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My Mom's companion ( Howard) walked out on her on 4/29. I do not blame him. He could no longer take her physical abuse and emotional abuse. I have had her in my care since. I did get her on meds and she has been so calm. She owns her home but, she cannot live there anymore. Her focus is only on getting Howard back.. I do not understand how she can remember that he left when she cannot remember what was said toher 5 minutes ago. How does one help her to get him out of her mind? It is so sad to see her cry and ask me to help her get him back.......If I could, I would..That is the only thing that would make her happy.

I do not understand this disease..It does not matter how much I read, I just do not get it.

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"I do not understand how she can remember that he left when she cannot remember what was said toher 5 minutes ago." This is really, really common, because in many cases of dementia short term memory is worse than long term. Someone emotionally important from the past will be remembered well even if what you ate for lunch isn't. In soem forms of dementia, particularly Alzhemier's, people remember the past vividly while not remembering more recent events, e.g. they dont' recognize a loved one because they remember them as much younger; in non-Alzhemier's it may be more common to recognize loved ones even when other aspects of memory and thinking are severely affected. The ability to do automatic, simpler and more often-repeated tasks are more preserved than multi step ones. My mom could feed herself but there was no way she would ever learn the steps in using a hearing aid; they had to TELL me that, because I was so frustrated at her never wearing it even after I got it all adjusted and working great to converse without yelling...I assumed somethng was wrong with it or it was hurting her. And many, many people with dementia lack the insight and judgement to realize their memory is faulty, hence the "looking at you like you have two heads" thing. THEY don't remember, so it didn't happen. WHAT disease?? We have a disease??? No...we're fine, thank you! It is very sad but try not to let it hurt your heart as if they were fully understanding and remembering and trying to upset you, thery're almost certainly not...hugs and God bless...
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Teepa has Youtube video's.I attended her conference last November after learning my mom may have dementia. It helped me to understand the disease more. Google it. She is awsome.
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that would be so helpfull. please let me know
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They had mention at the Caregiver conference about Teepa Snow. Was their any videos that she has that can help us caregivers that r dealing with a difficult parent sometimes? That way we can educate ourselves to reduce the stress for the person n ourselves as well.
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You are getting AMAZING advice and help here - and I have little to add. Just one thing. I had training with Teepa Snow this past week (so awesome) and the way she calms the person who is fixated on and worried about someone is to take them by the arm and look into their face and say "It sounds like Howard means a lot to you. Tell me more." and walk while you talk. It could be that you'll relieve a little anxiety by talking with her and really listening. I know this is hard - my 8 hour days with a woman with fairly advanced Dementia were extremely long. Hang in there - I trust you'll give yourself a break whenever possible.
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To all Caregivers who are suffering: Mental Illness is all-encompassing. It is many diseases. Dementia is just one illness. I couldn't begin to describe nor classify all the forms of dementia. For a laymen's explanation of mental illness you may want to read The Merck Manual. Seek help from a professional who will give you a diagnosis. Focus on Mental Health. Knowing what to expect and what not to expect, makes life easier when dealing with an ill person. Lighten up! It's a hallmark of mental health. Good Luck!
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Jeannegibbs, you took the words right out of my mouth.

Waverun, eventhough u live 3yrs away n I understand u r concern for you mom. However, a support group could help you so that when something does arise then u will be able to deal with it hopefully without so much stress. That way u will be able to help your mom as well. Because u mention that Howard walked out on your mom n that u said, "I do not blame him. He could no longer take her physical abuse and emotional abuse." All the more reason your mom should to seek or both of them go seek some support. Whose to say that, if Howard gets tired again of her abusiveness n leaves for good because he his tired of it. The issues need to be address to a profession, support group or counselor so that work on the issues to help resolved so that they can have a healthier lifestyle n you will be less stress.
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So you both can't go to the same support group ... but you could each go to one in your area!
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Jeannegibbs---That would be a great idea. However, My Mom lives 3 hours away from me. I just worry because I am so far away from her. I spoke to her today, and she sounds great!!!. One day at a time.
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I am glad to hear that Howard is back in the picture.

