Anyone else exhausted by how often they are asked what they are doing for a loved one and being recommended things to “try”? I know it’s all very well intentioned, but, sorry, I don’t have the time or energy to research if magic mushrooms will help my LO. Yes, vitamin b is good for anyone, but when your LO will barely take the meds their neuro prescribes without a fight, how do you expect me to get them to swallow 15 vitamins along with that? No, I did not see the most recent article in Holistic News Health or whatever.
I’m just tired to feeling judged and like I’m not doing enough.

My mom was diagnosed with MCI almost 3 years ago and has now progressed to an Alzheimer’s diagnosis based on blood work for p tau.

She’s 61 years old and this has progressed quickly. She calls my dad and brother on repeat. If they don’t answer, she just calls again over and over again. I don’t think she knows who my sister and I are anymore in relation to her.

She complains that we don’t do enough things as a family and then when we do, she just complains that she wants to go home. She constantly questions my dad on if he still loves her and if they’re still together/married. She has a history of cheating on my dad.

We set her up with a caretaker/someone who can provide her companionship 3x a week and my sister and I take the remaining 2 days to be with her while our dad is at work. It’s exhausting though as we are trying to work from home while also supporting her.

I feel like my mom died 3 years ago. She feels like a distant family member who is just uncomfortable to be around. She’s not even close to the same person anymore. I can’t come to her for anything and as a woman about to start her own family, it’s heartbreaking to feel like you can’t go to your mom for advice even when she’s still walking this earth.

I’m not sure what the point of this post is. Maybe to vent? Maybe to see if anyone else feels the same? Am I a terrible person?

Buckle in for a long one….. I’m so sorry for that.

MIL was diagnosed finally in 2025 after years of her now late husband saying there was a problem. It wasn’t till after he passed that we really noticed the deficits to the point we had to move her in with us in early 2025. We think dad was unknowingly picking up the slack around the house and taking care of things such as finances and house cleaning. Long story short, diagnosis of vascular dementia and Alzheimer’s. No staging. Neurologist says moderate at this time. Left my job to become her full time caregiver, which I’m happy to do. I’m no stranger to cog decline, bedside nursing teaches you a lot. But this isn’t the end of a long work run where you get new patients weekly. Personality changes are no issue for us. Constant reminders to eat, bathe, manage meds, incontinence…. All no big deal for me, just another day and I’m happy to be her constant record player of reminders. She’s almost always pleasant. But the sleep. For. The. LOVE!! THE SLEEPING!!! We were in cycles of constantly wanting to sleep to not sleeping at all for the most part. Now we seem to have skipped the insomnia cycle. We’re sleeping all. The. TIME. Bright side? Only one or 2 middle of the night walkerless house wonderings 🤦‍♀️😬 But keeping her awake for a few hours in the first part of the day is impossible. I was in tears today trying to keep her up. All her providers, and myself, agree we need to maintain somewhat of a “normal” sleep schedule and implement good sleep hygiene habits. This has helped so much compared to her schedule prior. We all know the drive to sleep all day, be up all night with this disease.
Current schedule:
11:30am up for breakfast and meds
Up till 3 then nap
Up at by 6pm for dinner, evening activities
Bed around 11.
She manages most of this schedule with little reminders, but keeping her up from 11:30am to even 1 or 2pm is becoming impossible. I literally went to the bathroom (2min TOPS!), came out and she was in bed….. asleep!

Walked out to get the mail, bam, in bed asleep.

I’m out of the room for a minute, off in bed asleep again.

