I've had a rough couple of weeks, and it only seems to be getting worse. I invite you to read today's Blog about my view on the Alzheimer Devil that has taken possession of my husband's brain. Do you feel as I do? How do you cope?
Of Joan, you said it so succinctly. Indeed, you do get to see the AZ devil raise his ugly head too many times and I feel the pain, dread, and loneliness you are going through and there are not adequate words to take it away. The companionship most definitely is the hardest thing to lose.
I thank you deeply for your words and website and my prayers will be with you and your husband. God bless you.
Joan, you are going through an awful time right now. It will get worse. Later, when he has NO feelings - just a zombie in your husband's body, you will want to beg him to yell at you one more time. Remember that "reason button" is gone. He is going to lash out at you whenever you try to comfort, explain, or show anything but affection. It is SO HARD to give up the man you love. We all fight tooth and nail not to let go! RIght now, you have the teenager in your husband's body. Later, you will have the 2 year old that I have. I am so sorry that he is striking out at you this way. I too, have you in my prayers. You have been our lifesaver, Joan.
My heart aches for you right now as you try to understand and confront this aspect of your husband's disease. I only had one instance of the frightening "devil" in Earnie's eyes but it was so terrifying I called my son, he came over, stayed the night, and from then on I was not alone with Earnie until we placed him in the last nursing home . Since that day, Earnie has never shown any animosity toward me again and is usually very docile. That night was the first time I was aware that Earnie could do me bodily harm, in fact, my son had come to stay the night and my husband attacked him. He had to wrestle him to the floor, and hold him there for awhile. During that confrontation, my husband said, "Finish it"! meaning he wanted my son to kill him. Of course, my son just held him and then took him to bed, and stayed the night with me.
I don't know what consolation this is but Sid will change as he continutes through the stages, and will not be as confrontational as he is now. With that change however will come other changes in his personality and he will become ,more and more a stranger. It is as if his brain is a battlefield and the conflict results in an explosion of physical expressions of anger, resentment, and distain for anyone and anything. These episodes will affect how you feel toward Sid for awhile and you will mourn that loss also but as he changes into a more docile individual, you will regain the tenderness you feel , if not the romantic attachment, and you will be able to put this away as part of the terrible price we pay as we do our own battle with the "evil" devil of ALzheimers.
Joan, I am so sorry you are going through this. It must be so painful. I have seen glimpses of the devil, when B. throws things. But fortunately they have been brief glimpses. This disease is so frightening, in that, we never know who we are going to wake up with. I feel for you and for all of us...it's so heartbreaking to have the one person you could always turn to for comfort and support not only be unavailable to us, but be the one who is causing the heartbreak. Try to take extra good care of yourself Joan.
I had to wait to reply to this as I was crying to hard to type. My heart is breaking for you, as I know just the look, the hate you are talking about. Perhaps it is because I have not yet seen Lynn at a stage where he has “no feeling” but I can assure you, I will NEVER long for the days when my husband, my soul mate, looked me in the eyes with pure hatred. Nothing has been as difficult as this. I don’t believe anything, not even death - could be worse.
As we all have, I have been grieving for the continued loss of my husband. Each good-bye is painful. It is pure torture to watch one you love slip away from you inch by inch. When the one you love is slipping away …. Also now despises you, thinks of you has his mortal enemy, the pain is deep. I am crying again, and I need to go, this cuts me to the core… I am so so sorry you are going through this Joan. Wishing you strength and keeping you in my thoughts and prayers, Nikki
I don't know if I should count myself lucky that I haven't seen the Alzheimer's Devil; not sure if I have that to look forward to or not. But what I have is so pitiful to watch that it breaks my heart. My DH walks around all day hunched over, barely able to put one foot in front of the other. He talks in a low muttering monotone, apologizing continually for things he thinks he has done. I tried to bring him to the store yesterday to get him a bathing suit and he could hardly walk from one end of the store to the other. Walking with his head down, he would not see where I was so I had to constantly call him to follow me. This disease has turned a vibrant productive man into a mumbling anxious shadow of his former self. I don't know where we are in the spectrum of AD so maybe that angry explosive side is still to come.
