I woke up from a sound sleep not too long ago with my husband accusing me of having someone in my bed with me for the past two hours. Now, he says he's (who?) is in the yard waiting for me. John told me he's called the pollice and is sitting in the living room while I'm locked in here in my office crying. (he really can't dial the phone). I want to go give him some more Seroquel if he'll take it. How much more than the 125 mg a day is safe? I just want to be left alone and not a victim any longer. I'm frightened, but not enough (yet ) to call 911.
StuntGirl - I can't imagine what you are going through right now. I encourage you not to wait to do something after you are hurt. In order to not be a victim, you have to be proactive and do something. I don't know how much Seroquel is safe. Can you call his doctor and get a recommendation or call a local hospital and talk to the emergency room RN?
StuntGirl, I know your fear and pain. My husband is on 225 mg/day, but I would call his doctor or the emergency room or possibly a mental health emergency line (we have one in our county in NJ). Hopefully nothing happened to you. My DH's neurologist recommended purchasing pepper spray (I have) in case he became enraged and I needed to get out. It's one approach which might give you time to leave if you have to. My experience with calling 911was that I could no longer control what happened to my DH and it took months to get him released from psychiatric hospitals. Do what you need to do to be safe.
Thanks for your advice. I just get so frustrated here. I'm a "good girl" and have nothing going on that John should be worried over. I take good care of him.....not hanging onto his hand all day, either, though. Won't, can't do that and keep myself alive. I'm fine this morning. He went to sleep on the couch last night with all the lights out. I went on to the bedroom upstairs and shut my door. Irresponsible? Didn't care at that point.
Stuntgirl, I just got off the phone with a social worker, someone who finally talked to me for long enough to get a sense of what is happening for me and my husband and to make some suggestions on how to deal with things. Initially, I was prepared to poo poo what she was saying, but now as I think about it, her suggestions warrant a try. I believe I just wanted someone to come in here and take over and tell me what to do, give him some drugs and make things nice. I didn't want to have the effort of trying some new strategies of dealing with him. The one thing that I think might be something for you to consider in this is the validation therapy she was telling me about. I have been in a mode of trying to make my husband be here in our reality which causes no end of push/pull, no you didn't/yes I did kinds of arguing. Her thought was to try to see behind what he is saying and validate his feeling. Could it be that what he is really saying is that he is afraid you are going to see other men and that you are moving on without him? To perhaps try saying something to the effect that you understand that he would not want you to leave him for another man and that you love him and will be there for him. Then to quickly move onto something else to distract away from that thought process. I know that sounds like a very simplistic idea of a fix for what we are going through to be sure and I don't want to minimise the hugeness of dealing with this man for you. Just think about it and see if changing your approach would make any difference. I know I'm going to give it a try, I don't have anything to lose by changing at this point.
That Is a good thought.....sometimes I respond to other things he says by just saying, "whatever you say, John." But those issues aren't so emotionally charged, either. I'm learning not to argue with him. I'm getting validation for what I'm going through with all these people coming in and out and witnessing his confusion along with me.
Stuntgirl, I hope things are better for you by this time. Please let us know.
I just happened to be reading this article on what to do in case of violence (on a site recommended in another thread); perhaps you've seen it. Here's the link:
Jules, if you would like to read more about the approach your social worker was talking about, there is a book that really helped me: "Learning to Speak Alzheimer's" by Joanne Koenig Coste. Should be in every good library and of course available on Amazon. I read this, and my son and his wife and it has helped all of us.
This book is available on the Alz. Spouse website through Amazon. If you order it from there, Joan gets a little commission...Check out her "book list"...
Stuntgirl, You may not be seeing both sides of the picture here. One minute in a post you say your husband is fine, and the next minute you say you almost fear him and want to up his medication. You are not a physician, you are dealing with a very sick man and I for one can see why his children want him protected.
Jane, you're certainly entitled to your own opinions, but if they're potentially hurtful to others, I think they'd best be kept to yourself. How was your post intended to be helpful? I'd suggest that we both go back and edit/delete these two posts in the interests of forum harmony.
