r/Alzheimers

If there are what are their names. If there aren't how much would you consider paying for such a drug. Eta: spelling

My father is a physician. A good one. The kind who believes medicine should involve touch, eye contact, time, care. He eventually had to go private because he lost faith in the American healthcare system; not in patients, but in a system that forces doctors to rush human beings through like a conveyor belt just to survive financially.

And then we became caregivers ourselves.

My mother-in-law was never even properly diagnosed. Maybe Alzheimer’s. Maybe another form of dementia. It started slowly: bread in the closet, burnt meals, confusion. Then she fell, underwent surgery and anesthesia, and was never the same again.

At one point, her stitches literally grew into her skin because they were left too long. She spoke Spanish and was labeled “combative.” They called my husband in to help hold her down while they cut stitches out of her hip with a scalpel. No numbing. No dignity. No humanity.

Then skilled nursing benefits ended, and they discharged her back to us when she still couldn’t walk.

So we did what millions of families do in this country: we pieced together care ourselves. We googled. We read forums. We stayed up at night trying to understand agitation phases and sundowning and why eye contact and tone mattered. We learned too late that the frustration we sometimes felt wasn’t “her.” This disease changes the brain. It changes the person you knew.

And now we live with guilt too. Guilt for not knowing more. Guilt for being exhausted. Guilt for being human in a system that abandons families and then blames them for not being experts.

People talk about Alzheimer’s like it’s just memory loss or “a little anxiety.” It is not. Watching someone disappear while their body remains alive is brutal. And the people making policy decisions about this disease often have never lived it under their own roof.

What the hell are we doing?

If this is genetic, environmental, tied to food, stress, pollution, isolation - fine. Study it honestly. But stop acting like families aren’t drowning right now while corporations profit from sickness at every stage of the process.

We are here. We are exhausted. We are grieving. Are you seeing us yet?

Hello everyone. I’m sure this has been discussed,but I’m new here and couldn’t find anything. My MIL has been in a therapy/nursing home since last September. I lost my mom , and then MIL had a stroke 4 days later. We are dealing with her crying everyday wanting to go home. The stroke affected her right side. She can’t get up alone or walk. She can now raise her right arm about halfway. She has lost her ability to recall the names of things as simple a light ,a chair & has now forgotten how to use her makeup. My FIL is 86,he can barely walk on his own,but he thinks he can take her home & care for her. He’s not thinking about showers,bathroom accidents & everyday things. I’m needing any advice y’all can give us ❤️

Location: New York State

An 86-year-old widow has 4 adult children (3 sons, 1 daughter). She was diagnosed with Alzheimer’s and qualified for 24/7 in-home care.

Originally, she named her daughter as Power of Attorney. One of the sons became angry that his sister was “in control,” took their mother to a lawyer and allegedly convinced her that the daughter was stealing from her and that she needed to switch POA to him. At that point, the mother already had cognitive decline and confusion and agreed.

After becoming POA, the son had the mother sign over roughly $500,000 in checks to him over about 2 years, which he allegedly gambled away. He also opened a joint bank account with her and used her ATM card. He did not sign checks as POA — the mother physically signed them herself — but she reportedly had significant memory impairment and would sign anything put in front of her. She could not even complete a clock drawing test at that time.

There is evidence that the daughter, while previously acting as POA, never took money for herself. Before the Alzheimer’s progression, the son had never received gifts anywhere near this size.

My question is: in New York, could this rise to criminal elder financial abuse, exploitation, larceny, or breach of fiduciary duty by a POA, even if the son argues the money was all “gifts” from his mother? Does someone acting as POA have a fiduciary obligation to stop taking money from a cognitively impaired parent rather than facilitating large transfers to themselves?

**\*\*\*\*Part 2 / Additional context:** Once the daughter realized what had happened with the POA and also saw that her brother was not facilitating the 24/7 home care their mother qualified for, she petitioned the court for third-party guardianship. The son was reportedly leaving their mother alone overnight and for extended periods during the day despite her condition and care needs. The court granted third-party guardianship relatively quickly.

The appointed guardian’s position is that aggressively investigating the son right now could upset and agitate the elderly mother (the guardian’s ward), and that the daughter will have to wait until her mother passes away to fully pursue the issues.

Does the fact that third-party guardianship was granted relatively quickly suggest the court already had serious concerns about the son’s conduct/capacity to care for her?
Is it really true that this cannot be investigated until the mother dies, or can APS, law enforcement, the DA, or another authority investigate financial exploitation while she is still alive?

**Additional question:**

How are cases like this usually proven if the elderly person physically signed the checks herself?

