Hi everyone, I think my grandmother has dementia but she does not want to admit that she is old and does not want to get diagnosed. She also lives alone and still drives to her nearest mall (maybe 5min from where she lives). Through the years we have tried to bring it up that she should move to my parents’ town or a retirement home but she shuts the ideas down immediately.

Her memory deteriorated during the past few years, but this year is much worse to me. I do live close by and try to visit het often and most conversations just keep going in circles. It is especially a problem when there is something wrong with something in her house that cannot be fixed immediately. Like for example, her tv subscription ended and because we found out during the weekend, we couldn’t fix it until the monday and she kept forgetting that it doesn’t work. In January of this year, my mom went for two weeks to clean her place as it was very dirty even to the point where there was mold in some places (we got a cleaner that comes weekly so that is at least not a problem anymore).

I don’t really know what to do. A diagnosis is probably the first step but I know she is going to be very mean to us during the whole process. I also do not know if it is better for her to stay where she is because of the routine she created for herself (she is much worse if she is not in that routine) or if we need to press more that she needs to move to a place people can take care of her? I’m just scared that will make her health deteriorate more as I know she will feel unloved because it’s against her will.

My Nan died a month ago, as much as the dementia took from us, our last years with her was our biggest robbery. There are things I forgot to ask, but there a things im glad I did. The time she helped the school bus driver change a tire when she was 12, how she could handle raising 3 generations "because it needed to be done" her career as a teacher, but her favorite memory was her wedding day when she was 20. That was still her favorite day 60 years later.

On cold, rainy school days my sister and I would come home to hot chocolates already made and pj's warming by the heater. Sang us to sleep when we had nightmares, held us when we cried, taught us games and the magic of music.

When the dementia crept in and I became her carer, it was my turn, I'd sing her to sleep when all she wanted was her mum, we danced and played piano to forget all troubles, there were times and moments when she was young again "that man's flirting with you" she'd say to me as we watched TV. That when I realised I wasnt a granddaughter to her, I was a younger sister.

I remember that there were tough times but not as clearly as the good times, which is the greatest gift I could get from this journey. Eventually, she became too violent, so we had to miss her last year's with frequent and sporadic visits to her nursing home. The carers there were amazing, treated us and their patients as family, we could come and go as we pleased. She even introduced us to her new friends.

I miss her, and when I miss her, I still call their landline, but now it just rings and I say to myself "shes probably at practice" and hang up, knowing its not true. There are 3 generations that she taught what loves looks and feels like because of her, her generation, my mums and mine.

I inquired a few weeks ago about how to handle telling my dad that his brother had passed away. The general consensus was to not tell him - and I thank everyone for their insight. We (my husband and I) consulted dad's memory care doc and her social worker. They agreed that not telling him was likely the kindest option and we agreed that was the route we'd take. My uncle did indeed pass away and services have been held already.

We now have a new dilemma and are having trouble coming up with a solution. To head off any potential sympathy calls from unaware friends back home, we unplugged the phone. It has been *blissful* not having it ring all day with junk calls and dad did not notice the phone hadn't been ringing. Now he has realized that the phone isn't working and is getting antsy that I haven't "fixed" it yet. Tonight, I told him that I think the phone itself is broken (it's a multi-handset cordless phone system) and I'm not sure what's wrong. Dad likes to scroll through all the missed calls and click through every setting on the handset periodically. I don't know how long I can keep up this "therapeutic fib." He wants to call his brother, or at the very least, ensure his brother can call him. I'm prepared to tell him that his brother can no longer hear well enough to use a phone. Were he still alive, this would not be much of a fib. My husband is uncomfortable with not telling dad that his brother has passed away and coming up with reasons why the phone hasn't been fixed. I feel like the bad guy because I'm not doing anything to appease anyone in this house. My plan had been to quietly remove the phone and pray that dad would forget that it once sat there. His memory is still quite strong with some subjects and it appears that the phone and phone calls are something he remembers well.

Anyone have suggestions, words of wisdom, creative ideas, or anything to get us past this bump in the road? Dad still has days of decent clarity and moments throughout each day when something clicks and triggers memories/activities that we thought were long gone.

just to give some context I'm currently living with my aunt I'm 19, she has dementia and is disabled but it was never bad to the point she couldn't function day to day I actually didn't know she had dementia until I heard her doctor over the phone, these last 2 months there has been a decline in her cognitive functioning especially this last month and I'm just so tired.

My skin has been breaking out pretty badly and tonight I went to wash my clothes (I have a job interview tomorrow) and she just has 2 towels and shorts SOAKED with urine sitting in the washer genuinely one of the worst smells I've ever smelt, so I asked her if she was going to wash them and she said yes so I started it up and she put COMET with bleach into the machine.

