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When you can no longer provide care
I came across this helpful post on another forum so I decided to share it. It's a response to a person in CA, so medi Cal is mentioned, but I feel like this is universally helpful. It was written by David Halpern, author of "Overwhelmed With Family Caregiving-Now take Control." It is very courageous for you to post your…
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Feeling a bit sad - one more step in the progression
Let me start by saying, I know how lucky we are. I am, really am, counting my blessings. But my LO is quite elderly and their condition is declining. They have been on hospice since the summer. The hospice has been great. But this week both the social worker and the RN independently asked if we would consider a hospital…
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Minor illnesses
I’m finding it challenging when I get a bad cold, flu etc and don’t feel like doing all the meals and other household duties. I get very upset because I just can’t do it all when I’m sick. Luckily it’s not very often.
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New here. Need help understanding.
I’m at the beginning stages of learning about dementia and how to help my mom navigate dementia. She recently became aggressive toward me and accused me of stealing some dolls from her. She told me I was the devil and she was going to shoot me with a gun. Although I wasn’t in any real danger, it was still scary and it…
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Valuable resources from Michael Ellenbogen
Michael recently sent me this valuable information: https://mybrainguide.org/clinical-trials/ https://mybrainguide.org/?gad_source=1&gad_campaignid=23068332846&gbraid=0AAAABBAIqH7frDwN-d8NcMo_n74usOgPt&gclid=EAIaIQobChMIsNSssuzKkQMVoSvUAR0n_wuOEAAYAiAAEgLdy
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Hospice for Alzheimer's
I think I have read here about people who have had their loved one receive hospice care paid by Medicaid even if they were not judged with less than 6 months to live. Did I read correctly? As Medicaid is a federal program, I don't understand that "exceptions" would be made, so how is this handled? Does the doctor lead the…
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I've been sick. Now depressed and worried.
Right before Thanksgiving, a virus was going around DH MC and he got it. So did I. We both got pneumonia. This is the second time I have gotten pneumonia this year and it is really taking me down. My energy and strength are low and I am still coughing. On top of that, I have been having trouble with my legs. They tingle…
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Speech returned/skilled nursing question
DH I think is stage 7. He was hospitalized and has been on geti/psych for 5 weeks. Before going to Geri/psych he was down to just a few words. Now he talks non stop! Some words I understand but the stories I don’t. He has behavior problems and now can’t walk (was walking prior to Geri/psych), but lack of him cooperating…
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Mom diagnosed with eo which caused drivers license recall
Hello, I am new to this forum and very much respect all the insight and answers that I have read on the various discussion boards. My mom was recently diagnosed with eo. It was becoming apparent to me with her repeating her questions numerous times, not remembering where items were and minor memory events. She is still…
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Medicare Question
Hi everyone, My mom was just diagnosed with Alzheimer's (mild) state. She currently has Medicare under an Advantage Plan - United Healthcare. Because of her new diagnosis, we are considering moving her back to Original Medicare in order to have more options for care. Does anyone have advice about this (i.e. having Original…
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FTD Any signals that the Mood is changing?
My husband has a diagnosis of FTD, but we haven’t seen many symptoms until recently. For you experts, are you aware of any signals that the FTD patient is experiencing a mood swing? I just observed my DH go from happy, loving to cranky. I noticed that he was sitting alone in the bedroom, looking at his feet. I wanted to…
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Newly Diagnosed Physician
I am a 60 yo newly diagnosed with Alzheimer's. I am a retired Family Physician who noticed issues approximately 18 months ago and was diagnosed with MCI. I stopped practicing medicine and was given disability benefits. I am fortunate to have had that option but despite all my expertise the process of getting a definitive…
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Constant Motion
My DW has moved from sundowners to near constant motion. The last two months have really been something. I'm not sure she had more than 5 hours sleep most nights, sometimes going over 24 hours without sleep and no loss in movement energy. Earlier she was much more agitated and then it shifted to general aimless wandering.…
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Scientists catching up to the value of rosemary
I first began using rosemary essential oil with my mother in 2007 (she passed away from a heart attack in 2012). She became more alert, could recognize objects, could remember her name again, became somewhat more lucid, had a little bit of short-term memory, and was calmer. I have been advocating for the use of essential…
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Grief
·onpstordSei2 f40m :M5 mtfA29m1s01mg3m5m77ittg3actA9u0i5u3at · Jim Carrey once said: Grief is not just an emotion—it’s an unraveling, a space where something once lived but is now gone. It carves through you, leaving a hollow ache where love once resided. In the beginning, it feels unbearable, like a wound that will never…
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Hope or Cope?
