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Caregiving Rookie
We don't have an "official" diagnosis yet, but after two years of doctor visits, medical tests, and eventually specialists, it appears likely that my DH is in the early stages of Vascular Dementia. I feel blessed that he currently acknowledges that something is wrong, but I can see his acceptance beginning to wane as the…
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My DW's pain levels
Hi Y'all, My DW of 57 years was diagnosed two and a half years ago. She is currently between levels 3 and 4, in my estimation. Our GP prescribed Memantine 10 MG twice a day and Donepezil 10 MG once a day at her diagnosis. I don't know if or how much that helps her. I asked our GP about 6 months ago if he felt they were…
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Changes in vision - info to help communicate
When someone with dementia seems confused, startled, or disconnected during a conversation, it may be because they literally cannot see you. As dementia progresses, peripheral vision narrows and the visual field becomes limited. This means a person with dementia often only sees what is directly in front of them, and they…
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endgame
How and how often would one tell one's spouse who feels awful all the time and who has no short term memory that the likelihood of her ever feeling better is probably nil, and that she is likely facing years of decline?
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Where are we at here?
I have these questions, and no one can just give me a straight answer. My mom (66years old) was diagnosed with ALZ, in 2022. I guess we can call it EO because she was 63 years old at the time of diagnosis. She has type 1 Diabetes and last month she was put into hospice at home. She was hospitalized Oct 17 for her blood…
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Where are we at here?
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Scared of the clarity
My bf who is 46yo (eoa/ftd) stage 7, on hospice. No end of life care (morphine, haloperidol, the usual stuff). The last few weeks we have noticed a big decline. He stopped walking a little over 2 weeks ago, food intake has been baby food, ensure and pureed food as well. Well today his best friend came, who was just here…
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Atrophy of hands
My DH is in the middle stages of Alzheimer’s and has been developing atrophy of the hands making it hard to button shirts, open jars or do a lot of things requiring finger dexterity. He is going to PT but is told each visit that he needs to do a set of exercises to 30 minutes to 1 hour a day. I have to keep reminding him…
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Hoping I’m doing the best for my dad.
Hello all. I’m a new member here. I’ve been caring for my dad for nearly 15 years now. He went from being my rock to depending on me for everything. I am 1 of 6 living children that my dad has. My mother passed 22 years ago then my eldest brother a year after her. I am the baby of the girls. I have 3 older sisters and 2…
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keep or cancel phone?
Hello All-I have a question that has been on my mind for quite some time. My husband, who has dementia and is living in a boarding care facility has not used or needed his cellphone for many months now. I kept it as a just in case for the authentication code thingy but now everything is tied to my cellphone instead. I pay…
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Weighted blanket
Hi. My father has been restless at night and waking up. I tried a weighted blanket last night and it seems to help a little. He did wake up once but wasn't as agitated as he usually is. It seemed easier to get him back to bed. Does anyone find this helps? It's been a couple of months of disruptive sleeping. I am trying…
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New here
Hello I'm new here. My mom has Alzheimer's and is stage 5 with a little 6. I had to move her in with me a few months ago as living independently became too difficult. I'm struggling with my sense of loss of my independence having to be caregiver for her. I plan to check out a nearby nursing facility that has an all female…
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Alzheimers drug horror story from the NYT
https://www.nytimes.com/2024/10/23/health/alzheimers-drug-brain-bleeding.html?ogrp=ctr&unlocked_article_code=1.UU4._7lR.3WFk8efLcVB9&smid=url-share I hope this link works but this is a gift article which I can reprint its all here in a number of sections It is the worst ethical violation I have seen in my entire career…
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Bible Verse to Lift You Up 11/15/2025
GOD IS MY SHIELD Psalm 3:3-4a But you, Lord, are a shield around me, my glory, the One who lifts my head high. Proverbs 30:5 Every word of God is flawless; he is a shield to those who take refuge in him. THINK ABOUT THIS: When storms slam head-on into our lives, let’s keep praying and thanking the Lord anyway. We find our…
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Life after diagnosis
I’d be interested to hear how you’re dealing with life after dx- like your personality has changed. I feel super sensitive and just different.
