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STAGE 8 - There is no other side of grief...
My soulmate husband Lonny passed August 12. I feel lost most of the time but am trying to find myself without him. Found this on a Facebook post today. So true. I had my own notion of grief. I thought it was the sad time, that followed the death of someone you love. And you had to push through it to get to the other side.…
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Parent losing a lot of weight
Hi, My 87 year old LO has vascular dementia, and she is only eating 30% of her food. She has lost 20 pounds 5' 7" 110 lbs. She was at the dentist recently, so her teeth are not bugging her. She is verbal, repeats herself, she can still play cards, the doctor said she is in the middle to late stage of dementia. It is a…
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Convince me
Convince me that I should let a stranger (social worker) in the intimacy of my home. Convince me that I should tolerate this invasion of my privacy. Convince me that I should go through another interrogatory that invades my life. Convince me that I will not be infuriated by all these questions that could imply that I’m not…
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How to handle being accused of not sharing information
Hi Everyone, What a start to the new year. I'm seeing signs of progression in my DH, diagnosed over a year ago with Alz. I saw signs about 3 years prior to that. I believe he's at the early stage 5. He used to accuse me of not sharing information with him, but it wasn't very often and I would just apologize and say I must…
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Where do you go for socialization?
I am thinking it would be helpful for DH and me to do more than just the normal day-to-day. We could benefit from playing cards, or a Bible study, or ping-pong. Our church is full of people who are older than we are, and not really interested in socializing. I do think we could find purpose in volunteering to help at the…
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Anyone RV Camping?
Here’s the thing. Right now DH with ALZ has short term memory loss and needs detailed instructions to do tasks. But he actually is functioning pretty well. We love camping and I have been trying to decide if we should just go for it and see how it goes. We desperately need to put fun into our lives while we still can. I…
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Putting sleep issues to bed
I see a lot of discussions out there about sleep or lack thereof. If meds like Seroquel or lorazepam or whatever isn’t quite working I suggest you ask about trying temazepam. It comes in 15 and 30mg doses. I’ve been using the 30mg for DW now for a couple of months and it hasn’t let me down. At first she woke up pretty…
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A big Ouchy for New Year’s Eve
First, Happy New Year. After being in the kitchen all day cooking up a storm, I spilled a pot of boiling water on my arm and foot. My skin started disintegrating before my eyes. So so scary. As I’m screaming in pain DH starts hitting me in the head. Thankfully my phone was near and had to call 911. It was an unbelievable…
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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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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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Will my dh ever understand he has dementia?
Is there ever a time my husband will realize and accept that he has dementia? After at least 10 years of a slow decline, I’m just worn out from it, and incredulous that he’s still adamant he has no issues with memory. He screams that it’s ME who has the problem. To the outside world, he can seem pretty normal. And he’s not…