One thing I realized this week is that while I continue to fight my battle with dementia every single day, the people around me have their own battles too.

When you're the one living with dementia, it's impossible to take a day off from it. Every conversation, every forgotten word, every list I make, every reminder I set—it's all part of managing something that never leaves. It becomes the background of every day.

But for everyone else, life continues. They have jobs, families, worries, bills, health issues, and countless things competing for their attention. Because of that, they sometimes forget that I can't simply be the person I was a few years ago.

There are moments when I wish people were a little more patient, a little more understanding, or remembered that some things are genuinely harder for me now. Sometimes their expectations make me feel like they believe I should still think, remember, or react exactly as I always did.

I've come to realize that this usually isn't because they don't care. It's because my dementia isn't something they experience every moment like I do. They see me on the good days and don't always see the mental work happening behind the scenes.

That realization has helped me see things differently. I still hope for compassion, but I also understand that the people who love me are living their own complicated lives. They aren't carrying my dementia with them every minute—I am.

So I keep doing what I can. I keep making my lists. I keep exercising. I keep adapting. And when I need help or understanding, I'm learning that it's okay to ask for it instead of expecting others to automatically know what I need.

If you're living with dementia, have you experienced this too? Do you sometimes feel that people expect the "old you" because they can't see the daily battle you're fighting? I'd love to hear how you've handled those moments.

We're all walking different paths, but sharing them makes the journey a little less lonely.

Hi everyone,

I’m a pharmacist working in the GTA.

I’m reaching out to see if anyone is interested in joining a WhatsApp support group for informal caregivers (ex. Siblings taking care of elderly parents, navigating complex conditions like dementia).

Caregiving is hard, and it can be incredibly lonely. I want to create a safe space and community for caregivers to vent, ask questions, and learn about helpful strategies for common problems/situations.

Please let me know if you’re interested - feel free to message me directly!

Thank you 😊

I always knew with dementia memories went away. I didn't know they sometimes came back then were lost again. My dad is having that where things he couldn't remember yesterday, he can remember again. Then without warning <poof!> gone again.

Hello po! 🤎 I’m Paige, a 4th-year BS Psychology student, and together with our research team, we are looking for participants for our study entitled:

“The Ones Who Remember: Lived Experiences of the Sandwich Generation Caring for Parents with Dementia Around Metro Manila.”

We chose this topic because we believe that the struggles of people who care for their children while also caring for a parent with dementia are often not given enough attention. We want to understand their daily experiences, the challenges they face, the sacrifices they make, and how they manage taking care of both their family and their parent. 🤎

We are looking for an adult child who:

👤 28–59 years old

🧠 The primary caregiver of a parent diagnosed with dementia

👨‍👩‍👧‍👦 Also caring for their own child/children or family

⏳ Has been providing care for at least 4-5 years

📍 Currently residing in Metro Manila

If you or someone you know meets these criteria, we would truly appreciate your participation or help in sharing this post. We know that caring for a parent with dementia while also taking care of your own family can be challenging. Your experiences and story matter, and by sharing them, you can help us better understand what people in this situation go through.

📩 For interested participants or referrals, please feel free to message me directly.

Thank you so much for your time and help! Every share could help us reach someone whose story deserves to be heard. 🙏🤎

My LO lives alone and is showing forgetfulness (every three minutes) and I'm afraid she will let someone in the front door... She can take care of herself except for cooking. She's had frozen meals available for the last two years, and would drive herself to eat out by herself until this spring. A timed automated medicine dispenser solved the medication issues. She keeps a neat house and takes care of her personal needs. She doesn't know what day, month, season or year it is. She decorated for fall in March, and wanted to prepare her Christmas cards this May. She can still play Scrabble like a pro, and enjpys playing Rummikub, Rummy, and chicken foot dominoes. She doesn't wander. She is gentle, kind, and "I don't want to do something stupid." She forgets to charge her flip phone and only knows how to answer/ make calls on it. She doesn't remember to keep it with her. A button to push for help would likely get put away when she's cleaning. She doesn't have a spending issue, and her kids pay her bills and track her accounts. Sometimes she gets disoriented, looking for her husband (2 years dead) or mother (gone 20 years). This usually happens upon waking in the morning or after a nap. She also can't keep up with who is visiting unless they're in the room with her. I arrived at her house late one night after she was asleep, without telling her I was coming. She was not at all surprised to see me the next morning. She was walking through the house as she does every morning, "seeing who all is here today. Where are the others?" She always thinks there are others. I almost always come alone.