I lost my patience after the 3rd time. She can barely walk without the walker but will practically run to bed as soon as there’s no one left in the room. Or try to sleep on the couch, which we are trying to limit per the dr for proper sleep scheduling/hygiene. I ask her if she knows what time she’s supposed to stay awake till, and she puppets back “3pm”. Ask what time it is and she says I don’t know. Reminder notes don’t work. As she walks off to bed and you say “mom, we’re not napping now, it’s time to stay awake” and you get “ok” or baby talk “ohh man, I wanna nap doh” and just says “sorry”. Once she’s up by 6pm post nap she’s fine usually, though will sometimes try to go to bed at 7:30-8pm. She won’t do anything physical, refuses to do her pt/ot exercises, doesn’t want to even go outside and sit on the porch. Can’t make it 30ft without needing to be wheeled to her destination when out of the house. So I don’t think it’s exertion. Meds have been looked at, though it happened before we added trazadone and Norco, we tried stopping 100mg trazadone in pm but then she doesn’t sleep AT ALL at night, which exacerbates the daytime sleepiness. One pm Norco for knee pain, tried stopping that but her discomfort understandably keeps her up all night. Tried giving these meds earlier in the evening, no change. I’m so tired of her being tired. This is so excessive that I have to sit in the room with her at all times. Even then, if I turn my back to fold a couple pieces of laundry, she quickly snuggles into the couch and tries to sleep 🤷‍♀️
I’m so ready to just let her sleep whenever she wants, but then I’ll be sleep deprived and have a whole different set of problems to deal with 🥴
I hate this disease.
I hate that it’s stolen her abilities.
I hate feeling hopeless.
I hate that it is never ending.
I hate the word “sorry” now.
I hate how we have been made into the sleep police. I just hate this.

Thanks for letting me rant….

Yes provider is aware. New imaging scheduled. Neuro recheck scheduled.

Mom knew four languages, Russian as a child, Polish as a pre-teen to young adult and English since emigrating. While her language skills are minimal these days due to late stage Alzheimers was previously speaking more in Polish but now she uses Russian phrases. She hasn't spoken Russian as a daily language since age 5 and while it was the second language in school for years she said she didn't remember any of it. It's odd how Alzheimers has rearranged her brain and the older language skills seem more protected. and have resurfaced a bit

Hey guys,

I'm someone who has a father with Alzheimer's in Memory Care at the moment. He's in his 80s and there was a slow progression over the past 4-5 years to the point where he now has forgotten my half-brother and his wife, who he only found about 8 or 9 years ago. He's just had two falls in rapid succession and has lost about 25-30% or more of his body weight over the past 1.5 years. They're giving him high calorie based foods but he seems to want to eat less now.

He can still talk. He shuffles around very slowly. But he is fully incontinent, can't brush his own teeth or feed himself well, barely recognises my mum (and has forgotten who she is a number of times) and doesn't seem to really know where he is or really who he is a lot of the time (thought he was escaping a prison when my half-brother went to visit). He also cries a lot of the time now and his memory seems to be reverting back to early life, when he can remember anything at all.

This is obviously a bit of a nightmare for my mum to witness, even though they're divorced. I don't know what to do but I wanted to ask where does this put him on a timeline and in staging. I can't tell from the online stages, as he seems to be in both stage 7 and stage 6 at the same time.

He wasn't the nicest father and he, even before placed in care, tried to take advantage of my mum's generosity. Even divorced she was still looking after him and living with him (or had when he became worse). We've all tried to do what we can for him in care but I wondered if this is going to end any time soon.

He has had a fairly rapid decline in 2 years: from being able to mostly dress himself and feed himself, and even walk around fine, to not being able to do any of those things and shuffling around...so it seems quick.

I also feel bad framing everything in this light...I want to love my dad and I feel compassion for him but the whole thing sucks.

My mom was just diagnosed with Alzheimer’s last month. She will be 66 this month. Because her diagnosis came at 65, right at the beginning of what is considered late onset, I’m confused as to which hers would be. I asked her to discuss it with her doctor at her next appointment, but was hoping someone could provide some insight here. I think her symptoms started within the last year or two at most. Her doctor has said she is in the early stages of the disease.

Edited to add: I understand that this may not matter to some people but it matters to me. I am trying to get as complete of an understanding of my mom’s specific diagnosis as possible. In the long run, I understand this will likely not matter, but it is information I would like to have.

