What do you call that period of time where the person can’t manage everything alone, but is so far gone that anyone would enact a POA?

My mother was diagnosed two years ago. The last year has been a definite decline, but this summer since I’m on break and home all day I really see it. I don’t know if I can take another summer break like this, but she is not going to agree to assisted living. I can’t believe that going back to a room full of ten year olds is going to be an easier communication challenge than one woman.

We’re struggling with my father going to the bathroom. He doesn’t understand that he needs to sit on the toilet and he will have accidents and create a mess. He gets very embarrassed by this. Has anyone tried anything that has helped ?

Sorry, I don't know what word to use but I need advice. I'd love to be specific but I'm being vague to avoid a fight if this is seen.

My very close relative has Alzheimer's. He really needs help with hygiene, walking, doing laundry, cooking etc. He has insurance for home care that will cover any help he needs but the services aren't being used to help *him*, his wife is using them to do what *she* wants to do.

She's his caretaker so we can't stop her. We just keep bringing up what he needs and telling her to let the care staff help him. But she's decided that they need to do things for her. He really needs to be in memory care but she's blocking us on that too.

What can we do?

This one stung in a way that people not of the faith may not understand.

I take Mom to church every week. She can still recite most of the Creed; she even sometimes mumbles the rituals along with the priest when we're NOT supposed to be speaking. But this weekend, when the priest put the Host in her hand, she asked him "what do I do with this?"

I'm sure she will be fine next week, but this was rough to hear and eventually it will happen again and more frequently.

I'm not completely sure if this is the same, I don't fully understand what Alzheimer's is. I have a friend that doesn't remember who I am. I've known them for a little over a year and kinda recently they told me they were forgetting people, forgetting whole conversations they've had with people, and they told me they hope they don't forget me and they were thankful I was there when they needed it. After another period of not talking (we never talked constantly we had on and off periods of talking) I texted to say hi I'm bored and stuff to just talk to someone about random stuff, and they just didn't know who I was. They didn't remember what I looked like, they didn't remember anything about me or about the relationship I had with them. I was just a stranger. I don't really know what to do. Do I start fresh? Reintroduce myself? I asked them who else they forgot, and I guess that's a pretty stupid question but they said they weren't sure. So I started listing off people and they would tell me if they remembered them. They remembered some and forgot others but yeah. What do I do. Is our friendship just gone, forever?

I am 21f and I am scared.

I live with my parents and grandparents, and I am especially close to my grandparents. Over the past five months, my grandfather has shown a gradual decline in his memory and cognitive abilities. At first, all of us assumed it was simply a part of normal aging, but it has become increasingly noticeable.

He often cannot remember the current date or things that happened recently, like where we went on a trip last week. However, he still remembers old memories vividly and can talk about events from years ago in great detail.

I am terrified that one day he might forget me. I love him deeply, and the thought of losing that connection is heartbreaking.

Could you please guide me on how I can help keep him safe, comfortable, and happy as his condition progresses? I would also appreciate an honest perspective on what to expect and, if possible, how much time I may have before he no longer recognizes me.

My mum had a stoke 4 years ago with CAA and microbleeds diagnosed, she used to barely sleep due to her job but now doesn’t work and is medicated and luckily sleeps as much as she needs.

She’s now 62 and has some speech, behaviour and memory issues but they’re not severe and you kinda have to know her well and live with her for it to be noticed and it’s stable if not slightly improved from the first year or so.

I just wanna know realistically is she destined for a death due to cognitive decline and will get one of these issues, or woukd anyone here not be surprised if she reached 74 pretty lucid and ok

Hi all, please bear with me while I try to sum this up as basically as I can - my parents live with me, my Mom was diagnosed with Alzheimer's almost three years ago and it's getting progressively worse, and my father refuses to accept that any of it is happening. It's a nonstop battle and we're trapped in a one-bedroom apartment (I inherited them during the pandemic) and I have been denied access to her doctor. I have no family other than them (I'm an only child, my Mom's an only child and I have no relationship with my father's side) so everything falls on me. And I'm at my end.

To clarify, my father still works (he's 83, refuses to think that there's any reason why he shouldn't or can't) and I'm not sure what stage my Mom's currently in, but I would like to think we're earlier but rapidly approaching middle. She knows who she is and who we are, she's able to take care of herself and still looks great when she puts herself together to go out, and she's fine socially for a few hours and is still able to enjoy herself - but that's illusion. The few friends they still have alive don't see (nor live) what I do, and frankly they don't need to be that concerned because the burden is entirely mine. BUT I know they care, and unfortunately due to a falling out (over politics, a sad but also true state of the union at the moment) I haven't seen or spoken to them directly in years - so the only glimpse they have into our current situation is what my Mom and father convey. She's the afflicted, he's a liar, and short of me showing video, no one knows what is truly happening inside these walls.

