Joan - I just read your Friday 24th blog. You are either up early or went to bed late :-)
I so much can understand what you are experiencing. We went through that for 4 years. It made me sick and crazy. Not to mention so hurt. I know I have told you this before, but just wanted to remind you again to "back you up". The hard part for me was not just his behavior, but the reaction of everyone else that kept negating what I said because he was so sweet and wonderful to everyone else.
We go to church every week and he would not speak, touch me, would pull away from me, glare at me, hostile. When he saw someone he knew, he would be all smiles, talk to them, touching them. It just broke my heart. That was for 4 years. The ugly part has gone since he recent medication change. Now, he acts like he is afraid I might abandon him - I won't. Please, please find a way to be good to yourself and realize that someone strange is in your life and YOU can't control it.
Your words ................"he would not speak, touch me, would pull away from me, glare at me, hostile. When he saw someone he knew, he would be all smiles, talk to them, touching them. It just broke my heart. That was for 4 years." was so incredibly exactly my life that it was scary. It is us to a tee. I have never heard my experience described so perfectly.
But, as I said in the blog - one day at at time - this morning he woke up okay.
My heart breaks for you who are suffering so.....I had managed to forget the utter loneliness and bewilderment I felt for the years after my husband changed. Even though we can intellectually accept the fact that they have a disease that insidiously invades their brain destroying the emotional bond , we are devastated by their behavior . Your message conveyed your sadness with such poignant description that I felt your unhappiness and utter despair.
Even now that my sweetheart has passed on from this hell on earth, I am reminded sometimes of the chasm that existed between us emotionally. AS he became more and more ill, it became very difficult to communicate on any level. You are being forced to live life as one on a tightrope trying to retain your equilebriuim as you relate to someone who does not respond accordingly in a reliable manner.
To compound the torture, your family and friends have no real depth of understanding as to your daily existence day after day, year after year. You want out of the pain but can find no release knowing that you will never have your spouse as they were again and that your life while they are alive will not be your own. The only hope I can give you is that we have endured what you are now suffering and somehow we survived . In my life, it is not the one I would have chosen but although I am lonely, missing my dear one, I now can have some semblance of normality, enjoying my family, and friends. You are reluctant heroes but heroes nonetheless for your loyalty and love for your spouse and they will someday once again in a future known only to God, be able to convey their love and gratitude to you.
In regard to my 4 years of the uglies living here - it was not fun. I lived with someone that acted like they hated me and anything to do with me. We eventually moved to separate bedrooms for different reasons than his behavior and it has been a godsend. My husband has always been and is now very protective, caring of me and my needs. He wasn't for the 4 years. I kept trying to bridge the gap, doing all the things I thought could bring us closer. Looking back on it, I think those actions made it worse.
He is a very proud man and I think he needed space from me - and what he sees as his failure to connect. I think in trying all the things I did to connect, made him feel very frustrated and angry because he knew he just couldn't be the husband he used to be.
We have a very pleasant relationship now - lots missing, but I am so glad to have him back. But I did have to pull away and build a type of "wall" to protect myself and I think that helped him as well. I hate that is the solution - at least for us - but I think he really needed me to back off from pressure I was creating to be "close" like we used to be or at least as best as we could be now. I had to drop it and let him do what he is able and now am able to rejoice in that. But, that does not take away the hurt, confusion, questioning about my not being attractive to him during that time.
Bless his heart, he did everything in his power to drive me away and I finally got the message and I think the message was for more space for him to retain his dignity. Victoria Secret misses my business of buying impoissibly uncomfortable lace things that I thought would make me attractive to him. It probably did more to make him feel bad and drive him away in that he knew that much was missing from his ability to act close in many areas of our relationship.
Like many have said - this AD is not pretty. I was thinking that suppose I had this disease and I started to regress in my behavior. I was horrified at what I thought that might be as he has much nicer manners than I do and I would probably be a wild woman that would have to be kept in close quarters as I probably wouldn't be able to be in polite company. I gave God thanks for chosing my husband and not myself for this trial. I can handle taking care of him, I shudder to think if I was the patient. It wouldn't be pretty.