Joan, so sorry you are having to bear the blunt force of the AD devil-your situation is not unique in that they turn their rage and hatred toward the person closest to them, the uniqueness is the fact that you are personally losing the person you've spent a lifetime with, their trust, affection, companionship. each of us in our AD journey has been/or will be where you are now, its the most emotionally draining time of the disease in my opinion as they can be frightening and abusive both verbally and physically and are on such a 'hair-trigger' response it makes it impossible to know how each day will progress. I am sending a warm embrace, and hoping your dear Sid moves quickly thru this phase of the disease -divvi
His eyes were bulging, fists clenched, his face bright red and yelling--I don't know what. I stood stunned, I didn't speak or move, but I knew if he hit me, I'd fly thru the wall. He stopped on his own & when I told the doc, he said to always look for a way out when I'm in a room alone w/him! I guess it was the best advice he could give. I've been told some people carry a cell phone or maybe we should get those 'alerts' you wear if you fall down. That seems like a good idea. I'm not sure my DH had a true idea of who I was at the moment. He may have been hallucinating, thinking I was someone else. Even now, years later, I can't think of anything I could have said or done that he'd have understood. But I do remember that I did nothing, my brain had gone numb.
Joan, I am so sorry that you have had such a terrible couple of weeks. MY husband seems to go in cycles. The pure rage and hatred look has been quiet for awhile but one never knows when the devil will come back. There is just no way as a human being I can deal with such negative emotions. I know it is the disease but the pain the words and actions evoke are still part of me. I haven't found a way to cut off my emotions so these episodes won't hurt me emotionally. It is so hard trying to care for a stranger one who thinks I am doing everything possible to make his life pure "he double l". Joan please know you are in my thoughts and I hope you find strength from all our thoughts and prayers. You have made such a difference in my life, I can't thank you enough.
Joan, this started out as a personal email to you, but as personal as it is .. I thought I would share it here in the hopes it may help someone facing this….
As I mentioned, this cuts me to the core. This has greatly impacted my life for 5 years and though I know people mean well, family and friends….I have little tolerance for people reminding me it is the disease and not my husband. I need no reminders that my husband has been robbed of his very essence by AD. It is a heartbreaking fact I live with every minute of every day.
We all know our loved ones would not act this way if it was not for this horrific disease. However ….. that is of very little solace when faced with pure hatred from one you love. I do not “blame” Lynn, but the hurt is there, it is very real and it cuts deeply.
Lynn’s anger is what made me see clearly that something was desperately wrong with him … it wasn’t just normal forgetfulness that comes with age. Back in 03 Lynn and I had a fight , like most couples do… but this time he lashed out at me and hit me. I was shocked, he had NEVER laid hands on me before. . My sister was a victim of domestic violence for years, I was not going to allow this to happen to me as well.
I packed a few things and left. He came to my sisters house to talk ….. that talk forever changed our lives. It was CLEAR he had no idea he had hit me, nor did he even remember we had a fight! I of course grabbed my things and we went home together. He was seen on an emergency basis by a local neurologist, scans were done, test after test. The conclusion was they believed he had AD. We were devastated.
Lynn‘s cognitive decline was fast, caring for him was difficult but something I did in love. By 05 his recall was zero - around this time he also developed “sun downing” Joan’s description is dead on….. Alzheimer Devil. I immediately took him to his doctor for help.
I was in this doctors office, crying and begging for help. I was told that medications to treat him, the antipsychotic .. were not recommended as he already had an altered mind and of the risks involved. I was told that if he hit me again they would remove him from the house for my safety. I didn’t want Lynn removed, I just wanted some help!! He is in there somewhere! What I could never learn to cope with was the verbal abuse. I know, I know… it is the AD… but it STILL HURTS!!
I took Lynn to yet another specialist and he was tested more, to make sure nothing else was wrong. I then took him to my neurologist who put on the antipsychotic medication Seroquel. My neurologist explained to me that his anger could be from ‘sun downing” but could also be due to AD effecting the part of his brain that controls these impulses. He explained the “black box warning” on these drugs, but it was agreed that quality of life, far outweighed the possible risks.
Lynn has been on the Seroquel since July 11th, a day I will always remember as it gave part of “my Lynn” back to me. My point in sharing this ….. is to please do not accept these behaviors as normal parts of AD -and therefore something you have to tolerate. There are medications that can help. If one doesn’t work, try another and another ….. If one doctor won’t help you, keep searching until you find one that will. This was very hard to write and share…. I hope the Alzheimer Devil spares your loved one…..
