Do you think our loved ones with Alz know what’s happening to them? Are they sad at lost abilities? Do they know it will only get worse?

My husband definitely knew what was happening to him. He was sad, angry, frustrated, and depressed at his losses. He understood the nature of his disease and hoped he would die of a heart attack before the dementia took its full course.

My mother did not know she had dementia. She was aware of declining memory. She seemed reassured that other people could remember things for her. She was reasonably content the final years of her life.

So the answer is some do, and some don't understand their dementia. And mostly we don't get to choose.

My aunt realizes that she has short term memory loss but as she says to one and all in a cheerful voice “ At least I remember to wipe”.
She loves to make me groan.

My husband knows and has accepted it.
When I ask him if he is unhappy his answer
is I have been lucky enough to have lived this long
and there is not much we can do .
I just tell him I will always be there for him even when he does
not remember who I am.
He is happy with that .

As a respite caregiver for Alzheimer's patients, two of the clients were highly accomplished and creative entrepreneurs. One had founded a major airline and the other was a helicopter news founder. I would engage them in conversation about their lives. Surprisingly, they remembered past events and accomplishments.
Proof that they had some cognition but were otherwise enmeshed in the disease elements. Both had accomplished wives who were their caregivers. I helped them create their life stories. One taught me gin rummy and then would cheat! I enjoyed my time helping their wives. Compassion is a huge element. I think drugging goes on too often with the elderly and families need to be vigilant. I have a friend who is caregiver for her formerly professional musician husband, and I have known them for 54 years. She is 79. It is tough. He remembers me from the old days. We all used to be on the road as jazz musicians. Aging is not for sissies as Bette Davis said.

I've read all kinds of responses on this. My LO seemed a little confused as to why she wasn't able to do the things that she used to do. She thought the tv remote was broken. The car door didn't work. The phone didn't work right, etc. It wasn't until the Neurologist told her that she had dementia that she actually seemed to get it. She seemed a little sad and said that she hated this, because she didn't want to forget her parents, because they were such wonderful and loving parents. I assured her that she wouldn't and so far, she hasn't and that was almost 4 years ago.

Later, she forgot that she had dementia and had no awareness of it at all. Of course, most of her other memories went as well and she wasn't even aware that she had gone to wearing diapers due to incompetence.

My parents ran into a family friend in a store about a year ago and she informed them that she had dementia and would be forgetting most things and so she was saying her goodbyes now. It was so heartbreaking.

Alzheimer's is a terrible disease. It slowly, eventually, if you live long enough, robs you of everything from your smell, taste, hearing, sight, feelings, cognitive abilities, to your senility. My Moma, 3 Uncles, and 3 Aunts had this dreadful disease. 5 passed away within 18 months before my Moma passed away. I saw one that had it and his personality didn't change at all. An Aunt changed so fast she had no idea who anybody was, not even her daughter. Another Uncle that had it, his personality was so violent, his wife almost couldn't do anything with him. My Moma didn't want to know anything about Alzheimer's, so whatever I read I kept to myself. I would try and tell her things. What she would expect to happen to her body, but she didn't want to hear it. I was so Blessed that I got to live with her and take care of her the last year of her life. When she passed away, I was sitting on her bed beside her, holding her hand talking to her. She was asleep, but I kept telling her the things that I was going to cook that day. Then I looked at her and all of a sudden I saw her breathe her last breath. She was so calm. Alzheimer's is a very mean, hateful, spiteful disease. And one way I don't think of it is "kind of neat". No matter how you look at it. And as far as Hindu being a part of our lives, I'm a Christian so I don't believe in that sort of stuff. When I die, there will be a day when my soul goes to Heaven, by the Grace of God. The only people I've held close to my heart are the ones in my family. And what do you mean when you say "It's kind of an existential dementia"? The only thing I can think of is you're seeing dementia as an existential threat. Which doesn't make any sense to me because dementia is a threat all by itself. My sweet Moma passed away at the young age of 84. I knew that I had a chance of getting Alzheimer's but not at the age of 62. Last year, in April they said it was the very early stages of dementia, I was 61 and then they did all of the tests, put me in a Research Group and did a PET Scan. That one showed the Alzheimer's in 4 different places on my brain. By then I turned 62. To answer Terrie55s question, Yes ma'am. I know everything that's going on, I know when I mess up, I know when I can't remember a word or what I was doing. They have me on medication and that's one medication that I never forget to take. Or try not to. I have lists for everything because if I didn't, I would forget everything. We've moved from where I grew up and the only place I knew for 61 years so I'm not about to get out and drive because I'm scared to death I'll get lost. I get depressed, I cry at the drop of a hat. But not in front of my husband. I have to try and be really strong as long as I can in front of him because he's working everyday without complaining on feet and legs that are swollen almost as big as an elephant. Since we've moved I'm praying so hard the Dr's. here can help him. I'll tell him that I'm so sorry that his feet and legs are hurting and he'll say " Babydoll, I'm just Thankful to The Good Lord that I have feet and legs that hurt because you know there's people out there that don't have either one". He's also told me not to worry, that he'll never put me in a Nursing Home. I believe him because I know how strong his love is for me an we also know that God has our backs. We know there's help out there, too. And I'm 5ft. 4in. and he's 6ft. 3in. and he's really big and strong. And I would also like to say to Seewell--your last sentence could mean a couple of different things. I would like to think that it means "We're expressing ourselves as an individualized unique person who is transitioning into what God made us into in the beginning"! But if we live the way God wants us to live, our Souls will go to Heaven and there we will be with our Ancestors. The ones we know and have held close to our hearts and the ones that we can't wait to know.

