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Michael Ellenbogen
Dear Michael, I hope you are doing well and that this will be a wonderful week for you. Can you please share any information on the Emergency Room protocols or guidelines you worked on in 2021-22 I believe? Or if they are posted somewhere online could you provide the link or other direction please? Thank you!
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Improving Emergency Care for People with Dementia (from Michael Ellenbogen via Lane)
Information from a group seeking to improve emergency care for people with dementia. https://gearnetwork.org/about-gear-2/
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I'm conflicted
Peggy's been in memory care now for close to two years, she's early-ish stage 7. There have been ups and downs, but mostly she's fit in well there, and she even kind of likes it there. There are definitely a couple of caregivers there who she's really bonded with. Over the last few months she's taken a strong dislike to…
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MIL is in MC but I’m still a caregiver
MIL is in MC and I’m the responsible party. I’m feeling overwhelmed. Family has either disappeared or doesn’t want to hear about it. I’m watching her decline pretty rapidly and need to share my terror which is why I’m writing this post. But at the same time I feel guilty because so many others have been caring for LO in…
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Truer words were never spoken
Like many of you, we are living with aphasia, which is the communication loss aspect of dementia. I am hoping the infographic 7As chart linked below will work, as it was helpful for me in earlier stages to learn so much that I did not know before we started living it. So, my really brilliant public speaker (all his life…
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Choosing a rehab- quickly!
Hi. Moms been in MC for a year and fell this week. She’s probably being discharged from the hospital Friday so we need a rehab for her, likely for 2 weeks. She’s in an odd spot the past 6 months where she can be fairly lucid and aware she has dementia. She can sometimes hold a good conversation and come off as pretty much…
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Experience with stove shutoff / forgetting about a stove.
My mother forgets that that a kettle is on the stove, or that a pot is left on. I got her a simple electric kettle that turns off by itself, but she doesn't want to use it and prefers to use a kettle on the gas stove. Do people have experience with devices like this "intelligent stove shutoff" that notices that a person…
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New lease?
MC has a new owner. Expecting a new lease sometime in the fall. My lease with the previous owner says a 2 person transfer is a cause for having to leave. I’ve been told there’s a hospice exception, but I’ve never seen that in writing. The new owner says the same thing, but nothing in writing. Have you any experience with…
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Getting mom with dementia to a doctor; what other options might we have?
My 69-year old mom has been increasingly showing signs of dementia for the last decade. She never saw a doctor for this (did not even discuss it with her PCP), until the situation exploded: about 18 months ago, she was basically having psychotic episodes in the middle of the night. It got so bad, she ended up in the…
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Look on the bright side?
I was especially frustrated with my DH so I told myself to think of 10 good things in our situation and I thought I would share. I admit some of these are sardonic but it was what I could think of! My DH has finally forgotten that I accidentally erased his entire digital music collection in 2006. I can tell all of my old…
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GI wants a colonoscopy. -- NOW THEY WANT A CT SCAN ON HIS LUNGS
I posted this back in July when they wanted to do a colonoscopy on my DH who is Stage 5 going into Stage 6 with Alzheimer's- Posterior Cortical Atrophy. Last week we spoke with an Endocrinologist about his diabetes. At the end of the conversation, the Endo doc mentioned that in a previous CT Scan of my DH's abdomen they…
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Sadness when self-aware of decline, but perhaps bliss when not aware?
It was sad when my mother became aware of her decline in memory, and she cried on my shoulder. She forgot where she left her house keys, and after looking everywhere, it was in a kitchen drawer. Not long afterwards, she lost her checkbook, which was right on the dresser. After these episodes she became very sad about her…
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tips for lowering care levels - let's share
I don't know if this is helpful but I found our MC to be helpful about proposing solutions to lower the care level where they could. For instance: My LO gets her washed every week at the beauty parlor on site. This was the MC manager's suggestion. My LO likes it and it makes them feel like its a treat and it avoid moving…
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does anyone have caregiving advice
Hi, I am caregiving for someone I just met who is very early alz. I have previous experience with caregiving and rehabilitation with people with various disabilities. I know that alzheimers can make people not realize that they need to eat, and I have tried to convince them they need eat to but they are adamant that they…
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Medicare Coverage for Leqembi via Michael Ellenbogen
https://www.cms.gov/newsroom/press-releases/statement-broader-medicare-coverage-leqembi-available-following-fda-traditional-approval
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Some help for Air travel with a PWD
My DW is well beyond the ability to travel. But I occasionally read here about caregivers who are concerned about air travel with their PWD. So I thought I would mention a program for air travel that I just became aware of. It is called the Sunflower Lanyard Program and is available at many US airports. An announcement…
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How do I get my mom back to MC when she won't go?
