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Share your Story with the Alzheimer’s Association
The Alzheimer's Association is dedicated to ensuring that everyone facing Alzheimer's or another dementia is able to access a timely diagnosis, available treatment options and quality care throughout their journey. To better understand the barriers people currently face, we are looking for people to share their experience…
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Moved: ALZConnected Q&A Thread
This discussion has been moved.
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Where has my husband gone? Loss…
I find myself asking that question often. He’s here physically, but he is not the man that he was when I married him. I feel so sad today. Yet it doesn’t bother him as much since he doesn’t even realize how much he’s changed. he’s inside the grocery store while I’m waiting in the car because I just don’t have the patience…
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US SSA does not recognize POA
This may be well known to most of you, but it was news to me only a few days ago. Social Security agents could not talk to me about my dad’s benefits, since SSA does not accept DPOA. I had to apply directly to the SSA to be a “representative payee.” It would have helped if I had known that term! The process was not that…
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Brand new. Need help.
I can't get my DW to go to a doctor, much less to get a diagnosis. She refuses to talk about the possibility of her getting D. It runs in her family. She is very functional but showing personality and memory changes over the last several years. How do I trick her into going to a doctor then getting the doctor to perform…
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I need help making a decision about supplementing food intake in late stage 6 DH
My DH is in late stage 6 dementia. He is almost non-verbal, double incontinent, in a wheelchair and unable to do anything for himself without assistance. He has been moved from a MC facility to skilled nursing because he requires so much help. He has to be fed, but he eats well and taps his finger when he is ready for…
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Anyone else taking care of otherwise healthy dementia patient?
Taking care of 85 year old with late stages but body is amazingly healthy, amazes the nurses and doctors each time,,,strong heart, good breathing, strong appetite, and can feed herself most of the time. One should be delighted right? But she is in late stages requires 24 care, is beyond any kind of converstation, but gets…
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Financially scary
If you have concerns about money handling, don't wait .
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GUIDE Program - Experiences?
Good day, I am the caregiver for someone with Alzheimer's. My LO's care provider has enrolled her in the Medicare GUIDE program, which is supposed to provide intensive case management to individuals with dementia who reside at home. Does anyone have experience with this program? Can you share what the program has done for…
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Sundowning - Changes when new people arrive
Hi, my 80 yr mom seems to be having some severe sundowing with Agitation and hallucinations . On the worst nights, we have gone to intervene for my step dad. When my husband walks in (or EMS or police) she seems to snap back into reality and becomes herself again. Is this normal?
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Evacuating in an Emergency
Greetings. When the Guadalupe River recently flooded, the police ordered everyone on my street to evacuate. It was a very scary experience. Here are some lessons I learned: It could happen to anyone at anytime Follow the directives of the authorities Be calm and be firm with your PWD Know where to go and how to get there…
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Ivermectin for dementia
Ivermectin gained popularity during COVID-19, where some people claimed it could treat or prevent the virus. The problem is, sometimes, news articles or social media can misinterpret early research and spread misinformation. When it comes to dementia, what most scientists and major health organisations, like the…
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Progression and caregiver changes
DH continued to decline with the rivastigmine and has developed significant hallucinations and a persistent delusion about a dead friend who isn't dead. The companion who had been with him almost a year quit because he couldn't tolerate DH's rants and accusations. He was started on Trazodone and Buspirone due to his…
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Dr. took mom off all meds
My mother was on Memantine, Donepezil and Quetiapine. The first 2 caused her explosive, continual diarrhea the last caused her extreme skin picking. This is the 2nd day and I have noticed that she is better so far. I read where Quetiapine should never be given to Alz patients, but at the day care center everyone of them…
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Not much support from family,
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Forensic Psychiatry
Neurologist suggests my wife suffers from Anosognosia as well as Alzheimer's. Doc is suggesting testing by a Forensic Psychiatrist with an eye toward legal Guardianship. Anyone with this experience care to chat with me?