My DW was on 225 MG of Seroquel a day, I don't know what strength Seroquel tablets you have, but you could probably safely give him an extra 25 MG if he is really acting up. An extra 25 mg can make a lot of difference in their behavior. You can use a pill splitter to split the pills into a 25 mg does if you need a smaller dose. The worst side effect would be increased drowsiness.
Stuntgirl, My dh is on 600 mg per day of seroquel. He cannot take risperdal and after much work with his drs, we finally found this dose that works. He can still recognize my voice but he is confined to a wheelchair now. Without this dose, he is severely agitated. You probably should work with the dr that prescribed this med to get him better medicated. Maybe increased seroquel is not the answer but rather a different drug altogether. I am very leery about changing the meds dose without consulting with a professional. Good luck.
Groundchipper, the post I made is to try to help stuntgirl see that she is not the Victim here, it is her husband. She has had many posts that say he is fine, nothing wrong with him, just people intruding into her life, then in the next post she states all the things he is unable to do such as even dial a telephone.
It is meant to help in a way to let her know she is not a physician and that only a physician is suppose to up a prescribed dosage of medicine, we are not to play Doctor. You do not up a persons medication just because they accuse you of something that is part of this disease and he had not shown a violent act toward her.
It seems fine as long as people are agreeing with her but then when a post comes along that is not agreeing with everyone else, we have a lot of blame put on the person who does make the post. As for me I am sick of setting back, watching and listening to people urge her on and this man is sick. So if you did not like my post Gourdchipper then so be it, I am also entitled to my opinion and I will not delete the post. If Joan deletes the post that is fine. If I cannot offer my opinion when I see a person in harms way then I do not need to be on this site anyone. Groundchipper your suggestion is out of place.
My reader, who gets up MUCH earlier than I do, alerted me to these comments. If you notice, in NONE of my posts, do I EVER give advice about raising or lowering medication doses. As Jane said, that is for a doctor to decide. In my case, the DOCTOR gave me the option of adding one more Risperdal if I felt Sid needed it. But I would NEVER do any medication adjustments without consulting the doctor first.
So when Stuntgirl or anyone else asks advice on what they should do relative to their spouse's medication, I would always give the advice to consult the doctor.
Dear Jane. Yes, my husband seems fine a lot of the time. He can pull it together when he has company for a short period of time. He can't dial the phone, read a book, watch a television program and comment on its content. Getting him to go with me to necessary appointments like to the doctor (his or mine) or to get a haircut or to grocery shop is HELL. We have to get into terribly upsetting arguments just to get him off the couch or out of bed and dressed. He can't bathe himself. He doesn't seem to care about a thing. I suggested he needs an antidepressant as well as the Seraquel. They differ with me and won't prescsribe one. I AM NOT, nor ever have, changed his meds without the consent of his PCP. We have various persons coming to the house all the time, Pt's, OT's, visiting nurses, social workers....to the point of annoyance, really. I think it's to no avail....I mean, really, the advice of one of the OT's was to have him decide on a "hobby" of some kind by the time she visits next. These people don't get that he has AD, I believe. He IS NOT going to develop a hobby. What are we gonna do? COLOR together?? No, he doesn't want to go to the daycare center in town for elders. They won't take him anyway if he doesn't want to be there. Nothing you have said has hurt my feelings. The only thing that has cut and made me bleed has been the suggestion that perhaps my children have a real reason for feelling that their dad is in danger being in my care. Really, that is unfounded and cruel. I'll say this here, where I see that no one else will admit it except in private e-mails.......I DO NOT love my husband. THIS IS NO LONGER A MAN I LOVE. We have had a very stormy marriage that should have ended years ago. I brought him home from the nursing home in Florida because I saw that he was languishing there. My concience wouldn't allow me to leave my husband there in those conditions with no family except a bitter sister nearby. He is far better off and healthier now that he is home.....and he eats me out of house and home. I take care of him out of duty and responsibility. I AM tender, attentive and loving in his care. There is little "conversation" here. It's the same as