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Discussion List
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What Should I Say?
I am visiting with my parents for a few days and my Mom is very confused. She has Alzheimer’s . She often does not recognize my Dad and thinks he’s an imposter. She is scared of him. He will tell her it’s him. My brother lives with her and he says “that’s Dad.” My Mom is very confused. She says the only two people she…
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New diagnosis
My husband had been diagnosed with moderate dementia/Alzheimers. He goes in for MRI the first of the year. He is only 69. He also was diagnosed with chronic myeloid leukemia.
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Waiting and waiting to finish last Dx test
I see so many here who have been newly diagnosed, and I truly hope you can all get the support you need. I have had all the medical Dx tests—MRIs, biomarker blood work, PET scan. They all point to early stage ALZ, but I still need to have the comprehensive neuropsyche evaluation, but I need to wait until late March to…
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Need suggestions on responses, please...
I am new here, and I have been reading through some posts and it is really comforting knowing that I am not alone and this is reasonably "normal". However, I could really use some advice: My mom is now in a memory care unit, she believes it to be a hotel. She will keep asking me if she needs to go to the front desk to pay…
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Electrical work
Hi. This is my first post. I have a relative who is in the middle stages of cognitive decline and is waiting for an appointment to receive a more official diagnosis. Their spouse insists that he live at home. Over the years he's done most of his home repairs. He believes he is still capable of doing such repairs and helps…
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Looking for Support Here
Hello all, I have some form of dementia that may be vascular or Alzheimers. I have had the ususal tests, MRIs, blood work for biomarkers, PET scan and consultation with well respected neurologists in Northern Virginia. I am looking more for support both emotionally and in terms of locating resources for support available…
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New
Hello, I am new to this site. I have just now felt the need to reach out for support. I have been telling my wife that the presents are not to be opened till Christmas. Well, she opened hers and her son's Christmas Eve. I was so disappointed. A few years ago, while we were in Michigan, my wife was given depression pills.…
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Anyone experiencing body pains
hi am am newly diagnosed early onset dementia, My doctor is still finding out what kind dementia I have My understanding is I have Alzheimer’s in my blood but not reached my brain yet , what the heck does that mean ? I am having a Pet scan next , I kind feel like my doc just dumped me or put me on hold , I don’t know if…
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Alone This Holiday?
I am just curious how many others of you are spending holidays alone. Our children’s rotation is to in-laws this year. We normally get an invitation from friends to at least one holiday gathering but no invitations this year. I can’t help but conclude that it is because we are becoming more and more isolated because of…
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“Fiblets”
I am having a very difficult time lying to my husband who has dementia! I have always been that person who people could trust and know I would be honest! But now I find I am being dishonest and lying to my husband. I just want to tell him he is not allowed to drive anymore and it’s not safe and that his beloved truck is in…
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Crying out of nowhere.
It’s funny how certain things will trigger our emotions. My DW and I were sitting comfortably in our recliners last night listening to Christmas music. We were both enjoying the time and then came an Elvis Christmas song “Santa bring my baby back to me”. Out of nowhere I just lost it and started weeping.
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At peace
My DH is at peace. I held his hand as he took his last breaths listening to Chopin and the Lords Prayer at 3am this morning in bed at home. I am grateful that I was awake to say “I love you” as he took his final breaths. The end came quickly after he lost his ability to swallow any liquid three days ago. His last words to…
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DH is going to MC and I am not OK
I’ve been quiet for a while and my DH has gotten much worse in the past 6 months after having back surgery and spine injections without any pain relief. Naturally, this along with the pain pills have caused him to go downhill. He is solidly in stage 6 of vascular dementia (eight years into this journey). Our grown kids had…
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Hospital to Rehap = Late Stage of Alzheimer's
My DH was taken to the hospital where he was discovered to have fluid in his lungs. While being treated for 5 days he caught the flu there. He walked into the hospital and could clearly be understood. After spending 3 weeks there and losing 22 pounds he was transferred to rehap. Now he does not walk, can barely speak and…
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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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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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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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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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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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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…
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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Dementia Resources
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