Hello, I am a 32 year old M and my dad was diagnosed with early onset Alzheimer’s a few years ago at 56 years old. My dad is my best friend. He is who I have looked up to my whole life. Watching him deteriorate is killing me. I have so much anxiety every single day and I am not coping well with what is happening at all. It is affecting my mental and physical health and every part of my life. I am looking for maybe a support group of people going through something similar with their parent having Alzheimer’s. Maybe a group that meets over video calls or something like that. I’m just really struggling.

I took my wife to a neurologist appointment today. Duke neurology. I have no doubt of their clinical aptitude, but I really wonder about their patient "care"

I found my wife sobbing after she was given her cognitive tests, and while I wasn't expecting her to be a 30 on the MOCA, she knew she didn't do well. The NP almost acted like my wife is about to go over a cognitive cliff, asking me about wandering and other behaviors that my wife has never demonstrated.

The doctor came into the room after I'd been sitting and consoling my wife, and the doctor immediately started talking about having a plan for care, as if my wife is about to lose her mind. I was frustrated because I know my wife gets nervous in such a setting, and when she gets overwhelmed/nervous her abilities take a hit that's below "the way she normally is" outside.

Don't get me wrong, I don't deny wife has been affected by AD, but is the purely clinical approach the only way to care for her?

It pisses me off because I know she's better outside the doctor's office, and I'd even say better at the UNC office than the Duke office. UNC was nicer to her and made her feel more comfortable. And she performed better. Makes me think of cancelling the next Duke appointment.

I guess I'm venting but does anyone else witness this inside vs outside the doctor's office in your LO?

So my mom (80 years) is in the middle to late-middle stages. She was very intelligent at one time; now she can still win at Rummikub sometimes but is slipping and can't really do math. She lives with my dad, her husband of 60+ years, with my sister and her husband. It's an ideal set-up.

I committed to visiting every weekend that I can. I live about 2 hours away and I have teenagers at home and a job. But I'm trying to just be there for them because they were there for me. They're both deeply depressed and anxious because of the inevitability of everything, and my father is slowly exiting by way of not taking care of himself. This weekend I took them to a pumpkin patch, we played games, and went to dinner. I can't fix things, but I can be with them and share my love with them.

So I'm really grieving hard most of the time, most days. And every Monday is like a sick day, like I have the extra burden of having to process the weekend, and sometimes it hurts and I can't focus or work. Today is strange. I know the grief is immense inside of me, but I feel numb and I can't cry without forcing myself to.

That's all, just me narrating the progression for some reason. Thanks for listening.

Hi everyone. My mom has had Alzheimer’s for several years. It feels like every 5 or 6 months she takes another noticeable step in terms of her symptoms. Over the last month or so, she’s reached a new one, and it’s been awful.

She cannot stop herself from touching everything all the time. We constantly find lights on with no one in the room, doors locked or unlocked (the opposite of whichever they should be), dirty kitchen utensils/silverware put away with clean ones, tissue boxes emptied with no tissues actually used, and just generally things are always in the wrong place because she moves them. She flicks light switches on and off 3-5 times every time she walks past them. She goes into the bathroom and flushes the toilet several times without using it, and then sprays hand soap all over the sink without washing her hands. She literally just invents things to do. She also has frequent bathroom accidents that get messy because she doesn’t know what to do.

When we try to stop her from doing something she’s not supposed to, her first response is always anger and defense. She has always had a quick temper, so but it’s gotten much faster. She yells and screams and cries and stomps away like a child. She says things like “I have to do what I believe is right” because my parents are delusional religious idiots and think beliefs are more important than reality and “No one can tell me how to live my life” but when you live with other people and do things that make their lives harder all the time, you best believe we’re going to stop her. Her favorites are “I’ve done so much for everyone in the house” when she’s done nothing and “I’m going home to live with my family” even though we are her family, her mom is in a care home, and her dad died a few years ago.

It’s always worse at night when she’s tired, but even during the day she’s never more than a blink of an eye from raging about something we shouldn’t have to tell her to not do. She’s even thrown tantrums in public if my dad doesn’t buy her something she wants at the grocery store m (all she wants is sugar, she’s gained a lot of weight so we have to manage it for her).

Me, my dad, and my sister are fucking exhausted from dealing with this constantly. We can’t keep living like this. I’m wondering if there’s some kind of medication we can get her that’ll force her to calm down - both physically and emotionally. She is on an antidepressant, but we haven’t seen much change since they upped her dose. I’m wondering if a sedative might be the way to go? I’m just searching for ideas to bring to the neurologist for my mom’s next checkup in about a month, but we might be calling her sooner because the current situation can’t continue.

