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Eight years ago my husband was diagnosed with Dementia. He had previously had a heart attack and lost oxygen to the brain. He has refused to believe there is anything wrong with him and has convinced his primary care doctor that he is fine and I am the one with problems. I am very glad I found this site because I really don't know what to do. I have been living 8 years of hell. Please help

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My mother (81) has some form of dementia. I will be taking her to Johns Hopkins Bayview Memory center next month to find out what kind. The problem is that she is terribly mean to my father who is 86. He is so kind and gentle but to her everything is his fault. If she forgets something, it is his fault. She picks and picks and picks, berating him over and over again. He is her main caretaker. I live in another state and try to visit often. Today, she spoke of God not protecting her because of how she treats my dad. She seems to know what she is doing and watches for things to yell at him for. Any suggestions?
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I think I was so worried my Aunt was going to put gram in a home and I wanted to take care of Gram as long as I could.

My aunt said "if she cant take care of herself then she's going to a home"....and so I just took care of Gram....did it for 6 years....I didn't call social services because I thought they would put her in a home...and at the time, Gram was happier at her home...
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thinking back, I wish I had known to call social services on my aunt...
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That's wonderful that you were able to find a way to give your husband the medicine...it can be such a battle.

And you are right, medication doesn't make everything hunky dorie...but it made life easier for both Gram and I. I was happy to not to have to see her full of anxiety....

My Aunt (her daughter) lived down the road and would come and visit gram every couple of months for a short time.

She thought "oh no! Xanax is bad! It's addictive!" so she took them away from her. That made my job harder....

Then because she didn't spend much time with Gram and didn't go to all the appointments and didn't believe me when I told her how bad things were with Gram....she took away the caregiver (20 years before gram had taken out an inhome care insurance)..it only helped for part of the day or 3 full days. I used it to help with the NIGHT HOURS, so I could go home and sleep, knowing someone was there.

But my aunt took away her medications....and then took away her caretakers, saying that Gram was upset about having strangers in her house. Never the thought of the fact that I may like to sleep in piece a couple nights a week. Plus I was raising my own family...at the time...

So there was Gram, no medication and no caregiver.

I had two choices....leave gram alone for the night and go home and sleep as I had hoped......

or stay with Gram each night....

Aunt never stayed more than a half an hour or so...one time she didn't show up for 8 months...and stopped in to say "hey' and leave.....but when she was there Gram was happy to see her (gram never realized she hadn't been there in 8 months, because she was so loved and cared for by myself and my kids, she had lots of conversation and everything was taken care of)....so when her daughter saw her gram said "everythings good".....well ya! Things are looking good, because we are doing it...she is on medication (not enough to put her to sleep, just enough to make her not scared about life)....and she had family.. and the kids and I could go home at night because a caretaker is coming in.


I decided NOT to stay....

My aunt got lots of calls, each hour...."normally she wouldn't answer the phone, not even when her mom was having a heart attack at night"...when I asked her why she wouldn't answer the phone, she said "Im sleeping at that hour"... hello! We all are!

But that weekend...her daughter took away her medication and her caretakers.....and her phone rung and rung.....she gave Gram back her caretaker and Xanax....

I put so many years into trying to work everything out for Grams good and in one shot, she comes in and changed it!

If I had stayed with Gram. her daughter wouldn't have gotten the calls all through the night and days......her daughter would have thought everything was hunky dory...

It was a very sad and hard decision to make, not to stay with Gram....

sorry...I got off topic...
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With the Ativan, aside from the whole pill before bedtime, our Dr. prescribes for during the day, if needed, I have only had to give 1/2 a tablet in daytime as my husband was raging and I could not re direct him, I handed him the half a tab & water and asked him to take it, the threw the glass (shattered) and pill across the room. I went to the coffee maker poured 2 cups of coffee placed the other 1/2 tab in his cup then I turned to him and said can we sit and talk about this, we'll have coffee together, he drank it and mission accomplished.
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videos would be helpful for the DOCTORS to see....not our loved one... You and I don't know how scared we would feel if we knew we were suffering from a progressive disease. They never want to admit how bad it is and we cant force them..not even with a video...videos would be helpful for the doctors to believe you....
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Holding On Give a Hug, Im so sorry you are going through this. I can imagine how hurtful this must be for you to REALIZE the he actually BELIEVES what he is saying. I know....it's like we LOST the person (meaning as if they kind died), but they are still there. Im so sorry. My Gram raised me and was a mother to me....I know it hurts....

Your husband must have a bit of good memory still, because he remembers you left and is threatening you about leaving again....

