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End of Year Musings
I want to wish all the caregivers a Happy New Year. I began reading these message boards seventeen years ago this week, in 2008. I had a diagnosis of cognitive impairment not otherwise specified and I feared that I might have Alzheimer's Disease. I read every thread on the two patient boards and on the one caregiver board.…
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Neurologist
How can I get an appointment for my sister before October of next year? UAB has no openings till then and no wait list to get on. The needs of the patient come first and it is a shame appointments are too far off when a train wreck is about to happen.
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New clinical trial for MCI
https://www.brightfocus.org/resource/the-ahead-study-can-alzheimers-be-prevented-or-slowed-before-symptoms-begin/
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Where to start?
Hello- new to this virtual support group and relieved since it looks like caregiver support options are limited where we live (central Kentucky). My main questions is how do caregivers orient where they (and the LO) are in this journey? And when to gage on the next step. Our story: I'm 38 and sandwiched between my 9 & 4…
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When you can no longer provide care
I came across this helpful post on another forum so I decided to share it. It's a response to a person in CA, so medi Cal is mentioned, but I feel like this is universally helpful. It was written by David Halpern, author of "Overwhelmed With Family Caregiving-Now take Control." It is very courageous for you to post your…
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Valuable resources from Michael Ellenbogen
Michael recently sent me this valuable information: https://mybrainguide.org/clinical-trials/ https://mybrainguide.org/?gad_source=1&gad_campaignid=23068332846&gbraid=0AAAABBAIqH7frDwN-d8NcMo_n74usOgPt&gclid=EAIaIQobChMIsNSssuzKkQMVoSvUAR0n_wuOEAAYAiAAEgLdy
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Lawyer appointment - successful
I met with a lawyer this morning regarding my sister's mismanagement of our mother's money. She is guilty of embezzlement and conversion. The remedy has to occur in stages. First the lawyer is going to send her a letter and suggest a payment plan, if she resists then we move in another direction. Also we, the other…
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My beloved is declining
Jacob (pseudonym) has been declining in the past few weeks. We are not married; I use the term "beloved" because we were destined for each other, and I will be with him until the end. I am so scared. he forgets conversations and events almost as soon as they happen; He is deeply traumatized by this and cries easily. Jacob…
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Freezing Credit with Experian
Does anyone have a guide or experience with freezing credit for Spouse with AD with Experian? I have checked their site, called their number, but can't find specific instructions for protected consumers. Number is automated, chat doesn't have any information for incapacitation. AI generated answer says to follow Experian's…
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Bible Verse to Lift You Up 12/20/25
SET APART FOR GOD Psalm 4:3 NLT You can be sure of this: The Lord set apart the godly for himself. The Lord will answer when I call to him. MEDITATION How wonderful it is to be included in the people God has chosen for Himself. How hopeful and joyful to know He will answer us when we call Him. His answers are always best…
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Security system
Hello I’m new to the community. My father was diagnosed 2 years ago with ALZ. This past he has had a rapid decline in cognition and I need to set up door alarms and locks. Does anyone have a recommendation? I am pretty tech inclined. Was looking at Simplisafe VS. creating a piecemeal system. Any suggestions welcomed!…
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From NYT: Study Linked Cheese to Lower Dementia Risk
If you like high fat cheese, you may have a lower risk of developing dementia, but may raise risks for cardiovascular disease. Shared article: https://www.nytimes.com/2025/12/17/well/eat/cheese-dementia-study.html?unlocked_article_code=1.-E8.81Oo.E1xhBSaBlICz&smid=url-share
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Medical Marijuana
I am the sole caregiver for my wife. Entering stage 7. RSO, gummies, or even flower. Will be helpful for anxiety of the patient and stress for the caregiver. I my case, the use of medical marijuana has added a dimension; a depth within myself and a enhanced relationship and empathy with my wife. Don't know how my wife or I…
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Medicaid Cuts, Inside Info or Tea Leaf Readers?
Spoke to a Medicaid attorney about father's remaining $ and an irrevocable trust. You lose 1 month of Medicaid eligibility for every $10k you set aside (in CO). Problem is, $1 trillion cuts are set to go in effect 1/1/27 so the attorney said he can't guarantee any outcomes at this point. If those stay in effect, the care…
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Useful tips and products
Hello, I remember seeing a heading like this in our last format, and it was very helpful. People just kept adding helpful hints and they were all under this one topic. I listed a few: 1) Shampoo Caps: These are a blessing for me, as my DH hates to have his hair washed. Thsy are efficient, neat, and they do thoroughly clean…
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Husband recently diagnosed with Alzheimer's.