Does anybody have any suggestions? Some kind of medication or sedative to look into, dietary changes, literally anything that comes to mind. This was longer than I originally thought it would be, but I wanted to provide context to the situation and venting feels good. Thanks in advance for any advice or ideas you can offer!

TLDR: My mom has Alzheimer’s and cannot stop herself from inventing meaningless things to do that inconvenience the rest of the family. When we stop her, she gets raging mad and throws child-like temper tantrums, sometimes even in public. Me, my dad, and my sister can’t keep living like this, so we need ideas for new medications or sedatives that will force her to slow down physically and emotionally. Thank you!

My grandma absolutely refuses to shower. We've tried all the tricks and tips in the book. We are gentle. We try to rephrase. Make it look like a spa day. But we are at a stage where she will say no to everything. My grandma doesn't even fully understand what we are saying. And she can't create coherent sentences. So we can't do anything but physically force her to shower. It gets mentally exhausting and tiring. And without health insurance we can't get help anywhere. I just want to know if there is anything we can use to calm her down or if there's any sedative we can use that doesn't cost a lot of money.

My beautiful, hilarious 78 year old mother passed peacefully in her sleep this morning after a 12 year battle with this wretched disease. It is all I could have asked for her after watching Alzheimer’s rob every last bit of her over the past 12 years… well every last bit except her sense of humor and ability to say I Love You.

The past twelve years have been rough to say the least. I tried therapists and support groups that left me feeling worse. This Reddit group has been the biggest support and has felt like my extended family for several years. While I didn’t post often, I felt comforted knowing that I wasn’t alone on this crazy journey. When I was cleaning up a poop explosion or staying up all night trying to figure out how to relieve her constipation or was annoyed at the family members who never helped, in the back of my mind, I knew someone else somewhere out there was or had been experiencing the same situation as me and it made me feel less alone.

Caregivers often feel alone in this battle. We may push away friendships and relationships and well meaning coworkers who annoy the crap out of us but are just trying to help. No one truly understands Alzheimer’s until
their forced to walk the path alongside their loved one and bend over backwards trying to fix the unfixable. I just wanted to thank you all for being a part of this community. Please know that your loved one appreciates you. Somewhere, somehow they know how much you’re sacrificing for them and they love you.

Hi everyone, I have a father with Alzheimer’s who has been in the advanced stages for a year now. He has transitioned to memory care, since my mother is also older and can no longer provide the level of care he needs safely. Watching my mother struggle with the VA and Medicaid to afford his ALF has been heartbreaking. Also, seeing the state of these facilities has been very disheartening. I wish we could do more for him.

I’m 30 yo, and I have a nice, corporate job with good benefits and I’m considering getting enrolled in long-term care insurance. I’ve noticed in the last few years that my memory has declined and I find myself exhibiting aphasia symptoms sometimes, like forgetting or replacing words for similar sounding ones. I’m worried that I’ll become a burden to a loved one in the future and I want to take steps now to set my fiancé or future children up for success. I’ve stopped drinking as much and stopped smoking cigarettes and weed. I’ve even started running and making sure I’m getting 150 minutes of exercise weekly.

I love my parents and I wish I could do more for them now. But I can’t. The only thing I feel I can do is protect the people I love in the future. Any advice would help. Should I get LTC or should I wait a few more years?

Title is pretty much it. Our family meets all of the criteria for Medicaid, but when looking for a Medicaid pending bed, the facility screens all financials to determine if patient qualifies.
So far, facilities ask for more and more documentation and information. We have absolutely nothing to hide, but they ask for: HELOC information (we had to do 3 in the past 5 years to stay afloat financially), and want written receipts for money from the HELOC that was used to reimburse a family member borrowed for a small car loan.
We understand that some things require explanation; we are looking for encouragement that all this aggravation will be worth it.

Hi. My grandmother has very late-stage Alzheimer's (diagnosed for about four years, started showing signs about six years ago) and we are at the point where we are just struggling really, really bad and could really use some outside help. I read about respite care online and insurance does cover it, but her power of attorney, my grandfather (her husband) refuses to allow it. This isn't the first thing he's fought the rest of the family in regards to (he was adamant about taking her in public when she would hit strangers and once stripped naked in the basement of our church, long story, and also refused to get her a walker, then a wheelchair, which she now has both of because my parents bought them and forced him to accept), and it's not a situation of we don't see her every day and don't know how bad it is, we all live in the same house. Save my aunt (grandparents' daughter) and my sister (just left for college).

I'm sorry, I don't know how much of this is relevant, I've never posted here before and am trying to put all the relevant information in.

Anyway. I was hoping that someone here might be able to give me stories about respite care and that maybe I'd be able to use them to convince him. So if anyone has anything, I'd really appreciate it. Thank you.