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Near the end
Lately, my (66yr old, stage 6, early onset) husband has been taking his penis out and peeing on the floor as he's walking to the bathroom. Two different sources have told me they saw this behavior, "near the end." Does anyone have experience with this? If he truly is "near the end," I'll 1)Ask hospice to assess him again.…
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From the NYT: What to Do When a Loved One was Diagnosed with Dementia
https://www.nytimes.com/2025/06/25/well/family/dementia-diagnosis-advice.html?unlocked_article_code=1.Rk8.WazS.hyIqt9FeloJq&smid=url-share This talks about next steps and how to prepare for them. It's pretty basic, but might be good for someone new to the disease. HB
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Article -re: "Lying" aka verbal coping skill New Yorker article
Long but thought provoking dated 2018
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10 Absolutes in Dementia Care list
Recently shared by another member here. Thanks @Chug
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From Kerrville, I Thank You ALL for your Thoughts and Prayers
Greetings everyone. My family and I are safe and accounted for. I'm sure you are aware of the tremendous damage in Central Texas. The loss of life is unimaginable and heartbreaking. I am grateful to everyone who has reached out. Your thoughts and prayers lift me up and keep me going. The community and I sincerely feel the…
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Not sure the MC facility has my mother's ADLs addressed
About three months ago I noticed a few things lacking in my mother's room regarding her personal care. One was that she did not have any toothpaste, shower soap or washcloths. I wondered how they were properly bathing or brushing her teeth. I also noticed the toilet paper roll was down to the last few squares and there was…
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HEARING AIDS
This is a very practical question. My wife has mid to early late stage dementia. She has delusions and hallucinations about "a man" who comes into her room and removes, moves, or takes her things. Because of this, she routinely hides her hearing aids. This usually happens before she takes a shower or before she goes to…
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Sister care giver♥️
I am 16 years younger then my sis who is now living with me and my Husband and grown children and my granddaughter . She is forgetting who we are earlier each day. And constantly wants to go home. I my sister has been my rock my whole life and I’m not sure I can keep doing this it’s making me sick , high blood pressure…
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Hallucinations
I am the 24/7 caregiver for my wife who suffers from mid to early late term dementia. She has had various hallucinations, usually after wakening in the AM, but recently has had one that repeats itself, and she bring it up all day long. She repeated insists that "a man" comes to her bedroom and disrupts her things by either…
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Books about Alzheimer's Disease
I want to start a thread for books regarding Alzheimer's Disease and caregiving. I invite anyone with a pertinent book about Alzheimer's Disease or the other dementias to post. If someone has the link for Understanding the Dementia Experience, please post it here, so new members can readily find it. The first book I want…
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What tests did they use to diagnose your loved on with Alzheimer's Disease?
My mother is currently in the processed of being diagnosed. The doctor is doing a few blood tests to rule out reversable causes for the cognitive difficulties but otherwise says no tests are needed besides a brief cognitive measure (MOCA) to diagnose Alzheimer's. What was your experience like? Did they do more testing or…
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Only Mean to Caregiver
My 89-year-old father was diagnosed with Alzheimer's 6 months ago. He reserves all his anger, paranoia and hurtful words for my mother (caregiver). No one else sees/hears it. I am learning that he did this on a smaller scale for a lot of years but mom never told me until now because it has been amplified due to the…
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Links to helpful videos
Hello all! I was looking through posts recently and found one that was from a woman who has a PhD in Dementia care. It was very informative and helpful for the stages of Alzheimers. But I cant remember where I saw it. If you know what I am talking about, please post the link here. Also, I would love any and all videos that…
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Clinical trial Buntanetap
Is anyone participating in a clinical trial for Alzheimer’s treatment, specifically Buntanetap? We’re going in at the end of the month for a screening to see if DH qualifies. Please share your experiences.
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Any tips to help LO get into bed to rest on their SIDE?
Hello, My DH sleeps better if lying on his side, but he doesn't know how to get into that position, and weighs too much for me to put him into it by lifting or pulling. He suffers from apraxia, so has (cognitive) trouble with coordinated movements. If he starts by sitting on the bed (coming from the side), then lays his…
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Recommendations of Videos to watch
We are bracing ourself for a long haul ;) would love recommendations on Videos my family and I could watch to help us understand this incredibly destabilizing disease so far I watched a few videos from Teepa Snow , good but not very well filmed ..