I bought some Bose sound cancelling headphones and and IPOD and made a collection of playlists that I would use when I needed to really tune out. It helps a lot, especially in that four years. He didn't feel I was shutting him out, he seemed to be grateful that I was otherwise occupied and that he could relax and not have to perform being "normal".
I can't tell you how sorry I am you, Joan, and any of you who are experiencing this type of hurt. There is no solution that I found, can't make it go away, I just have to do what I can do to protect myself emtionally. I felt that there was a serious wound that had been created in my heart in those four years and I have to take serious measures to protect that injury so it would not be damaged further. Even tho, he is calmer now, more his old self, he looks at me in amazement if I ever slip and bring up that time. He seems puzzled that I would "make that up". He doesn't seem to have a memory of the extent of harm it did. I guess that is evidence that their "reasoning" button is broken. Take care of yourself and give yourself a big hug.
"..............did everything he could to drive me away." Yes, that is what he is doing. Besides alternating between ignoring me, glaring at me, and screaming at me, he is also raging at anyone who will listen about how horrible I am. How everything is my fault. And then can't figure out why I don't want to be close to him - actually complains if I don't spend enough time with him.
However, the medication has kicked in, so we're in a calm mode for now.
joan maybe he just needs a good ole fashioned kick in the butt and tell him , you're LUCKY i am still here to care for you buddy! shape up or i may ship out! ...:) i am venting for you joan..hahaha... you may get some good out of saying it though, he wont remember it later, (maybe)..divvi..
In a way, I have done that. I have told him that I cannot live with his constant anger and verbal abuse. I told him that he can have what is most precious to him - his freedom, license, and independence back. In exchange, I refuse to be responsible for him. I would get a divorce, sign every paper imaginable that says I no longer have any legal responsiblity for him, and he can take care of himself and get his license back. So far, he has said that he doesn't want to live without me. He's angry and resentful that I'm making it an either/or proposition. Either he takes the mediciation to calm the rages, or he's on his own. I do believe that eventually, his brain will be so screwed up that he will go for the divorce in order to have what he feels I have taken from him - his indepedence and manhood.
Bama,
No matter what discussions we have about this issue, the next day, he remembers that we had a discussion and that he has to take his pills. He remembers no other details, except that I hurt him, destroyed him, that he'll never forgive me, and that he harbors deep seated hatred for me now because of it.
oh joan, yours is the worst case scenario i have seen here besides bluedaze with anger and verbal abuse. isnt it now going on 2yrs+??same ole issues! for now he isnt physical but you must be prepared for it to escalate as the disease progresses. in any event you may need to stay ontop of the CONSTANT altering of his medications to help see you thru this. within a few months he may need more doseage of the seroquel to help him take the edge off. they become quite resistant to the effective doses quickly- my DH we have to up his neurontin every 3mos or so as he becomes so tolerant and it loses its effect-. i am so sorry. divvi
joan, maybe you should discuss the pros/cons of using seroquel for Syd at this point. some, like my DH cant use it and it makes them MORE aggressive/aggitated. some of the side effects of seroquel in dementia patients that can manifest, are hostility,aggitation,irritability,aggresiveness,panic attack, reslessness, insomnia, not to mention up to 3times the ability to develope type 2 diebetes. my DH developed pre diebetic disorder after on seroquel and it didnt clearup til 4mos after taking him off. maybe there is another drug to try since it may be contributing to making him worse? just a thought, divvi
He's on Risperdal - very small doses - .25mg. in the morning and .25 in the late afternoon. So far, it is working. It really has taken the edge off, but the doctor prescribed enough for a third daily dose if needed.
We had this situation under control with the two daily doses, but 3 weeks ago, he decided to refuse the 2nd daily pill, and that's when things started to escalate. Now that he's back on the 2nd daily pill, he's much better.