About your kids, it might be best that none of you actually confront him....it may make him feel like he cant trust anyone, he may feel that his closest people (family) have turned on him. It's not the same as doing an INTERVENTION for someone on drugs.....the interventions have to be between you and your grown children, and you SHOULD include them in on EVERYTHING. You cant do this alone. It will break you...allow and ask them for some help. For instance, instead of saying to your husband "Im going to break I need to get out of here"... maybe ask if your kids will come sometimes and say "Im going to take mom to the store,, to help me pick out carpet." or whatever excuse... then you can get away...and cry...and your kids are going to have to get use to realizing that this hurts you too....you cant stay strong forever. I did it for many years...in the end we will break....and it can effect us physically.

I hope you have family who will step in and work with you.


Arecept caused hallucinations for my grandmother and my father in law...as did another memory drug...I think it starts with an N...cant remember the name now. Hallucinations make everything 100 TIMES WORSE. If you notice any signs of that...get them off that drug.

I think people with enough money (not myself) to hire help or place their loved one in a nice place...are fortunate. Hired help at home can be very beneficial, even when the loved one FIGHTS IT...we just have to use anxiety medication....so that they will be more relaxed and get use to a NEW FRIEND (helper)....and you can sleep with both eyes shut....or go cry alone somewhere...

I would also suggest you find an in person support group. My personal doctor recommended I go to done after my grandmother died (last November) it's called Caregiver Syndrome Support Group. I may go sometime. But I think had I gone when I was still caring for Gram (over 6 years full time) it would have really helped me a lot.

It concerns me that your worried he might snap, since he doesn't trust you. Sometimes you have to talk to doctors privately FIRST, before...without your loved one knowing you have spoken to their doctor....tell the doctor what is going on...run up that doctors phone line if you have to (I did)...get the doctor on the phone...tell him/her everything.....then when you and your husband go in...the doctor already has a heads up, but your husband doesn't know...so you are not 'the enemy" .... if your doctor doesn't believe you...record it...phones make it easy to video now.....ask one of your kids to come over and record...while your talking to your husband and distracting him....show it to the doctor....maybe one of your kids has to come for a week, to catch the 'ACTING UP' on video..it will be worth it, because then your husband will get drugs that help these type of episodes.. Memory drugs like Arecept, are NOT going to help with the anxiety...and your husband IS ANXIOUS...once you get that under control...things will get somewhat easier...

It sounds like your husband may be in the beginning stages...sometimes the progression moves very slow....and in the same person...progression can all of a sudden take a quick turn...

the hardest part for me was getting the right medications to help with the PARANOIA, ANXIETY or DEPRESSION....three different drugs...sometimes more...serroquel for paranoia....if it doesn't work, up the dose, don't give up and think it didn't work before you up the dose and maybe give two or three times a day...we gave up the first time, thinking it didn't work...it did work..when we tried it again a long time later and upped the dose...I learned from a group similar from this, that sometimes we need to up the dose and / or make it more frequent.

Celexa or lexepro (try celexa first, it's less strong)...for depression.....

atavan or Xanax for anxiety. We put it in with Grams daily med case....we never told her what it was....that might be hard for you...since your husband knows... adding it to a little pudding might work....I would suggest ativan as it lasts longer (I think)....Xanax wasn't normally enough for gram until we had her on the seroquel and clexia....I may not have spelled the names right...
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I am in a very similar situation with my husband. I started realizing he was suffering from early onset dementia when he was 61 years old. To this day (He is now 66), he is in denial and I have learned that I will never be able to use the terms dementia or Alzheimers with him. He reacted to my concerns so angrily that I was very fearful at times. It took me over three years to get him to a doctor for a physical. The first doctor told him he was fine and to just get some extra exercise. He had always been very phyically active and in good physical shape. He threw this in my face and angrily told me over and over that it was me, not him. with the problem. I later found a husband and wife physician practice who have worked with me. When he went on Medicare, we told him the insurance required him to get a physical. They were then able to get him examined thoroughly and the doctor started him on Aricept Unfortunately, he had negative reactions to it and after 10 months, we stopped it. This situation has devastated me emotionaly and us financially. I am physically exhausted trying to handle him, everything with the household and work full time in order for us to survive. I have learned the triggers that set him off and I have learned that no matter how frustrated I am, I have to avoid them.
He ,also, sleeps a lot; most often 10 to 12 hours. I am relieved in the evening when he goes to bed at his early time, as he sundowns and can get rather agitated at times. I have mourned the loss of a husband and the man I knew. I don't think most people realize the grieving we are going through along with everything. I have a special spot I go to to cry and thankfully I don't find myself there as often anymore.
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I have taken videos with my phone but only showed husband one time, he could not believe that was him calling me the things that he did & he begged me never to show anyone that, he apologized many times over, and I did not show anyone, it is such a private thing. before our Drs visit, we both have same dr & I make back to back APPTS for both if us, the Dr never uses any trigger words with him, but then she tells him it's my turn, he leaves with a male nurse & we discuss him, I always submit an update letter before she sees either if us, so she knows what is happening, then confirms with me and meds get adjusted accordingly. I think from reading your post that your husband does not take any, or takes his own meds. Mine does not do that, I fill his pill boxes and if he was not on 75 mg of Zoloft daily, this house would have to have iron bars on it as it would be a zoo! Around 8 pm with his eve meds is an Ativan, with it he sleeps through the night, without it neither of us sleep. meds do not make this trip " hunky Dorrie" there are times I wonder that they are working at all, I have learned to try my best to have patience ....but it is tough! we are here for you.
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Pardon me, you may be making hell for yourself. Your husband may not become more compatible but you can avoid arguments trying to convince your husband that he is sick. The doctor is taking the right approach...agrees with your husband but probably knows otherwise. Yes, continue learning about your husband's behavior changes but also try to be more patient, compassionate and relax. Gene
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You poor thing. I think your husband and mine are about the same stage, but my husband has gotten a little nicer. We call his condition ADHD, because that's an OK diagnosis to him.