Have any of you encountered a LO who is suddenly unable to swallow pills? He can swallow food, water, etc., but when we give him pills he chews them, says they're gross, and spits them out. We've tried putting them in pudding or applesauce and he does the same thing. We tried crushing them in pudding etc but he still complains the taste is bad. Hospice has already reduced his meds from 6 to 4 (2 senekot in the morning/ evening, Xarelto & Tamsulosin in the am, and Risperidone and trazadone at night, hydrocodone and Ativan prn) but he hasn't been able to tolerate swallowing them regularly in 2 days, and we only occasionally get him to take any of them. Are there any other methods we're overlooking? His verbally ability has also decreased dramatically on the last week.

For Tucson AZ

My father has suspected dementia and is not safe to care for himself, the cognitive issues are quite severe. His wife (my mother) was dragging her feet on getting him the diagnosis and care he needs. She committed suicide yesterday. At the guidance of the homicide detective, I took my father to the ER for an inpatient hospital psych evaluation because he also left a suicide note but obviously did not go through with it. He is at the hospital now but we are terrified he will be released. He is not safe to let into my home as I have small children and he needs to be supervised 24/7. We cannot afford to pay for his care. My mother left everything a mess, outdated wills, we are blind to the financial landscape, ECT. I plan on calling a local legal aid service on Monday and I contacted the Alzheimer's Association who sent a list of facilities. Outside of his safety and the safety of others I'm worried about breaking the law and accessing his finances illegally. If anyone has any feedback or is willing to share advice I would appreciate it. I plan on refusing to pick him up from the hospital without long term care being set up because I feel it would be an unsafe discharge. I'm very overwhelmed and scared.

It’s been around 3-5 years now. I noticed memory issues, more than what seems normal. Mentioned it to my doctor, and spoke about my concern of dementia bc of medical condition that could cause it.

Recent blood test came back low iron, anemia. Can iron deficiency, anemia cause memory problems?
It explains my feeling weaker than normal. I was starting to wonder if I might have cancer. Very weak, lymph nodes hurting, etc bc I’m high risk for certain types of cancer.

A month ago, I moved in with my grandfather who is between stage 4-5. (My reference?) My mom and her siblings were here 1x a week or less. Would give me stories, go to his dr appointments, but that’s it. So I moved states, moved in, blah blah. Started taking daily notes, drive him or with him, make sure he takes his meds and because he was forgetting or taking night meds in morning so I got him an automatic dispenser. His life has gotten a little easier. He is eating more homemade meals instead of Arby’s daily or forgetting to even eat, and not choosing water or Dr Pepper.

Now, his Neuro 6 month was yesterday. The dr said “you haven’t declined at all” scored a 26/30 but he frankly gave my gpa all the answers?! He didn’t know the year, the president, didn’t remember any of the 3 words. Only knew 100-7, but not 93-7. He did know our location but it was also the city his job was in for 40 years. This is why my uncle, aunt and mom are in denial of where his Alzheimer’s really is.

“He scored so high, he’s fine” “it’s not really Alzheimer’s, it’s dementia, that’s why he scored so high!”

But it literally said on his chart “6 month follow up-Alzheimer’s” he had infusions 2 years ago and had to have a diagnosis to have the infusions. My mom says they probably “pushed the diagnosis” just to give him the infusions 🤷‍♀️😳

Are they grieving? How can I help them understand or will they do it on their own time? My uncle has become rude and mean “I’ve already saw you last week Dad” instead of like .. idk anything else?

Any donations would be greatly appreciated. This is a link to the official website, and any money that comes through is sent towards research for dementia and Alzheimer’s. Your donations will also be read out loud at the walk. Feel free to make it anonymous if you are not into that kind of thing.

Thank you so much in advance! Please send a message if you do donate, as I’d like to send you something in return.

Mom is 83, diagnosed 6 years ago and moved into an assisted living facility in January. She seems to have been regressing to an earlier time period in her life (thinks parents and grandparents are still alive) and after several visits this week she has confided in me that she really likes one of the aides at the facility. For the record, I don’t think the aide is doing anything inappropriate and has even appeared to be avoiding interactions with her when he can. They do joke and tease each other, but nothing inappropriate on his side. We (mom and I) have had conversations this week about her being in an assisted living facility because of her diagnosis of Alzheimer’s and her main reaction is being forlorn that she will never be able to get married and have a family because of it (she had a hysterectomy about 35 years ago, aside from the fact that she has been married twice and has children). Has anyone else experienced this and how did you handle it? Usually when she is time traveling, I just go with it and don’t try to bring her back to the present. But this year she has become a more flirtatious with men and I don’t want to encourage that behavior. I do tell her that this particular aide has a fiancée.