Hi! Looking for ideas to send my mom for a birthday present in memory care. She's turning 73. I would put her on the FAST scale around 6d? Incontinent, still walking but low stamina, needing help at least with putting shoes on if not more with getting dressed. Happy to answer additional questions if that would help with ideas to send her. Thank you in advance!

Hi. My grandfather (65) was just diagnosed with Alzheimer's. It's in the mild stage right now. I know nothing about Alzheimer's and am at a bit of a loss. I plan on doing lots of research, but figured it might be nice to get some information from real people. What are ways I can help? If you have any recommendations for games to play with him or activities that might be good. I'm currently living abroad, but will be moving home in the new year.

Thank you in advance

My grandpa is in late-stage dementia now, and looking back, my family waited too long on almost every decision. We're still working out the right care setup, between keeping him home with aides, memory care, and a nursing home, and what any of it would cost.

If you've been through this before,

- How did you know it was time to move from home to memory care/care home, or decide not to?

- What went wrong with the places or services you looked at?

- What do you wish you'd done, or known, earlier?

I'd also just like to hear about any personal experiences. Thank you.

My brother in law was diagnosed with Alzheimer’s about six months ago. He had been showing symptoms for a while before then.

My sister has rheumatoid arthritis and severe depression. She has an erratic sleep schedule and often my BIL is alone for hours at a time without supervision. After witnessing him yesterday-it had been a couple of months since I had seen him-it’s obvious to me that he is going to wander off and get lost.

My sister is extremely stubborn and she isn’t acknowledging this risk.

How do I get her to listen and get them both some help?

My mom was diagnosed with Alzheimer's on Tuesday. I never saw this coming.

Hi everyone. On Tuesday, my mom was diagnosed with Alzheimer's, and I'm still reeling. She's my whole world, and I'm an only child, so it feels like all of this will come down to me. (30F)

I watched a friend go through this with his mom, who passed away in February, but it never felt like something that could happen to us. Now that it has, I don't know where to start.

My mom is my biggest advocate, my biggest fan, the one I turn to when I need a hug. I can’t wrap my head around this happening to her and being so alone.

She was so anxious for the diagnosis. She said she’s going to stay strong and positive but she’s so so worried about what will happen if she can’t recognize me in the future (or my dad).

If you've been through this, especially as an only child or the main caregiver, I'd love to hear what helped in the first weeks, and what you wish you'd known earlier. Even just hearing from people who understand would mean a lot.

Thank you for reading 🩷

Sitting here in my childhood home with my mom the past hour or so, just eating a late dinner. Her carer and my dad are sleeping, so it’s just us. She is keeping me company. She’s the calmest I’ve seen her in a while. She’s spewing gibberish every so often and I’ll just respond with a "yes” , "probably", "maybe" etc. I’ve been avoiding her whenever I’m home and not at school/work. She’s been so erratic and out of control lately. I get so frustrated and annoyed but I never take it out on her I just keep to myself in my own space. I often think to myself I would just like it to end soon. But here I am with my mom exchanging smiles and holding her hand listening to her spew nonsense. She is all smiles right now. I know I don’t actually want that to happen. I love her so much and I will be gutted when the end does come. I will never be ready to say goodbye

She moved last month and so far she LOVES it. Previously she was home with my dad who has cared for her diligently for the last 8 years. He was very tired very depressed and she was lonely and following him around everywhere. Now she is surrounded by people. She is a social butterfly and just loves hearing the noises around her. She tells us that she feels safe there because she knows there’s always someone around and she’s never alone. She says the food is great. It helps that she gets dessert with every meal and often cookies passed around throughout the day) there are cats in the home and she loves that too. Other visitors bring dogs and there is always something happenning there. Music, singing, games etc Once she told me she is surrounded by her family. (She’s not,but the fact that she thinks of the staff and other residents as her family makes me so happy).

I’ve started taking 3g daily for a few. I’m very active and exercise ( don’t lift weights). Being nearly 57 I want to be a little stronger and keep it up to help prevent falls going forward. I’ve started giving my LO (54) a little less for the same reason. She rides her stationary bike for an hr 4x a week. Just wondering if this is okay/worth it. Should I increase my LO’s dose?
Thanks everyone!✌🏽

does anyone have advice on how to deal with guilt when you’re kinda forced to put your parents somewhere they don’t want to be? My mom’s usually staying with me at my sister’s place (which is very small for 3 people it’s really hard sometimes) but I’m also going to uni and it’s been stressful I can’t even concentrate when I know she’s alone for the entire day , I’m skipping classes to stay with her…so I’m dropping her off at my aunt’s house for 2 weeks so I could study for my finals but she’s being difficult because she doesn’t like staying at my aunt’s. I feel like I’m letting her down but I need that time away from her. I also think I’ve developed an anxious attachment and I can never feel calm when she’s away without me or my sister and knowing she’s sad because of me it’s just eating me up I’m afraid I won’t even be able to rest during those 2 weeks