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Kisunla
Good day to all. I'm looking for feedback on with Kisunla, how treatments went, results, etc. Thanks in advance
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APOE Test not covered by Medicare?
Our neurologist ordered an APOE blood test prior to prescribing Kisunla. When we went for the test we were told it would not be covered by Medicare or Tricare and would cost $700. Is this what others have experienced? And is the APOE test actually required? We've done the PET scan. Of course, we'll find the money if the…
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Not eating and losing weight
My DH appetite is bad. He has lost so much weight. Yes I've tried the protein shakes they are a hit and miss. I keep snakes around. If I can get him to eat once a day I'm lucky. I've tried just making the food and giving it to him, sometimes he'll take maybe 2 bites and throw the rest away. I've asked him what he wants,if…
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What the …?
so I’m sitting here making dinner for my DH with VD after taking him to the movies-aka date😁 that he said it was so good to when we got home (5 minutes) to it was ok . I know he didn’t remember it but his first thought was positive! The Horsemen BTW. Now I’m making dinner and wondering why ? He’s been in the kitchen 3…
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My plan of action failed
In conjunction with a wonderful Care Consultant, #1 on my action plan is safety concerns. If my husband continued hitting himself or struck me, I was to call 911 and ask for him to be taken to the hospital for a psych eval. After a comprehensive evaluation, including an MRI to possibly identify the type of dementia, I…
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Hospice and another fall
Well, I did it. I signed DH up with hospice. Early this morning, around 2:00 am, I woke up to go to the bathroom and found DH at the end of the bed, sitting on the floor. That makes his 10th fall this year. It's impossible for me to get him up. So per the hospice instructions, I called them first to report the fall. Then I…
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All the "firsts" at once
My DH passed September 27th 2025 and in November was his birthday. Our girls and I went to the cemetary and had cupcakes in his honor. Now there is 2 weeks till Thanksgiving, and 8 days after Thanksgiving we would have celebrated our 38th anniversary. 20 days after our anniversary will be Christmas. Ive been very…
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Long term memory going / reality distorted
Last night, mom came upstairs and asked where our son was. I'm her son. At first, I thought she said "your son". I told her he was upstairs in his room. A few questions later, I realized she thought I was my dad. They divorced over 30 years ago... Last couple of weeks, she has been obsessively asking about dad and getting…
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Creating soothing activities using a busy or activity board
I understand that some activities like folding clothes or napkins can offer feelings of control, or be soothing for PWDs. Most are harmless, but PWD likes to scratch coffee stain marks from a sofa using a fingernail, or scratch off burn marks from a frying pan with a kitchen knife, and doing it repeatedly. It ends up not…
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Insurance question
Mom has had Medicare and through dads retirement benefits blue cross and blue shield. Her coverage has always been very good and she has seldom had out of pocket costs. She has recently moved to a nursing home. She has been approved for Medicaid. The nursing home is suggesting she sign up for a Medicare part b (I think…
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Just starting infusions
My husband has early stage Alz and is seeing a Dr. to hopefully begin the Kisunla™ (donanemab-azbt) infusions. Can anyone share their experiences with this treatment? side effects - anything we should know about the experience - etc.
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Walk With Bill_2001: 10 Years as a Caregiver
Hi Friends, Three years ago, I posted the article entitled “The Cavalry Is Not Coming,” and I have been humbled by the fact that many of you have found it helpful. Thank you all for your kind words. If you have not stumbled upon it, search for it in this forum and it should come up. I wrote that post to share an epiphany…
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Help with my sister
My only sister and best friend was diagnosed with EO Alzheimers at 55. I am spiraling and want to find a support group for siblings. Can anyone please help? Thank you. Juli
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Kisunla
Good morning to all. I hope you’re finding peace somewhere along this journey that we’re all on together. I don’t post very often, but a friend sent me an article about a new monthly infusion called Kisunla. I’m wondering if anybody out there is aware of this or has had any experience with it. This is advertised as yet…
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Guilt lingers where love was poured without measure...