Perhaps you can find a local caregiver support group that you can both attend. Most people find that very encouraging and educational.
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To make a long story short, Howard came back after he did his own soul searching. He wants to care for her and be there for her. My brothers want no more to do with it. They believe he will walk out agian and they said" When he does, they will not help at all" What tehy do not understand is, he is not going to care for her on his own. I am still a big part of her medical care and a big part in sharing the responsibility and since they have not helped me at all and given me some down time, than they have no say in what and who helos me in her care. Howard does love her, he realizes he was part of the problem because he did not understand the disease and he did not understand how to handle her. He would have to be right. If my Mom said the sky looks a little red, he would agitate her by tring to convience her he was right. He may still do that from time to time as he learns more about this ugly disease. I do believe he is sincere and loves her. Since my siblings have not been here for her and or helped in any way, than I feel they have no say so in how her care goes. It pisses me off to no end that they now want to chime in....Screw them. The brothers are selfish and worng . ( in my opinion)....My Mom has been doing very well with her mood swings. For the oast 3 weeks she has been lauging, joking, holding a conversation and really listening to what I have been telling her. She is aware that Howard left because of her meness and nastyness towards him. She actually says, I know I chased him out with my beahavior but, I do not understand why I would do that because I love hime and he has always been so ggod to me...She is aware..And her laugh, Oh My, It is deep and real again. I did so miss her laughing and enjoying herself. My Mom is a hoot and she really is harmless.

Now, I am a co care taker and I feel relieved to know that I am tring to do what is best for her and I am alwyas going to be here even as this disease progresses. I will be teh main person to get her to her apponitments, adjust her meds as needed, to help her continue a life with dignity as long as possible. I love you Mom and thank you for always being her for me......I miss you as you are not here with me today.........

Here is to all of us who love and care for our parents, husbands, wifes......
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Waverun, yes, dementia is very difficult to understand! What specific kind of dementia is she suspected to have? Reading on that particular subject can help you know what to expect, and can help you convince yourself over and over that it is not your mother who is being mean, it is the effects of this dreadful disease.

First a couple words about Howard: Hiss! Boo! People who abandon their soulmates when the going gets rough get very low marks from me. Superficial men who "can't deal with" their wife's mastecomy and divorce a cancer survivor, cowardly women who won't stick by a mate with diabetic complications, life partners who take off at the first sign of chronic illness: hiss and boo!

In Howard's case, it is true that dementia is especially difficult to understand and it is easy to confuse the disease-driven behaviors with intentional meanness. Also, apparently he and your mother never promised each other "in sickness and in health" -- or at least not publically. Still, my words for Howard are Hiss and Boo!

You, of course, are never going to abandon your mother just because she developed a disease she has no control over. You are researching and trying to understand her disease. You are reaching out for support from others in similar situations. You are going to see this through. Good for you!

I want to make it clear that being there for her does not always mean, in my mind, that you personally have to do all the hands-on caregiving. In fact, that may not always be in her best interests. Placing someone in a care center is NOT the same as abandoning them. Arranging for help in caring for someone does NOT mean you don't love them 100%. Removing yourself from direct contact with abuse is not the same as walking out of their lives.

It is sad that the one thing your mother thinks she wants is something you can't give her. I wonder if it would give her any comfort if you stepped partway into her reality. If you told her that Howard is out of the country right now and that is why he isn't in contact with her but you know he has always loved her very much, etc. would she remember that tomorrow? Would she repeatedly ask when he is coming home? Or would she accept it at the time you say it, move on to other topics, and then later ask all over again and accept your explanation all over again? I sure do not know. Remember your goal is to relieve your mother's unhappiness, not to preserve some abstract truth.

I am glad you arranged some medical help for her. Continue to work with her doctors to provide the best quality of life she can have at this point.