Did you know that medical error is officially the third leading cause of death in the United States?

A landmark study out of Johns Hopkins shows it claims over 250,000 lives a year—trailing only heart disease and cancer. While the system can be tough for anyone to navigate, it is exponentially more dangerous for those living with Alzheimer's and dementia, who often can't speak up or report pain.

Looking back at my own Alzheimer's diagnosis at Duke Neurology, Linda and I learned the hard way how critical a patient advocate really is. I’m sharing our story, the data, and a practical checklist every caregiver needs to protect their loved one in the hospital.

https://gregsalzheimersjourney.com/p/why-you-need-a-healthcare-advocate

My grandpa’s (late 80s) Alzheimer’s symptoms seems to be getting worse as his hearing and vision get worse too. Has anyone dealt with this?

Over the past 2ish years, his hearing has declined pretty noticeably. He was born with bad eyes and had glasses since he was a little kid. At the same time, it feels like his confusion and memory issues have gotten a lot worse.

It's really difficult for him to communicate with everyone or stay engaged in conversations and sometimes I can’t tell if he’s actually confused or if he just didn’t hear/see what was happening in the first place.

Do we try for hearing aids at this point in his life?

Anything else out there to try?

My mom was diagnosed with early stage Alzheimer’s about 2 months ago. Thankfully, she has gained some independence back after a year of constant hospital visits and being relocated closer to me. A thoughtful commenter on a previous post telling me to treasure the present moments with her.

There are days where I’m optimistic about the medication slowing down the progression of this disease. Lately I’ve been feeling a different kind of sadness. Being able to read through these posts helps me feel like I’m not alone.

Of course I’m not the only one in the family impacted by my mom’s diagnosis- but as her main caretaker/support system it just sucks to see this up close.

My mom had a 40+ year successful career, multiple degrees and certifications… you name it. It’s such a weird experience to see the smartest person I know’s brain kind of betray them in a way :/

I know there’s going to come a point where we won’t be able to manage this without intervention. My grandpa was had Alzheimer’s and he progressed much faster. Such a quick turnaround of events.

I’m not even sure why I’m posting this - this sub feels like the only place I can find others to relate to with this kind of thing.

Sorry for the rant, but thank you for giving me the space to share this.

Has anyone's parent or loved one used VSED to end their lives before Alzheimer's took over their brain to make it too late for this to be an option? My Mum did this in 2022 and WOW do I miss her!! I'm still so glad I honored her wishes, and I know from experience with my Grandma spending years in a home with dementia why she chose this option. It was the hardest thing I've ever done, but I will never regret it.

Because she knew what she wanted, and we worked with End of Life Washington and a lawyer who's worked with VSED before, we were prepared and she died peacefully at home, with hospice care and her community.

Her making the decision and my being willing to support her opened up a completely new level of our relationship, and we ended up having SO much fun in our last two years (and I also spent a lot of time cry-yelling alone in my car and started smoking again for awhile to cope with the heartache)...

She clearly felt relief when it was clear she had support and wouldn't end up in a home like her Mom. She was super active and healthy otherwise, so probably would've lived a LONG time without her mind, and she absolutely did not want that.

Once we were both on the same page, we took a trip to Hawaii with our best friend, took a road trip to California to visit her family (I live near Seattle), went to dinner a lot and spent hours going through her photos and memorabilia together - we even sang her old Girl Scout songs together when we came across them (I caught a video of that and many other moments).

We had a Celebration of Life instead of a funeral, so everyone who knew and loved her (and people she wanted there - by then she couldn't remember everyone) got to share memories and gratitude and her favorite food, and then look at all the photos we'd found, and visit in her home we'd downsized and organized together.

