I invite you to go to the home page - www.thealzheimerspouse.com- and read today's blog - When Love Turns to Hatred. It was extremley painful to write, but the emotions were there, and they needed to be expressed. It is the sharing of these most difficult emotions that I feel helps all of us cope and learn from each others' experiences.
Has anyone experienced the anguish expressed in the Blog, and if so, how did you deal with it?
Yes, but not about driving. DH accused me of having affairs, getting a divorce, being unfaithful, etc. Hatred in his eyes, clenched fists, bulging veins, the whole thing. Somehow I never took it all that personallly because I knew it was the AD, but it was frightening. I will tell you that normally it passes. Joan, it will not be the last thing he thinks about you, his Beloved, he will soften, you'll see love and appreciation in his eyes again as he realizes how much you have done for him. It's not over yet. I do not mean to minimize it or absolutely promise, just tell you the likely scenario. Meds never helped my DH, but hopefully you can get some for yours, make it easier for you. He still loves you just as I knew, beneath all the bluster, my DH still loved me.
Yes, but not about the driving. Just determination to do things "his way" - when he wanted to do them and practically dare me to intervene. I didn't. I got to where I didn't care. My marriage to my best friend was over during that earlier period. I wasn't home with him all day, and after dinner I had this web site and my beloved books. That stage lasted quite a while. That is why I can now take care of the two year old in my husband's body with love and enjoy our time together. The two year old loves me and gives me kisses and hugs. I wasn't going to say anything earlier, in hopes that you wouldn't experience it. Some don't. A friend of mine whose husband died of AD five years ago would accuse her of stealing from him, cleaning out their accounts, that she didn't love him, etc. - she had told me how glad she was when that stage passed.
Joan, just hang on....it will pass. But your emotions will be put through the ringer for months.
Joan, I can't imagine what you are going through. Every day, when I read comments like yours, I thank God that my wife still expresses her love for me and wants to give me a hug. According to her doctor she is in stage 6c. Thanks for this website. I think of you often.
He will forget this, too. My worst fear was that my husband would die hating me, not realizing what I had done for him. I don't think he really every had any idea of what I had done, but I know he felt loved and that he loved me. Is there any way you could get respite care for him and get away for a few days? It might give him a chance to get over it.
My husband was once so angry with me over my imagined unfaithfulness that he didn't eat for four days. Just glowered and paced and sent out hate towards me. That's when the doc finally put him on Zyprexa. It helped a lot with the anger.
I had a counselor once that told me that dependence creates anger. I think that is what is happening with our spouses.
Joan, my husband has never been overtly hostile to me for long, but his indifference is so terribly hurtful!! Our relationship during the many years of ALzheimers has altered many times. I wrote you about the phase of attraction for another resident which began my deep, deep pain that has not gone away, then came the hostile phase which was intermittent when he must have felt I abandoned him ( first two Nursing home placements)then he appeared to find his love for me and for a hiatus of two years he would be able to say "I love you" and kiss me and hug me. Gradually, the indifference began to be more apparent as the months came and went. Now I think he is in his own world, with very little remembrance of me , perhaps a feeling of familiarity. This recent trip home for the weekend showed me emphatically that we don't have a connection any longer, he will look into my eyes for long periods of time but I think he is trying to remember me. The pain of a spouse's rejection does not go away because even though they no longer have memory of our life and love together I am blessed or cursed with the memory of what is lost. I sometimes wonder if this is similiar to two people who once loved getting a divorce....
I believe your Sid has transferred his hatred, frustration, emotional pain, at his disease to you and you have become the object of his bittereness. You are a tangible human being , not the shadows of his ill brain, and as such he can direct his unhappiness at you. Eventually this will pass and Sid won't remember what you will be unable to forget. So for now, I can only tell you that I hurt for you and hope you will be able to overcome this hell that Sid is determned to inflict.....Getting someone else to care for him as oft en as possible and let you stay away might help you survive. If I can help you in any way you have only to ask.