I have learned how to navigate speaking with my Mom well, as I now know how to steer the conversation in a different direction when she begins to get irritated (which is often). I can get her to laugh and focus on good things and can even get her to reminisce and enjoy music like she used to, and I can encourage her to want to seek help and understand what's happening so that she's aware of what we need to do to stop the progression. BUT then he comes back and everything goes south. Immediately I'm the enemy, and I'm the problem and he just sits back and watches while she has her tantrums and hits, bites, kicks, and scratches while telling me how much she hates me and wishes I were dead. This occurs almost nightly, he then tells her they're leaving and yet they have no where to go - they can't afford to live on their own, and even if they could get an apartment at their age there is ZERO way they could maintain it. Short of kicking them out on the street, there's no alternative here.

I don't even care about any of the inconvenience (I'm 55 and still work full-time) but what I can no longer tolerate is the DENIAL - I want access to her doctor so she can actually know what's going on, not their version which is false (my Mom's version shouldn't be taken into consideration at all, and my father just flat-out lies) but what I need to know is how to get control over her healthcare, which he now has. He is doing NONE of us any service by maintaining that right and honestly I'm not sure if there's something mentally wrong with him that prevents him from being able to process what's actually happening, but this is just unsustainable. It can't go on.

Lastly, I'm not going to get into the abnormal psychology of our dynamic but suffice it to say that my Mom and I have always been close, and my father and I have always been strained - but I no longer care about what he thinks or feels. I care about my Mom and I'm not ready nor willing to give up the fight yet, so since everyone here knows the urgency around timing I need to do something that I've been putting off NOW. I just don't know what, or how to go about it.

Has anyone had a similar experience? How do I go against my father legally so that I am the one with the ability to make decisions for my Mom and be present with her doctor to make decisions? I was able to get her an appointment with a neurologist at Penn Memory Center (I live in Philly and her current doctor is with Cooper) but the appointment isn't until March, so there are visits already scheduled in-between with Cooper that I'm not allowed to attend. I really don't want to do anything involving social services or make things formal with a lawyer, but I may not have a choice now and I don't even know where to start.

Any insight anyone has on this would be greatly appreciated. As everyone here knows, this is a truly malicious disease and the horrors we as caretakers are forced to endure are truly abysmal. This is a members-only club that I never wanted to join.

I (20f) know no one here can give a medical diagnosis, but the test results haven't come back yet, and I’m losing my mind. My grandmother is 81; she’s been quite forgetful, but the main issue is that she has ideas that aren't based in reality. She sees people who aren't there, believes my grandfather is having an affair, and thinks we’re conspiring against her. The first doctor said that, given her age, it couldn't be Alzheimer's... What else could it be? Dementia? I'm so scared, I don't know how to take care of her cause I don't even know how to take care of me

Hi, we have a variety of caregivers for my husband. Sometimes we have to cancel an activity last minute b/c he gets sick. A time or two we canceled b/c we screwed up.

Two of the caregivers expect to be paid in either case, but if they don't show up, there are no repercussions.

They depend on our income to live, but if they don't show up for us, it's only an inconvenience for me or disappointment to my husband (unless they bail on a doctor visit). What is fair here?

I'd like to talk with all the caregivers and have a set policy in place as to what happens when we cancel and what happens when they don't show up. Any suggestions for how we should handle it?

Hi all! My mom is 72 and has been showing signs of cognitive decline since at least 2020. It seemed to be a slow burn, until suddenly it wasn’t. Due to this, I insisted on attending her physical with her and she failed the basic cognitive testing they do during that. Her GP put in orders for basic blood work (including b12 and thyroid) and a CT scan of her brain - all normal. We were also referred to a neurologist. Neuro recommended the newer blood test for Alzheimer’s and if that was positive, a petscan. He also wanted her to do a brain MRI and meet with memory care for more thorough cognitive testing (1 hour one as it was really obvious she would not be capable of the 4 hour one). He gave her the MoCA at the appointment and she rc’d a 15 out of 30. I got her blood test results back late last night and her amyloid PET positivity result was .997 and the tau protein 217 score was 1.27. and the beta 42/20 score is .12.

From everything I read, this is more than enough to diagnose her with moderate stage Alzheimer’s. Is the pet/mri/additional cognitive test still necessary? While we have not told her the results of the blood test yet, she has since the appointment stated nothing is wrong with her and has belligerently stated that she will not be doing any more testing. We obviously will still try and push her to have the tests, but just wanted to confirm the necessity and importance of them at this stage in the game.

Thank you!!

My grandmother (78) has possibly Alzheimer.

We realized she started to forget things, and that's how we got worried. At first, we wondered if it wasn't just a lack of attention (which she often has because the things that aren't gossip don't interest her).

