Twenty months ago my husband was diagnosed with Mild Cognitive Impairment after a four hour cognitive assessment. Recently he was assessed again, and this time it shows he has advanced to Mild Dementia with a probability of Alzheimer’s. This agrees with our observations as a family. His condition is progressing. The problem is we can’t get in to a neurologist appointment for seven months, and I understand that you are only eligible for the medications like Leqembi when still in the early stages of the disease. Is it likely that he will still be eligible in seven months? Is there a way to rush the process if not? He has an appointment next month with his primary care. Can they prescribe the pTAU blood test and PET scan? Those were mentioned at our first appointment twenty months ago. Thanks for any help

LO is in very early stages but I still find myself spinning between denial, anger and depression. This disease is literally their worst nightmare come true and I’m telling myself it’s not happening or it’s not fair or it’s going to get worse. And the worst part is that when I’ve felt that way in the last my LO was always who I’d reach out to steady myself again. I’m still so grateful to have them in my life but damn the wheel still turns.

Hi everyone,
I'm trying to understand where my grandma is in her Alzheimer's journey. She's now completely bedridden, requires full-time care, and struggles with eating, although she can still take liquids and some liquid foods.
Twice now, she's become completely unresponsive, and we thought we were losing her. But after some time, she unexpectedly became responsive again and was able to talk.
Some days she's calm and communicates, while other days she screams throughout the night. It's almost like she's still here mentally at times, but her body is slowly giving up.
It's been especially heartbreaking for my mom to see her own mother like this. She never imagined having to watch her go through something so difficult.
My grandma is currently receiving hospice care. We're struggling to understand what stage of Alzheimer's she's in and what to expect next. It's emotionally difficult because some days she seems to be improving, while other days we feel like we're losing her.
We just want to understand what she's going through and how we can keep her comfortable.
Has anyone experienced something similar with their loved ones? Any advice or experiences would mean a lot to our family. Thank you.

I do not want to get into a vaccination debate but i am interested if anyone has received similar guidance. My mom's geriatric doctor is advising against doing any boosters on the covid vaccine. I didnt' get a ton of detail from her but apparently there was a large scale study out of Korea that researchers are trying to get a better handle on that saw a potential risk factor. It's not well understood and right now there's just a correlation they need to figure out

I’m the FT caregiver of my BFF. We’ve been on this journey for 8 years. It’s progressed and now we’re at a tough place. Sometimes she doesn’t recognize me and refuses to take her medication and lays in bed (14 hours last night). She’s not interested in exercising but still feels safe. I have to bathe and clean her but she can still feed herself. I am really sad and gutted about our situation but grateful I’ve been able to take care of her. I’m tired though and with her hiding pills and other things I am wondering what’s next. I’m very protective of her and I am it. Her family is not interested. She’s so precious to me I hate it!

My mom has Alzheimer's and is becoming quite severe as she is developing issues with dressing and incontinence. She has the most trouble with words and conversations and it's usually very difficult to figure out what she's trying to tell you no matter what it's about.

Lately, she's been very upset about something (we think) is from her past but none of us can figure it out. We (my dad, sister, and me) have all tried to talk to her about it both together and separately and we only get bits and pieces. Some questions she gives very strong yeses and nos to, but to most she just says idk or gives us one-word hints. She claims it's not about my dad no matter how many times we ask, but she often takes her anger out on him so we wonder if it's related.

All I've collected is it's about "some guy" and she "messed up and didn't know what to do" and it has something to do with subbing, which she used to do for my school district. She thinks whatever it is happened recently, but I don't think that clue helps us much as she has no real concept of time anymore. I do wonder if she bumped into someone or saw something that reminded her of whatever this is and that's why she feels it's recent. My dad is with her pretty much 24/7 so it's highly unlikely something happened that he doesn't know about.

The obvious theories are that she either messed up at work, had an affair, or someone crossed a line with her and she never told us and for some reason it's eating away at her now. None of us care what it is at this point, we just want to figure it out so we can help her.

I recognize all of this could be her developing delusional thoughts or paranoia so it may truly be nothing, but I also really want to try to get to the bottom of this if there is a bottom to get to. Any questions I should ask? Any method to asking these type of questions when it's so hard for her to talk? Is this all a fool's errand?