Hang in there. You are going an awesome job!
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"roxy916", god bless you for devoting yourself to your mom's care for so long! Please watch out for your own health. Be objective about the toll that the exhausting amount of care you're providing is taking on you. I've seen that happen time and time again. Is there a possibility of getting your mom into a nursing home? If she's spending that much of her day in bed, she absolutely could use the care of a nursing home. They also are used to helping those with dementia adjust to their new surroundings.
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My Mom's going to be 82 in two weeks.Usuall y she's in bed at least 22 hours a day. I go to her house 3 times a day. i get her up we go to the bathroom to change her diaper, 9 times out of 10, I tell her take off her diaper and put it in the bag I'm holding she does. M,W,F is bath day, she can get in and out of the shower,I get the rag wet and put the soap on it, I try to keep the same routine.First she washes the front of her body,and I do the back. I then put soap on her head and tell to wash. One thing she doesn't like if I go down below,which I'm happy about. Now we do food. I make or buy everything she eats. She can't use a fork, only a spoon. Eating doesn't take long, but usually half way through,she wants to go back to bed. For my mom the med's are important ( kind of) I ask the doctor to take her off her Xanax,Zoloft Big mistake.Two weeks later she was a nut ball, as fast as I asked him totake her off I called to get her back on them. Everything has been ok till last week. She want back to the past big time,stayed up 3 days straight,getting into everything.So I moved as much stuff I could so she wouldn't get hurt.Now the 4th day I stayed the night she never got up 13 hrs later. Just like others I'v read she wants to stay in own home. I'v taken to my house to see if she'd like it here. She gets upset,confused,she's out of her zone. I'v been taking care of her for 7 yrs, and health wise. She's healther than me. I look at dementia as having a baby. I do her as a baby(most of the time). As others have said god bless and love them while you can. debbie s.
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Dementia is an awful disease. I cry often when I think of my mother and her slipping away from me. She was a smart, intelligent woman, who studies all aspects of life by way of reading, for over 40 years. Now this dementia is taking over and I have seen her get worse in the past couple of months. A woman who loved her clothes and would dress and do her hair two months ago is asking what to wear hair a mess. Someone who was positive loving life then hit a depression a few months back now is negative towards me for I am the one who took the car away, I am the one who has aids in her house 24/7, those people coming in her house last year the state people my fault. I have been losing my mother for the past few months more and more each week. She doesn’t even want to talk to me on the phone anymore where we would spend hours talking of her life stories over and over. She has hit me and never believed in hitting us as children. I cry for wanting her back and yet I can never have her back again. I love you, mom and wish you were not suffering so.....we are in this together.
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Dementia is a very complex disease. Both my in-laws have it and it affects each of them differently. My father in-law can't remember doing things recently, like turning on the stove to boil water and leaving it on. My mother in-law thinks things that happened years ago just happened.

Dementia can also cause the patient to have false memories. The brain, in trying to fill in gaps in memory, leaves them believing things happened when they didn't. My mother in-law says I murdered my dad and spent 8 years in jail. This didn't happen. I've read that people with dementia could take a lie detector test and pass because they truly believe what they're saying is true.

My husband, brother in-law, and his wife and I all wish the end would come sooner than later. Neither of my in-laws has a real quality of life anymore. My father in-law is too stubborn to accept outside help like from a home health aid so we all take turns taking him to the grocery store and we visit on the weekends.
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This disease is hard to understand n sometimes all u can do is go with the flow n don't let the little things worry you.
Hannah, your mom sounds just like my mnl others call it mil. She will zip/unzip n it will drive me nuts! I finally got her to pick out a purse with only ONE zipper for she would lose stuff in the old one with a ton of zippers. Sometimes she will say that someone has taken my money. I try to keep humor around to help me from going off. So, r theive is called, "Casper." Sorry Casper. Yes, she will repeat.... I bought a eraser board n write down the answer if possible to what she is asking n it helps some. You r so right that it is easier said than done some days. You just got to find things that will help make your life a little easier as much as possible.