The concern isn’t forgery, it’s whether someone with diagnosed Alzheimer’s truly understood what she was signing or the amounts involved. The massive “gifts” only started after cognitive decline and were far outside anything she had ever given before.

Also, if someone is acting as POA, don’t they have a fiduciary duty to protect the person’s finances rather than continue accepting unusually large checks from someone they know is cognitively impaired? Or can they simply argue, “She wanted me to have it, I’m her son!.” The line becomes blurred. Morally, everyone knows this is wrong. But how can it be proven that the incapacitated person was not lucid each time she signed a check (or at least a majority of the time)?

I've been lurking mostly for a couple of months. We (my sister and I) got my mom's(74) diagnosis in March. We've been seeing the decline and would mention it to her (mostly my sister, who lives next door)and she would be IRATE. I'd try to smooth it over by saying it's normal to "slip" some as we age. ANGRY tirade to follow. My mom has always been super independent. Anyway, mom's neuro did an MRI and a blood test (as well as a family history- her grandmother, aunt and now first cousin (75) is also traversing this path) to determine that yes, she indeed has ALZ. Monday, was mom's 6 month follow up with her primary care doc. This man sat there and said "that blood test is new so I don't really trust it. And your quick checks looked really good." - I HAD to mention genetics. And a look over at my sister and I and he tried to back peddle what he'd said. I was LIVID. I'm I overly sensitive or was that unprofessional?

Bonjour,

Je viens vers vous pour me confier.

J'ai perdu ma mamie il y a quelques années de démence. Ce fut un moment très bizarre car je ne la voyais plus depuis environ 10 ans. C’est surtout pour ma maman que ce fut difficile.

En 2021, jai commencé à me plaindre de pertes de mémoires. On m'a fait une IRM ainsi qu'un MMSE, rien. En 2022 je suis tombé en dépression. J'ai rencontré une neurologue qui a recommencé des test MMse. Pour elle tout était ok. J'ai donc pris des antidepresseurs en écoutant la parole des médecins. Cest a ce moment là que les choses se sont dégradé avec ma femme qui venait d'accoucher.

En 2024, la psychiatre qui me suivait m'a prescrit une iRm , rien n'a été vu. En trois ans de suivi, pour elle je n'avais rien hormis ma depression. 3 ans de Venlafaxine. J'ai commencé a avoir des problèmes de concentration et des difficultés a gérer mes comptes. Ma mémoire a court terme s'est effondrée ( j'ai très peu de souvenirs de l'année 2025 a part certaines grandes lignes comme les vacances avec mes enfants)

J'ai arrêté la venlafaxine en février. Depuis tout ses problèmes me genent dans la vie de tous les jours notamment au travail. J’avais une formation qualité hier et je suis incapable de me rappeler une seule discussion en rapport. Alors qu'une collegue me dit que jai beaucoup participer. Mais pas de souvenir.

Jai aussi des difficultés niveau sommeil. je me réveille vers 4 h du matin et je ne me rendort plus.

J'ai contacté mon medecin il y a trois semaines. Il était assez inquiet pour me prescrire une nouvelle IRm et un bilan avec une neuropshychologue. Je la rencontre début juin. J'ai beaucoup d'appréhension. Surtout que je suis séparé d'avec mon ex femme et que nous avons deux enfants (5 et 3 ans)

Je ne veux pas déranger avec ce post au milieu de personnes qui vivent avec la maladie ou qui accompagnent un proche. Je confie juste mes angoisses.

I’m not even sure of where to start because it’s A LOT but I guess I’ll just give some background and context of what’s going on with my family. I’m 17 weeks pregnant and currently my husband and I are moving out of my parent’s house within the next 2 weeks. About a year and a half ago we moved in with my parents to help out for a while since my dad (83m) was diagnosed with bone marrow cancer and my mom can no longer drive.

To say it briefly it has been tough, trying to work full time (same with husband) and supporting my parents through this. My dad has not made it any easier and neither has my mom, they are very difficult to live with and my mom has been very “poor me, woah is me” crying to family members and friends about what my dad is going through and also now saying how she is getting sick (she’s not sick, doctors keep telling her she’s fine and just has GERD). So, I’ve been the main one taking on the decision making and picking up the slack with my dad’s things. However, I am now 17 weeks pregnant with my husband’s and I’s first child. The whole is very excited and so are my parents. But this has taken a toll on me.