Joan / Nikki; how hard it must have been for you to write what you did. I and probably 90% of the others here have dealt with this. I have had major problems for at least 7 months and we haven't even been to the doctor for it yet.
We live in a society where there is a stigma attached to us when our spouse gets physical with us. We try to hide it, forget about it, don't ever ask for help, we don't want to lose our LO and don't have other choices. Most of us probably try harder to "keep the peace,"
Some day, i'm sure we all will open up about things. thanks for having the courage now.
Well, Mary, actually I called the cops. It only happened once and over driving, but it scared me so much I just plain did not care who saw that car in my driveway. And I wanted to make sure that if anything happened to me, the powers that be would know why.
It hasn't happened again. He is together enough at this point that the nice policeman scared the living s#@%*% out of him and he has not forgotten that I am NOT ALONE. There is someone out there who cares. The nice policeman called back two weeks later to check up on me too, and my husband still remembered him.
Nikki, I have never experience violence as you have. I am so sorry you have had to go through this and I am so glad you have shared it with us. My husband has never hit me nor shown any sign of violence towards me at all. He has shown anger and once the rage that Joan described in today's blog. If I didn't tell myself that it was the AD, and he hit me, I would pack my bags and leave. I wish you hadn't had to go through the violence, nor any of the others who have experienced such rage and violence. It is absolutely tragic. Thank you for sharing your story.
My DH also had terrible rages, he never hit me but he would look at me with such hatred that my blood would freeze. He was put on Risperdal and the rages stopped. Sometimes he will get upset and raise his voice a little but it passes quickly. Please Joan get him to see his doctor or neuro to see what can be done. I know this episode hurt you to the quick. But there is help out there. And as Nikki said, it is the disease making him do it, it still hurts. A big hug and you and Sid will be in my prayers tonight. Anne
Joan-I too have been where you are. Sure takes the stuffing out of you. I got tired of hearing its the disease not the person. Yes-I know that-but it doesn't make things any easier to bear. The relationship is gone-over-done. It is truly like mourning a death. I am so very sorry. Fondly, bluedaze
Joan, I am so sorry you have to watch your husband go through this and go through it yourself. My husband started raging and ended up in the emergency room 3 times. The last time he tried to strangle a worker with his belt. That was the last straw and he ended up in a pysch ward for 2 months where they medicated him down to a wheelchair and he was almost comatose from the meds.
One of the explanations from the doctor was that as they progress to the next stage, it is not unusual for them to go through a period of rage. Another explanation was that the extreme agitation that they feel makes the disease worse.
Now, he will still rage a bit and it can still be scary as I worry about who he might hurt in the facility where he is. He had a bit of one the other night and that Alzheimer's Devil showed its face (great choice of description). I got so scared and froze as I saw that devil on his face. A nurse came over and bribed him with a couple of Oreos to get him to move. We walked away from the point of danger and he forgot about it. A little while later I told him that he had scared me and he just looked at me and told me he loved me.
Medications can help control some of it, but they may come with a very high price in terms of how else it will affect him. Your safety and his come first if the meds make the both of you safe, it may be worth it.
I agree with many of the other comments, call 911 if needed, keep a cellphone handy and know where the exits are to a room and make sure you are the closest to it.
One additional thought, in the state that they are in, they are often emotional barometers. I have noticed that if I am having a bad day when I see my husband, the visit always goes worse than when I am having a good day. How much are your emotions feeding his?
What happens if you agree with him and then distract him with something to do? I did find that doing something physical (moving a piece of furniture, walking, lifting something, etc.) often helped to dispurse a lot of that rage. Even when he was at his worst sundowning while at home, I could always ask him to take the dog for a walk because she needed the exercise.
I have not had to face any violence and frankly don't know how I would handle it. I thank each of you who have given us a glimpse into these painful and terrible experiences. You have given us a great deal to think about. And because you have been willing to share you have helped us prepare.
For months I have been the "bad guy" at my house. My husband often accuses me of yelling at him ( I don't raise my voice) And he often blames me for most things. He will tell me that I don't trust him, I never trusted him and he often expresses that I am always "on him". I am fearful that we are escalating to possible physical anger.