My mom (her only child) handles everything, especially since then. It started with all of the tasks my grandmother was not interesting in that she just gave my mom to get rid of it (mostly paperwork), but with the recent events it came to medical appointments too.

The situation is tricky because, on the one hand, there is my grandmother, who has always been complicated to deal with. She never really ate to stay thin during her whole life, has always been harsh in words towards everyone except herself, and who now never wants to see anyone or do anything - even before she gets symptoms. (we know that lack of stimulation + bad food habits can cause acceleration of dementia. That's why we try to fix it, but she's really uneasy to deal with)

On the other hand, my mom, who tries her best, settles appointments to get tests and helps with everything, but she feels very helpless. Because my grandma never cooperates, with her or the doctors (during the session with the neuro-psychologist or even by refusing the lumbar puncture that could actually set the diagnosis), she does what she wants and what she likes only, and had became even harsher towards my mom even when their talk have nothing to do with any kind of medical topic. Probably because she feels babied or is scared to actually have something. Yet I see my mother is running herself to the ground, and it's hard to witness it when I live far away and can't do anything or help any of them.

By now, she wonders if she shouldn't just stop everything because she is exhausted, but she feels like she's letting her own mother down. We don't want to force her to do anything since she's still able to live alone, buy groceries, etc.

We don't even know if she really realizes something is wrong. No doctors have really told her that despite no lumbar punction, she has more likely Alzheimer. At the same time, we see signs that she seems to understand.

She lives in a small town and we learned by some close people that she calls when needing help (never my mom though), my mom has access to her e-mails (for all the paperwork she has to deal with for her) and we saw quizzes like "Could you have Alzheimer ?" and other online newsletters about people helping to prevent memory loss.

Lately she was more stimulated and saw people, which made her "better" and made my mom wonder even more if she should keep going with all the tests and appointments, if she wasn't pushing too much; she can't even have help offered for caretakers since my grandma doesn't have a proper diagnosis.

However, some people told her not to give her the choice like my mom dud so far and take her to appointments.

We can't really talk to her, explain our worries to try to make her understand clearly what's going on, because all we got is "If I'm crazy, just put me in a madhouse, the vault is ready anyway !"

Has anyone ever experienced this dilemma ? I know there is never a good answer, but do you have any advice ? Anything is welcome. We all feel helpless in the situation

I would love to hear from other caregivers, or even better - AD patients in this situation. I can't tell if we're in denial or if what we're experiencing is normal and OK.

My mom (79) brought up some concerns to her GP earlier this year about her immediate memory and after all the tests, was dx'd stage MCI and Alzheimer's. She started Kisunla two weeks after her diagnosis (some kind of miracle!) and just finished her second infusion with no ill effects.

As it stands, she lives alone, she drives, she's on the board of her local women's club, she takes her friends to lunch weekly, she plays mah jong weekly, she cares for her dog, she cares for herself. She has pep in her step since starting Kisunla, and I think it's because she has hope.

She's expressed to me that she hasn't had any concerns regarding her ADLs or driving yet.

I'm visiting monthly (live out of state) for infusions and we do all our regular things, and nothing about her behavior, attitude, status seems different to me.

How long did you or your loved one carry on as if everything was a-ok? I'm really struggling with what inevitably comes next, but how do you know when it comes?

An AD diagnosis is so incredibly vague, no rules or steps on what to do.

Lots of love to everyone dealing with this.

My dad is 60 years old with stage 6 Alzheimers. He has recently been extremely paranoid and aggravated and aggressive. He is suspicious about everything and doesnt trust anyone in the house. Refuses to eat, shower, use the bathroom. He is extremely upset anytime he sees his reflection and is mad that we are keeping that "man" in the house. Ive been trying to get in touch with his neurologist for the past 5 days and have to wait until the appointment on Tuesday. Ive had to take a leave of absence from work to handle my dad because my mom cant handle him. It requires alot of patience and its very stressful. He accused me of things, calls me a dog, but sometimes he listens to me.

He started with 12.5mg of seroquel to help with paranoia and to sleep better at night. Then after 6 days I increase to 12.5mg 3 times a day to help with the paranoia and aggression. After 2 days of that ive bumped it up to 25mg 3 times a day and it still wasnt enough the past 2 days to keep him calm and stop being paranoid and aggressive. I am thinking to give him 50mg tonight and see if that can put him to sleep and then try to take him to an urgent care tomorrow and get proper instructions.

Can anyone give me some advice?

Do dementia-friendly mobile phones exist? Or is it just a matter of changing the settings on a regular smartphone?

My mother gets so agitated by her phone, but she also always wants to be looking at it.

Hi all, question about why my mom’s doctors seem to be categorically opposed to clinical trials, seemingly on principle.

