Frankly. The last thing I want to read and focus on is ~~ Demamtia/Altzheimers~~

It’s bad enough my husb is and always has been self centered and comes from a self centered family who NOW gather around him like he’s the king of Sheeba. While I’m left to love with him and know what he’s teally like.     I’ve read and know enough NOW about this mind stealer that things are only going to get worse for me while he just walks around in la la land being cared for and dementia ppl don’t even know what they do is wrong.   the main things I’m working as far as living with him are these.  #1.   DO NOT ARGUE    #2. DO NOT CORRECT #2.  DO NOT  TRY TO REASON WITH.  

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  • Wishing you strength and grace 

    Like 1
      • lenore licavoli
      • I'm a caregiver
      • lenore_licavoli
      • 3 yrs ago
      • Reported - view

      Rhonda Lindes That was the proper reply, she's struggling, don't make it harder on her...

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  • As I read your comment (several times) I am trying to wrap my mind around what you have stated.  A side the fact that your husband (may or not be) self-centered you chose to marry him.  Now, that he has developed Alzheimer's /Dementia, you sound resentful  and inconvenienced. You have seemed to have taken his disease and turned it around and made it all about YOU! The title of your comment alone clearly shows your lack of compassion.  FURTHERMORE ; your comment on him walking around in "La La Land" is disrespectful to anyone living with this horrible disease! If you are not wanting to give your husband the care that he needs and deserves, it sounds like he would be better cared for in a assisted living facility! 

    Like
      • lenore licavoli
      • I'm a caregiver
      • lenore_licavoli
      • 3 yrs ago
      • Reported - view

      Amber Lee Haines-Sollars WOW so harsh

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      • none
      • none
      • sheri_and_kids
      • 3 yrs ago
      • Reported - view

      Amber Lee Haines-Sollars 

      Wish it was just that easy. He wasn't who he has been for the last 6 years but as I might have said, due to lies that he told me in the very beginning I married him only to find out he wasn't who he represented himself to be. If I had a "marriage" it would have been different but to just be left to do everything is tough and I have my own problems. I'm sorry that you see this as "only about me" but with a guy that doesn't care about anything or anyone I do wonder why I have been the prson that has to take care of a person that has never been a friend or confidant and the only reason I made it 20 years is because I have no choice financially. I am an extremely compassionate and empathetic person but taking care of someone that doesn't even care about me unless I take care of everything for him is a lost cause. I appreciate your feedback but this only a marriage by a 20 year old piece of paper and with my severe depression lifting over the last 7 months I realize I am not a worthless person and nobody seems to talk about how the caregiver makes it some kind of a life for his or her self.  I never had a marriage so I'm just here, alone and yes, he is in La La Land and doesn't even want to help himself  - to me it's a thankless job but he is well enough to sit on porno/singles sites and I would never do anything to hurt or disrespect the concept of what a marriage really is. You absolutely have no reason to judge me by what you read or what you think I'm doing wrong. I am a strong woman now and I deserve to live the short life that I have with some friends and people to talk to, that's all.  Thanks, Sheri

      Like
      • none
      • none
      • sheri_and_kids
      • 3 yrs ago
      • Reported - view

      Amber Lee Haines-Sollars 

      Amber, I looked at your picture of you and your husband, I am nowhere near that. Never being hugged or anything in 22 years is very hard - we don't have the bond that obviously you and your husband do but if you don't want to talk about Alzheimers/Dementia why come on and bash me when this IS a Alzheimers/Dementia forum and I shouldn't feel SHAMED by people that have no idea what it's like being here and always no matter what as there is nothing I can do to help him when he gets to the point that I can no longer care for him. Your response was very out of touch for a person that has never had more than a marriage certificate certainly no marriage and no way out - before the six years ago or now.

      Finally through very hard work on myself and my severe depression of 50 years I am proud of what I have done and what a moral compass I do have. To judge me when I am so far down and drained beyond belief, I realize this is probably not a forum for me. Luckily other people have been very supportive of me and I treasure that.  Sheri

      Like 1
      • lenore licavoli
      • I'm a caregiver
      • lenore_licavoli
      • 3 yrs ago
      • Reported - view

      Sheri Lynne Heinmiller Not me Sheri

      I've  got your back, I dont judge, no one has walked in your shoes, and its a tough walk. Don't explain yourself to the judgemental ones. Have they done what your doing.

      And my two rescue dogs are my loves one is deaf one abused and 3/4 blind...this whole darn world has such negativity, spread love n understanding, don't waste your time on them send me all your anger, I get it, I will always support you...you were venting, and have every right too, this is an awful, time consuming, tiring job..hang in there, like I said before let all those fawning over him, take over...take care of yourself, I understand fully...Amber Lee Haines-Sollars have you walked her shoes, I am right now..dont judge, just understand..

