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New to the group: Dad diagnosed with MCI, what now?
First time posting here, glad to have found this group! My dad is a widower and lives alone. In the past few months, his memory and cognitive skills have noticeably declined. Primary care doctor referred us to a neurologist and my dad scored 20 on the MOCA. My dad was very agitated by the appointment, said he didn’t trust…
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Seeking Advise - I am 25
I am 25 and my mother was diagnosed with early onset Alzheimer’s at 60. I am new here and need help knowing what to do. She’s about in the mild/moderate stage. My father passed away 2 years ago and the only family around is my younger brother who is 22. She has a sister that lives about two hours away. Family and friends…
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Medicare and Leqembi
Hi! Anyone out there on Leqembi and have Medicare? My wife is on Leqembi and just turned 65 and signed up for original Part A and B Medicare. We’re wondering how much Medicare pays for Leqembi? And how much is left over for the patient to pay? The first few infusions were given when she was still on my BCBS insurance. So…
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Lecanemab 3 year data
We listened to a presentation the other day by doctor at Duke University. He mentioned there is 3 year data now on lecanemab. He presented the info in a support group for those who are getting lecanemab or who may be interested in getting it. Open Label Extension Data Shows Lecanemab’s Continued Effect on Alzheimer Disease…
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Costs of early to middle stage care
I am looking at purchasing some long term care coverage. One that I like starts benefits when I can't do two of the six activities of daily living (ADLs), like dressing, hygiene and eating. Others start benefits EITHER for that, or for having cognitive impairment. I assume that there are circumstances in which I could have…
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For Older Unmarried Couples, Caregiving Obligations Can Be Murky
Gifted link from the NYT. An article about caregiving issues specific to older unmarried couples. https://www.nytimes.com/2024/11/10/health/elderly-unmarried-couples-caregiving.html?unlocked_article_code=1.ZE4.JvyT.QUUSabGS4hNM&smid=url-share
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BIGGEST FEAR, DW MC and what about the whole SEX in MC with others?
Help me navigate the negative thoughts I am feeling. Let me start by stating. I am feeling a tremendous amount of grief. The person in my wife’s very fragile frail body is not the woman I married. I must now consider placement In a memory care home, but I cannot shake this. I have been taking care of her 24/7 now for over…
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New person, first post - Trying to be the rock
To say I'm frustrated would be an understatement - my dad was finally diagnosed with dementia/alzheimers along with anxiety, depression, and OCD/fixation. We could sort of see signs of something not being quite right with him a year or so ago and I had to push my mom to get testing done. The first specialist they were…
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Trying to Do What is Best
We are about to hit the wall with rehab discharge and getting my mom into AL instead of letting her return to her IL apartment. This is going to be very hard since her perception of her abilities and safety issues does not align with reality and she is itching to get back to her bridge games and friends. She has a left arm…
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Special needs trust
We’re meeting with a lawyer to go over our wills. There’s going to be a discussion about “self settled special needs trust” vs “third party trust”. My wife is turning 65 on October 12. She was just diagnosed this year. I’m thinking a third party trust would be fine. Does that make sense?
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Painful Delusions
For about 7-8 years my step dad and I were the main caregivers (we luckily eventually had in home care almost 24/7, but we still managed a lot) for my grandma with dementia, my mom completely checked out and couldn’t face it. It’s been about 8 years since my grandma passed and now my mom is showing signs. We are still…
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I didn't plan for this:
I am a fairly good planner. I was a project manager, so I know planning for things that can go wrong is wise. I have not planned for the case where I die before my DW. We have wills, POAs, and family members assigned to take over health care and financial matters. However, I have not planned for someone to take over the…
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Recommendations for senior communities
Hi, my parents are thinking about moving to a senior community in the Boston, MA surrounding area. They want a community with indep/assisted living/memory care options. They are also interested in not for profit facilities, since costs are so high in the Boston area. Does anyone have any first hand experience with any area…
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If you are not convienced, let me share this...