when I lived alone, just more to take care of. I know in my heart I'm doing the right thing by his being here as long as he can be. This way, in the end, I know I'll experience no regrets. Not being a martyr, just the right thing to do, as I believe it to be. I, for one, DO NOT want this to drag on and on. I want it to end. But I would never do anything to hasten it. Even if it were to give one half of a pill more to control his "fits". ALSO, perhaps you've never been awakened from a sound sleep with a firm thrashing to the back of the head and the screaming of an angry man that he found your "lover" in bed with you for the past two hours and now "he's" in the back yard waiting for you? It's a roller coaster here and it's never the same, from one day to the next. I wish it were over. I said it. No one else here will. BUT, everyone's experience here is different. Some of you have teddy bears that follow you around all day like children. Some AD spouses sleep all day and are totally incontinent and even need to be handfed. Some are extremely violent and need to be placed for their own as well as the spouses welfare. I'm not there yet. Some of you are 'lucky' enough to have an AD spouse that can still go to a movie, out to eat, visiting, to church, and even suggest doing something ..... some even help cook a meal. Most of you have family (even if they act like wart hogs) that help out. Not me. BUT, I still value your friendship here and you're STILL invited to my "virtual fourth of July party".......I'm hosting that bit of frivolity because there certainly won't be any kind of celebrating here today. Now, I'm going outside and take a deeeeeeep breath. Know that my "dh" is peacefully asleep with everything he needs. I promise you...he is NOT in "harms way".
I sent you an e-mail, which was returned as undeliverable. Please e-mail me. - my e-mail was private - something I did not wish to post on the boards. It was informative and non-adversarial.
Stuntgirl, Hang in there, hope you're managing. This site has made me aware that some of you Alzheimer spouses are the world's new unsung heroes. Stuntgirl (got to check out the thread on screen names and see if I can find out what your name indicates!), I am pretty new here (and still in a relatively easy situation) but have read a lot of your posts and certainly have an immense respect for what you're doing.
Thanks, JeanetteinHolland......it's okay. Sometimes, because there's so much to read here....and say, sometimes, it's hard for any of us to keep the facts straight. When I post here and on other threads about my fears and anxieties, medication questions, it's because so many others have already experienced what I'm going through. NOT looking for anyone to make diagnosis for me or even suggest that they prescsribe any additional or other medications. I HAVE been told by John's doc that I can up his Seraquel a couple of tablets a day as needed aside from the three he gets in the evening. (25mg each). Just looking for feedback. Yeah, it hurts when I'm misunderstood, but that's okay. I bounce right back. Made of jello and brick. COME TO MY "VIRTUAL" JULY 4 PARTY!!!
JeanetteinHolland, Stunt Girl raises horses - hunters and jumpers - Her friends teasingly called her "StuntGirl" for one escapade on horseback that nearly killed her...more broken bones than one could count!
(1) : one that is injured, destroyed, or sacrificed under any of various conditions <a victim of cancer> <a victim of the auto crash> <a murder victim> (2) : one that is subjected to oppression, hardship, or mistreatment
Methinks we are all victims here, DHs, DWs and the caregivers.
Stuntgirl..I read your posts and kept quiet....and now I will open my stupid mouth, put my foot in it, and mumble these words... Do not scream at a deaf person......they will not hear you...... Alz language is different (sort of like ob or pig latin), and you must learn to understand what is being said...I think John's biggest fear was to lose his "trophy wife", and he is expressing that fear in a way that only he can understand...his insecurity speaks that you have a boyfriend under every bed... My advice to you is this...Do not try to reason with an eoad patient. Do not argue with someone who will not understand. Hate the disease, not the person. Learn to bait and switch...distract the argument. put the fire out when it is small....do not light matches...It is the disease talking to you.......not and not and not the person.........Become a duck.......yes a duck....let the words roll off your back...learn to quack.....its not only fun, but theraputic.. This is the advice I was given by a wise person...and it has helped me cope with the same situation you are in....I learnt to hate the disease and love the person..I learnt to accept the yelling and screaming and the constant berating that I get......I am a duck.... quack quack quack.........I am quacking up I think.
