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Interesting observations, Joshmo.
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My mom and her sister were very close. Visited each other a lot their entire adult lives. Mom had to go to nursing home after an accident leaving her unable to stand or walk. Also was in about 3rd year of noticeable dementia. When her sister unexpectantly died at 87 my mom didn’t shed a tear nor a sad expression. All she says is I can’t believe she’s dead. Mom was then 94. I don’t think Mom “feels” sadness anymore. She also does not seem to mind being in the home after living with me for past 16 years and we are extremely close.
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Thank you so much, Mrranch2, for sharing your experiences with us! You provide extremely valuable insight.
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Malachy2, Alzheimer's and Lewy Body Dementia look different in the brain. AZ has tangles and plaques and LBD has tiny clumps ("bodies") of protein where they shouldn't be. It is not surprising that the symptoms are somewhat different, too. And treatments will vary between the two forms of dementia.

Memory loss is often less of an issue in LBD. There are more physical symptoms with LBD (similar to Parkinson's -- which also involved the protein clumps). All types of dementia involve variability but in LBD that is a core symptoms. There are good days and bad days and good hours and bad hours. It is so extreme that persons only familiar with AZ may thing the LBD person is faking symptoms. "He could do that perfectly well this morning. He is just wanting attention saying he can't do it now." AZ often includes eventually losing the ability to recognize family; LBD seldom includes that.

All kinds of dementia can include sleep disturbances; LBD is strongly associated with a specific sleep disorder called RBD, in which the sleeper acts out his dreams.

AZ progresses in a generally recognizable pattern. Stages have been identified and can be helpful in knowing what to expect. LBD does not progress in "stages" -- it does get worse over time, of course, but that tends to mean the "bad" episodes last longer and are closer together, not that the person goes on to new symptoms.

Those are just a few of the typical differences. While the differences in the brain are very distinct, it can be harder to identify the diseases from the symptoms. LBD is often misdiagnosed in the beginning.

The AZ and LBD websites provide a lot more detail.
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I have dementia--FTD and LBD--going on 6 years now. I visually and congnitively know and remember my wife, my grandchildren, my children, my siblings, and I love each, some more than others. Yet I also encounter people who know me but who I don't or no longer know--people who I have forgotten their names, their faces and everything about them but they know me. When reminded I frequently remember, often well, things we did or enjoyed together and sometimes I know and remember them at the same time.

Confusing isn't it? --that's the world of dementia: my wife and I recently met our son to pick up our grandaughter for a weekend visit; while I was sitting in the car my wife and son talked outside; he bent down to talk to me and I visually recognized the 33 year old man he has become, but my mind told me he was supposed to be a teenager. That's memory and dementia!

I find, however, my capacity for loving others is unchanged; indeed it is larger than I ever imagined. Love is caring, and is not necessarily romantic. As I mentioned, my love for my wife and family is unchanged. I have come to realize my love and respect for God is greater than I ever previously thought possible, as is my dependence on and faith in Him, His Son and His Spirit. And I have a deep and abiding love for many other people; people who I have never seen, nor have I ever met--people such as yourselves with whom I have only had contact through the internet or facebook, yet with whom I feel a closeness and kinship, the kind only experienced through love for another person (e.g., through facebook I am acquainted with a couple in Canada who I would love to meet; I truly care for them, and love them, as much as any other member of my family. I only regret we will never actually come face to face in this life anyway)

Going places? I prefer to stay in my den, in my recliner, with my little carepartner - a 14 year old dachsund. My wife is a 36 year RN (great advantage when I have to go to see a doctor). She is a marketer for a psychiatric hospital and travels throughout west Texas: from Amarillo, to Lubbock, to Presidio and Del Rio, to Pecos and Van Horn, to Killeen and Ft. Hood, to Austin. Home base is in the middle, San Angelo, and we live just outside Midland. She covers an area larger than most states (check it out on a map) and is often gone for 2-3 days at a time! Yet I am fortunate enough, at this point, remain home, alone. Dr appointments are worked around her schedule. We have a couple of neighbors I can call on if I need something badly (I've only had to do that once). I can still drive the couple of miles to the Dollar General or the convenience store for milk or dog food, but I prefer to stay at home.