We finally got an "official" diagnosis on Monday - "amnestic MCI with concern for Alzheimer's." DH's next steps are a PET Scan, bloodwork, and another MRI. Now, I just keep swaying between hope for a "cure" (improvement) and acceptance of the diagnosis. Do we fight the disease or do we learn how to live with it? I…
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PPA Semantic variant Swallowing issues
DH has been diagnosed with FTD/ Primary Progressive Aphasia/Semantic variant. He has had 2 tests so far due to trouble swallowing. They have determined it is caused by the muscles in his throat not working in the way they should to move food down during swallowing. I know this is a possible complication as the disease…
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Asking for tips on how to get LO to drink lots of water for radiation
My LO w/dementia is about to start radiation for prostate cancer. He remembers that he had surgery 5 years ago, so doesn't understand why he needs radiation now. He will need to drink 25 oz of water in 10 minutes before radiation, and it's a struggle to get him to drink that much in an entire day. I got the okay for him to…
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donepezil
My HWD has been taking donepezil for over a year…he refused to take it over the weekend because he said that his dr told him to stop (not true) and that I didn't know what I was talking about and was trying to poison him. I messaged our doctor (unfortunat
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In Home care
I had in home care through an agency three days a week while I was at work but our caregiver left to work somewhere else so the agency lined us with a new one after a few no shows. Anyway, it was not a good fit. Resulted in the police being called, my DH was aggressive towards her and left the house walking towards the…
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Lawyer appointment - successful
I met with a lawyer this morning regarding my sister's mismanagement of our mother's money. She is guilty of embezzlement and conversion. The remedy has to occur in stages. First the lawyer is going to send her a letter and suggest a payment plan, if she resists then we move in another direction. Also we, the other…
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Blood test results - concerned
Received my blood test results last week and they seem concerning to myself and my husband. Haven’t heard from the NP to discuss the results. I called and left a message - feeling frustrated Phospho-Tau(217), P plau217, P 0.313 pg/mL High REFERENCE VALUE Negative: ≤ 0.185 pg/mL Intermediate: 0.186-0.324 pg/mL Positive: ≥…
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My beloved is declining
Jacob (pseudonym) has been declining in the past few weeks. We are not married; I use the term "beloved" because we were destined for each other, and I will be with him until the end. I am so scared. he forgets conversations and events almost as soon as they happen; He is deeply traumatized by this and cries easily. Jacob…
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Concern about potential surgery
My DW has a condition that may require a hysterectomy or other type of surgery to correct a pelvic prolapse. I'm terrified that the surgery may accelerate her decline. To this point, nearly 5 years, she has done very well. We are still having a good life and she is happy as am I, although I live every day if fear of the…
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A series of changes and more isolation for me as sole caregiver
This is just me expressing feelings the only way I can right now. This week has been challenging. My husband's Medicaid application was approved, but the part that funds home and community based services is still pending. I applied in August, and I was told that it will probably be February before we actually get any…
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Focus on the Now, the Positive, the Moments
My name is Vickie B. I turn 50 in 4 days, and I've been living with younger onset Alzheimer’s since 2021. Have I cried? Yep- a few short times. BUT I have made it my mission to not stay/live in my sadness. I choose daily to see and find beauty and joy around me. And if I have a bad day, I give myself some grace. Honestly,…
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I am still waiting for the actual diagnosis
I have a neurocognitive disorder and I'm waiting for my neuropsych testing so I can be diagnosed. This is very challenging and I was seeing if there is anyone out there who has or is going through this. Any advice or stories would be great.
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I'm a widow now
My DH passed away 12/10/25 at a hospice house. Thank you to everyone on this message board for your advice and caring support.
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DW probably needs surgery
I have posted before about this but, I am terrified about my DW having surgery. She's probably about mid stage 4 and still doing pretty well. It appears that she may need a surgery. There are two options. One would require about a 4 hour surgery and the other likely more like 2 hours. I'm so concerened about how this might…
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Any Advice for Stopping MCI Progression
What advise do you have for stopping MCI progression to Alzheimer’s? Has anyone on this site found anything that keeps this from progressing? My husband’s MCI is stable at this point, and we want to keep it that way. We are using Brain HQ online games, are on a plant based diet, exercise, and are doing everything else that…