I get "angry" over many things. Family who doesn't pay enough attention to DH. DH being upset most of the time over something or nothing. things that don't go the way I think they should. Wondering if DH is "putting on" some or all of his moods and the way he acts towards me. Just a whole bunch of stuff. I remember in the movie Pretty Woman when the handsome man told someone that he spent 10 years in therapy to learn how to say "angry" about his father. Angry is a very strong word but it is the only word that fits here. I spend a lot of my energy trying to make sure that my anger does not turn to hate. some times it comes pretty close. Especially when DH is seeming so normal and I begin to question myself. When I wonder how he can possibly say the hateful things knowing how much I love him. Boy, this one really opened up some feelings. It's just so hard to find the words to describe it all.
Joan your blog today will bring out lots of us here who have dealt with the hatred smirks and indifference. its my own opinion of course but from what you write, i can relate personally and I believe you are only a step above him becoming mean and aggressive at any point. if it were me looking back, i would have started the meds Now, test or no trial,and get him on whatever works for your sanity. its not really about him right now but you! you need him under control and docile til all this runs its course- if we can say that how the disease progresses-i hate to see your posts dealing with such painful comments. in all honesty, i always and still do sometimes think my DH knows when hes acting out and doing/saying hurtful things for my benefit. if hes seeing you as the enemy then you have to be the soldier- and get whatever pharmaceuticals it takes to deal with this ugly side so you can have some peace soon- your nerves are going to break if you dont. divvi
I remember a wonderful older woman that my son mowed grass for, I have never met anyone sweeter, kinder, or gentler than she was to everyone. She got the AZ and eventually couldn't live at home any longer and was put in a nursing home. As the AZ took hold of her she became the meanest, most evil person the people at the home had ever come across and she eventually had to be tied up all the time. I know that wasn't her, it had to be the disease of the brain, because she certainly had a wonderful, loving heart for everyone she came in contact with. We have to remember the love is still in their hearts, but the brain sometimes drives them crazy, making them mean and angry. I eventually came to really dislike my DH when this happened, almost hated him, then he started changing into a little boy and then baby-like and I could become close to him again and then remember the love that I knew was still in his heart. I think if there is too much anger showing, you have to find a way to leave, as one of the bloggers did (she rented herself an apartment for a while). Just because we love them and we know they,in their right mind love us, doesn't mean that we will be able to care for them through that period of the disease.
Yeah, I've been there too. In addition to the one violent episode over driving, there are the little digs, the smirks and sneers, the "are you crazy?" stuff. There was the build a cave and lock both of us in it stage as well.
So yeah, although I haven't had a whole lot of the screaming, I have had a lot of the rest of it.
This subject came up in our caregivers meeting this morning. The lady that holds the meeting said, that the patient always blames the one closest to them. They blame them for everything that they think of in their Alzheimer's minds. She said to not take it personally, but that is just about impossible. The bad part is that there is nothing that you can say or do, that makes them change. Only time and meds can sometimes help. They put my DH on Risperdal, and thanks to God it helped. I think it was my life saver or I would have gone bonkers. Then after all this was over he surprised me out of the blue one day, he took my hand and kissed it and said with tears in his eyes, thank you for loving me and taking care of me. That was a tearjerker, I just could not help it.
Joan, I read your blog and I can't say I have been through anything like that because Mac isn't that far along. I do want to say I am so sorry you have to go through this and my heart goes out to you. I think I would end up lashing back...especially if Mac had a smirk on his face that would make me think he knows exactly what he is doing. I am not one to take things lying down which is why I started the thread about not making it as a caregiver. I hope, as Mac worsens I can have more patience but then redheads aren't supposed to have it!!!!!!
Joan, I so hear and identify with the pain in your blog. The hatefulness from our spouses, when they spew ugly comments, attitudes, and expressions our way, is so hard to deal with. Hard as it is, it cuts to the quick. Please know that we understand what you're experiencing, and validate you.