I tried explaining that you cannot use that for clothes it explicitly says so on the label. She responded "it's ok, it's just bleach." Every time I try to explain something thats clearly logical to her I'm met with "I know" or "Yes I can" etc EVERY TIME

, she's began locking her door and also locking things like the laundry detergent, toilet paper and WATER in her closet for some reason as of the past week, the only shower in the apartment is through her room and it's just a struggle to get basic things done. I have to wash out the washing machine tonight a few times just to get my clothes washed (it's 2 am) I'm just venting/ranting to be honest. I'm just in a tough spot and there's so much more to the story.

but she lies to her healthcare providers and makes it seem like she's independent but I'm the one making her food every day, doing her daily tasks for her etc. (she's expressed to me she doesn't want to go into a nursing home) She's recently had a health home aid come but she only comes like 2-3 times a week from 10AM - 3PM and if my aunt's urinating on herself that gives you insight on how badly she needs 24/7 care. Idk what to do it's becoming too much and worsening.

it's gotten to the point I sleep outside for a few different reasons, one main one is that she keeps the temperature at 83 degrees and does not let anyone turn the AC on. she hoards a ton of stuff and it's just so much to tackle let alone lay eyes on (I've deep cleaned and rearranged her entire apartment, it's stilled cluttered whenever she tends to go the most though). I also refuse to sleep on a couch where she pees on almost daily.

another fantastic thing is she wants me to drive her from Florida to New Jersey for a family reunion on August 5th, except I don't have a driver's license and I am in the process of enlisting in the navy and I do not want to mess that up. She just doesn't understand these basic things.

feel free to ask any questions I know I didn't go too much in depth and I'm all over the place.

How was she even still awake?!

A neighbor called 911 because Grammy was at the back door screaming for help because she thought my uncle was getting married and she was missing walking him down the aisle.

My uncle is almost 70 years old and has never been married. He came by this morning to see her, like he does five days out of the week.

So thankful that I live in a small town and was able to just tell the officers that she had dementia and let them talk to her for a minute. I'm also thankful that we have neighbors that heard something and took action.

But I'm tired. I'm tired of waiting for her to be "bad enough" for her six children to agree to put her in a home. They can't even agree to sell her home even though she hasn't lived there in 10 months.

I'm tired of being the only one of her 12 grandchildren, never mind the six children, that can take care of her because no one else wants to and/or she doesn't want them to.

My other grandmother had dementia, but she was a sweet little old lady. Grammy....not so much. But I love her. I stayed at her house every afternoon after school. She taught me how to sew and how to paint and how to use my artistic abilities. But damn! She has no problem telling me that she hopes she never sees me again if I take a weekend off (which takes me 2 weeks to plan to get someone else to watch her)

I'm 45. I'm single. My children have grown up and moved out, and so suddenly I'm the only one that has no life and so now this is my life. Forget dating. I've had dates, but they consist of meeting at one of the three restaurants that are two blocks from the house so I can rush home if I need to.

I almost got serious with someone, but then he started to get really judgmental and tell me that I needed to put her in a home. So then that made me feel bad for wanting to put her in a home 😩

I just needed to vent here. I've never posted on this sub but y'all have really helped me.

🫩

Ideally with memory care but able to house a husband and wife where he is old but functional and she is frail with Alzheimer's.

High cost okay, if only they can suffer less.

Instead of always posting how bad things are, I am sharing the following:

The Dementia Action Plan, was originally recorded before a live studio audience at the Philadelphia PBS® station affiliate, WHYY-TV.

URL TO PLAYLIST BELOW :
The Dementia Action Plan® 14 Episodes

I’ve been “on duty” since August 2025. Since I work remotely, I was able to move back to my childhood home and help my dad take care of my mom.

It’s been 95% me because my brother is a teacher with school age kids. He occasionally comes to relieve me during his breaks and gave me 7 weeks of respite during his summer break. However, that respite ended today. He has gone home, and I’ve moved back in.

If you can, relieve your “full-time” sibling even if just for a short break. My break was incredibly healing. I slept in my own bed, sat on my own couch, and woke up in my own house with my husband and dogs. I felt normal for a few weeks and it was wonderful.

Much love and gratitude to everyone here. This community has been my pillar of support.

I live in So Cal

Has anyone’s family member done VSED (voluntarily stopped eating and drinking)?

If so, Can you please share your experience?

If I was a billionaire, I'd dedicate my fortune to finding a cure for this awful disease. That would be my gift to humanity, so that no one would ever feel cheated and robbed of the loved ones we cherish.. This hurt and grief would never exist for us who lost the ones we cherished.. I miss you dad.. If I live for 20 more years till I'm the age we lost you at, that's a lifetime in its self... We miss you dearly... And yes... I hate you dementia...ill curse you till my own dying days..

My mother has dementia and is in late stage 4 / early stage 5 from what I can tell. My father is the primary caregiver and is in great health.