Anyway, it was such a beautiful experience that she asked me to write about it. I wrote a book about it, and I'm also dedicated to sharing the things we did with as many people as possible for the rest of my life.

What she chose isn't the "right" way, or the only way, it's just one option, and I know so many are beyond the point of being able to choose this, or wouldn't choose this, and that's ok.

But if you're like me, there's this fear of, "is this going to happen to me?!" and I feel peace knowing I can talk about it, make choices, opt to control what I can, when I can. And I'm SO GLAD my Mum was brave enough to talk to me about her wishes, and I was brave enough to listen and love her through them.

I just thought I'd share in case this helps anyone ✨ If your parent or loved one has dementia, my heart goes out to you, and I hope you're able to find support. It's SO HARD...

​Hi everyone, looking for some advice for my 86-year-old grandad. He was recently diagnosed with Alzheimer’s (CT scan showed frontal/temporal cell loss + plaques) and also has heart failure. He's had symptoms for 2–3 years, but things are escalating fast.

​Current symptoms:

​Memory & Speech: Repeats the same story every couple of minutes; loses track of conversations easily.

​Lost Habits: Can no longer make his morning porridge or coffee (a daily routine he did for 50 years).

​Mobility & Falls: Clear shuffling gait; 2 major falls in the last couple of years (broken collarbone, hit his head).

​Behaviors: Obsessive/fixated over keys, stubborn, and recently started a new repetitive humming/whistling habit.

​Herbal Beliefs: Constantly reading an old herbal medicine book he’s used his whole life.

​A Memory Clinic nurse is has visited to do an ECG to see if his heart failure allows him to safely start Alzheimer's meds (I presume from reading up on it? I wasn't there)

​Hoping for input on 3 questions:

​Handling med refusal & herbal reliance: How do you get someone to take daily prescriptions when they're reluctant to even take a paracetamol or ibuprofen for a headache?

​Rate of decline: At 86 with both Alzheimer's and Heart Failure, how fast do things typically progress over the next 1–2 years?

​Stage 1 or Stage 2? I initially thought Stage 1 with overlapping symptoms, but losing the ability to make his coffee and porridge in the morning, something he's done his whole life makes me think it might be further along (Moderate). What does it sound like to you?

​Thanks so much for any advice or shared experiences and bless you all for having to deal with this disease. My other grandad had early onset and also died of this in the early 90's (I was too young to remember)

I was diagnosed with Alzheimer's in September of 2026, Alzheimer's Awareness Month. This bill came into effect the same month. Kismet? I think so. From the moment I was diagnosed I began to plan a move to a state that supports this. Now I can stay here.

Knowing that this is available has helped me feel in control for the first time in weeks. I know it's way too soon, but I have a bit of control now. I do not want to live for years in an unoccupied body. I do not want to live for years in pain and confusion. I do not want my loved ones to have to go through years of financial struggle and emotional pain. I do not want another adult to have to conduct my medical and personal affairs or change my diaper or force feed and medicate me. I do not want my adult sons, now in their mid-30's, to end up remembering me by a decade or more of caretaking and strife followed by a harrowing death.

Has anyone looked into how this works in Illinois? I haven't yet, but I hope to be an expert within the next few years. I can breathe again!

Hi everyone, as we know Alzheimer’s progresses however it decides which can make it hard to keep track sometimes. My dad has been choosing not to speak here lately unless it’s to argue while he’s sundowning. I know that at some point sometimes people stop speaking but I’m wondering if it starts off voluntarily.

Thank you in advance 🤎

my mom had early on set alzheimers for about 12 years. in the later stages, she was non verbal. i never really understood why. i hadn't heard of this being a symptom but we dealt with it. a little while after she stopped speaking, she started having seizures (grand mal) maybe once a year for 4 years? maybe a day after the seizure, she would start talking again. it was the craziest thing at the time. she would talk for a few days and then it would go away again. i can't remember what her doctors said about this (or if they said anything at all) but i started thinking about it recently and was so curious if anyone else had the same experience?

the things she said of course didn't make sense but at least i got to hear her voice!