The term "validate" hit me. I think all of us are here in part because we need someone to tell us we are not the crazy ones. We aren't the ones who are mumbling. We aren't guilty of whatever they have accused us of today.
I NEEDED my therapist to tell me, out loud, that the decisions I've made for my husband's end of life are not evil, but pretty basically kind. I know, intellectually, that it makes no sense to keep someone alive by force, but as long as I was hiding what I had decided, I was filled with guilt. I needed validation.
So yes. We understand. Joan is not the "crazy one" and neither am I. I don't mumble. He isn't wearing his hearing aids. It isn't weird to want a window open when it is 78 in the house and 64 outside. But as long as each of us was isolated with only one other person, and that person was demented...
Joan-I wore myself out telling myself it was the disease, not my husband. I tolerated the rages because I didn't know what else to do. Somewhere along the line I lost my love for my husband. I forgot all the good parts of a long marriage and remembered only the hurt. The hurt turned to hate. Then the hate turned to indifference. That is where I am stuck. I go through the motions of being a caregiver-but that is all. I feel empty but I think that is easier than agonizing for his decline. Perhaps this is a protective shell. I don't know.
Joan, I am so sorry you are going thru this. You are such a loving, caring, sensitive person you certainly don't deserve it. I really wish I could make it all better, for you and for all of us.
Joan, my heart just aches for you. As you know, Lynn was truly hateful to me as well ..and not too long ago either. It literally was just sucking the life out of me. I know it is the breakdown of the brain that causes this irrational and erratic anger and aggression…..I knew it then too, but it didn’t stop my heart from breaking. At first I screamed right back! Then I just cried myself to sleep every night. Then I turned in myself, trying to protect what was left of me. But, then it got to the point if he didn’t get some help, I was going to have to put him in a nursing home. It became literally him or me. I chose to fight for an “us” again. I changed doctors and called upon my neurologist who is also my close friend.
Where it is a breakdown of the brain, antipsychotic do work for many. I have said too many times to count the miracle Seroquel has been for Lynn. Where once I was his verbal punching bag, I am now once again his princess. I have felt your pain, but I have come out on the other side. Lynn will never be the man he was… but the medication, has taken away the Alzheimer’s devil. I have part of Lynn back… and to me the most important thing…. I have his love again. I know this drug trial is important to you and Sid, but as soon as you can, get him on some medication. If the first one doesn’t work, keep trying until you find one that does. I lived the past 3 years in hell…. And there was just no need of it. What a waste! There is no going back, so I will just enjoy the gift now. I hope for you, this same gift with Sid. ~Nikki
This is from a printout my neurologist gave me. I am sure you already know this … but it did help Me to read the facts in black in white…..
Anger and aggression. Dementia causes the brain to lose its normal ability to control angry impulses, a problem called disinhibition. Anger becomes aggression when the person acts on these feelings by verbally or physically attacking or threatening another person. It may occur because the person with dementia often misunderstands or misinterprets the actions of others, and then lashes out because he or she feels ignored, in danger, or mistreated.
Another cause of anger is frustration at being unable to complete tasks that were once easy, such as fixing something that is broken, using the stove, or going to the bathroom. Sometimes there is no obvious cause of frustration. Anger and aggression can include verbal accusations and insults, aimless screaming, refusal to cooperate with requests to eat or bathe, and even physical assaults. Aggression can also include self-injury such as head banging or biting oneself.
Although aggression is among the most distressing problems for caregivers, it can usually be helped with extra attention and medications; it should not be ignored in the hopes it will go away by itself.
I've been lurking here for several months and tonight finally had to comment. My husband has dementia - frontotemporal (FTD), not AD. I'm also in the indifference stage -- I'm just a caretaker and only have memories of my deep love for him -- and of his for me. I'm fed up with doctors tossing samples of Aricept and Exelon at him and sending us on our merry way. We live near a big city and have seen two respected neurologists and I have no use for them. My spouse (what does DH stand for?) refuses to admit -- or cannot comprehend that -- he has dementia. Our life has become a living nightmare. Why on earth would anyone want to slow the progression of this horrible disease. I cared for my parents as my father died of AD and I want my husband's disease to progress as fast as possible so I can get on with living.
