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My essay on navigating the overwhelming journey of caring for someone with ALZ was published. Please
I lost my father after an incredibly long battle with Alzheimer's about 15 months ago. Wanting to help others finding themselves in the same horrible situation, I wrote an essay about the experience, which was recently published. I wrote it not only to tell my story, but to provide insight, guidance, resources, and to…
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Caregiver
Caregiver for my husband. He has Alzheimer’s. Urinary and fecal incontinence starting. Suggestions on how to handle. Becoming hard to deal with.
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Length of stages 6 & 7
How long was your loved one in stage 6 and stage 7….or for how long have they been? I think we’re mid stage 6….been here for about a year.
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My wife is becoming a chipmunk.
Something new going on. Now my DW, more than once, will "eat" something but, leave the food in her mouth without swallowing. For hours. I try to get her to open her mouth, but she refuses. EVENTUALLY she will open her mouth and I can see all the masticated food inside her lips and all around her teeth. With much cajoling I…
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Hypnagogic hallucinations
My wife told me she's been having trouble when trying to fall asleep because she's seeing things like vivid scenes of people and something like static on an old TV. We did a Google search and it sounds like hypnagogic hallucinations. We haven't been able to find any connection with MCI or dementia. But this is something…
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Bible Verse to Lift You Up 1/1/25
When Enthusiasm Is Gone Isaiah 40:30-31New International Version30 "Even youths grow tired and weary, and young men stumble and fall; 31 but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." me: When my enthusiasm…
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What planning?
I used to love the start of a new year and being able to plan events. After my mother receiving her diagnosis this past fall, it kind of feels like 2020 again when we never knew how long we would all be stuck. She’s doing well right now and I probably wouldn’t hesitate to leave her alone for a week, but I have no idea what…
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Disregard
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BIBLE VERSE TO LIFT YOU UP 12/29/24
WHEN EVERYTHING IS READY * WE WILL ALWAYS BE WITH JESUS! John 14:1-3 New Living Translation “Don’t let your hearts be troubled. Trust in God, and trust also in me. There is more than enough room in my Father’s home. If this were not so, would I have told you that I am going to prepare a place for you? When everything is…
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Bredesen randomized controlled trial
I recently listened to an interview on People’s Pharmacy with Dale Bredesen. He mentioned that he is the study chair for a randomized controlled trial for his approach to addressing a treatment approach for MCI or early stage dementia. Here’s a link to the page with more info about the trial…
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Vascular dementia
We are new to vascular dementia. My husband was just diagnosed a month ago, as well as frontal lobe syndrome,, , my father has dementia, but I’m finding this vascular dementia different. My husband pushed me yesterday. I’m wondering if there are any medications to help with his mood swings any input would be helpful thank…
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Handling SS and Medicare addresses when moving into facility
Hi, What do you do with your LO's Social Security address when s/he moves to a facility? My "understanding" is that it's linked to Medicare, so using any address other than the residence of the recipient will cause problems with the Medicare supplement and Part D plans in place that rely on the residence zip code. (I tried…
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Wonder if I have PTSD after my dad died
My dad passed away four months ago. I had moved him and my mom to an ALF approximately four months prior to dad's death. Their conditions at home had become unsafe. For one thing, I keep ruminating about the status of their living conditions at home prior to their move to the ALF. In my mind, I still see the glaring red…
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Change of living arrangements
Hi all, first time posting on one of these discussion boards but hoping for some help to support my partner as she navigate’s her grandmother’s dementia. Grandma (in her late 80s) has had several strokes which have accelerated dementia symptoms. Until recently she had been able to live somewhat independently in her own…
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Question about genetic risk and prevention
Hi, all. Sorry that we're all here because of this horrific disease. I have quite a bit of dementia and alzheimer's in my family, I'm trying to understand my genetic risk and any preventative measures I can take. In my family both of my maternal uncles, one of my mom's first cousins, my mom's grandmother, and my mom's aunt…
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Thinking of you
The holidays can be so hard. Thinking of you no matter what stage you’re in.