We used to be devout church goers (Sunday AM, PM and midweek). I led singing, prayers, and served communion while my wife taught a class of kindergartners and first grade. Church attendance is still extremely important to both of us, but I rarely go now. I've found, though I enjoy the services as a whole and usually feel edified by being there, I tend to get confused and/or lost in the bible classes and sermons (I wish the teachers/preachers, when they cross reference other parts or verses, would finish with one before going to another), and sometimes the other attendees make me feel overcrowded which leads paranoa and disorientation, all of which results in general confusion, discomfort and "isn't it over yet?" Not worth the risk of disrespecting the Lord or any of his servants; He knows I haven't forgotten Him.

I usually force myself to go with my wife to pick up our granddaughters for a visit or to go to the grocery store; otherwise, I usually stay at home. Why? It's safe! I've had too many experiences of not knowing where we/I are; I've been lost, disoriented and paniced in stores, while standing next to my wife, too many times. I'm concerned about becoming lost while talking my care partner for a daily walk (I wear a medicalert dog tag and use a wonderful cell phone app--Watch Over Me--I highly recommend it) and though I am able to, I don't drive anywhere (including backing the car out of the driveway) unless I absolutely have to (might wind up somewhere I don't want to be and not know how to get back). In short, I have a tendency toward paranoia and panic (also parts of dementia) and prefer not to take the risks.

In addition, I've reached a stage where I sleep--12 to 14 hours at night and generally a 1-2 hour nap in the afternoon (sometimes after being up for only a couple of hours); and I'm becoming more and more incontinent of bowel and bladder (I carry extra depends in both cars). Those latter two things (sleeping and incontinence) are much more embarrassing than not recognizing someone.

I hope this all adds some clarity to your concerns ND-18. Dementia (all kinds), regardless of it's source (mine was triggered by surgical anesthesia in 2010) is a very complex disease, not restricted solely to memory, which is where most people, including us, tend to focus and expect problems. It is one l-o-n-g roller coaster ride that one must learn to enjoy; for there IS LIFE after dementia, and the patient and the caregiver should NEVER GIVE UP.

Hope this helps. God bless you all.
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How does Lewy Body dementia differ from Alzheimers?
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Dementia is a brain disease. A patient's ability to show love may be blocked by the disase itself. Assume the patient is grateful for every act of kindness etc if/ and especially when he/she cannot show it. "Love never dies."
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Dementia slowly kills the brain off...they may not remember who you are at times. But by showing your love for them in little ways, they will feel secure and loved and will respond to it. My sweet mom was always a kind caring person. When the dementia took a drastic turn she was very mean and spiteful. I agonized over the change in her and took it so personal at times. After learning so much about this drastic disease it became clear to me that this was not mom talking..the disease had made her this way. I prayed for her and did what I could to make her feel loved. As hard as it was at times to do it...I made sure that every night before she went to sleep, I would kiss her on the cheek and told her that I loved her. She would smile or giggle..bet after a bit she felt the love, and started to be loving back. Some nights when she would wake up in the middle of the night we would just sit at the edge of the bed...I would rub her back and she would lay her head on my shoulder. Not a word was spoken..we just held each other. I love and miss her so much. I have purposely stayed out of the stores today on Valentines day because I don't want to cry when I pass the cards. I always gave mom flowers and a card. I am feeling a little sad today...cherish the times you have with your loved ones. God Bless.
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ND18, the responses are all very good. The thing that you wrote that stuck out in my mind is that your mother never showed the type of caring that you needed. I wanted to stop and validate (excuse the cliche') your feeling. I do believe that there are people who are not capable of feeling the type of love that children need. They can feed and house them, take care of them when they are sick, but the sweet type of love is not there. I don't know why some people either don't feel or don't show love.