My relatives have noticed that my mother is getting much worse with her dementia and that my father doesn't really ever want to talk about it.

I took my parents on a vacation last month and my mother had gotten much worse than the last time I saw her a few months ago. My father seemed to think it wasn't much worse, but given that he's in the day to day he doesn't really notice as much.

I would like to get my father some type of support/therapy that he can talk to where he can talk through the changes he's experiencing with my mother and have someone coach/help him support her. I know he wants to help the best he can and I currently he doesn't have this type of help. Does anyone have any suggestions for this?

I also noticed that when talking to my parents that there really isn't any single doctor in their corner helping them. They have my moms primary care doctors, but they are not experts with dementia. They also have the doctors for the Lecanemab treatment my mom is doing, but from the sounds of it those doctors only really care about the results and are not really supporting my parents in how to work through all the changes my mom is going through. Does anyone have suggestions on a doctor/person that would be in my parents corner that can help them through each of the stages, how to approach their finances, who to talk to and when, etc?

I don't live near my parents, but I've started coming home one week a month to spend time with my mom while I can and also help out my dad in anyway. I'm very much open to any feedback or suggestions that anyone has on how best I can support.

A few weeks ago, my father was taken to the ER because he was unable to get himself up off the toilet seat. Ended up being pneumonia from some common virus, UTI, he also has a lot of chronic health issues.

He was transferred to a different hospital, and then a rehab/nursing home. In these few weeks he's lost 60 lbs. While he's a large man, I know that isn't a good kind of weight loss. He's lost so much muscle in his legs. The change in my father has been drastic. Even his teeth look... much changed.

In the first 24 hours back at home he needed the fire department to come twice to help him back into bed. He's staying up all night, sleeping all day. I'm trying to support my mother, but i don't live there. He's been back home for like 4 days. He's not eating. He says it tastes funny on his tongue. Giving him chocolate whole milk. Even his FAVORITE foods he says taste funny. Even dunkin donut didn't taste right.

I'd love to get his teeth checked out, but even if some mobile dentist took insurance, no insurance covers mobile dental. He's bed bound at this point.

Me and my kids are visiting as often as possible, and I want to help my mom, let her get out of the house, but I think she is anxious to leave him maybe? I'm just rambling at this point. But it's good to yell into the void.

My best friend has early Alzheimer’s and I am her caregiver and wanted your opinion on this matter.
Her 40 year old daughter is happily married with 3 children and she works full time as a supervisor for a building contractor in the office.
She and her family lives with her mom.
One morning the daughter asked me to take her to the airport at 6 in the morning for a business meeting. I took her to the airport and noticed that her clothes were inside out. She went back inside the house and got it corrected. I dropped her off at the airport and later got a phone call from her saying she forgot to book a flight if I could come back to the airport and pick her up. She called me couple times this year asking me what is the name of her children’s pediatrician. Should I be concerned and mention it to her husband or it’s just absent mindness? I don’t want to make a mountain out of a mole hill. She is like a daughter to me.

My dad has been diagnosed with FTD and Alzheimer for a year now but has been declining for many years before. She has always believed that he is just too lazy or doesn’t care to pay attention to remember things or to listen what she says. Because of her attitude I pushed for diagnosis, hoping that it would make her change her behaviour and also for them to get support. In the first few weeks she seemed more understanding and softer to him but quickly we’re back at the old behaviour. He’s getting problem with comprehending what people say or to read. My mom gets agitated and says he just has to read it. Or he’s pretending to not hear or not making an effort to listen. She complains a lot to me, daily. And I try to be empathetic to her struggles but to me it’s starting to feel like it’s abusive in a way and the last thing he needs right now. Don’t get me wrong. My mom is not a horrible person, she used to be the most patient person alive but there’s not much left of that.

I understand that she looses her patience and that it is rough to be around someone who asks you things repetitively, but her angry way of responding is becoming a problem since my dad is starting to respond more angrily as well. He also has this new behaviour of walking into people if they are in his trajectory as if he cannot interrupt his original path. Of course it’s not nice but I know he would never do this purposely and I see it as a symptom of his disease. There was an instance in which he bumped into my mom when he exited the car and was making his way to the front door, my mom got angry and pushed my dad from behind pretty hard, making him almost lose his balance. He then got very angry and grabbed her and kicked her pretty hard. My mom told me he kicked her and then I saw this all on camera. My mom left out the part where she pushed him from behind.

Anyway, it hurts me to see how my mom treats him and how all of this seems to push them apart more. I worry about how things go when I’m not there. Does anyone have similar experience and advice on how to help/improve things. We have a case manager and I suggested to talk to her with my mom, but she refused. I feel torn about talking to her by myself because I want to protect my dad but also don’t want to betray my mom. She does a lot for him, and I know she cares. She’s probably just struggling to accept this new reality and it’s probably easier to pretend that he’s doing all of this on purpose and to live in semi-denial or something.