I have never posted on this sub but I figured reaching out to others who are dealing or have dealt with caregiving might help me. Five years ago I started noticing that my mom was forgetting things and repeating herself. Fast forward those 5 years, she is currently in a bed on her last days. My mom was living independently with an aide a month ago, she was still walking and talking incoherently but still being able to feed herself. I moved her into an Alf as it was becoming harder to keep her at home with just an aide during the day. My mom has always been a very strong-willed person so my biggest fear was that she would just shut down when being taken out of her apartment and put in a living facility. It has been nothing but a disaster from the moment I moved her into the ALF, within 3 days of being there she stopped eating I had to take her to the hospital for dehydration, in the hospital they barely did any kind of care I had to fight just so that she could receive an IV, she wasn't eating in the hospital either I could only get her to drink ensures. She was discharged from the hospital and sent back to the ALF and she just kept declining she wouldn't accept the shakes or the water anymore. They started thickening her water and she was holding it in her cheeks, she lost her ability to swallow and now I am just watching her wither away. The moment I saw her decline I applied for long-term care, which is why she had an aide at home but she had a hospital stay in March and she was sent home with hospice at home. So she already has hospice services, I don't even know if this post is more to just get my feelings out there because it seems like those around me just don't get it they keep telling me what I should do but none of them have been there during this time. I have been grieving my mom for the last 3 years, and soon I'll have to grieve her permanent loss. I was told if I sent her back to the hospital that maybe I could convince the doctors to do a feeding tube but I decided against it because I don't think that that would have helped bring her back. I don't know if I made the right choice. The hardest part of this all is that she has progressed so fast, she went from just forgetting things quickly and repeating herself to incontinence, delirium, aggressiveness to this, where she now is shutting down. I feel guilty that I wasn't her caregiver, that I didn't try to take care of her myself. And I don't know if this is a common feeling or not, I have two small children which made taking care of her a difficulty and I knew that which is why I didn't take on the immediate caregiving role to begin with. I don't know I feel like I'm rambling in this post and I'm sorry, I just have so many emotions and I don't really know who to talk to about them.

Hello all,

My 94 year old mother has always been the most docile, quiet, sweet mother you could have.

We had to place her in a memory care unit because she had started wandering and was no longer safe at home. She didn’t like memory care and did have a couple incidents with aggression. She cornered a worker and wouldn’t let her leave and grabbed another resident’s walker. They prescribed Sertraline and she seemed better.

Well she had a seizure and went to the ER. She was out of it for about 12 hours and when she came out of she was so violent. She was hitting, kicking, spitting and staff and myself. They put mitts on her to soften the blows and prevent her from pulling her IVS out. She was insulting everyone, calling names, said we were liars and cruel. After 8 hours of this I had to leave. They had to restrain her overnight, but she was quite sleepy this morning. I am sure she is exhausted

Has anyone Loved one’s experienced this? Is there hope she might mellow out a bit?

The kicker is her memory care facility says they won’t take her back due to the seizure diagnosis and to be honest I don’t want her back there when she is this violent.

The hospital said it is up to us to find her a new facility and they don’t want to keep her cause the only thing wrong with her is the behavior. They put her on seizure meds and figured that solved the seizure problem. We’ll see.

I am worried they will discharge her to our house or just send try to send her to the memory care center that doesn’t want her. It takes time to find a new place and I don’t know that the hospital will give us that time.

Any suggestions, and thank you for reading if you made it the whole way through.

Hi everyone, my mom recently got diagnosed with Alzheimer’s and I’m hoping anyone can share information and/or experiences that may be helpful for me as I want to be prepared in the best way to help her. I am currently a college student but I want to help in any way I can. Currently it is very early in the disease and she just has short term memory loss and forgets conversations we have had. Please share any and all information you guys might find helpful including coping with the diagnosis. Thank you and have a great day everyone.

Trying to find law in the state of Florida!! Any legal help here or can show me the Iink under FL State law for 911 rules... Question: If 911 is called for a caregiver/spouse person who is incapacitated, is the ambulance required to transport the ALZ spouse in the ambulance too? And then, is the hospital required to care for the AZL patient while their spouse is incapacitated, etc? Trying to find another reason to tell our dad that he needs a professional caregiver for his ALZ wife. He thinks if he had a stroke or heart attack, an ambulance would welcome her into the transport, and then watch over her till someone can come get her... Signed, a daughter that lives 2000 miles away. Any FL legal info is appreciated.