If that is the case with your mother, she will not begin to feel it now that she has dementia. So it may be good to stop looking to her for what you hoped might be there. There is love all around you, though, so I hope you find it in other people. This doesn't mean that you have to stop loving and caring for your mother, only not to think her not returning the feeling has anything to do with you. You sound like a daughter who is seriously capable of love, and you sound like you're doing your best to take care of her. Go easy on yourself since it's not you. It's her.
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My dad had Alz and I don't think he ever quit feeling. He always smiled at me when he saw me and held my hand. I was a daddy's girl, I think he knew who I was. One evening I bent down to kiss him and said, see ya later dad, I'm leaving and wanted to say goodbye. He looked me in the eye and said in a couple of weeks we'll all be saying goodbye. Two weeks to the day and hour, he passed away. I truly believe his mind was still working, he was just "locked up" in there somewhere.
Dad had always been a gentle person but the last few yrs of his life, he fought my mother with a vengeance. He was sweet as pie to everyone else but her. We think he was getting back at her but who knows and it doesn't matter now. I miss him terribly.
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Soon after onset my husband had a period (about a month I think) of paranoia, where he didn't trust anyone, including me, and thought people were stealing from him. For me as a caregiver that was the worst period of the nine-and-a-half years he had dementia. And it was probably among the worst for him. Can you imagine being dependent on other people and feeling like you can't trust them? That they might intend you harm?

That period aside, my husband never lost his ability to show love. It helped that he never lost his ability to recognize people. I think it also helped that he accepted and understood his diagnosis and therefore had an explanation for why the world didn't make sense and why we couldn't fix it for him.

Even when he was talking gibberish, he would still say "thank you" for small services.

Different dementia types have different symptoms. Some include not recognizing familiar people, some do not. Some have accompanying physical disabilities. Some have less of that. And each individual is different, too. So I don't think we can generalize about if/when people stop being able to feel or show love.

My husband was diagnosed with Dementia with Lewy Bodies. He died in November and I'm awaiting the results of the postmortem examination of his brain.
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I can only speak from experience: I used to observe our great aunt when she was still alive & riddled with alzheimer's. From time to time she would forget her own children (this was during the early onset of the disease), but she did show strong emotions when they had done her wrong or when she talked about them to her caregiver. So I guess she did still feel something, but like what anne said, an expert is most likely to have a more informed answer.
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Susan, that kind of happened to me too, I had to not visit every single day and keep most visits short if I didn't want to be yelled at, commanded, and criticised non-stop. I have to think that from the point of view of the person suffering the dementia, the people who are part of the regular scene and setting are perceived as part of the Big Problem - the mysterious whatever it is that is keeping the person away from their normal life and self. So they are mad at the people that they think must be keeping them there, or perhaps not able or willing to rescue them...something is obviously wrong so why has their loved one turned on them and refused to fix it?? I looked at my old posts on here and it brought back a lot of memories...also realized one was way too wordy and technical, and just need to say that people with very, very limited cognitive and almost no physical abilities, like some of the kids I take care of, still have some love and sunshine for their moms and dads in particular, and few are blessed with beign that ray of sunshine for everyone they meet! The difference for an adult with dementia is that they remember, however vaguely, a world that made sense, and have expectations of a normal way of things that they can't understand is gone, let alone why it is gone...the last thing most people want to think is that it could be them. It seems incomprehensible to you and me that a daughter, son, or spouse that has always been loving an caring could suddenly turn into a no-good thief and neglecter, and yet, having lost judgement and perspective, that is exactly what a person with dementia may decide has happened.
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To be honest, this comes and goes, but I found familiarity breeds contempt, and I am praised everytime I visit Mom now, whereas I was demonized when I had the round-the-clock care of her.
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Must have been somewhere between my Mom telling me that she was going to tell her Father not to give me a tip, and when she bit me as I was trying to hold her upright - right after she tried to break my finger, didn't succeed but really stretched the tendons painfully.
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IMO, I don't think the caring or love ever goes away. It's just bottled up inside their brains, struggling to get out, just like words, thoughts, the desire to be their "old selves" again. Kind of like a "genie in a bottle" - it's corked and deep inside their brains and hearts and our loved ones are just...unable to "pop that cork" anymore to be able to let it out.
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Maggiesue, memory is a skill, and love is something the most unskilled person in the world might still have to give and receive. Think about my mom forgetting my birthday for the first time. I can tell you she still wants to give me money she does not have and she still relates to me otherwise as she always has. Now iif her memory and track of time were intact, I would have had to take her omitting my birthday as a sign she was angry or no longer cared, but that's obviously not the case. SImilarly, there is a condition called prosopagnosia or face blindness in which face recognition is impaired. Lack of recognition of close family members out of context can occur, and in severe cases maybe even in context. The defect causing this is localized to a small area of the non-dominant temporoparietal cortex - there is no impairment of judgement or empathy, and most of these folks have any number of clever workarounds for their problem - so that others don't judge that they are ignorant or do not care enough to remember a face!.