Joan, you are living a paralell life to mine, and my dw hates me more than anyone in the world. I am constantly called the "bad man", evil man, and she insists that I am not her husband. I can understand how it must hurt you to hear the things that they are capable of saying. It totally is devastating, and the ego suffers so much. It takes me a few hours to shake it off, and at times it may even take a few days. I sometimes think that they are aware of their decline, and lash out from frustration, and fear. My wife threatens divorce almost every day, and things got so bad that she threw me out of the house. I have been away for about a month now, and the situation has improved. She is managing ok, although the level of care is not what I had given to her. Right now it is adequate, and many people are keeping a watchful eye on her. But, last week, I let it slip that I had an appt with an attorney, and her reaction was catastropic. She thought that I was going to Baker Act her, and sue for divorce...In reality, I was setting up an appeal for her disability benefits which have been declined twice. But the verbal abuse and constant bashing and reliving the past has driven me to the point of being stoic, and I suffer the low self esteem, lack of motivation, and constant worry that I am sure you are going thru. How I wish that I had an easy going spouse to take care of....nothing is simple, and everything becomes a drama.....I just recently bought 4 different cofee pots, because she could not figure out how to use them....Everthing that I buy for her has to be returned 3-4 times before she accepts it....If I buy groceries, they are usually all the wrong items, and I have to return most of them...everything from ice cream bars to thanksgiving turkeys...(did you ever hear of anyone returning two turkeys because they were not exactly the proper weight?? try to find two 18 lb turkeys.....most are 13-14 lbs and then 20-24lbs....
My wife is also very aware of medications, and there is no way I can sneak anyhting past her....her senses are super super sensitive, and she can detect one atom of xanax, or any foreign substance added to food or drink...I am now contemplating buying a tranquilizer gun that they use on Animal Planet.......with my luck, I would shoot myself in the foot, and would be knocked out for a week.....but that may not be so bad.....perhaps better than listening to the constant criticisms.......Keep your self together Joan...Your website is not your new companion, and your honesty and experiences are very helpful and supportive to the rest of us in alzworld. I pray for you ofen, and hope that things will ease up a bit for you....hang in there Joan....
i rescind the comment of joans case being the worst after bluedaze, i think its a tossup with phranque. bless you all three and your patience. it strikes a painful chord to hear that one of our own has it so badly..even the poop patrol is insignificant hearing your issues. divvi
ps i still like the idea of putting the meds into vitamin capsules.
phranque-I don't know how you do it. How do you keep such an out of control person safe. In my sad story I let my husband self destruct to the point that the police took him away in restraints. It took two police units to try to get him under control. He was totally out of control. Strangely the time before the police were called he was able to appear in control of himself and convince the police it was just a domestic squabble-and they believed him. Sadly you may have to do the same thing. You can't force a person to accept medical help until you can prove that they are a danger to themselves and others.
Phranque, is she only hostile with you?....is she never that way with her daughter?... It would seem to me that the dementia wouldn't pick 'favorites' to lash out toward., but Joan's husband is nice to everyone but her. Thank the dear Lord my DH doesn't have this issue. He has temper rages on occasion - more out of total frustration with everything, but since he got over the after effects of the anesthesia when he was very ugly to me and the nurse, he's mellowed. I just can't keep him awake for more than a few minutes. Believe me, if I had a choice ..I'd pick the sleeping choice. I am so so sorry you, Bluedaze and Joan have this challenge every single day. With all of our problems, you make them seem insignificant. I just cannot imagine you not being able to live in your very own house. She wouldn't understand it if you told her to 'straighten up or SHE would be the one leaving. She seems to have a good amount of comprehension. So so sorry!
This is all so sad and I am so sorry.....About divorce, that is the last thing that I think they want. It is a case of "I hate you, don't go away." Like a little child that is frightened but has to put up what looks like a big defense. It is so hard......