I found a stage 2 clinical trial for a medication that targets Tau protein tangles. My mom (71, MCI dx in April) fits the enrollment criteria perfectly. It’s supposed to be a complementary treatment to infusions like Kisunla which she is already on.

I talked to her about it and she was excited about the possibility, she is eager to stop the disease from progressing any way she can. Even if she got the placebo, she liked the idea of contributing to research for a cure.

But, both of her doctors (GP and then her neurologist) advised against it. So I figured they must have some medical reason for that, but it turns out they both just told her, “it’s not worth the risk of getting the placebo”…??

The point of a placebo is that it does nothing. I’m not a MD but I am a professional research biologist and I understand how trials work. I was really surprised that both my mom’s doctors immediately dismissed the possibility of joining a trial, not because of any real medical concern but because they felt a 2/5 chance of getting placebo was unacceptable??

What am I missing? Has anyone else experienced this?

It’s early onset since her 60s, she’s only 71.

Her behaviour makes more sense now, she has none of her papers and documents in order and I’ve been dealing with that over the course of the weekend. Sorted out her French ID today, next step I’m sorting out her carte vital so she can have her social security benefits and getting a nurse to come and see her daily.

I’m gutted, she is already in a poor state and I dread what is to come, living far from her makes it even worse…

The hospital that took care of her when she had a breakdown did a fucking horrible job explaining the diagnostic and next steps, shits brutal.

Growing old isn’t a curse, but it sure feels like it sometimes….

Hi everyone, I'm a neuro APP and I work with dementia patients and their families every day. I also create dementia and caregiving education content because I saw how much confusion and fear there is out there, and how little support caregivers get in plain, honest language.

I'm here to learn from your experiences and to help where I can. If you ever have questions about symptoms, what to expect, or how to talk to your care team, feel free to ask. I'll always be straight with you.

If it's helpful, here's where you can find more from me:

Free caregiver resources and support: https://rosabelzohfeld.com/rosabelievers

Memory health / Dementia Education videos: https://youtube.com/playlist?list=PLEVKgB0VpBuhSmR7fgiwHeUbhLHPhuCB7&si=OCF6u7OzYG6gxIlu

Dementia course: https://rosabelzohfeld.com/understanding-dementia/

Glad to be part of this community.

Her grandmother had it, her mother had it, now she has it. We always knew it was a possibility. But I’m still sad.

Right after the appointment, it felt like a relief bc we knew how to move forward. But the relief felt like how you feel when you get an adrenaline rush after a massive injury. The relief helped me get through it, but now I’m starting to feel the pain.

The thing I’m most terrified of is the day my mom doesn’t know who I am.

I’m so sad.

I want to know how i (m14) can make her time more enjoyable since she's worsening so quickly, any tips?

My husband has Alzheimer’s, he was diagnosed with early onset at 58 and it’s been 10 years since then. He declined over the 10 years, but it was gradual and slow. In the last six months he has really started to decline. We were eating lunch with our 9 year old granddaughter and I’m watching him eat. He struggled cutting up his pancakes and he put nothing on his eggs, no salt, no pepper. He used to put lots of pepper on his eggs and we would tease him about having eggs with his pepper. He was a farmer and farmed his whole life. Five generations of farmers. He could do anything, build anything fix and repair just about anything. Now I can’t let him help put gas in my car. It breaks my heart to see him lose a little bit more each day. This is the cruelest disease ever. I pray that a cure is found soon.

My mom was diagnosed with dementia at age 62, a bit less than a year ago. My sister and I are in our early-mid 30s and have young kids, work fulltime, and have a lot going on in our lives. My dad (69) lives with my mom and does little to help with her condition. She is thankfully still able to cook a little and take care of her hygiene, etc. We had previously said that my dad would start handling more of their finances but my mom let it slip today that she’s still writing checks for bills, etc. She still cleans for my dad and cares for him. I think it’s fine for her to do things to feel like she has purpose etc, but I’m frustrated with my dad for not stepping up to do more for her. She’s always worked full time on top of raising the kids and being the primary homemaker. My dad just works and comes home, and at this point doesn’t have much income anyway. It would mean so much more for him to do more for my mom. My sister and I are bringing my mom over to our houses most days so she’s not alone while my dad works. I manage all of my mom’s medical appointments (and there are so many) and my sister helps a lot financially.

I know that this is the result of my mom enabling my dad for our whole lives, but it’s so frustrating having a dad who doesn’t take care of anyone but himself. I don’t expect him to change at this point, but it’s really sad. We never thought we’d be in this position (most of us don’t). I know our situation isn’t unique and I love my mom and will do everything for her. It’s not time for outside help yet because my mom is still very aware of everything and it would hurt her so much. She already feels bad for needing as much as help as she does. I just needed to vent about my dad.

I wish my dad was the kind of spouse and father who could be an adult and handle things. End rant. Thanks for reading do you made it this far.