There is research showing differential physiological responses to familiar versus unfamiliar people that is not otherwise apparent. One article I read specifically about Alzheminers describes it as losing memories from present to past - so that first a grandchild born a few years ago would not exist in that person's conscious memory, then maybe a second spouse of a decade long marriage, then maybe the person does not remember the deaths of their own parents and wants to call them. This may be hard to hear, that there is still a person inside that dementia masks in such a way, but maybe a comfort in some way too.

Once when my Dad was having a bad day, my son just kind of assumed that we wanted to get out of thee ASAP and "that's not Dad anymore" but I know I found the opposite was true the more time I spent just hanging out and doing whatever he was still able to do. Everyone who got to know him realized who he really was, his likes and dislikes, despite his various inabilities.
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I have heard about cases where dementia will present itself in someone following an accident, surgery, or hospitalization for some kind of "crisis". Mystery Sue, you mentioned your mother's broken hip and subsequent hospitalization, and I wondered about this. I know, it is so sad to see these serious cognitive changes in our parents, and also personality changes which are a startling departure from their former selves. I have seen them in my father, who is like a different and new person. I cried many tears in my pillow several years ago when I first recognized the unmistakable changes occurring in his personality. Dementia has to be one of the hardest things to witness in a loved one. I guess we'll never really know for sure what or how much the elder with dementia is feeling....as far as love or affection. But you never know....because the other day my father started weeping out of the blue about something which reminded him of his deceased child. It shocked me, because I didn't know "feelings" like that were still possible for him.....but there it was for me to see. He was expressing deep emotion. And then the moment passed, and he returned to his former state of seeming blank and unemotional. But I'm thankful I saw that because I apply even more care now to my interactions with him.
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I had no idea demented people could still feel love for other people. How do you know they can? Some of them can't remember their children, other family members, friends. How can the demented still feel love for those people if they don't recognize them? I'm sorry I don't quite believe it's possible. I'll have to consider this bit of information for a while before I form an opinion.

I agree with vstefans, depression can be a huge factor in not caring. I think people with dementia can get depressed.
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Depression makes you feel empty of emotion inside, or makes you feel a kind of pain where you know there is supposed to be connection and joy instead, maybe she is avoiding the emotions. Depression really does hurt and suck all the zest out of life, even if you have faith and believe.

My mom also avoids many things she used to enjoy with or without us becuase they are too cognitively difficult or embarrassing for her. She stopped going anywhere except to the doctors also when she could still travel - got in a van to see my dad maybe once every week or two then stopped that too. Culturally that's what people of that generation do, its the old "sick role" whichis also embodied in Medicare policy; the only obilgation the sick person has is to get better, they are otherwise supposed to just stay home and let other things goo by the wayside. Frankly, it makes people embarce invalidism when applied to chronic rather than short-term situations but that's another story.