I'm really sorry Joan. My husband is not at that point. He's just a child. So far, he hasn't had any real temper tantrums. Hope it stays that way. Please know people love you and wish you didn't have to go through this. How awful for you.
My heart goes out to you for I most assuredly feel your pain, despair and anger. I will pass on to you what one of CNAs told me when I was leaving the memory care facility after one of DH's ugly outbursts directed at me. She said "do not let him see your tears because that makes him stronger in his anger and fuels him on". No doubt, it is next to impossible to control the hurt we feel and take to heart when they get so mean and ugly but I have really tried to remember her words when it happens and many times I can now better control the tears.
Joan, thank you again for this website and your dedication to it - it has helped so many of us and I keep passing it on to others. God bless you and all the caregivers going through this journey.
Weejun, Welcome. I think you are going to find that posting as well as reading will make a difference for you. I know it helps me to say all of the things I can't say anywhere else.
The dementia drugs don't work on FTD, so it is a good thing you aren't trying to give them to him.
Where the dementia drugs do work, they don't slow the actual progression of the disease. They don't make the person live any longer. What they do is slow down the symptoms. Almost everyone is taken off the drugs at the very late stages and in many cases they then progress rapidly to where they would have been if they had never had a drug. The drugs, where they work, just make stage 4, 5 and 6 last longer and stage 7 shorter for the patient. They provide a better quality of life.
What works for FTD is the anti-psychotic drugs if you need them, and with FTD, you probably need them.
And you are entitled to a life of your own. You are entitled to have it NOW as well as later. We all are.
Welcome to my website. We have many members who are dealing with FTD. If you go to the top of this page, click "search", and type in FTD, you will see 3 or 4 discussions on that topic, including people talking about AD drugs that do not work for FTD.
I am taking your comment and Starling's answer, and putting it under a brand new topic - FRONTAL TEMPORAL LOBE DEMENTIA. EVeryone who has questions or comments about FTD can post under that topic. I'm trying to keep things as organized and easy to find as possible.
If there is any consolation to this miserable, horrible, detestable disease and the anguish it brings to both spouses, it is that we are not alone in its effects. Your messages have helped me so much - just to know that what I have been experiencing IS part of the disease.
Please keep checking in today for a late afternoon blog - something very interesting happened with us last night - after the usual few hours of repetetive "Why did you do this to me?" and more tears than I thought either of us had.
Thank you so much for your support. It means the world to me.
Joan, I am not in your place, yet, and I pray it will not happen. Have you thought about taking a break. If possible, can you get away by yourself for a few days. I don't know if you have family who can stay with him. My guess is that after an absence, things may be different. If they are not, you would at least have a break. I would love a few days by myself and I could probably get my kids to be here. I would just feel guilty because I think he would miss me. So far my DH seems best if it is just the two of us, but that is so lonely for me. I know you are strong and resourceful. What a great service you are providing for all of us. My prayers are with you. Maryd
It's strange, I barely remember the angry outbursts, and I do know that look you get from him. I don't confront my husband on any issues, and as long as there's no interaction involving a 3rd party, like my episode with getting the sewer line flushed, things seem to be o.k.
A lot of what happened between my husband and me was my ignorance. I was unaware that he couldn't understand there was something wrong with him. I didn't understand that he could imagine events that had never happened, and I would attempt to get the stories straight. I didn't understand about the reasoning button being missing. So much. Now that I have learned so much, it has made my life much easier. I hope it doens't start up again.
The problem Joan, is that you have an ongoing issue. Either Sid will be medicated to change his mood & outbursts, or seems you will have to wait until he adjusts to his new life. Sounds like he was a workaholic, and now has no purpose in life. That could be contributing to the anger. I wonder if there is some way to give him a new purpose.