Placed my mother in MC a month ago and it's heartbreaking for her and I understand. My DW is deep into Alzheimer's as well and my mom can't stay with me. I know I should never take her out of MC but can't let her feel abandoned so I do. It's so locked down there that she can't even go outside into the locked courtyard for…
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I am not an official caregiver
My oldest and dearest friend has some type of dementia, not officially diagnosed yet, but I would say she's somewhere mid/late stage. She's been very evasive about talking about her medical care until very recently. She lives in assisted living and has no family in the area, and she's largely estranged from her out of town…
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Leqembi cost etc
So, at a cost of $90,000 a year for 5 months delay in Alz symptoms over 18 months of treatment(total cost for 18 months e $135,000) with possible catastrophic side effects. Am I the only one that finds this ludicrous?
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Cataracts & Glaucoma
Hi everyone, My mother is 84 years old in stage 5/6 Alzheimer’s. Her eye doctor says she has cataracts and glaucoma in both eyes, but couldn’t give us a sense of how quickly the conditions could progress. I expressed my concerns about whether my mother could handle the surgical procedures for both conditions given her…
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Estranged from my mother
My mother is 83 - exhibiting signs of dementia, but not diagnosed. Living alone, refusing to talk to me. I did not get guardianship and now I am just missing her living apart from her. She lives in a gated community and has refused to see me. There were never any relatives or friends to talk to. She is in Florida and there…
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Recommend a pill crusher
I am the caregiver for my spouse who has Alzheimer’s. It’s getting harder and harder for her to swallow her pills. Can anyone please recommend a pill crusher? thank you Cheryl
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Brain donation / autopsy
My dad is in the final stages of Alzheimer’s. My siblings and I would like to get an autopsy done to learn more about his specific diagnosis. The Brain Donor Project rejected us. Have others gotten private autopsies? We’ve been quoted 4000$ for a private autopsy which seems worth it for closure/to see if there is a higher…
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Just need to get others ideas.
I am the sole caregiver to my husband who is only 67 and in late stage of Alzheimer’s . I so want to keep him at home, but I am so tired. He has started wetting anywhere and doing #2 standing up anywhere too. If I don't follow him everywhere he just goes. He starts pacing about 10am and it goes on for hours. Digging,…
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Activities for Reluctant Mom
Hey all, First post here. Long story short, my mom was diagnosed with EO Alzheimer's about 4-5 years ago. At the time, she was still somewhat active and she and my dad would go for daily walks or bike rides. She maintained this activity until about a year ago. My dad cannot get her to go for a walk or do much activity at…
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Vascular Dementia - Moaning and Mumbling
Mother was diagnosed with early vascular dementia in February 2023 and it has progressed rapidly due to her preexisting medical conditions. She was hospitalized in May due to an issue with medication and since returning home has slept 85-90% of the time and moans continuously. She is on pain management, and home hospice…
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Preying on elders, disabled, PWDs - Beware
What can a spouse or other caregiver do if a situation like this begins unfolding? Asking for a friend. Urgent. '99% of the world has no idea': inside the shocking legal guardianship industry | Movies | The Guardian And this. Our Shocking Introduction To The Guardianship System (sistersletter.com)
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EATING
Need to know how to get a senior to eat again. Doctor put her on Donepezil (Aricept) and she stop eating. My mother went from a size 14 now to 8. Weight is 121 from 135. I was preparing meals daily but the food was being thrown away if she didn't want to eat anything. When my mother get up in the morning she might get her…
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Dealing with Pets
Since his diagnosis, my DH and our dog do not get along. While he has never hit the dog, he looms and yells. He is rough when picking him up. Our dog has taken to hiding under the bed whenever my DH calls for him. It doesn't help that my dog has become increasingly protective of me and barks more than he used to. I know…
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Am I Crazy?
My sister's day care is closing in a few weeks. The owner of her day care has another location we can send her to. It's only a few miles further than the current location, but traffic is worse, making transporting her more difficult. I've arranged transportation through an organization that provides rides to the disabled…