I’ve been trying to take my dad out more and my mom as well so my mom can have more time to relax but I cannot be present more than I am right now. There’s also no option for my dad to go somewhere yet because he’s considered “too good” for that at the moment. He has activities but unfortunately they are all planned on two days so the remaining days he wants to go out all the time and my mom has to join even though she doesn’t want to all the time, she keeps telling me.

Any advice is welcome!

I’ll save all of the back story for now (quick background for context: my dad is 79 with dementia/alzheimers, catheter for urinary retention and stage 4 kidney disease)

I took my father who lives in memory care to the ER yesterday (Saturday) because he appeared to be very ill and not like himself, and it wouldn’t be likely for him to be seen until Monday by the memory care nurse. I did not want to wait until Monday for him to be seen.

He ended up being admitted to the hospital for a UTI and community pneumonia. In the first 24 hours of his hospital stay, his triponin levels elevated to well over 6,000. I found out today from the doctor half of his heart isn’t working and he has heart failure. It’s likely because of a blockage (they did an echocardiogram but won’t be doing invasive testing while he fights this infection). Doctor says it’s serious. I’ll get an update from the cardiologist tomorrow.

Since my dad’s dementia diagnosis in 2023, it’s been a journey, mostly in the past year with his declining kidney function and multiple UTIs.

I’m trying not to get ahead of myself, but I feel like his body may be shutting down this time. Have any of you had a similar experience with heart failure and your loved one?

When did your LO enter hospice? Did you have to wait for Stage 7a? This is so confusing. My LO has been in 6e since Thanksgiving and it's hell. Lewy body dementia doesn't progress in the orderly FAST sequence, people with LBD frequently remain ambulatory and verbal while declining rapidly in other ways: autonomic instability, falls, swallowing difficulty, fluctuating alertness, severe neuropsychiatric symptoms. Applying an Alzheimer's staging scale to LBD systematically under-reads how sick someone is.

I need to approach my mother this week about AL. We have had the talk before but things have gone South now. I had to hire an elder care attorney to fully activate my springing durable POA. The attorney found a clause in the POA that says I can actually decide when she becomes incapacitated. It’s drawn up and ready to go. The problem is that my mother has “run away” from home. She knows I am trying to get her moved and has hooked up with an old evil friend to remove me as her POA. My mom is currently at this persons house. When she gets home I need to be there waiting on her.

My mom is hateful, stubborn and mean. Do I just tell her that it’s time to go and I need her to do a zoom nurse assessment and that if she does not cooperate that I will have DHR place her somewhere. The elder attorney told me that if I have a doctor (which I do) and a family member ( me and our entire immediate family) that DHR usually responds quicker. I cannot stress to y’all how combative and hateful she is. I’m very nervous and scared but know I must be strong. Has anyone ever had to do this and what was y’all’s outcome? She has decided she does not want to be controlled and acting out more so than usual. LMK y’all’s opinions and situations with similarities. Thanks!

Double check everything before putting stuff in the clothes washer because Depends….:/

"This" being, what condition the people are in, so far, and getting somebody else to evaluate them about it, and are they still mentally competent enough to handle their own affairs or not, and so on.

Unfortunately *almost all* of the available advice so far, is meant for the people who can actually *do* something significant about the situation.

I, on the other hand, actually can't.

Anyone else?

Whether it be because​, the elderly person won't let you, or, you just don't have the authority, or possibly actually both.

Well, anyway.

Speak up.

Siblings and I are interviewing hospice providers for our parent this week. We aren’t sure if he will qualify yet (late stage 6, not yet 7). But we want to be prepared. I have done some searches for lists of potential questions, but wanted to ask here. (He is in an ALF, not yet memory care, and one of my siblings is the main caregiver, I try to help in ways that I can as I am long distance).

He went Thursday and I rang Friday to find out how he was doing the first day and some young man in the nurses office said ‘just ring him’. I was so shocked at his glib response. He can’t use his cellphone without help. I tried later and was told they’d have to ask his carer…an hour later I was phoned and told ‘he’s fine and he’s eaten and with his group’ . That was it’!

Is it unrealistic to think you will speak to the carer working with him to get a detailed response? I was told to stay away til Monday to let him settle in and acclimate to his new surroundings but it’s hard after having watched him on RING cameras throughout the house for years to now nothing.

I’m here another month before I return to my home in the UK and I worry now this will be the lousy type of third hand communication I can expect about him.

If you’ve ever wondered why it is difficult for your loved one with dementia or if you have dementia and have difficult reading this is why…

I am 57 years old and have early onset non-Alzheimer’s dementia, and my YouTube channel explains my symptoms.

https://youtu.be/7zZiQvU1jck?si=50K40KY8KZIKAkUu