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Progress on improved services for caregivers (originally provided by Michael Ellenbogen)
"The U.S. Department of Health and Human Services (HHS), through the Centers for Medicare & Medicaid Services (CMS), announced its new dementia care model, which is intended to enhance the care and support for Medicare patients with dementia and their caregivers. The goals of the new care model are “to improve the quality…
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Off Topic: just a poem to share
My daughter sent this to me yesterday, and I liked it so thought I'd share. A bit dark, but it rang true to me. Maybe it just fits my current state of mind. Good Bones--by Maggie Smith Life is short, though I keep this from my children. Life is short, and I've shortened mine in a thousand delicious, ill-advised ways, a…
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Cyberthreats
Some hospitals on the East Coast have been threatened by ransomware. Medical records and financial records and passwords are at risk. You can search for details. Try to get and keep paper copies of your important medical information because it might be corrupted by bad guys. Iris
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Resources for scheduling respite
Hello! I am new to this group but look forward to getting to know you all! I personally feel that one of the hardest parts of caregiving is making/finding time for respite. Does anyone have any suggestions for resources they like to use to schedule respite?
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Wanting to learn more about progression and stages
Hello! My dad was diagnosed with moderate stage Alzheimer's in September, and in six months his MMSE score has dropped 3 points. I looked up the numbers online, and it appears that Dad is heading toward the next stage at a pretty moderate clip because it wouldn't take much of a drop for him to be in the next stage. He and…
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OT a book recommendation
I just finished reading "Never Give Up A Prairie Family's Story" by Tom Brokaw, who also wrote The Greatest Generation. This is a great book about his parents, growing during the Depression, then through WWII, and onward. It's a nice easy read, with photos, about a part of the country that is less known to most of us…
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I’m new here!
Hi, I’m a 50 year old daughter living with my parents. Mom has not been diagnosed nor have we faced this head on but it has to be done. Main symptoms that are killing us are the up all night, rearranging everything all the time, thinks I throw away or hide her things , she obsesses over them. Always throwing everything out…
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The PCP said he’s getting worse
My step-dads pre op physical for his eye surgery was today. He’s cleared for that and for twilight anesthesia. It was an ‘interesting’ appointment. Dad did his usual blustery posture of ‘ nothing’s wrong with me’… but then pivoted to the ‘ there are bugs living inside me’ theory that he’s had for a couple years now( it’s…
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Excessive AND Deep Sleep
I'd say Dad's dementia is at stage 6 and wears a foley catheter. In the past couple of months, he has been sleeping more and more --- from 6:30p - 7:30a. On certain days, he would nap/snooze throughout the day and on others he would be up and pacing. From the discussions in this forum, I get that Dad's excessive sleeping…
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Mom Fell
I've missed you guys. I haven't posted for quite a while. Mom fell last Saturday and broke her hip/leg. She had surgery Monday and we are going through the recovery process. She is 89 and is probably in the mid stage 6 of Alz. She is getting excellent care at the hospital. Her nurse said she will be there for "a while",…
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Music for memory care
I spent yesterday afternoon with a friend and she and I went through all of Peggy's vinyl. She has close to 200 45s, and probably that many vinyl albums. We did this so that I can move Peggy's favorites from vinyl to CDs. That way she can hear some of her old favorites in memory care. Music has been almost the only way we…
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Help! Donezepil (Aricept) nausea
Hello, Hi! How did your LO react to Aricept? My husband has been on it for a week and immediately improved, but after a few days he became really nauseous & it’s not getting betters—it’s debilitating. I called the doctor during the week—no call back. I emailed Friday—no answer. I’m afraid to stop him cold turkey. Also,…
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African Americans less likely to benefit from Leqembi
African Americans and perhaps other ethnic minorities appear less likely to benefit from Leqembi than whites: "Although older Black Americans have twice the rate of dementia as whites, they were screened out of clinical trials of these drugs at a higher rate, according to interviews with 10 researchers as well as 4 Eisai…
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Can’t get this deleted, sorry
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Hearing voices of family or friends calling her name that only she hears
My Mom has been diagnosed with Lewy Body Dementia and Alzheimer's. My husband and I live with her in her house. She has severe hearing loss. She claims she hears different members of the family calling for her. Some are alive and some are not. She will go to the front door looking for people. She calls my sister in…
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Re-posted for pedwards
A new member named pedwards messaged me this; is having trouble getting it on the general forum and asked me to share it for feedback. Pedwards: I have been my mom’s primary caregiver for 2 years now because she had a stroke and she couldn’t go back to her assistant living facility. She has dementia and had the stroke at…
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Worsening symptoms with loved one in Assisted Living
As this disease continues to narrow our loved one's mind and ability to process fundamental information, she is getting increasingly panicked. She was doing very well in her assisted living atmosphere but recently has become more combative about 'wanting out' and 'forgetting and losing things.' General confusion. And she…
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Let Her Sleep!