Can you write a letter to the doctor before the next appointment? Give him lots of examples of the changes and declines you see. Tell him how resistant your husband is, and ask him not to use trigger words with your husband like memory loss.

Can you write a letter to your husband about how much you love him and the good times you used to have? Tell him you love him and want to change your relationship to the way it used to be. Tell him YOU're getting older and failing, ad ask him to be more patient with you. If you can put him in the superior position, he might feel more generous to you.

Can you manage to fake a tear or a sob or two when he is attacking you? It might just make him mad, but it might make him feel superior and more forgiving. What actually worked best between my father and my mother was when she would fake losing her temper. That would calm him right down. In other words, try something different from what you have been doing, something that is out of character for you.

Guilty secret about me: I'm the "smart girl" and I just love it when "I'm right and you're wrong." I try really hard to keep that part of me out of my conversations with my husband. Even though I know it doesn't help one little bit, sometimes I slip up and gloat about him being wrong. I have to remember that it almost never matters "who's right". Try never to correct him unless it's safety related and urgent. Facts no longer matter.

You have a very tough situation. God bless you.
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I did leave once, I told him I need to get away just so I could breath. I drove around and cried for about 45 minutes and came home. The next time he went into a rage he said something to the fact if I leave this time don't come back. I wish I could video tape him and play it back, but I'm still not sure that would help. I just want him to get help because there is help out there. I know he is ill, but I really don't know if I can continue this if he does not get some help. I don't know whether it is moderate or severe because I don't have anything to compare it to.I realize he is unaware and it is not his fault, but what do I do?
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When your husband's rage unleashes (actually, preferably before) simply tell him you will not subject yourself to it and WALK out. Seriously. By staying and allowing him to rail into you is actually condoning his toxic behavior. You can simply say: You are being rude. I love you but I will not subject myself to your tirades. I will be back later.

Leave the premise and go visit a friend/family member, go shopping, go for a drive, go to a movie. Just go. Yes, at first you will feel guilty and you will probably cry - but it does get better. Trust me.
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I know it is not his fault and I have come to the conclusion he actually believes what he is saying and that saddens me. We will married 46 years in July, he is my high school sweetheart and to hear him talk to me the way he does hurts
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No because sometimes he accuses me of putting something in his food then he will say he is only playing, but I know he is not. Another thing I have noticed is he sleeps a lot. He takes a 2-3 hour nap during the day maybe twice a day and by 8pm he is ready for bed.
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@ sandra,
yours is an exceptionally good explaination imo. sounds like you speak from experience.
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Would you be comfortable hiding the Aricept in his food? Is that possible? I am so sorry, you are having very difficult days.
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Over the last 8 years my husband has gotten more and more angry, hostile self centered and he has told me over and over he feels like I am his enemy. I never what will set him off. I walk around on pens and needles, picking my words, trying to say the right thing. He has good days and bad days. He use to go about 4 or 5 months without an outburst, but now it is down to 1 or 2 weeks, and that is if I'm careful. I always try to diffuse his anger by telling him I am sorry I should have done or said it the way he is hollering about, but it doesn't end there, then he wants to know why I would do or say what I said knowing I was wrong. It gets to be too much for me at times because I have to think up a lie to tell him. He gets so angry that he actually looks like a different person, and I feel he could easily snap. His mother passed away from Dementia 2 years ago and I thought he would get help, but he insist he has no problem and I am the one with the problem. He has even told me he will probably end up taking care of me. That scares me. I have grown children with families of there own. I tried to keep it from them but I had to let them know, but he just told them I have changed and that I am mean and I want to control him. I thank GOD that they have seen this behavior for themselves and have even talked with his doctor as I have but to no avail. When he was diagnosed with Dementia we went to see a specialist who sent him for numerous test and gave him Aricept. My husband refused to take it and told the doctor there is nothing wrong with him. We do go on trips but that is getting very uncomfortable because he is never happy about anything then he gets angry with me. The only place he acts decent is at church and that is pushing it. There is a lot of bad behavior from him, but as long as he is working outside in the yard he is happy. He really doesn't want to go any place or do anything. I have noticed that whenever he gets angry, it always seems to be in the morning. When I get up he has a look on his face and I can tell it is not going to be a good day. He will be 65 in a couple of months and I am going to try and talk with his doctor again and ask her when he comes in to get his physical if she would please run test. He has even gotten turned around while driving...........I'm just holding on
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I went through the same with my Grandmother who suffered Vascular dementia. She suffered a lot at home with depression and major anxiety. She had a heart attack towards her last years and she didnt remember. She remembered when she was a child and she remembered who we were. But she didnt remember why she was in the hospital, she had no idea what was wrong with her accept that she felt she was a little forgetful. I had a hard time convincing doctors that I WAS TELLING THE TRUTH AND NOT HER. As soon as Gram walked into the doctors office she would act like everything was fine...and everything was far from fine.