My mom is overwhelmed by messages and spam calls and does not understand how to use her phone anymore and is requesting a new phone.

I've done the best I can to clear what's there and blocked calls from unknown numbers but there's really nothing to do with the texts as they're coming from hundreds of different numbers. I think it would also benefit her to have something simpler — just a contact lists, calls, and texts. She's never used apple products and has been using pixel for the past ten years and would like something that supports her pixel watch...

Hesitant to get her number changed because my mom used to run everything — bank accounts, appointments, etc. My dad is concerned we'll miss out on important information.

Any advice?

After a long 10 years, my mother will finally soon be at peace. She was diagnosed when she was 52 and I was 19. The last 10 years have been something out of a nightmare, and I just wanted to thank everyone on this subreddit for not letting me feel so alone. If you’re reading this and are still in the fight, I just want to tell you to keep pushing and never give up hope. I believe in and love every single person here, and I hope I was able to help some of you in the same way you’ve helped me. I’ll still be here to offer support, but now I need to discover who I am and what I want out of life. Being a caregiver is all I’ve known throughout my adult life, and I think it’s finally time to figure out who I am beyond that. Thank you all for being there when I needed it most. ❤️

Hello's!

So I am the main caretaker of my dad who has alzheimers. He's pretty far gone and it won't be long before he will end up in a caring home or passess..

But the question..

My dad smokes.. He smoked since he was about 15 years old and is now 80. He smokes about 2 packages of shag a week.
The last few months it was a absolute nightmare since he started to set the trashcan on fire. I got fireproof trashcans extra smoke detection nearby etc.

But the good news.. He has forgotten that he smokes. He emptied his package of shag/cigarettes and never took the new one from the drawer.
Its there.. Its ready for him if he wants it... I just started to push it a little bit more of out sight.

I know he has withdrawal symptoms. He eats everything he can eat.. including dog kibble. ( had another post somewhere about that )

But I am glad he quit smoking.
My brothers think I am cruel and mean.. That I should literally make the cigarette for him and even light it if needs to be.. How dare I take a 80 year old his smokes away ( its not gone its in the drawer ) Why don't I help him etc etc..

What do you guys think?? Just let him forget he smokes and put the smoking ware further and further away. Or make his cigarettes and make sure he has his smokes from time to time by handing it to him.

I am scared of getting this horrible disease myself. It breaks my heart what it has done to the person I love the most. I’m 32(F) but I want to ensure that if I’m ever diagnosed in early stages that I have the ability to choose to let go. I know this is a highly divisive topic for most, but I believe the right to choose. I don’t want to go through this and I don’t want my loved ones to see me go through this disease. It’s traumatic. What steps should I take legally to ensure my documents are in order? Do people write this in wills as well?

*im Canadian but currently live in the UK.

I just learned about this program. I do not have any personal experience with it but it seems like it can be helpful. If the person diagnosed with Alzheimer’s is on an Advantage plan, they will not qualify for program.

I’m 72yo, hubs w Alz (stage 5-6) is 76yo. I’ve been dealing with a blown lumbar disc mid-diagnosed as sciatica since February. My activity is very limited even with rolling walker.

My concern is the condition of our house. Hubs tries to help which is sometimes worse than nothing. Ex: ice cream in refrigerator, fresh veggies in freezer, lost 4 sets of mailbox keys and two vehicle fobs. Floors have not been mopped or vacuumed in 6 months.

All of this is driving me batty, with no real way of addressing it. We cannot afford a housekeeper, although we have hired a CNA for 12 hours/week to start in November. I’m honestly ashamed to have her see the place. Have not had any visitors for same reason.

My question is: Is anyone else here going through a similar thing where neither of you can do much? Or, has anyone with similar issues found a solution?

Please help as I’m at my wit’s end. Thanks in advance.

Hello. My dad was diagnosed about three years ago. He's my best friend and favorite person. I live on my own and my brother lives across the country, but my mom lives with him. Until pretty recently he was doing decently well. But this weekend my mom and I went with him to my cousin's wedding, and I saw the change a lot more than I had in the past.

He still knows who I am, he still generally knows what's going on, he's still the guy I love. But he really can't be on his own anymore. He needs a lot more care and struggles to speak. The thing I am most grateful for is that he has a lot of people in his life who love him to bits, my mom foremost among them, and he still is happy and joyful.