It's always something at my house! Now it's the night time sitter and Dad. The hospice nurse has told us to let mom sleep when ever she wants to. Fed her when she's hungry and change her diaper when needed, otherwise let her sleep. Night before last the sitter arrives and is upset that mom is sleeping because she thinks…
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Seniors and Driving originally from Michael Ellenbogen
Michael has sent me this informative video on seniors and driving and some background on those interviewed: https://alzheimersspeaks.wordpress.com/2023/07/28/seniors-and-driving-what-you-need-to-know/
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Psychosis Paranoia
Hello - my aunt is 96.5. She lived on her own until 95, but now lives in a nice assisted living. Everything was fine until a few months ago when she started having extreme paranoia and psychotic episodes. She thinks people come in her room at night, beat her, and tell her they are going to kill her. It is progressively…
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Eldest daughter wants mom to live with her
i am my mom's eldest daughter. the oldest of 6 children all whom live withing driving/walking distance of our mom. the youngest is 35 years old, still lives at home with elderly parents and has Downs Syndrome. We joke that mom and youngest are still connected at the umbilical cord- not an exaggeration - they literally…
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Ginseng For Alzheimer's Disease
The most recent study on ginseng for Alzheimer's disease and vascular dementia discusses why this treatment may be effective for these two types of dementia. Abstract: Dementia has become one of the most important diseases threatening human health. Alzheimer's disease (AD) and vascular dementia (VaD) have the highest…
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Great Article on Palliative Care (Comfort Care)
I ran across this article today, had not seen it before and it is really good. Clearly explains several things and highlights some of the most important ideas I wish more people knew. There is such a need for dementia education, just generally for our society. The information in this article is a good start. Palliative…
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spouse caregiver support group - early stage
I am interested in forming/finding a support group of spousal caretakers ideally people who are encountering great resistance to any acceptance of what is happening both due to psychological denial and I assume panic at what it means. My wife still works, but in every other area of life which includes recording keeping for…
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Link for Tam Cummings Staging Tool
I am having trouble with every link for Tam Cummings site and am unable to find the staging tool on Wellmedcharitablefoundation.org. Her 8 minute video on YouTube mentions the tool but I just can't locate it to print it and use. Any suggestions are welcome!
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Information from Michael Ellenbogen (via Lane)
Here is some valuable information from Michael. The first is from the Global Council on Brain Health and discusses multiple ways of enhancing brain health. I have been running into some problems posting external sources but the full title is Building Better Brain Health for All People: GCBH Recommendations on Removing…
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Advice for DH re: positivity
Hopefully without going into too much detail, we are struggling with my DH's anger and frustrations more and more. We are 4 years into this journey and he is just starting to exhibit some early Stage 5 characteristics. (he is 71 years old so on the young side) He is still independent in many ways, can even drive locally to…
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My husband has had personality changes for years. Now, I feel like his very "self" has vacated
My husband was identified this year Early Alzheimers through a lumbar puncture. His symptoms have manifested for at least 18 months. He basically stopped talking beyond the basics. Prior to this big change, he had many personality changes- did not want to travel, said everything was too expensive, always saying "that's…
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Disrespectfulness
I was told by the young lady that “don’t call yourself a caregiver until you start to care“, I was called a thief and a liar. All this in one week. And I had to walk away because it’s a lot and I have been doing this for over 30+ years and this is the first time it is gotten to be a bit much. I’ve been with this person two…
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Deleted
Deleted this is just too much