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People just don’t understand
I have found that people just don’t really understand how hard this is if they haven’t experienced it. And that you feel so alone although you’re never really by yourself. The first couple of years after diagnosis wasn’t too bad, but the last 5 have been pretty overwhelming at times. My DW hasn’t remembered that we’re…
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When is a person considered incontinent?
I wouldn't call my husband incontinent but he urinates frequently, like every 15- 20 min. We are home most of the time and he does go to the bathroom himself but every single pr of underwear has urine stains. He only goes a little each time he urinates. When we do go out he uses the urinal in the car 1-3x per outing and…
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I am frantic
Over the past few months I have noticed cognitive decline in my husband. He often forgets things, brings me the wrong item I've asked for, cannot remember events that happened several minutes ago, i.e. that is, I will tell him something and he will ask me almost immediately for info I just provided. Our PCP has referred us…
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Baclofen
DH has had several episodes of hiccups lasting an hour to as much as 36 hours straight. The PCP gave us Baclofen 5 mg to use PRN. I read online that it is a muscle relaxant and side effects can be weakness, instability, and confusion, which all showed up. Today he is exhausted and sleeping. Has anyone used a dosage less…
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Getting lost while driving
Husband got lost for 2.5 hours the other day while driving to a nearbypark that hes been to a thousand times. Since then I have discouraged him from driving and now hes just really mad at me. I just don't know how to handle this.
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You have to laugh sometimes
DH tried to clean the toilet today. I walked in and it smelled industrial so I asked if he had sprayed something. He said yes he had cleaned the toilet. I asked him to show me what he used….. It was rainex windshield water repellent treatment😂
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DH somewhat aware of his mental state - how do you respond?
Hi everyone, I'm here again partly to vent and partly to see if anyone has any insight. My DH, diagnosed with Alz over a year ago <but I noticed signs over 3 years before that> and showing signs of being in stage 5. He still takes care of his personal care just fine and even does small chores around the house still. With…
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Bowel incontinence
My DH is stage 6. Up until recently he was bowel incontinent occasionally, maybe once or twice a week. Now it’s all the time. He’s always gone to the bathroom a couple if times a day, now I’m having to change him, clean him, 2-3 times a day. I guess he no longer has any control over it. I do have caregivers during the week…
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In my feelings
I’m new to the forum. I’ve read a lot of the posts over the last several months. The cliff notes version of my story is, my wife and I were married young. This past summer we celebrated our 33 rd anniversary. She was diagnosed with young onset Alzheimer’s disease at age 49. I was 46. We are in year number 7 of this…
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Quiet Cracking - So many of us suffer from this
Quiet Cracking: The Caregiver Struggle Nobody Talks About By Ellen Samson Not all caregivers burn out loudly. Some don’t quit. Some don’t collapse. Some don’t cry in front of anyone. They just… crack quietly. Quiet cracking is when you keep showing up, doing the work, and taking care of everyone else while slowly falling…
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Habitual arm picking creating open sores
My LW has developed a habit of picking/ scratching her arm creating open sores all the way from the hand to above her elbow. It’s been going on for 9 months. I’ve tried everything I can think of to stop her from doing this including full arm sleeves. She just picks thru them. I’ve even woken up at night to the sound of her…
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how best to cope with continent spouse who needs help 5x per night to pee
Wondering how others have dealt with this situation. My husband is probably around stage 5 (late) or early 6, but not yet incontinent. During the day, he needs to pee every 3-4 hours, and we halt all fluid intake at 6 pm. I don't go to bed til midnight, but I am having to wake and get up to help him about 5 times each…
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Early sign of dementia is loss of Executive Function
From Speaking Dementia: “One of the earliest signs of dementia is the loss of executive function , not memory. Executive function is the brain’s ability to: • plan • organise • make decisions • manage risk • cope with complexity When this starts to fail, people may still sound intelligent and hold conversations. Even their…
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New Year Prayer
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Movies about dementia & caregiving — what actually feels real?
Hi everyone I’m a caregiver for a parent with dementia, and I’m still learning how to live in this new reality. Some days are about routines and patience, other days are about grief, exhaustion, and trying to hold on to small moments of connection. Lately I’ve been watching movies about dementia and caregiving - not as…
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What to expect from neurologist appt?