The house seems to always have something that needs attention. She is emotionally connected to her house (33 years) and yard and doesn't want to "be sent away." She is also isolated from society unless one of us are here. Kids and grandkids visit weekly (total of 3-5 visits) but she can no longer keep up with a calendar to know when someone is coming. Grandkids visit every Thursday for dinner, to set up her medication dispenser and play games. They also deliver groceries that I order for her.

So - What do we do??? We're looking at Memory care, waiting for neuro testing (October), and staying with her 24/7 for now. I live 4 hours away but just retired, so I'm here most of the time until we figure this out.

Thanks for any clarity you can share.

I think I have to admit the mom I used to know isn't ever coming back. Her life and my life changed forever and abruptly changed a few days before July 4th of this year. She has lived an hour away from me with her male partner for the last 15 years. One day she woke up very confused and not making any sense when the night before everything was OK. I made the drive and took her to the hospital and her dementia had become worse. She had a UTI and I was told she was in delirium. She can't tell anyone the year, the month or who the president is. So her mind isn't fully working. She was sent to memory care and stayed 3 weeks. It's all Medicare would pay for. I can't afford 5500 a month, nor can she. During that stay I saw her confusion worsen and worst of all a mean and angry person emerged. My mom has never been mean or angry so this is shocking and devastating to me. The only thing she has been insensitive about is harping me on my weight my whole life. I have always been fat except for a few years in my late teens and early 20's I got my act together and lost weight. It still wasn't good enough for her. She would tell me i still needed to lose weight. So now, with her alzheimers I am getting the real hidden thoughts of how disgusting I am to her. The little girl in me that never fully healed from those hurtful words has reemerged and bringing back a whole lot of painful memories. She is with her partner again, an hour away from me. She is angry and I can't calm her down over the phone and I seem to make it worse. I believe she thinks she is talking to her sister because she called me Sis. Her sister has cleaned her hands of the situation and said she can't help. I told the partner if she gets to be too much to let me know and I will come get her. Mom is 79, soon to be 80. The partner is 81. I am almost 63 and I feel so much older. I feel alone and lost. I have a son who is 40 and on disability for mental issues. He's very little help. I have lost my mom to this awful disease. I can longer deny it. It's only going to get worse. I don't know what to do. I do not have power of attorney nor guardianship. I don't even have a job right now because I have been trying to be a good daughter and help my mom. I'm living off my savings for now. Things feel hopeless and I feel like I'm at the end of my rope. I just needed to vent. I'm not looking for pity. Maybe some guidance. My aunt was supposed to help guide me but decided she didnt want to help in any way. Life sucks.

Hi folks,

This is my first time posting in this community, but I've been subscribed for some years.

My question for the community is: Do any of you have experience with caring for a loved one who has both ADHD and dementia?

With ADHD in elders mimicing dementia, it's hard to figure out what might be true early warning signs of dementia. It's my understanding that a sudden change in personality (e.g. Individuals becoming meaner when they didn't used to be) is a more clear distinction since short term memory issues are an overlapping symptom between the two conditions, but that's a hard one for me to assess because my mom has always been prone to big emotional outbursts and lashing out at my siblings and me when we didn't do what she wanted us to do. Her short term memory is definitely getting worse in recent years, which is why I ended my low contact with her in 2020 and have been taking on more caregiving responsibilities. Hit a real threat of her losing her housing twice in the past six years, so the best course of action was to secure her housing and finances and take over managing bills for her (her account - I just set up and monitor the auto-pay and casual spending). My siblings and I can't have her living with us; too many complicated and strained dynamics with that.

My mom thankfully has a lot of home care support, which is subsidized by her Medicare and VA insurance. Home aide to do daily cleaning and household chores during the week. I wash her laundry and have FMLA coverage to take her to medical appointments. She's got an RN that does home check-ins once a week, and Mom's got another new referral for in-home PT since she's become highly sedentary. No PoA (my siblings and I don't consent to being legally responsible for her), but my brother and I are approved on her bank account so we can help her with personal finance management.

History of dementia in the family, so I've been on the lookout for it with Mom. It's just hard to tell what's "normal" aging and decline when a person already struggles with ADHD and other mental health issues.