I would love to hear from others who have been a caregiver for your loved one with what I need to do, be aware of, or what was the biggest help for you as you began your journey.
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Behavior/cognitive changes after discontinuing donepezil and memantine
My DH just entered hospice. He was on maximum dosage of both donepezil and memantine but the hospice doctor immediately wanted to discontinue donepezil and lower memantine with the goal of stopping it as well. First, let me say, it was obvious my DH’s physical ability was declining when he was screened for hospice, but…
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Can I Contact My DH’s Doctor Directly?
My husband has his own PCP and this doctor is very strict out privacy rules. In the past he has said I need to go through my DH if I want to send messages to him. What do I need to do to have the authority to speak with the doctor on my husband’s behalf? Is this when the DPOA comes in to play? Should I provide a copy to…
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The day will come…
I saw this on Facebook and it could have been written by many care warriors here. The line that hit home to me is: “Have a plan then make another”. 💜 This moving commentary was written by a daughter, caring for her mother. Dear ones, The day will come when your loved one can no longer be alone. Not even for 5 minutes. The…
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FTD - Frontotemporal Specific Staging Tool (by Dr. Tam Cummings for FTD)
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Travel
My DH is about 5 years into it now, he was a very active, intelligent man. Now he mostly sleeps and watches TV. We have always traveled to Arizona from Mn. to avoid the harsh winters. We did share the driving but now of course, I do all of it. But Im worried how he will do on 4-5 days of travel and motels. I've read that…
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New to Alzheimer's
Hello all thank you for providing a network of caregivers to help guide others through this horrible disease. My grandfather was officially diagnosed over a year ago with Alzheimer's. I am his MPOA and am new to all of this. I am just wondering if anyone has any advice on the following. He has UHC Medicare Advantage and I…
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Alzheimer's Screening and Prevention (ASAP) Act introduced in Congress
Saw this and thought I would share. It's a start and hopefully will lead to much more. https://www.alz.org/news/2025/house-introduces-bipartisan-legislation-asap-act-alzheimers-screening
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Mom is about to be homeless, how do we decide what to do?
Hi, my mom was diagnosed with ALZ just about a year ago, but we had been noticing decline for about a year before that. She has progressed significantly and now I believe is in early Stage 5, but with some characteristics from the later stages. She has been living with her partner (long term relationship, not married, they…
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Early onset Alheimer
My brother 62 has been diagnose with Early On Alzeheirs could someone share what does a through evaluation look like: what does the team who would look over his care look like: what are question he should be asking: I need specifics because as of now, his primary care doctor is making all the calls on his treatment plan…
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Does anyone else feel this way?
I’ve been on this site now 3 yrs ever since wife diagnosed with mild Dementia, I’ve read books seen videos and heard numerous stories on this site. Wife in stage 4-5. Still takes care of herself other then no driving and cooking and short memory has gotten worse and does get confused. My question is do any of you feel that…
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Terminal Lucidity?
My dad fell two months ago. Seemed to have accelerated Alzheimer’s. He pretty much stopped eating since and recently was only drinking very little. This past week he was admitted to hospital with severe dehydration. The dehydration caused his heart rate to accelerate to 130-140 and blood pressure to be lower at 95/60. I…
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Sundowning
Hello, I’m very new to this group and confused on this newly diagnoses of Dementia for my mother! We are still going through a lot of appointments and tests and we don’t have a actual diagnosis of what type of dementia my mom has but they are leaning more towards Lewy body because she has a tremor on her hand! My question…
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Not dementia but an aging game changer being tested
https://news.stanford.edu/stories/2025/11/joint-cartilage-aging-osteoarthritis-therapy-research "A new study suggests it may be possible to regenerate cartilage lost to aging or arthritis with an oral drug or local injection, rendering knee and hip replacement unnecessary." Years away most likely but good news .
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Anyone using Paxil for severe agitation?
My mom is 94 - diagnosed 11 years ago with Alz dementia. She has been in an advanced stage requiring full care for almost 10 years. Her neurologist advised us to try Paxil to help with her severe agitation. She is taking seroquel as well. She's starting throwing plates of food lately. Things are rough but I'm nervous about…