But I couldn't hold in my tears around him. I had to look away and cry about every five seconds. I am generally someone who feels his feelings pretty strongly and openly, and I don't shy away from my emotions (or more accurately, I can't).

I want to share in his happiness and be strong around him and continue to treat him like a person. I want to spend more time with him, but I also don't want these feelings to consume my life, and I don't want to fall into a depression because I literally cannot think about anything else. I'm going to be a teacher, and I want to be strong for my students and make a difference for them and not break down in the middle of class or have to take weeks off because I just can't manage.

Maybe I just don't have enough faith in myself to live my life, but I also know how much my emotions tend to consume me.

I've know that my dad was going to get worse. I've know that he's going to die. But I'm terrified of not being able to live my life. I want to be a great teacher. I want to find love. I want to travel. I want to have great friends and care for them and have them care for me. I want to do fun things and celebrate the joy of life because I know that's what my dad wants me to do, but I'm scared that as he gets worse and after I lose him my life will just totally fall apart.

I'm looking for encouragement, hope, advice, kind words, whatever. I know it's going to be hard, I know I'm going to be distraught, I know it's going to change who I am forever. I just want to know that I can still have a good life as he gets worse and after he's gone. It's what he wants for me.

Hey guys,

My mom's 62 and for the past 3 years I've been noticing some differences in her memory and attention. I'll give some examples so you can understand the patterns. They don't happen non-stop, but they happen often enough that they've been noticed by my family and her co-workers.

- repeating the same question a couple of times in a short period of time without remembering the answer or the fact that she asked already;

- asking about a homie of mine if he still lives in another country, even if I told her 'no' for the past 3 years;

- forgetting that we made a plan to do something, even the conversation itself that included the plan;

- some conversations feel like an interaction with an NPC, for example (we've had this conversation ~10 times):

her: I wonder why my mouth is always dry?

me: the air is dry and you don't drink enough water

her: my co-worker says it might be diabetes

- to continue the NPC idea, we've visited some relatives a couple of months ago and she repeated the same little story for 3 times in the span of 2 days, with the same delivery and intonation;

Otherwise she's fully functional, she has a job, she's active at home and so on. If you met her and talked to her for a while, you might reach the conclusion that she just doesn't listen to you with enough attention. She never paid much attention in conversations in the past either, but she wouldn't display any of the patterns I mentioned above. She's aware of them and I talked her into seeing a neurologist. She did an MRI, but according to her, the neurologist said it's fine and that was it. I made the mistake of trusting her to do this by herself, without my presence.

She always says she forgets stuff because she's stressed from work and her mind is wandering in too many directions because she has too much stuff to do. I believe it to an extent, but I don't believe it's a comprehensive explanation for the patterns she displays.

Grandma's in her early 80's, she invents shit from time to time but otherwise she seems fine. Great-grandma, she was in her 90's when I was a kid and I only knew her with advanced dementia. The men died early from different issues.

I feel like I've waited for too long and I want to prevent this from getting worse, or at least slow it down - whatever it may be.

What do you think? Do you recognize the patterns? Does it sound like dementia? What should I do?

Thank you for taking your time.

I’ve had a conversation recently with my grandma regarding my grandpas decline over the years. It was a shock to me and I hadn’t really caught on or suspected it other than the possibility of it happening in the future considering his family’s history with Alzheimer’s. He really isn’t as active and now that I realize and understood the stages, i believe he is in the stage where he either isn’t aware or refuses to acknowledge that something may not be right. From what my grandma explained to me, his memory has been declining over the years along with the desire to go out unless there are plans which would mostly consists of doctor appointments or grocery trips. He likes tools and snacks, but can’t really eat too much junk food. I don’t really know what things to get him but I’d like it to be sentimental. He expressed wanting to go fishing once which I’d be more than happy to do, as it would be the first time for me. Since it’s getting cooler I’m not sure if that is a good or bad idea because he also gets cold really fast too. Any ideas and advice is welcome!

It’s only Wednesday of this week and I’ve already lost my temper twice at my wife. Of course it’s not her fault.

