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?

I will give you 4 times that indicated my mom knew she had Alzheimer’s; When I took her to get checked out and the Dr. diagnosed her with probable Alzheimer’s she turned to me and said “You brought me here just to tell me that!” , in a tone of I knew that. 2. Once she had abdominal pain, and I wanted to figure out where the pain was coming from I wanted her to lay flat on the bed. Even with one step directions she couldn’t lay flat. So, I said it was not that important for me to know, so she should get up. She “You are angry with me.” Me “No I just wish you were able to follow my directions” she “You know I would if I could “. 3 Mom asks my hard of hearing Dad “Are you my Dad?” Dad “What?” Me “Mom, it is time for us to leave”. I did not want to confirm what my Dad might have heard. My tone of voice clued my Mom that she said something wrong. On the walk to the car, she said “You know I miss my dad. I miss everything! Everything is such a mess” And 4. My visit this week with my mom her face lit up after sitting with her for a while, and she smiled at me. I recognized the look of ‘You are here!’ So I kissed her and said “I love you”. Her eyebrows furrled and her eyes filled with tears. When I started to cry she gave me a bittersweet smile. Indicating to me we connected and she loved me to. These events have occurred about 2-4 years apart, as she was diagnosed 10 1/2 years ago, after 3 years of noticing her actions were amiss, but denying their was a problem.

Easiest answer....yes they do.

The mind, even with someone in a coma can hear what is being said, but can't respond.

They can remember things from decades ago, but not the current time.

My husband's grandmother talked to Gramps, her deceased sister and her parents. THE ONLY person she recognized was our daughter.

Just go along with it. Do not say any thing negative to them. What is happening is their reality at the time.

Talk with whomever they're talking with too. It helps to comfort them and you're not hurting anyone.

I would hope that none of us dealing with ALZ or any memory loss would judge another person on how the difficult decisions we made were "right or wrong". It is the most painful and heartbreaking for all members of a family. We can only speak of our experience.

I think the acceptance of the realities really depends a lot on the personality of the sufferer, just as it does with any other serious ailment. Some are able to live with whatever life throws at them and even thrive with their disabilities..
Chronic illness depends on the final prognosis. For example someone who has become paralysed knows they will not get worse and embrace their limitations,
whereas someone with a diagnosis of MS or ALS knows what is ahead of them.
50 yrs ago when I worked with geriatric patients if someone was admitted with normal cognition it only took about three months for them to sink to the level of the other patients.
So much more progress has been made since those dark days including the birth of the modern hospice.
Antibiotics were in their infancy and polio was still rampant. Rehab was not on the horizon, the patient stayed in an acute bed and was taken daily for PT.
Childbirth in hospital meant ten days in bed with the infant in the nursery ( in my case thank goodness). Most surgical cases stayed as inpatients till the sutures were removed.
The children units were filled with long term patients often staying many months. teachers came in on week days so lessons continued as usual. There were even activities like scouts. i remember one afternoon the scout leader was teaching a girl how to light a fire ON THE BED!!!!! Luckily the bed had been pulled outside.
Sorry went off on a tengent again.

MsPatS: Quite honestly, working on family ancestry IS REALLY DIFFICULT, especially when you get into, i.e. an 8 times great grandmother. A person with a great skill set may even have difficulty. I did. Some of our ancestors had been married 3 times and it gets challenging. Give him a break, as a lucid person even has difficulty with it.

My MIL has old age dementia 97. She is in denial, but at times would say "I forgot to do this or that" and most of the times she blames us for everything she forgets. "I didn't put in there or I didn't do that or the devil made you lie about that". It is so frustrating to have someone with this condition in your house. It's sad but that is the nature of this desease. Hang in there.

My partner also knows -- and is reacting with anger, aggression and the depths of despair. Because there are still flashes of comprehension I have refused some of the meds for him. He seems so much more at ease after even a short visit in reality. He is now in the best facility available where we live. I know he is safe and protected, and I know I was unable to ensure that when he was home. Accepting that was the hardest and most painful decision of my life. I do not know what to do to help him adjust and accept. Words are not the answer. Perhaps the only thing is holding his hand, sharing a meal and making music available to him.

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.

This is a question I ask regularly, does he know he doesn't know or is he trying to hide it because he knows. The doctor told me that sometimes really intellectual people can hide a lot of dementia with their intelligence. I think that's my Dad but, then he says or does something that leaves me wondering. God bless everyone that has to deal with this demon of dementia.

My husband used to work on doing Family Trees for friends and family, than one day he said "I can't concentrate on this anymore" the next month he called from the golf course and asked me to pick him up even though he had the car. After that things went downhill fast, within a month he no longer knew who I was or our grown children. Than the anger began. We had to put him in assisted living and after six months he was in Alzheimer's care. It is so difficult for loved ones, my thoughts and prayers go to all the families who must deal with ALZ. It affects all of us, both emotional and financial.