My mom also knew. It is heart breaking.

Babydoll62, I am on much the same path. I saw ALZ in my maternal uncle. He was in his early 70's. I was diagnosed with Dementia possibly ALZ at the age of 56 two years ago. Immediately my DW and I took all the legal measures to protect the family. My kids range in age from 37-11. I've tried hard to teach them about this disease, they listen but admittedly, none have done any research on their own. I have actively continued to do as much as I can at home while my DW work upwards of 70hrs a week keeping the roof over our heads.
Yes, I still maintain our financial affairs and I've told everyone that I feel needs to know about my condition ie. Banker, friends, who have distanced themselves since I've told them about it and some who even think, I am making a bigger deal of things than they are or will be. I hope that all who read this will stop, sit themselves down with their kids and relatives and tell them how important it is to learn how to recognize the symptoms of this dreadful disease, so they can be prepared for facing these hereditary problems themselves.
I complained about memory issues for 5 years to my doctors, who insisted there were probably other issues effecting my memory. Finally, they took note when my 38yr career came to a screeching halt because I wasn't making my goals and I was fired from my job. First time that ever happened since I started working as a paperboy at the age of 12.
I am now noticing new symptoms. I've stopped driving myself to unfamiliar places, because I get lost. I can't seem to learn how to use a smartphone app for navigation, so I put the brakes on that. I am experiencing instances of incontinence, I am losing hearing in one ear, I have more trouble finding words to describe what I need or want help with. I drop things I am holding on to like my smartphone, sometimes, I can't figure out how to answer the phone. I've never denied my symptoms and hope I never will. I've been very clear, that I do not want to be consuming a lot of my family's time with them feeling they have to make constant visits, when I won't even know they were there. I want all, especially my DW to keep on moving forward with their lives.
I take my meds pretty faithfully, but when the insurance company says no I can't have a medication or treatment, the doctors think I need. I won't let them appeal for an exception. I've chosen to leave things in the hands of our Lord and pray for his comforting protection of my family. I know things are not going to get better and I accept it, I am not giving up and I am a pretty happy guy. I've had a very Blessed life. Please, start teaching your families about this dreaded disease as soon as you know it is hanging in your closet. Babydoll62, I have included you in my prayers.

My mom knew she was getting worse. She would say to me I know I'm getting worse. It's sad. That was a couple years ago. She's way worse now. Just had a month stay in a behavioral unit of a hospital due to aggression at her assisted living facility. They won't take her back and foubd a skilled nursing place but more expensive but what can you do. They have her on a cocktail of anti psychotic meds to control the aggression. I cried most of Saturday after seeing her.

My husband is very aware of the loss of his memory at times and it is only getting worse. But before he ask me what day or time it is and am I his wife, I will automatically say something that will jar his memory, such as "can you believe how long we have been married" and I will say it's been 37 years. And can you believe how cold it is today and it's February here in California. We aren't suppose to have cold weather. I sit close to him on the couch when TV is on and put my arm around him and tell him how lucky I am to be married to him. This goes on and on. We've had a wonderful life together and I keep reminding him of all the good times we had even though he can't remember those good times. He loves hearing about those times. Good luck with your Mom. It's sad but this time with her will bring up happier memories for the both of you.