As has been said before its hard to do so much for someone to have them believe that you are out to get them...
I pray for all of us who must face this disease on a daily basis
Anita41, oh yeah I am the bad guy in this household too. My husband also accused me of yelling, which I wasn't, and blames me for missing things, etc. He just kept escalating until he was out of control. At that point it didn't take much to set him off. I just love how the social worker and neurologist would ask, do you know what triggers his rage? Duh, if I did I wouldn't do it! One never knows from one day to the next what would be the trigger. Thank goodness for Trazodone, it has helped him maintain his temper and the rages are kept in check. So far so good.
Ditto what everyone said. Yes, it's the disease, not the person. Distract, analyze. etc. These phrases work best for those not dealing with the Devil or the "rage" version. DH had the rage, paranoia and waking me multiple times a night in anger.
Joan, I too am so sorry. I know from my experience it is very hard to tell a man in his 50's he is no longer capable to drive. I have also seen that devil, my husband has never hit me, however, he has hit the wall. My husband last drove on June 19th of last year. I guess I had one thing in my favor his license expired in December, I knew there would be no way the DMV would renew his license. He still brings it up ever so often, but not as much. Hopefully, your husband will adjust also. You will be in my prayers. Kadee
Joan....so sorry for the horrible time you're having. I'm thinking that our spouses may be at the same point in their battle. My heart is breaking, not only for the loss of our relationship, but also for the misinformation that my husband shares with his family via phone. The "AD demon" tells of all the people I've turned against him, the conspiracy I have with the doctor regarding his license to drive, the control I exert over him in every aspect of his life. Sometimes I can't take a deep breath knowing that someone actually believes that I am even capable of all this. I cope by sleeping...not a therapeutic mechanism, but I can't defend myself, nor can I discuss anything. It helps to know that others are at a loss also, but it also multiplies my sadness.
It is so hard to deal with this disease that has taken over the person we love. I was just thinking of how hard we have to fight with this disease. It is not fair that we have to fight with doctors, insurance companies, banks, family members, etc. Isn’t it enough to fight AD? PatB
I cannot thank everyone enough for the support you have given me, and the strength I have gotten from it. Just to know that so many of you are going through the same thing - that there really is an Alzheimer Devil - makes the pain somewhat bearable.
There is strength in numbers, and together perhaps we will make it ((hugs Joan)) I just wanted to add a couple of things……. for Lynn at least, he NEVER got angry at anyone except me. Like I said , somehow in his mixed up AD mind I had gone from wife/ best friend to his mortal enemy. For no rhyme nor reason "I" was his trigger - he was sweet as punch to the rest of the world but I could do nothing right.
If I can stress just one thing … it would be to not let a doctor intimidate you. They are not God’s.. they are “practicing” medicine. I let one doctors threat of removing Lynn from the home, keep me in hell - In hindsight, what I should have done, what I implore anyone going through this, is to keep seeking out a doctor who will help you. Don’t give up. We can not change that our loved ones have AD, but what we can “control” is the help we are all given to survive it. Bless you all, Nikki
If you haven't already done so, ask your doctor to put your husband on Paxil and Zyprexa. The first is an anti-depressant, the other an anti-psychotic. It will help. Before my husband was taking these he would go for days in a rage at me over some imagined thing. Afterwards his anger passed in an hour at most. Alzheimer's people get caught in their emotions like a squirrel in a cage, they go around and around and around, building momentem. These drugs help break that cycle and, once he's been taking them for awhile, he will still get angry, but if left alone he'll soon forget about it. You won't though, and it hurts so much. Your mantra is "It's the disease talking. It's the disease talking."
It takes along time to learn not to argue back. You are trying to talk to the person he once was....My husband has been in care for a year now, and doesn't say much of anything anymore. Now I can love him again. It's a kind of gift the final stage gives you.
Beenthere, i believe that is right, they become such ranting raving lunatics and behave like juveniles for many of the stages, then when the latter stages showup they become quite docile and easier to get along with. its from one extreme to another and like you say, i guess its so we can make our peace at last and forget the rest. divvi
Welcome to my website. I hope you have had a chance to look at the home page - www.thealzheimerspouse.com. There is much information on the side topics, and much you can relate to in the Previous Blog section.