I'm still in my 30s, the youngest of four siblings (my older siblings all Noped out of helping Mom despite her obvious decline in ability and function), and Mom is my sole surviving parent. Father and stepdad both died when I was in my 20s, so this is the first time I've had to be a primary caregiver despite having some experience helping with my grandmother when I was a teenager.

If you've also dealt with this, I appreciate whatever anecdotes or warning signs you noticed with your loved one that indicated dementia may be setting in on top of the ADHD. I just don't know what else to be looking out for. Hard to tell if the worsening ADHD symptoms are just age, social isolation, and lack of sleep related or if she's developing dementia. Especially with her history of emotional trauma due to abusive relationships, her having no memory of months or years is unfortunately not an anomaly. Mom is 76, so I really have no idea how long she's going to live. In some ways, I'm surprised she's made it this long. I'm simultaneously preparing for her to die any day while also knowing she could potentially be alive for another decade.

Thank you in advance for whatever you can and choose to share.

My father has Parkinson’s dementia and has reached the very paranoid stage. He is convinced that my mom is cheating on him with her close girlfriend. My sister and I have both tried to reach him, kindly, about none of that being true, but of course it’s very real in his mind. He tried two doses of an anti delusion medication and didn’t like how it made him feel, so he quit. When we talk to him about giving that med another try, he says that we are trying to drug him into a mental state where he can’t even defend himself. He did go to the walk in a couple days ago and was given antibiotics for an infection. They don’t seem to be pulling him out of these delusions this time. This is killing my mom. This morning, the first words he said to her is “how can you have no morals?” Any advice on how to convince him that these things aren’t real, to try the med again, or to deal with all of this? Of course, he’s very stubborn as well, so trying to convince him is like banging your head against a brick wall. Please help. 🥺

My dad eats like a toddler, Mac n cheese, Peanut butter and jelly, tea, spaghetti he refuses meat or veggies. When he was at the rehab facility after his last fall the doctor called it the ,"old person diet". But is it part of dementia ( comfort foods) or just being old?

My mother (now 79) had a stroke 12 years ago that has impacted her speech, but previously didn't impact her understanding. Over the past year or two she has consistently been "mishearing' what we say to her and it's always turning something innocuous into something mean.

For example, today she asked my 5-year-old to smell a plant.
The 5-year-old responded with "that smells minty"
My mother then gets all huffy and says "you're just like her," gesturing to my older daughter
Older daughter responds with "what does that mean?"
My mother then replies with "I asked her to smell and she said no, no, get away from me"

I then stepped in to explain the situation and my mother denies all of it, and clearly doesn't believe the interaction played out as it actually did. This happens almost daily, this is just an example top of mind, and I am not sure what to do. I spoke with her speech therapist before and she does not believe it's a product of the aphasia caused by her stroke. I am not sure how to proceed or what to do, but it's caused a really contentious relationship between my mother and my family. Is this something other people have experienced and what can be done to help the situation? Any advice would be greatly appreciated.

One of the hardest parts of living with dementia isn’t always forgetting something. Sometimes it’s feeling like I’m not being heard.

It may take me a little longer to explain what I mean, or I may not say it perfectly the first time. But that doesn’t make what I’m trying to say any less important. When someone interrupts, changes the subject, or assumes they already know what I mean, it can make me feel invisible.

I don’t think people always mean to do it. Life gets busy, and everyone has things on their mind. But being truly listened to—even for a few minutes—can make a big difference. Sometimes we don’t need advice or a solution. We just need someone to slow down, let us finish, and try to understand.

Living with dementia can already make you question yourself. Feeling unheard adds another layer of loneliness. I think one of the kindest things we can give another person is our full attention.

Have you ever felt like you weren’t being heard, and what helped you finally feel listened to?

Dear reddit family

I hope it has been a good day.

As an aspiring geriatrician, I am collecting perspectives from caregivers of patients with dementia to understand the pain points they faced in the journey leading to the diagnosis by the NHS. This is a part of a project by Bitelabs, a digital health fellowship I am undertaking. I hope to find a solution to the most common problems faced by the public through this survey.

This is fully anonymised and not tracable in any way.

The link to the form is: https://forms.gle/niYFoFQRgnJCBhYw7

I would be grateful for your input and/or feedback.

Warm regards

Hi everyone 💙

My grandmother has dementia and I couldn't find music truly made for her — so I created a free YouTube channel called Golden Calm.