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NYT: A Woman with a Rare Genetic Mutation ... (FTD)
From the NYT: https://www.nytimes.com/2024/12/22/health/frontotemporal-dementia-genetic-mutation-linde-jacobs.html?unlocked_article_code=1.jU4.Pogt.lww3UxG0uYFK&smid=url-share https://www.nytimes.com/2024/12/22/health/frontotemporal-dementia-genetic-mutation-linde-jacobs.html
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From the NYT: The Lives They Led
This end-of-year article includes a section on Naomi Feil. You'll need to scroll down quite a bit to find it. https://www.nytimes.com/interactive/2024/12/20/magazine/people-who-died.html?unlocked_article_code=1.jE4.z51J.efbTs9_Va8M0&smid=url-share
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Christmas Cards
In a year filled with bad news, I am sitting here with a box of Christmas cards wondering what to write. I want to send cards; this is the only contact I have with many of the friends and relatives on my list. Caregiving is isolating enough without letting my last few contacts in the outside world slip through my fingers.…
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behavioral advice needed
Hi, A few months ago my husband and I joined a state funded Medicaid/Medicare association that provides day care, OT, PT, medical care, etc. So far it's been great for both of us as he is an 85 yr old with ALZ and I am his wife/caretaker, 75 year old with physical disabilities. We go 3 days a week to the daycare to give me…
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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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Mom is at peace
Mom passed away early this afternoon. My son and I were with her. I hadn’t been there very long. The change between last night and noon today was a lot. She’s at peace now. I’m continuing to feel numb - but l do feel relief.
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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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Compassionate Use or Expanded Access options
Is anyone getting any therapies through Compassionate Use or Expanded Access programs? I saw a comment from someone in a Facebook group who was considering TB006 a compound being developed by True Binding. So it made me wonder if anyone here has considered it or other experimental options that are in development.
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Inevitable Falling
I am sole caregiver for mother with later stage dementia. Hospice comes by 2 or 3 times a week, paid caregiver once a week, brother visits maybe once a week. That leave Mom and I alone … 76.2% of the week (yes, I did the math). Mom has started falling. A couple of bad falls, several (mercifully) mild ones. Two or three…
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Mematine smell?
Has anyone noticed an odor coming off their LO after starting mematine? My mother’s Dr added mematine to donapezil about a month ago. Lately I notice an odor when I hug her. She is early on and still keeping up with hygiene and clean clothes so it’s not a cleanliness problem. The literature doesn’t mention a smell as a…
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Help needed… grandfather thinks he fell in love with a nurse and had a big outburst, dementia?
I'll try to keep this as short as possible. My grandfather recently had a toe amputated about two weeks ago as it became infected (diabetic). He had to then come home on IV antibiotics, that I was to administer (i'm his grandson and POA). One day when I went to visit, a few days after the surgery, he had a nurse in his…
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Waiting for Dr in Chicago
Finally got a referral for my LO for a neurologist at a clinic specializing in dementia and they can’t see my LO until February of 2025. Is that normal? (I’m new at this) My LO recently got an MCI diagnosis. We are seeking treatment and I worry things could change a lot in 8 months.
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Bible Verse to Lift You Up 12/8/24
GOD TEACHES AND LEADS YOU AND ME Isaiah 48:17 New Living Translation “This is what the Lord says— your Redeemer, the Holy One of Israel: “I am the Lord your God, who teaches you what is good for you and leads you along the paths you should follow.” I am always asking the Lord for His guidance. I suspect you do too. He…
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dosage of psych medication your person is on ?
Her medication per day; RISPERIDONE 0.5mg, CITALOPRAM 5mg, VENLAFAXINE 75 mg , blood thinner APIXABAN 5mg She remains highly anxious and agitated , frequently crying and shaking. she is also very delusional and experienced another episode of delirium 2 days ago …during which she became combative with a nurse, . A few hours…