I've learned not to argue back. It was a hard lesson (as the previous blogs will tell you), but I learned it. However, there is a limit to how much verbal abuse, insults, taunts, anger, and rage, I can put up with in the name of Alzheimer's Disease. I've been told countless times, that since I am not the sick one, I have to stand there and take it and take it and take it. I take just so much, and then I snap. I used to scream and argue back. Now I just cry.
We have an excellent neurologist at one of the best memory disorder clinics in Florida. I called him yesterday, and he said to bring Sid in Thursday morning. I was shocked that Sid actually agreed to go, so we're going. He had better put him on something. Me too. I'm ready for a major happy pill.
joan, you waited too long! you needed a happy pill when you knew the driving issues were coming.) it may help him tons and give you the much needed relief. dont leave that dr visit, without something. divvi
Oh Joan, you have done so much for us. I wish we could help you now. I have never experienced the hate look or rages but because you and Nikki were willing to share, you have helped to prepare the rest of us for this. Love to you both and also to all others who have been through this.
It isn't funny, but I did have to laugh Joan. I am more than ready for a big ol happy pill myself!! I am so glad to hear you are taking Sid to the doctor, being in this field I am sure he has seen more than his share of behavior problems and will be a huge help for both you and Sid. I was warned that the effects may fade, his dosage may need to be adjusted or new meds tried ... but it is a small price to pay compared to the hell we were both in. It hasn't just helped me cope. Lynn to is at peace now. I hope for the same miracle for you and Sid. Wishing you strength! and God bless, Nikki
I'm so sorry Joan and Nikki. I cannot imagine what that kind of anger is like from your DHs. I am in the process of getting my DH off the road. I can tell already this will not be easy.
I called his neurologist. In his opinion, DH should not be driving and should stop immediately. His GP told me to give him DH's driver's licence number and he would take care of it. He wrote to the Dept of Licensing and drew their attn to DH. I am just sick about this. We also have to have a family intervention within the next few days and get that car away from him before the State takes it away.
I can't drive at all any more because of Macular Degeneration. We will need to make some adjustments. He's just furious. Accusing me of trying to ruin his life. Telling me he always thought I, above everyone else, was loyal. I gues he doesn't feel that way anymore. Hopefully, he won't remember this 'betrayal.' I feel very sad for me. I feel sad for DH. I'm sorry anyone has to go through this miserable disease.
I hope I didn't sound as if I were lecturing you, Joan. I know how impossible it is to take this stuff for days on end. Two years ago I thought my life was an endless hell, and had endless fantasies about how I might be able to kill my husband (my love, my soul mate) and get away with it.
Another thing I learned - you can actually use the disease itself as a tool in dealing with them. It took me so long to accept the fact that in this case it's ok to lie to them, it's ok to confuse them. When I was dealing with my husband and the driving license issue, and also, because he had been a hunter and sportsman for all of his life, the issue of giving up his (oh my god the sacred 2nd amendment!) firearms, I fabricated entire phone conversations with "government bureaucrats." I'd make fake phone calls in his presence demanding that my husband be given back his license, which disspated some of his anger against me. I had him sign "forms" and I told him we had appointments to see the "director of the DMV" and just generally did anything and every thing I could at the moment to make him think it was being handled and the outcome would be in his favor eventually. It took several months, but eventually he forgot the whole thing.
It's easy to fool them because of the disease. I know it sounds horrible, but in this case you have special dispensation to use any tool at your disposal.
And...so hard to accept... we can't fix it, we can't even make it better. No matter how much time, love, and attention I gave to him it didn't help, it wasn't acknowledged or appreciated.
One more thing. The reason they rage at us and are sweet as pie to others is that we are safe, they still know on some level we will not abandon them.
Beenthere, that was great tactic doing all that phoney calls, paperwork etc. maybe it could work for others here. makes him think you are working in his benefit and ease the disloyalty and trust issues. i agree wholeheartedly there is a point when its do or 'lie'..not die,:) lie like the devil -anything to appease the immediate situation is best. they will soon forget and move to another something just as fustrating.divvi
Lie, Lie, Lie. Have NEVER been good at it, but I am getting better. I am all about honesty, but you have to do what you have to do. It's a fake relationship anyhow.