This is my first post, altho I’m sure not my last. My 69 yo husband saw a neurologist in Aug 2025 for memory loss. At that visit, Dr ordered complete labs, PET and MRI & prescribed donepezil 10mg & memantine 10mg. The labs have been completed. My husband was dissatisfied with the Dr and after talking with our children, it…
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Wife has nothing to do
My wife has ALZ and she has had a rapid change from Stage 4 to 5 in the past few months. She has no interests and is really not capable of doing much anymore. She gets moody and agitated with nothing to do so I try my best to find things. We go for walks in the neighborhood, go to the Mall and walk around, eat lunch out…
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First experience with DH hallucination
Hi all, after his typical afternoon nap my husband awoke saying, “ I just saw someone laying right here next to me. “ My DH looked surprised but happy. He then said it was “pretty cool”. And …”I think it was you”- which it was not. Is this what a hallucination can be like? First time so no scary stories please.
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Startled / not able to identify common noises?
Hello everyone. My DH shows signs of being in stage 5, but is able to do most daily care tasks on his own. He is aware he has Alz and often talks about how he's been reading about all the Alz research and how they are coming up with cures. Anyway, I'm curious to know if others experience their person having issues…
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Wondering What’s in Store For 2036
Thinking about all my friends getting ready to party and bring in the New Year while I sit here sipping a single malt wondering what’s in store for me in 2026. Not a very nice thought considering my LO just “graduated “ to what I think is Stage 6. Happy New Year… Really ?? Maybe someone can relate to my rant … it seems…
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One Way to Ask for Help
I am terrible at asking for help. Asking for advice - easy … asking for help - so hard. I mean, I've always been self-reliant. But self-reliant is not going to cut it when things get real around here. So, I started looking for ways I could take people up on their offers, like when they say… "Let me know if there's anything…
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Can I Do This?
I wonder if anyone else feels fundamentally unsuited to care for someone with dementia? This is who I am. I have had life long depression episodes that I do my best to manage. I thrive best when my physical environment is orderly. . I do not work well under time pressure. I am introverted (do not seek social contact). I am…
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Just need to talk to my friends (213)
Morning, welcome to December! Carl and Ron, it's 32 here, mostly drizzle but it's icy in Tulsa and snow North of there. Lots of accidents and backups in Tulsa. If you get out today, please be careful. I have no plans to be out, maybe on the front porch to feed the birds. I saw a few on the porch looking for food yesterday.…
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Bed Rails
The shopping I do these days. Anyone recently purchased a bed rail they're happy with? I need a little help keeping my DW from rolling off of the edge of the bed. Thanks!
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Tamiflu for lessening flu symptoms in advanced Alzheimer’s?
Im wondering if anyone’s frail loved ones with advanced dementia been successful in taming flu symptoms and avoiding medicine side effects by taking Tamiflu? Trying to make decisions in advance as half the residents are showing flu symptoms.
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Another missing person left an AL facility
Please don’t allow people with dementia to live alone or put them in ALs. They are not watched 24/7. This is the 4th case in the last few weeks. Just because they have never wandered before doesn’t mean they won’t. They can wander at any time. This is so sad! 😭 CLEARWATER – Detectives have issued a Purple Alert for…
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What to do when they won't move
What can we do, or who can we contact, when our person won't move, not even to use the restroom? We went to the ER a few days ago when my husband complained of pain and could not get out of bed. Once at the hospital, he didn't have any more pain, so they sent us home. Today, he's on the couch and wants a cup to pee in…
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Could alcohol be the cause and how do you know if it is?
My husband was diagnosed with early onset dementia (he’s 68) about 5 months ago. He had a neuropsych evaluation and he said it was really tough. I assumed he was having trouble during the testing as it took much longer to complete than I was originally told. Before he finished, the neuropsychologist came out and told me he…
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Oh my, it happened again.
So tonight I made some ground turkey patties with gravies. I did not check, I usually do, he did not drink anything before eating so it happened again. It got stock down his esophagus so I had to get him to the kitchen sink. I’ll spare you the details. It took like 10 minutes to get water to go through. That condition did…
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When to get help?