Then this past month we’ve noticed a decline in my dad’s health, his behaviors/mood (very irritable and lashing out), cognitive reasoning, ability to talk (doesn’t make sense and we have a hard time trying to understand what he’s saying), and forgetting a lot of short term memory things. I’ve been on them with taking him to his doctor to see what’s going on, and if it’s something to do with his cancer treatment, medication, etc. Since my husband and I are moving out in 2 weeks because living here has become too much and I need to focus on my health, stress, and the baby.

Well, they went yesterday and his PCP at Kaiser diagnosed him with early onset dementia. They called my older sister who lives all the way down in LA with her husband and kid (we live in the Bay Area) and let her know what happened. Then my sister called me and my husband and I spoke with my parents when I got home. I’m not sure what steps to take and my mom is worried, scared, crying off and on (understandably so) but I need her to step up and become the adult. She is still very aware, cognitively present, but has this very Filipino mindset of “my daughter needs to be the one to help me with this burden” but right now I just physically and mentally can’t and need to focus on my pregnancy and when the baby comes.

I guess what I’m asking is for some advice on what needs to happen next? How should I get my mom on bored and step up? How much do I need to be involved in while navigating motherhood for the first time, or do I even get super involved?

EDIT/CORRECTION: Since people keep focusing on the “early onset” part, apparently they misunderstood but I’m just quoting what my parents and sister told me on what the doctor said. But that’s not my main focus, I’m asking for next steps, advice, or other people’s stories/experiences.

This past weekend, my Alzheimer's riddled mother said the most hurtful thing she could've possibly said to me. I've grown accustomed to being berated about things she's imagining about my current behavior. The number of times she's screamed at me for "trying to control her whole life," or "treating her like an old idiot" is hard to tally. But while I haven't always done a great job of not responding, I've always understood it's the disease talking.

This was different. This was about something in the past. Something that predated the Alzheimer's. Not something imagined or confabulated. It feels much more like this is what she always thought of me, and her lack of filter is now letting it seep out.

I honestly don't know if I can see her anymore. The guilt of that is killing me.

I’ve been trying to better understand what this looks like when someone with memory issues is still living at home, even part of the time.

One thing that keeps coming up for me is how much uncertainty there is in between check-ins. You can call, you can visit, but there are still long stretches where you don’t really know what’s going on.

I imagine for people who are actually living this, that “not knowing” feeling can be pretty heavy.

I’m curious how you deal with that in practice.

Do you rely on routines, or do you have something in place that gives you more confidence day to day? Or is it just something you learn to live with?

My beautiful, hilarious, incredibly witty mom (66) was diagnosed with dementia last year, and my sisters (32/32/35) and I were recently talking about this weird reaction people have when you tell them or they learn.

Without fail, someone immediately jumps to a story about their great grandma Gertrude doing something “crazy” or unintentionally funny. And it used to PISS me off. In my head I’d think:

“That’s not your mom. The smartest person you know with the vocabulary of a thesaurus. The person who raised you to value intelligence, humor, curiosity, education, all of it. That’s not your mommy.”

But something eventually clicked for me. Communication is really just people trying to connect. Most people genuinely do not know what to say, so they reach for the closest experience they have. Alzheimer’s is such an uncomfortable disease for EVERYBODY. Talking about it is the epitome of uncomfortable, but it isn’t fair for me to hold others to a standard of behavior when their intentions are based in compassion deep-down.

Once I started looking at it that way, it started feeling less like ignorance and more like people trying their best.

Hope this helps someone, and 👏🏻fuck Alzheimer’s 👏🏻

Has anyone used Semax for early stages of dementia? I heard good things about it for the brain, just wanted to know if anyone has any experience. TIA!

Not trying to deflate anyone's expectations, but it may be an important thing to (re)consider the actual efficacy of some of these treatments.

But, there are several more in the pipeline that will hopefully help.

I completed the three packets to file for disability for my 62 year old sister with Alzheimers. Today we got letter to appear at social security office to have review by a doctor. Feels like better than a flat no? Right? My anxiety is that I’m imaging a brief few questions that won’t truly show how incapable she is. You know the draw a clock deal. In reality she can’t handle meds or money or laundry or much past peanut butter and jelly.

Anyone been here? Expectations? Any tips or encouragement? Thanks.

I’m numb. Devastated. Relieved. Grateful. Somehow all at once.

Alzheimer’s is a cruel fucking beast. There is nothing graceful about watching someone you love slowly lose pieces of themselves while their body keeps fighting to stay. The ending can be unimaginably hard. Watching suffering stretch on and on changes something inside of you.

And yet… when peace finally comes, there is also relief woven into the heartbreak. Relief that they are no longer trapped. Relief that the fear, confusion, agitation, pain, and exhaustion are over. Relief that everyone who loved them can finally unclench their shoulders for a moment, even while crying so hard they can barely breathe.