Dmwills, I see u bought yourself a board too, way to go for it helps some n that is better than nothing. Good for you n I like the plug in cord story to explain.
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My mom has dementia and one thing I learned is that there is an obsessive-compulsive component to the disorder. My mother will zip and unzip her purse dozens of times looking for something she has already determined isn't in there. The other thing she'll do is ask the same question perhaps 5-6 times in a hour. Knowing about this component helps me to stay patient and remind myself that her brain is different now and she can't help her behaviors. Having said that, it's easier said than done some days!
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To make super simple,this is how it works. Your brain has 2 kind of electric cords.#1 is the old cords that have melted themselves to the sockets (that is long term memory) and fresh new cord that still push in and out with ease.It is the easy to retrieve and think it is 10 years ago because the cord is bonded in. A new happening is hard because sometimes only one side of the cord gets plugged in. I use cheat sheet for him . At breakfast we have a little blackboard for our day we write on and a calender to write on if someone calls,if we took a shower,brushed the teeth or whatever needs to be remembered. It give him some of his degnity back and saves me the terrible twos at his age of 84.
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Dirk, what is this ketogenic diet? I've heard about it, haven't researched it yet. And I agree with the others that dementia sufferers are very changeable - my husband was joking wittily in the morning, then in the afternoon is was like a switch flipped and he wouldn't take his meds, cussed at me that I am NOT his wife, even called the cops to report his "wife was missing." Luckily got a very understanding cop whose mother had dementia. But you're right, Lucky Dog, they can appear relatively normal to others or early in the day, but when I tell people these stories I think they figure I can't be making it ALL up! I wish I knew, too, Skid 70, when is the right time for a foster care home. Some days he's very sweet and calm, other days kinda scary in the focus he gives to weird projects (putting address labels on his birthday cards and stapling newspaper to put in a big envelope and mail to get some prize?). That obsessiveness is what you are seeing, waverun, but I'm not sure how you deal with it when it's about a lost loved one. With my husband, I just let him work it through and he's mostly done with it. I don't know whether there's any way you can make her feel you are trying to help her get him back, unless there is some way you could contact him and ask him to see her now she's better. That could be really cruel tho if he won't come back. Other caregivers have told me that lies can work -would it be any worse to tell her he's dead? Sounds weird, but at least that would be a final sort of grief?
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I Understand that very upsetting things may make a new neural pathway in the brain, bypassing the usual path of communication with in the brain. This may explain this type of thing. I think the area of the brain that processes emotions is a different area than the place that is unable to record what was just said. Over simplified explanation, but has helped me to cope. If Howard isn't a bad guy, maybe he would participate in her care now that she is on med's and calm? Have you let him know she is calm now? Like other posters, I know you will need all the help you can get. It is also easier for people to adjust and make friends earlier, rather than later, when dementia is present. No one person can manage this alone--it will take all the support you can gather. I've found some helpful stuff on an alz reading room. Can't put a link here, but maybe you can look it up. Good luck and do begin to Marshall your troops, and get moms affairs in order. We used an elder atty for trust,pour-over will, poa's and advanced directive. It's complicated, start now!
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Dementia is hard to understand..she has problems choseing her words - like if she wants spaghetti for dinner, that word won't come out...so she tries to describe it for me..or she will look at her dresser and tell me she is not sure she has all that she needs - she's drying to recognize her deodorant,perfrume, etc..and I tell her atleast once a month, it is all there...when these events happen its so very frustrating to her because she is aware that her mind is messing her up...yet she still is able to dress herself, bath, wash dishes, and give my father advise, etc. the thought process of getting a meal is not something she can do..she may set the table, placing down the utensils and forget the plates..so I don't understand this disease at all either...and if its going to get worst - when?? I saw my cousin's Mom deteriate quickly to me with alzheimers..i'd perfor my Mom to leave this earth as she is now..then to decline as my aunt did...so, I too just take it one day at a time..I'm my parents only child...and it hurst me so when they forget what they've done or did and I tell them its the disease that made them forget, and they look at me like i have TWO HEADS...i'm so glad I found this sight, it is so comforting to know that I'm not alone and from you ladies, my tomorrow may be brighter. My Gods blessings continue to be with all of us!
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My stepmother has dementia, and it is more exhausting being around her than caring for my dad who has a plethora of physical and emotional problems. She will sometimes repeat the same statement every other minute all day. What is so frustrating is that her two daughters won't take her to be evaluated. They just want me and my siblings to have my dad committed, so they can "take care" of her. My dad is not preventing them from doing anything; they are just avoiding doing it. She is not in bad physical health and I've wondered if Alzheimer medication might help if they would have her evaluated.