Stuntgirl. i think alot of us are confused with regards to having your husband back at home and from the getgo we have endlessly warned you that he was not going to be a different person at home from what he was in the florida NH. the misconstrued posts are coming from the endless conflicting posts about your feelings towards your husband both then and now. back in april/may you continually stated over and over howmuch you loved him and couldnt wait to get him home to holdhim and comfort him for as long as you could. nowdays you most recently post you HATE him over and over and 'wish it were over'. this type of emotional rollercoaster is unhealthy and does conflict not only to you but to those of us who have tried to give you postive feedback and have tried to see the good in your bringing him home. Jane is not the only member here who has concerns for your husband due to the fact that you have stated he was at 110lbs, anemic when you brought him home and in need to constant supervision due his instability and falling issues. you have said that the OT, PT and aides are invasive but yet you have said he is improving so i would think if thats so you would want to do everything to continue their home care and be willing to take the obtrusiveness of it all without conflict. its all quite confusing to me personally and the yoyoing in your back/forth emotions with regards to his care and your emotions towards him can only leave us worried and anxious for him. we know he is at the mercy of your willingness to continue to be a good provider and caregiver to him whether it be home or in a nursing home. without doubt alot of these conflicts have come from your own posts here, Jen. we can only deduct from what you post in the words you convey here to us. i think we all are a victim of our own circumstances. divvi
I agree with you divvi - it gets hard to hear the conflicting post. May i make a suggestion: Jen has started so many individual post but basically are all the same - venting. Either use the venting thread or start one of your own, just for you to vent. Your situation is different from any of the others here in that he was gone for a year and then you do all you could to bring him home. You were forewarned that it would be no cakewalk. I think in your frustration you forget all the warnings and are only thinking in the moment. If you post on your own thread, maybe too you can go back and re-read your older postings.
When I was in counseling and journaling, part of my work was to go back and re-read older writing. It helps you to see the whole picture and see the pattern. I realize the situation will change, but it will help you to keep prospective. You will see that much of his behavior is repeated. Also, you can keep check on yourself on how you are handling the situation.
This make any sense??
We want you to post and vent - you need to for your own sanity. And, I really think you need to talk to your doctor about not backing off on some of your anti-depressants. Your situation is too stressful right now - IMO.
i understand everyone's concerns. I'm doing the best I can for my husband. No one that could be a "fly on the wall" would deny that. Yes, I thought it would be better than this when he came home. Remember, I was unable to have little communication with his health care providers during his stay at the NH's....as ordered by his daughter. I wasn't allowed access. All I had was his telephone number and his voice. Sometimes heart-rendingly loving, sometimes so accussing and hateful. I did what my heart told me to do , against all of your all's warnings, against what my parents wishes for my life were. I brought him home with me. I still think he is better off here at home. I'm sorry I've given off conflicting messages. What I've recently written is most accurate. No, I'm being advised (by my M.D.) not to back off of any of my antidepressants I'm on. I do NOT self-medicate....I'm an ex-junkie, for God's sake. Only the Ambien. It doesn't work anymore like it should. I'm sorry I've made enemies and created the impression that I'm not a good care taker. I'm a very good caretaker and wife and mother. My self-esteem hasn't fared well here, though. A lot MORE of you have helped, though. I would never make a judgement on any one of you because I can't sit in your house and see for myself what you do or say or endure. I'm sorry.....I am who I am. I'm an open book. And, too honest.
Jen - you have not made any enemies that i know of on this site. The past recommendations about bringing him home are not the issue. When i read many of your post I feel like you are saying you are totally surprised. I think it is very common for us to read all something and then when it happens be surprised or overwhelmed with it. It is not just you this happens to - it happens to all of us.