How am I going to do this?  She’s 79, I’m 72 (long story there) and was diagnosed with Alzheimer’s in February this year, and it seems to have gotten worse already. For example, she doesn’t always remember the names of our two sons, sometimes calls them “your family“ instead of “our sons“; is confused how long we spent on vacation in California this summer (we were there three months—she thinks it was two years); she doesn’t believe we have lived in this house for 40 years, etc. She’s reduced contact with most of her friends. In fact, I have to organize her two remaining friends to “drop by“ since she won’t or doesn’t respond to their messages on her phone.

It’s only going to get worse, and I know that, and she doesn’t. 

What’s really hard right now, is me trying to plan out the next few years. We live in Washington DC, where we’ve lived in the same house for 40 years, and raised our two sons. Both of them now live in the San Francisco area, with their wives and now three grandchildren. And my wife’s brother and two sisters also live on the West Coast. So if she’s going to see any of them, in the two or three coherent years she has left, we have to move to the West Coast. But I’m frozen in place and can’t do that. Can’t figure it out. 

Let’s say 3 to 5 years from now, we have to find a memory care home for her. In between, or the next 2 to 3 years, I have to find an apartment or house out there, where we can also have some in-home care, so I don’t go crazy. I think I should look for a furnished rental for about six months, while we figure out a long-term solution. Maybe the long-term solution is a retirement community that has different levels of care. Maybe it’s too much to try to have our own home, even though it would be nice to be within walking distance of a friendly, small town downtown, with coffee shops, restaurants, etc.) while she has some autonomy and understanding. But I’m paralyzed by trying to look for those apartments. It will mean eventually cleaning out this house of 40 years, which will be so very hard. And so very sad. 

And of course, she doesn’t understand any of this. She just thinks “one day at a time“ — like we’ll go visit her brother and sister for a couple of weeks first, “and then figure out what’s next“.  Well, we can’t live like that. Obviously, I’ve got to find an apartment or small house, starting about a month from now, but that’s so hard to do from across the country.  And of course she has no ability to do future planning or help in making complicated decisions.  It’s all on me.

And our sons have not really been welcoming us with open arms. They are in their 30s, with professional jobs themselves and also their wives, and three toddlers under the age of four. So they don’t have the space or energy to “take care of mom and dad“. The only reason we’re hoping to move out there is to see more of them, but realistically that’s only two or three times a month, each, at most. But clearly they’re not going to fly across the country with toddlers to visit us, so we have to make the move, including finding a new place to live, furnishing it, eventually moving some belongings from Washington out to California, closing down our house in Washington, etc., etc. etc.

I’m just exhausted and going crazy with all of this, because I see all that has to be done, and I don’t know how to do it, and I’m obviously not getting any help from my wife, and not enough help from my sons. 

Most of this rant is about logistics, maybe because that’s something that is on the surface and I should be able to handle. But what really immobilizes me is my grief and pain and anger at losing the wife I used to know, and my pain in knowing the future is only going to be worse for her.

What are your experiences?

I hired caregivers so I could take a break at the beginning of this ordeal when my LO was walking and hiding items. Now I can’t find them. So either the items are well hidden (in odd places), or a hired caregiver stole them.

Now my LO no longer walks and I see items in odd places (on the floor under furniture). Maybe my LO put it there but I doubt it.

Once saw my LO watch in my side table drawer and thought oh my LO put it there. Now it’s not there (so I don’t know if I moved it and don’t remember possibly as we all are sleep deprived) or whoever moved it there took it.

I did a search on Google and read that sometime mischievous caregivers will move things around to see if the person notices and next time they visit they take the items…. So that got me thinking. Hence this post.

I’m posting because our family is absolutely devastated, confused, and desperate for answers. We genuinely don’t know what to do next, and I’m hoping someone here has experienced something similar or can offer guidance.

My mother in law has Alzheimer’s disease and was previously living in memory care. Recently, she started exhibiting aggressive behaviors, particularly biting. Because of this, we were told she needed to undergo a psychiatric evaluation and stabilization before she could transition into another memory care facility.

She was admitted to psychiatric care in Moberly, Missouri, with the understanding that the goal was to determine what was causing her aggression, address her behavioral symptoms, and help her become stable enough to return to an appropriate memory care setting.

She did not go into psychiatric care because she was dying. She went in because she was biting.

What has happened since then has been absolutely heartbreaking. Just one or two weeks ago, she was eating extremely well. She had a strong appetite. Now, within a matter of days, she has deteriorated dramatically and has reportedly stopped eating altogether.