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My 86 year old mother has sundowners now. during the day she appears to be very normal but after five she goes into her own world and calls out to her deceased husband and new boyfriend all night long! how do I handle this it makes me look like the bad guy and making everything up because no one sees what she is like during nightfall? Please help me
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Dementia seems to vary from person to person and from day to day. I doubt that anyone really understands it, and there's little that one can do except try and keep the patient comfortable, and look after yourself. Until recently I saw nothing but a slow decline in my wife's mental health during the past two years she has been in bed, but a very recent change towards a slightly ketogenic diet has been encouraging. Using coconut oil wherever I could, her demeanor improved and I saw glimpses of the wonderful person she used to be. The changes could be part of the normal variations in dementia, but my intuition and scientific training tell me the changes are real. My next step is to try and get her closer to a truly ketogenic diet. If further improvements result I will post them.
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What I find that a caregiver must understand is the nature of the disease, where certain little brain parts are dying off and can't function as they did. Some days my Mom seems to be nearly her normal self--which was rather mean, anyway. At others she seems out of it and cannot remember anything said to her all day--so we repeat over and over. Personality and what she can and cannot do for herself change all the time--we just have to remember that this is a real disease, not the person choosing to remember certain things and not others or behave certain ways and not others. It takes so much out of you to be a caregiver--so if you are now the main one, get all the help you can get. I'm not sure how long your mother had Howard around as a caregiver, but ANY change in her environment will bring about some sort of reaction, usually a worse one. Often patients perseverate on one topic--in this case Howard, thinking and talking over and over about it. Most often it is something in her far past, but no one patient with dementia is the same.
My advice to you, since you have already read things about the disease, is to talk with others doing the same thing you are--you will see the similarities and differences in each patient. Good luck.
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I think that dementia affects people in different ways. For example, beginning 8-9 months ago my 87 year old mother is certain that there is "grit" growing in her hair & she has to scratch it out to keep it from growing down on to her forehead. Once she said that she could not put her hearing aids in because one of her ears had filled with the grit.
This progressed to her thinking that a piece of plastic is growing out of her right elbow. So she has to rub that to keep it smoothed down. More recently she says that there are scales on her face that she needs to rub off. So now she spends hours on end scratching her head & rubbing her elbow & face. It is going to be interesting to see what comes next. It is interesting that in all other respects she is ok; at least for now. Her 90 year old sister is certain that there are people who come in her windows every night & sleep in her house.
So there is no "one size fits all" when it comes to dementia!
It took a lot of reading on this wonderful site for me to finally accept that I can not fix it. My mom is slowly slipping into her own world. As much as I want for her to be her old self, that is not going to happen. I have to accept the world that she is in & try to deal with it because she can not be in my world any more.
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I agree with "picture". If it's financially feasible for her to make a move, start taking her around to look at communities. Her condition will only worsen and, as you point out, she could go on for a long time. The cruelest aspect of dementia is that some people remain remarkably healthy for years, long after their personalities and thinking abilities are gone. I think it should be considered malpractice to prescribe any but palliative medications and procedures for patients with advanced demential and Alzheimers. I know of a case where a surgeon inserted a pacemaker in a patient who could no longer reliably recognize his own family members. So few doctors these days look at their patients as whole people.
Interacting with new people at a community will help re-direct her attention away from Howard. The loss of him must be devastating to her, but I understand his need to preserve his own physical and mental health. At some point, you may have to put your foot down about what's best for her. She is no longer capable of making complex decisions. Much like children, the decisions of those with significant dimension are driven only by what they want at the moment they want it.
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Where she is now is not where she will be in a few months from now. The time will come believe me. Take her to assisted living facilities and they will have you both join them for lunch or dinner. (lunch is better, it is their main meal there, lol) and she can see the activities and help there. And the great social aspect for someone able to still get around. Just visit. I felt I was always behind one step in where I took her for care, but actually, the disease is one step ahead. Always plan for the next step to be.
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