I learned a few things. #1 Dont argue with dementia loved one. It doesnt work. They CANT understand or remember.
#2 it seems like they are being inconsiderate of us...and they are....but they cant help it. They are no longer the same person (fully)..they have lost thier ability to rationalize.
#3 If gram thought she was being poisoned, I told her, not to worry, I cooked the food and made sure it's clean and fine. If she thought a caretaker or someone who came into the home to help me had kidnapped her and taken her into a basement, I didnt tell her she was wrong (tried that, it only made her feel more anxious because I wasnt believing her and she really believed it)...she thought her living room was a basement (this lasted about a month and then stopped, we think it may have had to do with Alzheimer medication)...I told her that I had called the police and they were on their way..she relaxed, for got about it and was ok..
#4 if you can, privately video episodes, and show them to the doctor (when loved one isnt looking, you dont want them tot distrust you)...
We also used and tried many many medications to relieve the anxiety. seroquel helped, xanax, celexa. We once had to resort to using haldol. But that is a last resort and dont use it as the bottle says. Give a tiny piece, cut it in half and in half again...and DO NOT REPEAT unless necessary. Somtimes we cut it into a 1/16 piece. Looked like a little grain. and sometimes we used a half of one if she needed it. We only used haldol for one week...and weaned her off. Had we known what we know now. we would have never used it round the clock or for the whole week.
Many hallucinations are caused by medications that are suppose to help with memory. they didnt help with memory and had horrible side effects for gram. She stopped with the horible hallucinating a month after being taken off the memory drugs. In the mean time haldol worked. We never had to use it again. But we kept it on hand, just in case.

It's not their fault, they are arguing....they really believe what they are saying...the worst part is dealing with their anxiety....and keeping it under control with medication ...then they will argue less.
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Since your husband has had a heart attack and as a result lost oxygen to his brain his primary care Dr. is probably aware of this. He's probably aware of the dementia as well. I cared for my dad and he'd have all kinds of symptoms and issues but when we went to the Dr. and the Dr. would ask, "So, how are you feeling?" my dad would reply, "Oh, just fine!" I'd fall off my chair. I'd feel like an idiot since I would be in touch with the Dr.'s office because of my dad's illnesses so the Dr. had access to all of my dad's issues. And when my dad would deny any problems it would make me crazy. So I would be the one to bring things up to the Dr. MY concerns. My dad would still deny them and I'd feel like Chicken Little but they'd be addressed. This is just one of the million reasons my dad needed me to take care of him, because he wouldn't do it himself.

It could be that the Dr. isn't going to stand there and say to your husband, "Now Mr. Smith, I know you're not fine. Looky here, you have _________ and ________ and that leads to ________....." But I would bet that his Dr. knows what's going on. Is there an issue you're having with your husband that the Dr. hasn't addressed?

Does your husband refuse to believe that he has dementia? This could be a part of the dementia or maybe just denial. Denial is very common. Or the dementia could be preventing him from being able to understand that he has health problems. In his mind maybe he is ok.

If your hubby was diagnosed with dementia 8 years ago would you say that his dementia is moderate? Severe? What's the worst part for you?
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Hang in there and just keep on reading. You will learn that the dementia itself makes it difficult for the person affected to realize that they are not 100% mentally. And that arguing with it will not get you anywhere. Dementia is not reasonable, and people with dementia can't be expected to be very reasonable about much of anything. that's all there is to it. And, that some doctors do not take the time to do a mini-mental status and realize that someone is not 100% either...but at least someone knew enough to diagnose the heart attack and the dementia at one point. Maybe they are not as convinced by hubby as you think they are, maybe they are just humoring him some, as you probably have to do also!

Can you ever get out together or do anything pleasurable at all despite his health and cognitive problems?
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