What i suggested is to have a post for your venting - when you are frustrated by his behavior or just the situation. Instead of starting a new thread each time, just vent on the same one. It would also make it easier for us to follow the progression. We know you are overwhelmed - I don't know how I would handle being thrown full force into your situation/nightmare no matter how much warning I had had. But, my thinking is that if you do most of the venting on the same thread, you can go back and re-read previous post and say 'hey, I made it through the last time and will this time'; or 'that is right, someone suggested trying this and I forgot'. Look at it as a journal and reference book all on the same thread so you don't have to go searching.
Does this make sense? I am a logical thinker and it does to me. You have sort of a unique situation and my thinking is: if you can keep your post and the replies as concentrated as possible, it will help you to keep focused and confident you can do this.
Jen, I'm confused. In your response to Jane, you stated that your husband "eats you out of house & home." When you posted a day or two ago, you said he "would not eat or drink." Contradictory statements such as these are what makes most feel bewildered by your comments/threads. You said you were warned he was prone to falling, yet you post that he somehow made it downstairs by himself.
Kitty....these things are true. Its like I'm living with two people in one. Some days, when all he wants to do is stay in bed or on the couch, he WON'T eat or drink. Then, at other times, he'll eat whatever you put in front of him and ask for seconds. He WILL go down the stairs by himself when I don't know it. Yes, Kitty, I'm confused, too. That's why I post. To compare to what others may be experiencing. I'm not trying to be a problem. He's not gaining any weight, though, with all the eating he does (when he does). His weight is holding at around 110. Bewildered, too, Jen.
All his behavior is what you should be "expecting" from alz. If you can't get him to go to the doctor's appointments, then you call the doctor and let them know. If he doesn't want to get his haircut, then don't make him. If he will let you, cut it yourself for him. They revert back to being a child and you can't make him want to do anything. So whatever he doesn't want to do, don't expect him to do it. Don't expect him to run errands with you, he may be at the point where he will never be able to "enjoy "that with you again. Breathe deep, and let your expectations of him go. Check with hospice to see if you can get help from them, someone to sit while you do the things you need to do.
Even though my husband can walk, there is no way I can expect him to go with me to the grocery store. It's been over a year or more since he has been in a store. We haven't had a conversation (is that defined as to when one person makes a statement and the other one replies with a statement on the "SAME SUBJECT"?) ---although I talk to him all the time. I serve every meal to him on a dinner tray and he eats from his recliner, because he does not feel comfortable sitting at the dinner table. He never tells me what he wants to eat, I just serve him what I prepare. I cut his food into small bite size pieces, put one piece on his fork so he'll remember to use it. If there is pudding or yogurt, I place a spoon in the bowl so he will know how to eat it. His drink is served in a plastic insulated mug with a big handle. Jen, this is an every day routine, done without a second thought. This is what we do routinely, even though it's rarely written on the posts. He hates taking a bath, brushing his teeth or combing his hair and never flushes. He doesn't answer the phone if it rings, nor does he recognize the door bell ringing as a sign that someone is at the front door.
IF you saw him right now, you'd think he was just fine. He is dressed neatly, sitting in his chair. His demeanor to others is just fine. That's the tricky part. I have to remind myself that the man I married is not inside this shell of a man. That man is gone forever. and, THAT is the hardest fact we must accept. This is - truthfully - the world of Alzheimer's Disease. It will never get better, no matter what I try to do.
I cannot stimulate him, change him or make him well. My second AH-HA! moment along this Alzheimer's Path was when I finally accepted this fact. So, now, I do what I have to do, day in and day out. I consider it to be a good day when he just sits quietly in his chair dozing and then takes long naps.
I hope you have your Ah Ha! moment soon. Then it will not be as difficult on you.
Well-stated, Joyce and Nancy B. It is what it is. Foster is blessed with a devoted caregiver. It's comforting after the AD journey is over to be able to look back and say to ourselves that we did the best job we could. Hugs.
Thank you Joyce, Nancy B. and Folly*: it is what it is; it won't get better; don't fight it: accept the limitations; move with the transitions as peacefully as you can. We aren't there yet, but this is my summary of your advice/suggestions. They're wise, and I'll begin following them in the ways I can now and be ready for the rest of the road.