      Like
      • none
      • none
      • sheri_and_kids
      • 3 yrs ago
      • Reported - view

      lenore licavoli 

      Thanks for just writing. yes, I have just spent this morning (God, it's 3 pm) writing the people that treat me like haters when this world needs each other more now than anything. I can't belive what a divided and hateful world it is and my heart is shocked by the negativity and yes I did respond because I have been trashed enough. I get up at 1:30 have chronic insomnia because I never have felt safe in this world due to my sted dad being so violent and have never felt worthy of anything - my mom said I was a mistake of the rythmn method gone wrong and I'm sure she meant well but as a little girl I ever herd was the mistake part and my step dad just locked me in my room for months (except for bathroom) and beat the living hell out of me starting at 3 years old. He said later that he never had a book on how to raise a kid and I THOUGHT only - gee what did you think this child had to cope with a stranger tht left me so battered that nursery school was going to call the CPS if I came back like I looked ever again. Thanks for your kind words as I need a lift or I will end of going back to where I was - I used to go to my parents friends house with them when I was as little as 13, excuse myself to go to the bathroom and then look in their medicine cabinet for anything that might kill me or make me invisible and I hated my life so much I never wanted kids of my own because I couldn't guarantee that they wouldn't end up being a child that just wrote letters to God for months on end just because He was my only hope - and I am not an organized religion person - ust believe in a Higher Power and pray every night with my dogs. Not for me, but for all  the suffering in this world and the horrible loss of life due to COVID and dying alone - it's beyond me.  Thank you, Sheri

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      • lenore licavoli
      • I'm a caregiver
      • lenore_licavoli
      • 3 yrs ago
      • Reported - view

      Sheri Lynne Heinmiller you need that book I told you about...what a purely hellish childhood thank God you didn't become an abuser..im so sorry you had that at 3 it makes me ill just to think about it...try n let it go you are better then they treated you...its over make your life better...you can do it..

      Like
      • none
      • none
      • sheri_and_kids
      • 3 yrs ago
      • Reported - view

      lenore licavoli 

      No Lenore it's just the opposite -while I grew up I could never defend myself without  fear of more trouble and as a parent to so many innocent rescue dogs I have always known that abusing anyone is certainly not appropriate and causes so much pain in every way. All I recall you suggesting is self help books but I have read tons over the years - I am trying to read THE 36 HOUR DAY which is about how hard it is to try and cope with a person with dementia.  My step dad was just an angry, strict, hateful person and took it out of me - I would never allow a little (or big) dog to be treated like I was.  What was the book you had in mind?  Sheri

      Like
  • You hit the nail on the head on all topics.  We signed on for better or worse.  This may be worse, but we still signed on.  It takes strength to care for another...as the saying goes 'man up'.

    Like
      • lenore licavoli
      • I'm a caregiver
      • lenore_licavoli
      • 3 yrs ago
      • Reported - view

      Gordon Bennett Are you going thru it yourself, if not you do not know....

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      • none
      • none
      • sheri_and_kids
      • 3 yrs ago
      • Reported - view

      Gordon Bennett 

      Sounds typical of a "man up" scenario from a man tht doesn't empathize with women and the role they play in this - I don't want to man-up" as the saying goes because I don't and never have had a marriage except on paper. I am a woman that is alone, afraid and has no future - I would call that kind of coping skills in spite of it all as being an empathetic woman that works tireless for Don's quality of life yet I have none. It hurts a lot Gordon.  Sheri

      Like
  • How do you cope with feelings getting hard when it"s the dementia talking and not the person you love?

    Like
      • lenore licavoli
      • I'm a caregiver
      • lenore_licavoli
      • 3 yrs ago
      • Reported - view

      Susan Anderson Exactly it's almost like you don't love him anymore, and that sounds hard...

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      • none
      • none
      • sheri_and_kids
      • 3 yrs ago
      • Reported - view