I don’t think people fully understand caregiving until they live it. The anticipatory grief. The sleep deprivation. The frustration followed immediately by guilt. The way your entire nervous system starts living in survival mode while still trying to show tenderness and patience every single day.

To all the caregivers out there: you are stronger than you know. Truly.

Keep going. Keep going. Keep going.

Even when they do frustrating, irrational, heartbreaking, or downright asshole things because this disease steals regulation, memory, personality, and dignity piece by piece. Keep opening your heart anyway. Keep choosing compassion anyway. Not perfectly. Just honestly.

This experience broke my heart wide open, but I also think it deepened my understanding of love in a way nothing else could. Love is not just celebrating someone in their best moments. Sometimes love is sitting beside suffering and refusing to abandon someone while they walk through the hardest part of being human.

We made it through beside her. And I know we’ll be forever changed because of it. A heart that breaks while continuing to love does not come back the same. Maybe stronger. Maybe softer. Definitely more aware of how fragile and sacred life really is.

So hug your loved ones. Sit with them longer. Say the thing. Put the phone down sometimes. Hold their hand. Listen to the story again even if you’ve heard it 50 times.

And if you’re currently in the trenches of caregiving feeling exhausted, angry, grieving, touched out, isolated, resentful, loving, terrified, and deeply human all at once - I see you. I really do.

I’m sending so much love to every caregiver tonight.

Hi all, I have a quick question. My mom has alzheimer's and is needing increasing aide care. As many of you know, aide care absolutely blows through money. She meets the income level to qualify for the PA Waiver for home care assistance, but she has squirreled away savings over her lifetime, and the minimum is $9k in PA, which she is above (~200k in savings excluding her house which is valued at ~300k). In another lifetime I imagine she saved this for her children, but the reality is we need this for her care over the next few years. We prefer to have her stay at home rather than an assisted living situation, because she would rapidly decline there.

My question is, HOW can families wait until savings gets THIS low ($9k) to apply for the waiver? That is dangerously low and wouldn't support her in an emergency, plus it takes time for the paperwork to go through. I was told on the phone we can transfer "some funds out" and provide a justification as to why when we apply. How much out?? I googled around and Medicaid doesn't want to see more than 19k transferred out over a 5 year period.

What is the minimum in savings one should have to apply for the medicaid waiver for in-house assistance? We can spend down what she has, and then apply, but I need to know when that should happen.

Thank you all so much. I am desperate here. I have spent thousands out of pocket over the past year because I didn't want to dig into her savings, only to realize that we need to spend down her emergency/retirement funds completely. She has been rapidly declining and will probably burn through this savings pile quickly. If we spend down EVERYTHING, how will we fund anything going forward? clothes, food, etc? I am so confused 😞

I have a sibling that simply procrastinates and then over-engineers solutions and makes a big deal about self-appointed tasks that don't really help. I wind up doing everything my self, medical visits, supervising aid, paying bills and addressing the small problems that prop up like choking solutions and diaper solutions. He buys vitamin water and just makes visits

My mother (70, diagnosed 2yrs ago), is living in assisted living. In the past few months she has started taking things that aren’t hers. It started with clocks around the building because she was obsessed with what time meals were at. But the clocks would have the batteries taken out and be hidden in drawers. Then I found out from the staff that she was stealing pagers off the medication aides carts. Last week I found a cordless phone (again, from a med aide cart) and two more clocks. This week I found an arm blood pressure cuff and another pager.
Has anyone else experienced this with their Alzheimer loved one? Is there any stopping it? We bought her a big digital clock with date, time, etc but she ended up unplugging it and putting it in a drawer because she said she wasn’t sure it would change over to the right time the next day. ??
But also, if you have a resident stealing stuff off the medication aides carts aide carts maybe don’t leave them unattended in the hallways?

Has anyone’s LO ever had a card left by Adult Protective Services? We are concerned about who would have reported this.

He lives with my mom. She is a hoarder, but he is not neglected. She is embarrassed and upset that this could be the reason.

What type of action can APS take? The plan is to call first thing in the morning to ask why this even started in the first place and who reported it. Thanks in advance!

My DH (62, mid stage) keeps asking “is there no cure?” “Isn’t there a new pill we can try?” He’s aware of his condition and decline and it’s heartbreaking. Do I lie and fabricate a “magic pill” or do I just cry along with him? He keeps finding BS supplement ads on his phone, convinced he’s found THE cure that the drug companies don’t want to acknowledge.
At what point do they stop asking? This effing sucks.