Most caregivers know that you should plan as early as you can. And plan for contingencies. Murphy follows Alzheimer's around like a puppy dog. (Murphy's law that says if anything can go wrong, it will.) My 81-year-old DW was officially diagnosed two years ago. She is now in stage 4 or 5, depending… She needed hip…
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Memory Care or Keep trying at home
Is there some magic way to know when the time is right to have your loved one in a Memory Care Facility? A tipping point? I don't want to, for some reason. But I'm exhausted . I feel it would be more for me than him if he went there. Is that the right reason? He is still considered early stage. But the care needed is…
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FIRST TIME PARTICIPANT: My AAIC code did not work.
All last week I tried to log into ALZ.org online to view sessions, but the staff wasn’t answering emails during the conference and is now in vacation until the 12th of August. Can anyone explain to me how to use the code I was provided to log in online? I learned today from a YouTube presentation that the videos only…
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AL to MC - need help!
I’ll try to make this brief. I need help deciding on a MC. Mom is 72 with AZ Lives in a corporate AL for the past 3 months Now needs MC MC unit at AL is full Have to make a choice between having her at the more expensive MC unit in mine and my sister’s town OR having her 25 minutes away for 30k less a year. My sister and I…
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Early onset VD/Alzhiemer’s
Hi all, glad I found this community. I haven’t met anyone I can relate to about my situation and it would be nice to have someone to talk to that understands. I brought my mother to the hospital the day before her 59th birthday because she was barely able to walk, could only move one eye, stroke-like symptoms. When she…
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Researching FACILITIES: Care Managers? Who to trust? What questions to ask? Where to begin?
My husband is only 56 and probably in stage 4. I understand that it's important that I research options for memory care now (or soon), because things can decline abruptly with early-onset AD. I got a list of "care managers" from the Alzheimer's Association hotline folks but they were careful to tell me that they "don't…
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POA
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55-year-old Early Onset: advice about WHEN he should leave work??
Hello, We are wading through so many stressful planning sessions these days. Currently our BIGGEST confusion is when/under what circumstances should my husband leave his job? He's only 55 and in the early stages of the disease. We have three kids living at home (21, 18, and 11) He's a candidate for Leqembi, which—if our…
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From The NYT: The Ethicist- Spouse with Dementia
I have so many thoughts on this starting with "has this columnist ever lived with a PWD?" https://www.nytimes.com/2024/06/14/magazine/husband-dementia-divorce-ethics.html?unlocked_article_code=1.z00.2GoA.8KLGpmxh2ufJ&smid=url-share
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Anyone have experience with BOTH parents at once?
My folks are 83 and 80, living together in their home. Dad was formally dx'd in 2022, after periodic hallucinations that there were 3 versions of my mother; he also had some aphasia but was sharp in other ways. Neurologist prescribed Aricept and it has helped a little. Mom has had mild cognitive decline for years, but it…
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Literally the Last Thing I Needed
Hi everybody, hope you’re all doing well. Bit of backstory to this predicament; my mom (60 diagnosed with ALZ) was a single parent to me (25) and my younger sibling (20). My sibling and I have separate fathers, mine passed when I was 7 and theirs is alive but not active in our lives. He was an abusive man to us and my…
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Coping with a father with dementia in my 20s
At the behest of my therapist, I am looking for the support of others going through similar circumstances as I am. I feel incredibly alone in my slow grieving process for my father, who is 68, and has been dealing with EO dementia for the last two years. I feel completely out of my depth as a 28 year old person without the…
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How to have DH let family and friends know of his diagnosis
Hi, I"m new here (although did use this site often when helping with my Mom who passed from Alz). THis time my DH has been diagnosed with demientia - though we haven't narrowed it down to a specific type yet. SO still early on. MY DH is still in denial or hoping something will "fix" the mild(his perception) issues he's…
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Young caregiver
Hi, I am a 25 year old young caregiver. For almost 4 years now, I have been the sole caregiver of my 58-year-old mother suffering from early Alzheimer's, since my father passed away in 2020 due to the pandemic. I am Italian, but given my mother's condition we moved to China, her homeland, to take better care of her. I…
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Feeling guilty about selling her things, her house. I know I'm not the only one.
Hi everyone, I'm sure there are many of you who have gone through/are going through this and would love to hear from you. My mom was diagnosed with dementia (we don't know what type) about 4 months ago. We had to move her into a memory care facility. I am now at the point where I need to sell her house, and probably have…