Well said all of you. I sometimes felt like I was dealing with an alcoholic in the beginning. Some days were quite wonderful. Behavior under control and quite involved in life. As time progressed, we had heaven and hell- sometimes in the same day. I kept praying for heaven and that's when hell would erupt even more. I think I so wanted him to "get better" that I was willing to be taken in on his good days thinking maybe they would continue forever. Wishful thinking. This is what makes this such a roller coaster ride. Stuntgirl, you must be pretty verbal. The suggestion by Charlotte that you make your own thread might be great. I guess it's like having a journal or diary that you post in and it may allow you to vent easier. Really though, all your venting doesn't bother me. It does sound like you could use some atavan once in a while. This is the fight of your life-all of our lives- and nothing gets easier. Good Luck
For those of you who post and then feel you shouldn't post anymore because of "whatever reason", please hang in there with us. You need us, we need you. That's exactly what makes this website so necessary. We should speak freely without repercussions. Be mindful that everyone is at a different stage and some are more needy than others. We need to keep that cyber hug going. {{{{HUGS}}}
I just have to put my two cents worth in. I have been so down today, don't really know why but I am.
You know, I love my DH with all my heart. But bless his heart he is not, can not be the same as he once was. He is still in "this" body but he is traped by this thing called Alzheimer's Disease and can't get out. His body no longer listens to him and his voice not longer works for him. I know he is aware of the care I give him for once every now and then I can see a spark of reconition and thanks shining in his eyes. But he is not able to be the same as he once was. His mind no longer functions the way it once did. I hate what has happened to him, but I could never hate him.
This is not intended to be mean to anyone. I just wanted to express that they can't help it the way they are.
Kathryn, ditto ditto here on the roller coaster ride you describe. exactly the same here with the wanting to believe, heaven and hell, feeling like it was similar to alcoholism. I am just now coming out of that phase but really appreciated hearing my feelings expressed so accurately and well by someone else. Whew!
We all go through our emotional ups and downs with our ADLO's. I have ridden this roller coaster for six years, I know some of you have been on the ride longer than I have and had a more difficult time. Each situation is unique, we don't know what the others have to endure, their situations can be a lot worse.
The situations we go through and the emotions, guilt and pain we feel before placing our ADLO's were the worst part for me. I love my DW with all my heart and will see to that she is taken care of until the end. My DW is not the person I married and have loved all of these years. AD has taken all of that away from us.
Even after placement we will still be riding this roller coaster, they will continue to have their ups and downs and take us along for the ride with them. But, like all things on this earth, this too will end, I just hope there will be enough of my health and spirit left in me to allow me to enjoy life again.
I just read this thread from top to bottom and am so encouraged by ALL. Our journey's are all so different, yet, alot of the moments are the same. The 'seasons' of this disease are sometimes short, sometimes very long. The season of "madness" has passed for us...our life is alot like the "routine" described by Nancy B, except that my DH still goes with me everywhere. He might not LOVE it, but I try to do things a little @ a time so I can accommodate his needs. "This too shall pass"...a phrase I think about often, because one day, he may be in the 'season' of just sitting there or lying there & not able to do anything, including walking. So, even through the frustrating times of each & every day, I too try to just let things go...not suggesting in any way that one might accept "abuse" of a physical nature, but walking away from a verbal rant is a good idea. They seem to "forget" quickly if that happens. My own DH can no longer communicate as one other poster said. But we make the most of what we can...smiles when he wants to smile and if he's not in the mood for a smile, I just let it go and hope there will be another one around the corner...As we travel through these "seasons", I am reminded of the Serenity Prayer: "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." I have this on a card & also in my "mind" and I try to remember to think of it often...it does help. We cannot "change" this loved one...we can only help them and love them until the end. Thanks to ALL of you for your endless encouragement ~ D
there are time I thought I didn`t love my dh anymore but it was the alzhemiers talking, life got so hard and I could not cope being the sole caregiver most of the time, the children tried to help but he didn`t like it when they had to take care of him so he would get angry with them, so anyway since he is in the nh i have found my undieing love for him it is much easier for me to handle the alzhemiers now.