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.

Terrie55: Yes, they know when they're in initial or moderate stages. They may not be able to verbalize what has happened to their bodies, but I believe that they do know something has been altered about their person.

During the stage of confusion and early memory loss my mom knew this was happening to her and was very aware of what she was losing. It was painful to watch but I would try and patiently engage and share information when she asked. Now in the final stages of dementia the only blessing is she no longer has an awareness of what she has lost. She lives only in the present moment - literally. She doesn't even recall things from 10 minutes ago.

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.

When my mom first showed signs of dementia she would know she couldn't remember the name or number of a place she called the day before, but would call me to ask me. Her decline was rapid. She then started asking for her deceased brother and I told her he was deceased and told her she was having trouble with her memory, she'd then say "I know, you're right" and she was saddened by the understanding what was happening. She then asked for my dad, and I reminded her of the date that he died and she looked right at me and said "I can picture him dying in the hospital bed, why can't I remember he's dead?" I had no answer, and it was heartbreaking. Twenty minutes later, she asked for my dad again, this time with tears in her eyes, as if her subconscious was telling her, he wasn't there but she couldn't help but ask. Now the doctor says she's in late stage dementia and I have her on palliative care. I am going to visit, and maybe she will remember me and maybe she won't. At this point, I don't think she knows anymore what has happened, her losses, her confusion, but I think in the beginning, yes she definitely understood something wasn't right, was malfunctioning, and it scared her. Be her comfort and as long as she doesn't seem to mind, keep things light and let her live this journey happy.
Dementia: grieving your loved one while they are still here, to only grieve again when they are gone.

When my husband was diagnosed with Alzheimer's he said he was glad to have a name for what was going on in his head. His driver's license was up Jan 28. In California if you are over 70 you have to take the written test every time you renew your license. He has failed the written 3 times now. What is sad is he barely fails. You can miss 3 he misses 4. He is going for the 4th time next Monday. He is sad and frustrated that he can't get the answers. I think if he missed a lot it would be easier. He has been such a talented man in his life it breaks my heart. I notice he is living tools in the yard, all the rose bushes weren't trimmed this year. Anyway, right now he knows. My heart is breaking for him all this week.

My mom had dementia for 5 years and from day 1 of her dementia refused to admit that she had an issue. She was always a very positive and happy person and remained that way throughout her dementia and kept my Dad going. She'd laugh and make jokes about her memory over the years. After my Dad passed she was sad and began to fail but continued to be a positive and loving influence in our lives...she kept my sister and I going. I'm so grateful for that. I know it could have been much worse.

Mom does. She went through that angry raging period where she denied it. Now she simply says "My memory isn't so good." when she can't find things.

Alzheimers and dementia does not mean they can't learn. I'm trying to fight the tide by teaching mom new things. Research has shown that people with spots and brain shrinkage consistent with dementia did not show any symptoms when they were alive if they were constantly challenged and learn new things. Thus I'm trying to do that with mom. It's slow going but she does learn new things. You just have to be satisfied with baby steps. I push her to frustration, since that's how you really learn something new, but not so far as to make her stop trying it the next time.

Back when Mom was with-it enough to know something was wrong, she would get angry and I would get frustrated and the repetitive nature of things. Finally, as we were both at our wits' end, I told her we had a choice to make. We could either go being angry frustrated and hurt or.........we could just enjoy each other for the time that was left.. she decided that the latter was much better!!
I became more tolerant of her 'forgetfulness' and she had many less episodes of anger at herself.. And now she does not even know us, I don't think!! God Bless!

It’s kind of neat, when you think about it dispassionately. At time of birth, we’re like an empty slate, then we write new memories during the course of our lives, only to get those wonderful memories wiped clean at the end!

In Hindu scheme of life, our souls take several births and deaths. We have lived through multiple lives in different bodies with so many different parents, taken so many wives and husbands, had many more children and what not. Do we remember all those lives and all those people, whom we once held close to our hearts? It’s kind of an existential dementia! So, the present affliction is just a glimpse into a bigger scheme of things and for our souls to understand the illusory aspect (maya) of life!

You are very Blessed that she is content with where she is, knowing or not. My dad has an official brain shrinkage diagnosis and refuses to believe anything is wrong, so he is miserable and tries to make everyone around him same.

Be thankful for the small things with this horrid disease.

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 .

I believe the answers to this question depend largely as to what kind of dementia is involved. The OP asked about Alzheimer's but some of the answers seem to be addressing either all kinds of dementia or types other than Alzheimer's.

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.

I think the dementia sufferer knows things aren’t right and that there mind isn’t functioning properly. It has to be scary for them. Perhaps you mother is someone who just rolls with life’s ugly surprises? But if a person has fought with life all along, they’d be more likely to be vicious and violent.

Just my theory.

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.

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 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 mom also knew. It is heart breaking.

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.