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…of course she isn’t really there
You’ve heard of phantom limb syndrome, well I’m having phantom wife syndrome. A number of times a week I very briefly, just for a moment, experience a feeling that my DW is with me. She’s been in an MCF for over two years and the hospice nurse tells me they have just determined she is Stage 7f (on the Fisher scale), the…
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Tonight the sides close in
I struggle One footfall then the next Got to move forward as there is no choice Yes, I guess there is But that choice is not who I am But as I walk this path I will no longer be who I am When I was 14, Sister Mary Neri caught me reading Catch 22. She did not approve. So I read it twice and understood it as much as I was…
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Death of sibling
I thank you all for your responses. You certainly are a great group. Followup to my post. My sister-in -laws told my husband his brother had died. He was quiet and asked how. They told him his heart gave out. He said that's too bad. They also made arrangements for my husband to go early to say goodbye. It worked out well…
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CPAP machine
My husband has Alzheimer's and Vascular dementia. He uses a CPAP machine because he has severe sleep apnea. He is in a memory care facility and has now started hitting staff when they try and put the machine on him. The doctor's recommendation was to stop the using the machine because of his behavior. The facility was sent…
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Talking on the phone
My DW who has EOAD, has been talking on her phone to a lady that has a business selling clothing. Ally (the lady) streams her sales shows on Facebook. My DW is talking to her like she is on FaceTime. I’m hoping it’s ok that I just let her do this. Also she has bought so many items that I have locked her card. When she…
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BIGGEST FEAR, DW MC and what about the whole SEX in MC with others?
Help me navigate the negative thoughts I am feeling. Let me start by stating. I am feeling a tremendous amount of grief. The person in my wife’s very fragile frail body is not the woman I married. I must now consider placement In a memory care home, but I cannot shake this. I have been taking care of her 24/7 now for over…
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Short-term rehab wants DH out; Aetna Medicare Advantage could stop at any time?
My DH gets agitated and fell twice trying to get of the house - ended up in the hospital and the second time I said that I couldn't care for him at home. The hospital released him to rehab facility. Three days later, the rehab asked that he go somewhere else. I have been here from 10 am to 8 pm every day. He's told me that…
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New here and wondering what’s what .
Everything has looked like my wife has dementia but I don’t want to believe it . This mornings angry outbursts over nothing made me look on the internet for information and all the boxes got ticked . I know , I know - being a self styled internet doctor and making my own diagnosis is probably barking up the wrong tree but…
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Toilet Paper
I am used to my OH pulling out toilet paper ,neatly folding and then hiding it . Today was a first . She hid the toilet roll and holder . Looked in all her normal hiding places with no luck . When I went to put some laundry in her dresser , I found the toilet roll and holder neatly tucked in her night dress. Of course she…
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Alzheimers drug horror story from the NYT
https://www.nytimes.com/2024/10/23/health/alzheimers-drug-brain-bleeding.html?ogrp=ctr&unlocked_article_code=1.UU4._7lR.3WFk8efLcVB9&smid=url-share I hope this link works but this is a gift article which I can reprint its all here in a number of sections It is the worst ethical violation I have seen in my entire career…
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Feeling guilty
My DH husband and I have always been open with each other and he has been tested, but has not been officially diagnosed yet with dementia but all the signs are there. I feel guilty talking to our children about him behind his back, but I feel like they need to know what’s going on. They have seen some of the signs as well,…
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Does speech therapy
I asked about occupational therapy, I should perhaps have asked about speech therapy. DH with ALZ most noticable problem is lost words.
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Oh Hello Alzheimer's book
Just wondering if anyone has read the book by Lisa Marshall about her caregiver journey. I just finished it and have a lot of conflicting thoughts. I did not want to put the book down but then did not want to finish reading it because I knew how it would end. Even reading her experience, I looked for ways to deny that my…
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Update on how to talk to Doctor in advance of DH appointment...