I have had to comfort myself with the realization that Mom is doing what she thinks is right and it is not for me to take that away from her. She does not think she should do things that she can no longer do well and prefers strongly not to face or discuss any negative emotions, or any possibility of criticism as she is also very perfectionist.
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Thanks for answering but I don't understand. If a person feels love inside, how does having an illness make them choose to stay home in front of the TV on Thanksgiving or Christmas instead of choosing to be with the people they allegedly feel love for?
My Mother, who went to church all her llife until two years ago this past September, allegedly loved God too but after she came home from the hospital after having fallen and broken her hip, which she came through with flying colors, never went back to church again.
She used her legs as an excuse (that's one of her favorites) but she manages to get to the doctors and back. She also hasn't said the "blessing" at her meals since then either, that I know of. She used to say it faithfully at every meal. When I asked her about why she doesn't say it any more and is she mad at God, as is customary with her, she wouldn't give me any answer. How can an illness cause her not want to go to church any more (she watches a couple services on TV) or say the blessing any more?
I really don't understand what one has to do with the other.
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I think it depends on the type of dementia, but a geriatric expert could help you determine that. Some types of dementia will cause the personality of the sufferer to develop a kind of blunted effect, so it SEEMS like they don't love or care like they once did. But it is just the disease of the brain causing this.....inside they still do love and care. There is still a heart and a soul in there, and dignified care is still what they need. After a while, we the caregivers get used to not "getting back" what we used to "get" from our parents who have dementia. It helps to recall the distinct memories we have of the parent, as his/her younger and healthier self--- mentally whole, compassionate, and empathetic.
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Sue,I think you are beating your self up to much,and possibly expecting to much from your mom.You have to stop expecting a sick person to react the way you see fit.My dad did not have ALZ ,BUT I did struggle with what you are going through.From what I understand it is not the same with each person that is sick,you can do the best you can do and thats it.I remember shamefully for the first time my dad acted [weird] I said are you tripping on acid.The second time,I said your losing it daddy.When I realized how sick he was,I felt very guilty,but I responded out of ignorance.The last few months he stopped watching TV,HE stopped petting his best friend Lucky dog,WHICH was always one of the first things he asked about.MY daughter his granddaughter was the last thing he talked about-Take care of his little angel,he said and died 10 minutes later.
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Thank you both for your answers. They both make sense. I especially like the first one because I care so much about certain people and things that I can't imagine ever not caring any more, not as long as I have as much wits about me as she has. I have met all kinds of people during my lifetime but my mother is the first person, to my knowledge, that I've known that doesn't care about anything or anyone, not even herself, so I thought maybe the dementia was causing it.
She has never been a person to show much expression of love but she always talked about it as if she felt it so I thought she did. I always thought I got my ideas about love from her. But now I see no signs of caring for anything or anyone, not even herself, in any way shape or form. A few year ago, someone (one of those pillars of the church) hurt me so bad that I was practically heartbroken. When I tried to talk to her about it (I expected some comfort), she just kept looking straight ahead at the TV, saying nothing. When I tried to get her to make a response, she said she didn't know what I wanted her to say. I bet most people could think of something to say if someone hurt their child or any loved one as much as that person had hurt me.
I honestly believe that she would be just as satisfied with a mechanical robot here instead of me if it was able to do everything that needs to be done. And I don't think she would care if I sent her to the nursing home. I am doing everything in my power to keep her here at home, which I've explained to her, but she doesn't seem to care one way or the other.
I was so frustrated and upset with her this morning that I was beside myself. She is deteriorating fast, both physically and mentally, and she doesn't seen to care, because all she does in sit in her chair with her hands in her lap and stare at the TV. No matter how much I beg or hollar, she won't even try to do something to help herself, something as simple as gettig up and walking with her walker back and forth through the house except when she has to go to the toilet. I told her this morning that she's worse off than
Stephen Hawking (a severely disabled scientist) because even though he can't walk or talk, except through a computer, he still CARES. She doesn't. No matter what I say, she won't give any response. I told her that treating me like that shows exactly how much I mean to her - NOTHING. Still no response.
When her eyes got so bad that it wasn't easy to see, instead of trying to use a magnifying glass (said it had a glare on it), she quit reading.
If it isn't the dementia, what could possibly make a person so totally empty of feeling?? If she didn't have alzheimers, I'd take her to a psychiatrist.
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I don't know if it will help to realize that even the most fundamental abilities and skils are eventually lost to the person with severe dementia- It may not be they don't care but they don't recognize, remember, or know how to show caring. I'm right now grieving my mom being unable to read, unable to dial me on a cell phone, and unable to make judgements about what she thinks she sees (her vision is poor). She still recognizes everyone and appreciates visits and getting new clothes and her favorite sugarfree candies and such.
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NEVER! Even the most demented person knows when they are being treated with love, respect and kindness. Dementia is a disease of the brain, not of the heart! Never does the heart stop feeling emotions on some level. As dementia progresses a person becomes more susceptible to emotions. When an angry or frustrated person holds an infant, the infant often becomes upset - dementia folks are just the same! Long and short of it: way after the ears and brain stop communicating the heart continues to feel!
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