Joan...he still loves you. Look at him as you would look at a furious toddler who is throwing a temper tantrum and screaming "I hate you", and remember he doesn't mean any of it.
Joan, I just read today’s blog and wanted to wish you well at tomorrow's appointment. I didn't know Sid was involved in a medicine trial, I am sure you are correct that they may not be able to help at the moment. But, do follow through and seek medication when the trial is over. Best of luck driving tomorrow! Peace and happiness, Nikki
Joan, I have found that it is amazing what we spouses have found we can do that we thought we would never attempt. You will be able to drive on the freeway as I believe that God gives us caregivers extra protection at these critical times. You are in the midst of transition phases for Sid and you but you will prevail I know as you are a tough lady!! I had to take anti depressants for a couple of years and it helped me get through the actively hostile period of my DH so I suggest you try out some medication f or yourself if possible.
The AD devil has been constantly lurking for more than a year now. Almost anything can cause his appearance. The verbal abuse happens daily, the physical or threat of physical happens frequently. There is never an apology or acknowledgement ,even during somewhat sane moments.I have told Dh that he has destroyed my soul.The doc and social wotker suggest other living arrangements.
Next week I am taking him across country to live with his daughter. The family wants to give this a try. If it doesn't work we'll look at LTC. He can be very sweet and kind at times, especially to others.I am exhausted , mentally,physically,emotionally.
Joan I hope things improve for you and that you find the strength to cope. It just breaks my heart.
Anna, have the doctors exhausted all the different meds that can sometimes help control the aggression? I'm sure that you absolutely need and must have the relief of having his daughter care for him now, but she will become just as haggard as you if something isn't done. And I'm sure your husband is suffering as much as you are from being unable to control himself.
I agree Anna, if your husband isn't on medications, look into them. They have made the difference on me being able to keep Lynn here at home instead of a nursing home. If he is aggressive, he will be put on some form of medication at the nursing homes as well. I am sorry you are so drained, it is exhausting. Alzheimer's has destroyed many lives and souls.... so heartbreaking.
Dear, beenthere and others, I'm pretty sure my DH has FTD. I have tried the decpetion and it doesn't work with him. Although he has some very short term memory issues. He loses the memory of conversations that we have had. He still has the ability to know what is going on. Does any one have suggestions for dealing with the anger, fits, moods, agression, obsessing, etc. for FTD? When I switched all of our bills to on-line or e-mail so that he didn't see them show up in the mail, which causes him to obsess over them and get angry, I got in big trouble because he knew the bills weren't coming. He knows when I am manipulating and lying to him. I know it isn't technically lying but to him it is and I am being decetful. Any suggestions?
Mary-does your husband have an "official" diagnosis. The usual AD meds made my husband much worse as he has FTD, Seroquel was the only med that worked. My feeling is that retain their intellect but can't control their actions. Everything has to be their way-ALWAYS
No. We are still at the stage where he doesn't think it is him, he thinks it is me. We go through the divorce talk all the time. "If he divorced me, he wouldn't have any problems." I have noticed especially in the last 6 to 8 months more and more personality changes and moodyness. Yes, DH also always wants it to be done his way. My way is wrong. You said it so well "retain their intellect." Ssome of the time, I can change the subject or tell him that I have to stir food or do something else that has to immediately take me away for a few minutes, and this is the only thing that helps. He thinks that I am hiding the mail and other similar things. I truly feel that we are at least a year may be a little longer from me actually getting him to the doctor about this. I hope that it won't take a major problem to accomplish this, but I'm afraid that is exactly what is going to happen. and boy are we into the sundowning. He gets so tired and adjatated in the late afternoon. Thanks for your help. You seem to have a good handle on this.
Dh is on pozac and aricept. Because of the various meds he is taking for heart disease,highBP, high cholosterol, abdominal pain, the doctors will not prescribe the meds mentioned here to control anger. Unfortunately he will probably become aggressive with his daughter as well. I believe there was always a lot of anger in his personality but prior to AD he was able to control it. He was always somewhat negative.Had his personality been different, I expect we could have remained together for a while longer. Its been seven years, but the last two have been dreadful.Physically he appears to be wonderfully well and he is a very handsome man. PITY....Horrible disease.