      Susan Anderson 

      I haven't had time to cope with fellings of any kind. I am up and taking care of this family 19 out of 24 hours a day. I have read myself to death on this disease and it isn't always the illness talking - Don has bitten me, hit me and yells because he is who he is WITH dementia. I'm not saying he was a great guy before but he was at work, came home, ate and went to bed. He doesn't like people and sure doesn't like me and then the next sentence is how pretty I am or something that is his little way out from being responsible for his behavior. I do not love him, I care about him but we have been in a love-less marriage full of lies from him for these 20 years. Just because I can't move on due to finances doesn't make me a cold person -- funny, beause if you knew me you would realize how hard I work to make his life smooth sailing while he has never thought about my feeling. I can tell him what I am going through, such as a fear that I have breast cancer and can't get that ultrsound redone due to my covid vaccines for 8 weeks, my feeling lost and never being touched - every human needs to be touched not by someone that feels like a roommate. Lots of judging on this forum, some positive, some not so much but really you don't know me at all and I am doing the best I can. My step dad started beating me at 3 years old and never quit until I was 18 and got out of the house. Now it's physical and emotional abuse from Don WAY BEFORE he started to decline rapidly from his diagnosis - everybody has a different story but it was so important to me to share mine and have the courage to do so as I speak with nobody and my parents have gone to Heaven years ago - I try to do the best for my dogs and Don but where do I fit in? Why don't I matter except to my loving dogs???  He also can't hear and that's with hearing aids and couldnt care less if he did - when he thinks he is so great and treats me like dirt I resent it BIG TIME but that is my reality. Should you find that acceptable for yourself, let me know.  Sheri

      Like
    • lenore licavoli
    • I'm a caregiver
    • lenore_licavoli
    • 3 yrs ago
    • Reported - view

    I understand, but your going to get some flack because of the way you worded it.  Our lives were all about him and his wants also. Moved 20 times, hard on me and kids.  Now I too am going thru anger at him/me for not understanding enough. Unless someone has waked in your shoes, they do not know how hard it is.  You know the right things to do, but you get so angry about all the lost years, waiting for it to change, so easy to judge you, I'm not I feel your pain and share it.  Take care of him because he doesn't remember how cold and uncaring he was.  His mind is sick, now we step up and try, over and over every day to just survive.  Read self help books, and take care of yourself and let all the family fawn over him, less for you to do.  Work on the anger that's a tough one for me..I so agree, DO NOT ARGUE, DO NOT CORRECT AND DO NOT TRY TO REASON WITH, hang in there girl, I'm with you.

    Like 1
      • none
      • none
      • sheri_and_kids
      • 3 yrs ago
      • Reported - view

      lenore licavoli 

      Hi Lenore, Yes I just read the posts I got from you and others being so mad at me. That is so odd as due to covid 19, I couldn't even figure out what was going on and how he turned into a shell of himself until February (last month) and was so surprised to find out he is so much worse than I thought. I am angry - you bet - this is not a marriage, never was. Just because I am here because he was fired 6 years ago and then really became nothing more than a walking dead type of person - is very hard. No, I don't talk back, I don't yell back or engage in any way but that doesn't make this new real diagnosis a disaster for both Don and myself. I do nothing as I can't trust him with the dogs and it's like I'm being the one that's the big scapecoat just because I never had the money to get a divorce as I filed a year after I married him finding out his lies, but he talked me back into and said he would change and I am a believer of the greater good in people. So this forum has been very unsupportive of a person struggling through loss, never had a chance to greive, read constantly about the disease and he couldn't care less. Fighting for a MARRIAGE is one thing but just because I never had a choice to get out doesn't make this situation any easier except for him. I just found these messages today as I have never written about MY feelings before and certainly took a lot of flack. Don's quality of life couldn't be better and yes, thanks to me he worries about nothing and does nothing. He didn't just have Alzheimer's in February when he was diagnosed - it's been a mess for years and I finally got the courage to get on this forum and ask people wht it feels like for THEM as being alone, nobody to share my life with, never having intimacy of any kind or support for myself is hard. Every situation is different and it's not all about me but since I don't have genetics on my side I just hope to take care of my dogs (I've been adopting rescue dogs for 48 years) and it is the voiceless innocence of these animals that I thrive on but not all of Don's behavior is magically written off to dementia - he is in total denial (common) but very abusive and I will never have the luxury of putting him in safe care 24/7 as it is extremely expensive. It's a one way street with Don and always has been - that doesn't mean I am responsible for this 20 year roommate just because i have no means in which to change the situation. He certainly has no trouble taking care of himself except hygiene and emotion are totally gone for him now.

      Thanks for writing both notes - I am so scared and never thought I would get so many judgemental responses that are negative, negative. Some people should know me and that wouldn't take one post that I made to know what is really going on.  Thanks, Sheri

      Like
    • Natacha C.
    • Home health caregiver
    • Nat_Cia
    • 3 yrs ago
    • Reported - view

    I understand where you're coming from, my father has not been a nice man to any of his children or his wife-my mother  (who has passed away), he comes here, looks at her picture and says ....there's that crazy woman.

    It is hard to care and be companionate for someone who has not been nice to you. Hopefully you believe in God, I pray as I do for myself (as I am caring for my father who is also self centered, stubborn and arrogant) that the Lord, fills you with plenty of strength and compassion to carry on as it gets harder as time passes. 

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