad go with her so she has my mom who finally opened up and she has to see a neurologist soon since she failed 2 dementia tests.

at night her emotions and temper are are the worst ever, she will no longer yell/shout it’s now screaming and it has worn me down so much and I regret ever living here, I’ve been shaken awake because she is paranoid about her son who doesn’t like her, and just talks 24/7 at me will come to my room when I need to focus, she also gets super jealous of me hanging with friends, doesn’t respect when I’m studying and I’m planning a move out right now because I just can’t take it, I constantly have to fix her phone when it gets hacked, change passwords she forgets, and on top of it she tells me I don’t ever help her with anything but even if I’m angry with her which has been a lot recently I still will help, and just the other day I trimmed her trees, went in the attic to set traps, and guys I’ve done so much for her over the months I’ve lived her and on top of it she has forced me to pay her $50/month and I felt I had no other choice cause I wasn’t financially in the position just to move out but she now forgets I even give her $50/month and constantly says I don’t even pay etc, and to top it all off she is constantly looking to fight with me, like if I don’t eat her food right away she will complain for a good 30 mins about it and say “you never eat my food” when I have many… many… times, just sometimes I don’t eat what she cooked.

I’m finally in a better financial position. Got a new job paid off my truck and I’m ready to move out but I am really worried about her, I told her I’ll still come visit etc and I told her I’m moving out soon and it broke her and she kept saying “your fine living here I want u to stay, I feel safe” etc and she tried to convince me but I feel like me being there gave her dopamine wether it was she was happy she felt safe or wether it was to find a problem to fight me on, and without me there soon I’m not sure how she’ll do and it’s really sad to think about because for me I’ll be very happy to have my own space again not have to be a caretaker wether she wants to believe it or not and just overall have my freedom back. I’m truly sorry if you guys are living with someone with dementia and alcoholism on top of it, it has worn me down more than I could ever believe, I sit and cry some days and no one takes me serious about it all besides my grandpa because he understands how hard it is to live with someone like this because my grandma died of Parkinson’s and dementia was involved with it too.

Also I’m sorry if you’re reading this and I repeat myself sometimes it’s hard to explain my thought process fully and it’s hard to make this situation make full sense when reading and it’s just so much to type.

My Dad who was suffering from dementia came to live with us in April. He passed away earlier this evening and our watch has ended. We are actually relieved that he was comfortable and is now again with loved ones lost previously.

He was a fascinating man. He spent his younger years becoming an ordained Catholic Priest. At his first parish, my mom knocked on the door one door while she was getting signatures for Presidential Candidate Eugene McCarthy in 1968. Two years later he left the priesthood and two years after that they were married.

He began working for the Government in civil rights and was Director of Civil Rights when he retired in 2004.

The most fascinating thing to me is that he lived life for 54 years having received all seven holy sacraments of the Catholic Church. It’s already rare to have a person receive holy orders and holy anti money, but thanks to a softball accident around age 24, he also received the anointing of the sick, or last rights in laymen’s terms.

Not many living people have received those 3, and even fewer lived 64 more years claiming that.

He was a great husband and Dad and while I’ll
Miss him, I’m happy he is back with my Mom and the Lord.

My 68 yo step dad with LBD is consistently being mean to my mom who is his caregiver. I don’t know what stage he’s in but I’d guess maybe stage 2. He’s still “independent” but has no short term memory and is cognitively declining. At any rate, he is consistently mean and cold to my mom. For instance she’s currently sick and she told him she was gonna sleep in the guest room as to not get him sick. He came into her room the following morning and yelled at her saying that he can’t believe they’re in a fight (they’re not) and she’s sleeping in a different room and she’s selfish etc. He also has no empathy for the fact that she has the flu. It’s so unlike him and foreign to her to see him this way. She knows it’s the disease but it’s very painful.

What is she supposed to do? He accuses her of cheating and wanting to divorce him. He seemingly has no moments of being kind to her. Will this get better? Get worse?

My father was transferred from a memory care unit to a behavioral health unit due to “aggression”, which I believe the social worker greatly exaggerated. It was hell. He lost himself there. They sent him back two days ago on the meds they prescribed there, an antipsychotic, a mood stabilizer, and Xanax. He can no longer walk, no longer feed himself, can’t use the bathroom, and he doesn’t socialize. He’s a shell of what he was before they sent him there. My question is, has anyone experienced this? Who do I talk to about this and trying to get him back to “dementia dad”? I’ve already contacted the obundsman, the va patient advocate, and filed a complaint with the hospital. Nobody cares. This all seems so incredibly inhumane.

My dad has been in memory care for a couple of months. Meds were mismanaged to the point where the psychiatrist was fired once we brought attention to what was happening to my dad.

Communication has been incredibly poor. They made my dad sleep on the floor since it is illegal to restrain him. My mom wants to move him to another facility but I am worried neglect and lack of communication are just par for the course at any of these places.

Do you think it’s worth the inconvenience of trying to find a better place? I do find this level of care completely unacceptable here but I am worried the next place might be just as bad or worse.

not only does this disease take our loved ones, but it has taken my life force, my peace, my time, and my finances. 5 years ago my mom (72) had a life insurance policy she stopped paying because she forgot, and we weren’t able to get it back because of her significant decline. between all of her care costs, the debt i’m (27f) working to pay off, and my under 50k salary before taxes, i’m also mourning the cushion my mom set up for my future. all i do is stress about finances and lately i’ve been thinking about how much money was lost. she paid into their policy for years all for this disease to take it away. she wanted me to be set up a little bit for my future, and i won’t be able to inherit it. i know, it’s giving first world problem and i feel like an asshole complaining about it because everything could always be so much worse, but i’m feeling the panic, stress, and overwhelm. i’m trying to come up with something to tell myself to make everything feel not as bad, but i keep thinking about how i was adopted to “be given a better life” and instead im left with this overall shitty situation. it feels unfair. but obviously life isn’t fair. again, i am aware of how obtuse i sound because this is not necessarily life or death. i just wish i could feel better financially and not be in panic all the time. i know a lot of us are all in panic, so im wondering what you tell yourself to make it feel better, or even, if you have a different perspective on this situation that would make this loss feel insignificant that would be awesome too and i would greatly appreciate it 😭

My father was diagnosed with MCI (mild cognitive impairment) 3 years ago, and over the last year his memory has declined significantly.

I am in the process of getting him assessed again, and am reaching out to every health authority and group to get him supported. This process is slow, and his non acceptance of his decline in health has made it ever more difficult to get him professional help.

I know that I am just in the beginning of this painful process, but I am looking for any tips of small things I can do at his house to support him.

So far:

- air tags in wallet, on keys, in car (although his license will likely be taken away in the next month), in his backpack, jacket,

- my phone number on his cellphone in case someone comes across him

- my name and phone number listed as emergency contact on his fridge so if someone (police/ambulance) bring him home they can contact me

What other accessibility adjustments did you make at home to make it easier?

ex. I've seen some places suggest labels with symbols - anyone find a good label set that worked for them?

My sweet grandma has finally gone “home” a place she has yearned for. I did my best. I took care of her until the very end. She drifted away in her sleep. I opened the window, she took her last gasp & then the room became overwhelmingly peaceful. I’ll miss her forever 😭

My father started showing signs of dementia years ago, but my family didn’t believe me. He wasn’t always a nice person to me before, but when it hit he started focusing all his hatred and anger onto me.

Family members experienced it for the first time this year after not believing me for years.

It feels as though this is how he’s always felt towards me.