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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...
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Where I Find Peace
My dear wife left us in August, 2025 after her 8+ year struggle with this nightmare. The going remains very hard at this point at home or trying to get out. After her burial, I waited until the cemetery notified me that her name had been installed on our grave site to visit. Unfortunately the cemetery is not close by,…
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Guardian-family angry at my decisions
I have been a guardian for 5 years. We make very difficult decisions daily. Family members always think it is their right to tell me my decisions are wrong. I always ask prior for professional advice. My person has not asked for their wedding ring. I have been told to not give valuables to your loved one. Yet family…
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Feeling upset
I am new here. Mom's 78 with Dementia & Diabetic going on 4 yrs now. The agitation is the worst. Today she wonder off. I had officer friendly contact me to find her. She took a bus and got lost. She is on meds but I'm like is it making it worse. I am exhausted of all this drama. Nursing home is not even an option. Long…
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Stuff animals with Dementia
I am curious to find if anyone has a parent who plays with dolls or teddy bears. Mom's lives with me and thinks the teddy bear is her baby. She will feed it real food and share her drinks with it. She calls the baby by my siblings names. And it goes everywhere with her in a cart. I was ok with it until she gets angry…
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Caregiver
My DH, has Alzheimer’s and I am the caregiver. My fear is that I won’t know when the best time will come for an outside care giver to come in and assist or even when it might be better if he were in a facility with more care than can do. My desire is to have him at home as long as possible. He’s 81 and I’m only 70. I’m…
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How to decide if family member with cognitive decline can be allowed to stay in home, living alone.
I am writing for advice about my sister who has been diagnosed with dementia that is vascular related, not Alzheimers. For the last five years, her declining decision making and ability to engage in executive functions, such as managing medications or finances, has become evident to me, her health care provider, and her…
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Possible AZ prevention from anti virals + shingles vaccine
I have not read anything about this before:…
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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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Home health care
I am 70, in reasonably good health, with some managed issues. DW is 67 in moderate stages. She has frequent urinary incontinence and needs assistance with dressing and bathing. I cook breakfast every day. We have an adult daughter nearby who really helps out a lot, frequently bringing meal preps and assisting 2-3 days per…
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New to community with Alzheimers
Hi my name is Katie. I am 67 years old, from MS and diagnosed in 2018. I am moderate stage. Looking for support, coping skills and living with anxiety.
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How many caregivers are keeping their spouses at home until the nightmare ends?
I’m absolutely determined to see my DH through this nightmare. I am determined to keep him home until the end. Are there others out there that are doing this and have you managed to keep your sanity through it? My husband is in stage late 4/early 5. He’s always been extremely calm, kind, gentle, helpful, loving. I just…
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US SSA does not recognize POA
This may be well known to most of you, but it was news to me only a few days ago. Social Security agents could not talk to me about my dad’s benefits, since SSA does not accept DPOA. I had to apply directly to the SSA to be a “representative payee.” It would have helped if I had known that term! The process was not that…
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Our Theme Song?
I ran across this song yesterday and it got me all weepy. Love it though. For everyone on this journey; you’re not alone. https://youtu.be/E5488fUMLXs?si=ddyuj-Xm6_Housq5
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How did you decide who lives with who?
Looking for tips on what should be considered when deciding to move a loved one in with you, or if you should move in with them. We have a list of pros, cons and costs for each. but we keep flip flopping on what is "best". For example, if she moves in with us, she will have 2 small rooms. we will need to remodel the…
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Need Advice on Preventing Falls
My DH, who is in the later stages of Alzheimer's and lives in MC, is having two different issues with falling on the floor. The first issue is that he is becoming more and more unstable when he walks and has fallen a few times and split open his forehead. Now I'm told that he is hallucinating and reaching down to the floor…