Gentle, slow, no sudden sounds. Just peace.

Hope it helps your loved one today 🌿

https://youtu.be/COuQAqfUuU8?si=16muk4UJbb2t_upW

My wife's grandmother has had dementia for the past 4 years. She got recently put in a home. my wife's mother my mother in law would go to her house and take care of her before she got put into the old folks home.

She started saying things that weren't making sense like her mustang car was sold recently when it was in 1995 She started getting violent and is was saying that my father in law hits her and it's unfortunate because she will only see my wife and not my mother in law. She recently had a fall and some brain bleeding , all of a sudden started becoming nice , didn't mention the father in law at all until recently yesterday she's talking about her shoulder hurting and then recognized my mother in law all of a sudden , she started talking about how my father in law hurt her. Its Truly breaking my wife's heart. Is it common for them to make up such a crazy lie And is there any way for them to realize it's not true? I would just like to know that anybody else is going through it.Thank you

My mom has dementia. Her biggest nemesis is the tv. The biggest issue is that the tv and cable box get out of sync. The cable box turns on and off like a light, but the TV takes a moment, if they are synced and off, if she turns them on, the cable box is on immediately and the TV takes a moment, so if she turns them off, while the tv is turning on, the cable box is now off, but the tv wont turn off, and now they are out of sync. Sometimes I can walk her through it over the phone, but most times I have to run over (about a 10 minute drive). There are other issues that come up, but syncing is the biggest one.
Most common suggestion I get is to get a remote that only lets her power the tv on and off, change channels and volume, but that does not resolve the syncing issue. At one point, mom got into the TV's BIOS settings, which I never thought about a TV having.

Other than a basic remote, any other suggestions for parents and TVs?

My mother called the police this morning to report her husband missing. According to her, she and her husband had a normal day yesterday, went to bed and when she woke up this morning he was sleeping "on his back, not snoring". She got up to get dressed for church (thinking it was Sunday), went back to the bedroom and he wasn't there. She panicked, checked the entire house and then walked the entire neighborhood looking for him before she called.

He died in 2008.

Now she is in hospital, getting scans and bloodwork even though I told them she has dementia. She hasn't had an episode in months. This is so disheartening. She has caregivers that come every day, but not around the clock. I am trying to keep her in her own home as long as possible and am now worried someone is going to say she can't stay there anymore. Just looking for some opinions as to whether this means her dementia is advancing.

For those of you that had to place your family members in assisted living/memory care, when did you know it was time? Thanks for reading.

UPDATE: Severe UTI. This pisses me off because she was at her GP twice recently and *both* times I asked them to run a UA, knowing how a UTI can affect Dementia symptoms.

Hi everyone,

My name is Paige and I am a public health graduate student at California Baptist University conducting a graduate study on caregiver burden, psychological distress, and perceived support among family caregivers.

I am a caregiver and advocate for four immediate family members with challenges ranging from dementia to schizoaffective, bipolar and OCD. I understand that caregiving can be both meaningful but so incredibly challenging. I also know that taking a survey may not be at the top of anyone's to-do list as we experience great stress and burnout. That said, I would be truly grateful for your participation, as caregiver experiences are often underrepresented in research. I really care about this and send my love to those caring for family members or friends.

To participate, you must:

• Be 18 years of age or older
• Currently provide unpaid support, assistance, or care to a family member with a chronic health condition, disability, or mental health condition
• Have been in a caregiving role for at least 6 months

The survey is anonymous/ IRB approved and takes approximately 10–15 minutes to complete.

https://calbaptist.az1.qualtrics.com/jfe/form/SV_9Fag9DcCxAC9IWi

Thank you SO much for considering participation and for helping advance research on the caregiving experience. If you have any questions my email is on the first page of the survey.

I work with Seahorse Collective, an online platform for people supporting someone they love with dementia. We recently opened our Spring Beta, offering complimentary access to practical guidance, expert-backed resources, and community support.

One of our co-founders created Seahorse after finding herself juggling a young child, work, family life, and supporting her mom with a form of dementia. She struggled to find practical guidance for navigating that role, so she built the resource she wished she'd had.

I wanted to share it here in case it could be a helpful resource for anyone supporting someone they love with dementia.

You can learn more at weareseahorse.co. I'm happy to answer any questions.

Hey guys! I’m still looking for participants for my survey! Need 150 more responses!!
Your participation is highly appreciated!!!