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Last Infusion and Encouraging PET Scan
Today I get my final Leqembi infusion, completing the course of 40. Last week, I saw my neurologist to go over my final PET scan. It was negative. No detectable Amyloid plaque. Amazing. <Bob gives a big exhale.> The doc offered options for maintenance. They were: Monthly infusions at the infusion center. Weekly self…
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Doctor prescribed 2 different medicines at the same time.
My sister is the main caregiver, but I have concerns. My mother, who has the dementia, went away for a week and had a uti, and loss of appetite, and lots of picking. She put a call into doctor and doctor prescribed antibiotics, and remeron, and zoloft. Took her off the buspar. And added the 2 new meds. My concern is that…
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Mom (MS-LS, more LS) just broke her hip in Memory Care
Hello, Long time lurker, first time poster. Mom (88) was ambulatory with walker in MC with what is probably early Late Stage dementia (word salad, often incontinent, but still sometimes in on the conversation.) She fell and broke her hip early AM yesterday. We were told she is not a candidate for surgical repair - between…
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Wife with Early Onset Alzheimer's
Hello, My wife is almost 41 and late stage 5 with EO. Both her brothers as well as her mother have already passed from the disease. Its been a struggle lately to say the least but both my parents and her parents are watching her during the day. We need to transition to a caregiver for 30-40 hours a week while I work. We do…
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The Cavalry Is Not Coming
Reposting for the new platform. I have not posted here for quite a while, and I want to let you know that I am still here. I hope you all are doing well, and I also have a thought process to share with you. October 1, 2022 will mark seven years since my wife’s dementia became obvious, and that I knew for certain that this…
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Neurological Symptoms
I am here because my DH has been struggling with short-term memory loss for a couple years now. We don't have an official diagnosis yet, but the general consensus seems to be vascular dementia. He asks the same questions over and over again, as if on repeat. We went to his niece's wedding, and then he forgot she got…
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Take a cruise?
DH sooo wants to travel still. He is in late stage 5, some into 6. He is continent, unstable but still walking especially with me beside.. He is very opposed to using a wheelchair. He knows me, does not sundown, is compliant. He has limited vision so doesn't wander. I would like to travel, too, and I worry about logistics…
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What do you do with your big feelings?
What do you do to keep from exploding inside? (That’s an exaggeration of course.) I’m at the beginning of this long ride and I don’t know how you all do it. My DH keeps forgetting things we’ve agreed to, like replacing our old couch, or planning a trip to visit our grandkids, etc. So, we have the same…
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Not Sure Where to Turn
The last 5 years have been a roller coaster. No doctors agree. Some say dementia. Others say not. We've been chasing a diagnosis and hopeful for any help. It's gotten to the point where I know it is dementia. My wife and I are 61 years old. I need a doctor who cares and doesn't want to spend 5 minutes once a month and then…
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Frustration and Delay getting ID
Yesterday was a day filled with frustration trying to arrange what I would think would be a simple procedure. I want to replace my DW's (now expired) real ID driver's license with a Massachusetts real ID. The procedure is handled by the RMV. I've now realized that my DW no longer has any kind of valid ID for government…
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More about spitting…
It’s been a long time since I’ve checked in. My husband is still going strong physically and he’s on eighteen years since learning he had a diagnosis of MCI. Probably twenty five years if counting behavioral changes proceeding memory loss. He’s considered to be in advanced stages of loss of cognition, but I’m not…
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FTD - Frontotemporal Specific Staging Tool (by Dr. Tam Cummings for FTD)
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New here~~~~
I am not currently experiencing symptoms of Alzheimer's but have been placed in a clinical trial for "pre-clinical" Alzheimer's. I'm APOE 2/4 and have experienced 2 incidences of ARIA E. I'm concerned about continuing in the trials. Any input???? and HELLO everyone!
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Knowing doesn't change the losses
I am recently DX'd w/ early onset Alzheimer's (who I call Al, who is friends with my other guy ARThritis). I am a Former Alzheimer's specialist serving as the director of a local Alzheimer's association, Developer and creator of residential services and, in my youth, a personal care worker for those with Alzheimer's. None…
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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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ER visit, then more decline??
Yesterday I had to call 911 as my mom passed out and gasped for breath as she was trying to enter the bathroom. She said she couldn’t straighten her back, so I got a chair behind her so she could sit and then she loss consciousness. In the ER she was treated for hypotension and dehydration. A cat scan (? stroke) was…
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Adolescent Behavior
My DH who I think is in beginning to mid stage 5 acts like a 12 year old. I work full time but when I get home the constant wise cracks and jokes begin. We can’t have any kind of conversation or watch tv because he is constantly trying to make funny wisecracks and sexual innuendo’s. Anyone else experience this?
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In home care for parent- does not want help.. Los Banos, california
hi everyone, my mom is sliding quickly with memory and mobility issues. Still wants to cook and take care of inside of house. Memory problems are getting worse by week.. does not see this.. refuses care outside house. Need someone to come in periodically… where do I start? Thank you everyone
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Heart Breaking
I can’t get over how sweet and normal my DH seems. Sitting watching Love Actually for the 3rd time this season, laughing really enjoying the antics of ‘Miss Dunkin Donuts etc, having a curried egg sandwich for lunch and then he tries to say something and the words won’t form, I try to have a conversation with him and he…
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Clinginess
Hello all- I was going to reply to another post from a few days ago because she specifically mentioned the increase in unwanted opinions from her DH and so this is related, but also I am kind of thinking perhaps a precursor to shadowing maybe? Want to see what you guys think and what your experience has been. Anyway, my DH…
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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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Showtiming Is Fascinating
My husband (56 with EOA) recently had a 4-week hospital stay due to Ulcerative Colitis, which led to blood clots and malnutrition. He is currently at home. He can barely walk. He eats maybe 500 calories a day. He argues with me about taking his medications every single morning. He did the same thing in the hospital and had…
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Beautiful video… they are always with us..
My step daughter sent me this today. She lost her Dad (my husband) August 2024 and is fighting breast cancer. Please pray for her. 🙏🩷💜https://www.facebook.com/share/r/1H4g5iJ38G/?mibextid=wwXIfr
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Moving to a Care home.
My DW is being moved to a care home. She constantly screams at me. She has been in the hospital for 5 days now. Tomorrow she will be moved to a care home. Today I got her bed etc. moved to the care home. Tomorrow the hospital will move her to the care home. I'm so tired, drained and hurt. She spent most of the day…
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A new task, self catheterizing my husband
I knew when the urologist informed my husband he needed to learn how to self cath, that meant me. The list of skills I have acquired as a caregiver gets longer and longer. It never crossed my mind this would be in my future. I have now done it successfully 8 times. Enlarged prostate with frequent UTIs and reduced ability…
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Merry Christmas?
My DH is Stage 6, mostly cognitive age 4. He was diagnosed 4 years ago. Because he was an athlete, he is very physically strong. He still has joy for our dogs, loves to eat, and mostly easy going. Until he's not. I took him to cut down a Christmas Tree as I want to give him a nice Christmas. His family have not stepped up…
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Learning to grieve
My mom was officially diagnosed with early onset Alzheimers in January, although she has been showing symptoms for quite some time now. My mom and I have always had a close, yet complicated relationship as she was a single parent and she had a hard time "letting go" of her baby. Back in August, she had ended up with strep…