My dw used to direct all her anger at me, but now she shares it equally with anyone who is in contact with her...My daughter also gets the temper and my dh calls her the devil child....but now it seems to be directed at anyone who attempts to interact with her.....on a more positive note, this week, she did seem to be more "docile", and not get so agitated as last week...Maybe the calm before the storm...but so far, no arrests or police...I am the wimp who gets beat up and will not under any circumstances, raise a hand to defend myself..did that only once, and that is the one thing that dementia will never let her forget, since she now thinks that I beat her to within inches of her life..Somehow, all of this is my fault, and I am responsible for bad weather, traffic, rude salespersons, junk mail, cable problems, tv programming, weeds, bad air quality, and the Impending doom of General Motors....(I shud have bought a Chevy vs a Toyota)... I now consider myself pretty powerful...Imagine the things I am capable of doing..........heck I must be superman
I am lucky in one sense in that I have a rock solid self image. I know myself well; I know who I am; I am fully aware of all of my strengths and weaknesses. The Alzheimer's Disease that has possessed him has broken my heart, but it has not taken my self esteem, and it will not. Even when he is calm, he criticizes EVERYTHING I do. I can't make the bed properly; I don't know how to drive; I can't make a salad properly; I don't cut up the chicken properly. If I didn't have the strong sense of self that I do, I would probably crumble under all of the criticism, but I ignore it because I know it is his way of trying to hold onto some control in his life. He cannot work, which was his entire self image; he cannot come and go as he pleases; he cannot remember anything; he is not allowed to drive, which was another of his symbols of freedom and manhood. So he tries to tear me down with him.
To phranque - don't let this disease take away your self esteem. It is destroying our spouses; our marriages; our love; but it is making us stronger as individuals.
I don't think my heart will ever recover from the loss of my husband as he used to be. Alzheimer's Disease took my husband, but it cannot take my self esteem.
Thank you Joan for your encouragement. I am still very much in love with the person that was, and all my dreams and plans have been shattered. I am regrouping and learning, and will not allow myself to get destroyed. I understand that it is the disease that is talking, and I try to ignore the constant criticism, but it does take its toll, and becomes almost unbearable at times. I cannot make a bed properly either, although I spend hours trying to get every wrinkle out of the sheets...I have bought six beds within the last three years, trying to find one that was confortable for her...she is like the princess and the pea... My only prayer is that this disease will progress quickly. I doubt that a cure will be found to restore the damage, and I do hope that she will not linger for another 15 years...it may sound cruel to others, but I think a fast progression would be a very humane thing.
Joan, can you let HIM make the salad, cut up the chicken etc? We went through a period where there was criticism of everything.. and more precisely just a walking away from me and leaving me to flounder.. So I just let him DO whatever he was criticizing. It didn't take long..
Oh, absolutely. He DOES make the salad, cut up the chicken, and make the bed. But sometimes, when I don't want to wait for him to do it, I do it, and of course, I do it all wrong. Considering all the other issues I have to deal with, I don't pay any attention to his criticisms - I ignore it.
Phranque,
I think we are all in love with the person who WAS, and we do the best we can for the person who IS. I've stopped yelling at people for continuing to tell me - "It's the disease. It's not the person". Yeah, it's the disease. But the disease has left me with THIS PERSON, NOT MY HUSBAND, to deal with. And it is THIS PERSON that the disease has left me with that is ranting, raving, screaming, criticising, constantly angry, never remembers anything I say, never has anything nice to say about me. It is THIS PERSON I have to live with.
However, as I said before, the Risperdal is working. It has smoothed him out and calmed him down. That's all I can hope for at this point.
Retired Supreme Court Justice Sandra Day O’Connor, March 25, 2009 before the Senate Special Committee on Aging: “I submit to you that until you have actually stared Alzheimer’s in the face … you cannot truly understand the deep sense of frustration, fear, helplessness and grief that accompany it.” --
When I first came on this website, it was during my four years of hell of the constant dark moods and put downs. I was so envious of Joan and all the activities that she could do with her husband. Now, my husband has reverted to his sweet calm self - with the help of buckets of meds. But,we have to lead a VERY simple lifestyle with as little social activity as possible, no travel(he wants to jump out of the car if he gets mad) and very little interaction with others. He is sweet, but our lifestyle has changed forever. I wanted to go on the caregiver cruise and could not figure how to get from southwestern Florida to Miami safely and without incident. He is very hostile to anyone that does not do things the way he thinks they should be done and is a big man. He doesn't realize - or probably doesn't care - how menacing he appears. Something so simple to others is so difficult for us. So it is just easier to stay home. I do get out, but travel is out for us. It is easier to handle his antics in familiar surroundings. I KNOW I could not have made it through those times without this website. Thank all of you for understanding.