Hello all. Just an update on my saga about alerting DH's doc to issues before DH's doctor appointment. My solution this time was to book an appointment for myself with the same doctor, scheduling DH for the appointment directly after mine. I am also a patient of the doc and booked my appointment for medication management -…
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Echocardiogram scheduled-how to get him through it
My DH sees a cardiologist regularly. This time we had a little trouble with the EKG - when they put the stickers on his chest, he complained vehemently about how cold they were, how he was going to leave, etc. I managed to calm him down and we got through that. Next he usually gets an echocardiogram so we scheduled that…
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Bath tub conversion
Seeking comments from those who've converted the traditional bath tub to a walk in tub vs. a walk in shower. Thank you
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I am very sick with covid DW also infected. Help with ER visit
my DW has rapid Demetia, she is in late stage. Which is challenging enough, trying desperately to get some respite relief which I have been granted 12 hours a mont( which are now cancelled due to the Fact, we both now have Covid… DW doesn’t have the severity of symptoms as I do. I am trying to get to the hospital ASAP for…
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diagnosis meaning?
My husband was diagnosed with Mild Cognitive Impairment secondary to Early Onset Alzheimers. I am unsure if that means he has Early Onset Alzheimer's and if I should apply for SSDI under the Compassionate Allowance, or if he is Mild Cognitive Impaired.
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Caregiver of DW 24/7 for almost 2 years w
The most amazing perfect woman has Severe Rapid Dementia, diagnosed officially September 2024. When we bot( refuted early from our careers, we owned businesses together, so being together has been wonderful… well, until truly these last 6-8 months. I stepped down for. My latest BUSIENSS as CEO, June of 2023. After noticing…
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Any experience with Rexulti?
DH has been getting more delusional and agitated. Doc suggested a switch from olanzapine to rexulti. Wondered if there is any experience with rexulti out there. I know every PWD is different but would still like to hear about experiences with this med. Also what dose at what time of day? Doc suggested a cutback reducing…
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Early Onset AZ Newbie
I’m new to this community. I am (51F) taking care of my dear husband (56M) who was diagnosed at the beginning of January of this year with mid-stage early onset Alzheimer’s dementia. There were signs starting about 3 years ago that I just didn’t associate with dementia, and I (mentally) kick myself for not realizing…
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When does PWD stop voting?
I have seen previous discussions of spouses assisting in varying capacities (sometimes total, wink wink) with early/mail-in voting process. In my state it clearly says POA is not permitted to vote for someone else and I respect that. I have a gentle conversation with DW and she can answer yes/no questions like do you want…
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Hospice to Stage 8 in 35 Days
I'm heartbroken at the loss of my LO. He took his last breath at 5.15 am today while I held him in my arms. I am thankful I was able to keep my promise to keep him home until the end. It was gut wrenching to watch the life leave him. I guess we all know the day will come to let them go but I thought we would have more…
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What is the best incontinence brief for men?
I know this has been asked before, but we are just now dealing with urinary incontinence with my DH. He is in memory care, but the product they use is chafing the inside of his thighs, not to mention that it also doesn't work very well. I would prefer to provide him with something comfortable and effective. Thank you all…
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Help
Maybe I'm a failure at this. I know I shouldn't argue, and I try hard not to, but what do you do when your DH gets so angry at things? (Not physically ever at all, but starts swearing and telling him I am never on his side or never agree, etc). I am on edge every minute. I'm really trying - I even got a prescription for…
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I have a legal question about POAs
My brother has (finally) signed POAs. He assigned his stepdaughter as his primary. He once told me that I'm mentioned as a successor agent, but I'm not sure whether I'm second or third. Anyway, his stepdaughter just gave birth on Saturday. She said she can't serve in that capacity and has asked if I can do that. I think…
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I never thought about this !!!!
first let me say I love this site. But after feeling sorry for myself I thought of how lucky I am to have found this group. That being said I was thinking about how many lives do you think have been destroyed by this illness to the very young. And what I mean is at 40-55 to be married and not realize what’s wrong or even…
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Life expectancy for FTD
My husband has been diagnosed with FTD. I think he’s had it for at least 5 years. He is 64. I’m trying to make a decision about whether to extend his life insurance policy which will be expiring soon. Does anyone have an idea with early onset FTD what his life expectancy might be? My guess is he’s in the later middle…
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Three Magical Words
My DW and I have gone through a 7-year journey since a 2015 stroke. As many of you have described, we have had very difficult moments. This may not sound profound, but I have found that when we are at our most stressful moments if we just say to each other "I love you!" peace enters our world together. I have to believe…
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Being able to sleep with him again
I've read so many comments here that reflect my own feeling of loss at no longer being able to sleep with my DH. It is such a simple yet intimate and comforting thing to do. He's been in a memory care facility for almost 6 months. It's close to home and I visit him at least every other day, often trying to nap together in…