During her psychiatric admission, her medications were changed, and we were told that some of her medications were stopped. From what we understand, her condition became significantly worse around this time.
We also remember being told that her ammonia level was elevated, but we don’t know how high it was, whether it was treated, whether it was rechecked, or whether it could be contributing to her sudden deterioration.

Now, after this incredibly rapid decline, the medical team is discussing the possibility of end of life care.
We are in complete shock. I understand that Alzheimer’s is progressive and ultimately terminal. I understand that people with advanced dementia can experience complications and deteriorate. But I am struggling to understand how someone who was eating so well just one or two weeks ago could suddenly deteriorate to this extent.

I’m particularly concerned that there could be something else going on medically that hasn’t been fully addressed.
I’ve been reading about delirium, medication withdrawal, medication side effects, dehydration, elevated ammonia and encephalopathy. I know none of these necessarily explains her situation, but I desperately want to know whether potentially reversible causes have been investigated.

Here are the questions we’re struggling with:
Has anyone experienced a loved one with Alzheimer’s deteriorating dramatically after psychiatric hospitalization or medication changes?

Has anyone had a family member with dementia develop elevated ammonia levels? Did it cause severe confusion, aggression, withdrawal, or refusal to eat? Was it treatable?

Can delirium or medication related encephalopathy make someone with Alzheimer’s appear to be approaching the end of life, even when part of the decline may be reversible?

Has anyone experienced a loved one suddenly refusing food after psychiatric medications were discontinued or adjusted?

If you were in our position, would you request a transfer to a larger hospital for a comprehensive medical evaluation?

Does anyone know an exceptional geriatric psychiatrist, behavioral neurologist, or Alzheimer’s specialist in Missouri or elsewhere who could review her case urgently? We would even consider paying privately for an expert consultation.

For anyone who has been through something similar, did your loved one recover any of their previous functioning once the underlying medical issue was identified and treated?

We are not trying to deny the seriousness of Alzheimer’s or accuse anyone of wrongdoing without knowing the facts. We just want to make sure every reasonable medical explanation has been considered before our family accepts that she is dying.

It is incredibly difficult to reconcile how well she was eating so recently with how dramatically her condition has changed.

We love her, and we don’t want to lose her because something potentially treatable was overlooked.
If you’re a physician, nurse, geriatric psychiatrist, neurologist, dementia caregiver, or someone who has experienced this with a loved one, I would be so grateful for your perspective.

We’re especially interested in hearing from anyone familiar with medical care in Missouri, particularly the Columbia or Moberly areas.

Thank you so much for taking the time to read this. Our family is frightened, and we are desperately trying to figure out how to advocate for her.

This is a PSA for caregivers and families.
This week my SIL, 71 yr old, who suffers from Alzheimer’s, was targeted by an emotional online ad for a product called ‘Golden Brain’.
Though she still has some limited ability to operate her phone, her cognitive ability to discern if something is legit is poor. The video, which she watched on her phone for almost 1 hour, convinced her Golden Brain would reverse her mental decline. Fake AI generated celebrity endorsements, medical authorities, fake CNN style news reports paired with a constant sense of urgency to ‘Buy this product now’ moved her to purchase a worthless product.
After making the purchase she told her husband about the product. Alarm bells went off and he kindly told her that she can not take any ‘medication’ unless her neurologist and GP approve of it.
She told him that she had not bought it yet. At that moment she had already forgotten she bought it. But he gets the alerts for purchases on her credit card and the alert had just popped into his phone.
He told her he would cancel the sale and they would discuss with physicians first.
He call Golden Brain customer service…who said it couldn’t be cancelled as it was ‘in process’. This was minutes after the initial purchase had taken place. He’s no pushover and explained that his wife made an uninformed choice due to her medical condition. They ran him around for 20 minutes making offer after offer to reduce the cost of over & over. He accepted 85% of the sale price. He thought it better than zero.
Yes, he should take away her credit card and find a phone that not smart enough to send her targeted ads.
I’m sure Golden Brain is only one of many sleazy companies taking advantage of people who little hope.
If you know of a way to eliminate these types of ads please let me know.

Has anybody been taking this Huperzine A and if so how do u feel it is working