Today the fake smiles didn't hack it, the lets be upbeat attitude crumbled, I finally broke, and it wasn't pretty. Damn, how am I going to survive this? Like I said he is locked away, lost about about 90% of the time. It hurts so much, too much. I get interaction with him during feedings, smiles and even kisses. Sometimes he responds to my I love yous, sometimes not. I AM so grateful when he does! I truly am.. but I am so tired of pretending it doesn't hurt like hell when he isn't able to. The lost look in his eyes is going to kill me.
He is doing wonderfully well physically. His doctors are very happy with his treatments. His heart is good and healthy. His blood pressure is excellent. He is on no medications for any other illness. His body is healthy. And I am very grateful for that!!! I want him with me for as long as possible!!! This is such a frigging cruel disease, I despise it with every fiber of my being. I am so angry right now, so heart broken, and I feel lost myself.............
I just dont know how to go on from here...... I had a bit of a break down and my doctors had said a few months ago that I couldn't go in every day any more, that it was too much for me emotionally. And they were right. Now I am filled with guilt, did Lynn decline faster because I wasn't there every day? I am depressed as hell, and yes I am on medicine. When I go in every day, for ALL day, like I am now at the hospital, it is a double edge sword. I get to spend more time with him, and I get to see when he responds more, but I also have to see more of when he doesn't......... I feel good while I am with him............and when I am not I just sit at home depressed.
Oh I put on my brave face for the world. Truth is, when I am not crying it is only because I have found a way to shut myself down. To go into numb mode. Had years and years to practice it, now I have it down to a perfection. People want you strong. I think because they can't handle it when you break down!
I dont pray anymore. How do you pray to a "loving" God who would torture the love of your life so? How do you carry on your blind faith when you are watching the love of your life slowly, inch by inch, year after year be taken from you? I found myself sobbing, begging and praying to God tonight for the first time in ages... please!! just give me back a tiny piece of him, just a tiny tiny piece!!! Stage 7 is going to be my undoing. everything before was a piece of cake compared to this.
Please do not advise me to try to detach from him, I can't! It isn't in me. I think I will call the hospice hotline tomorrow, maybe their grief counselor can help me find a way to survive this. I told my doctor I wish I could go before Lynn. And I do. I am NOT suicidal, I just do not know how much more loss I can witness. I am not sure how those of you who have gone down this journey have survived? I am in great need of your help right now, tell me how, HOW can I make it through this?
Nikki, We all hear you and understand what this is doing to you and your DH. Not one of us has gone through this journey without some days as you describe. I was wondering the other day just what the purpose of this trial is for both my DH and me...what lesson am I supposed to be learning for which he is the victim of the disease and all the horrors to come. How unfair to such a good and kind man. Then I think back, not to that old adage that God never gives you a load heavier than you can carry. There has to be something more we are to gain from this painful trek that we have no choice but to see it through. For Christians, one way to think of it is as joining our present miseries to the Cross of salvation, the agony Christ suffered on the way to Galgatha. When my own dad was facing losing his leg to the ravages of diabetes shortly after my mother died of AD, and it was the ruination of all the plans they had for retirement enjoyment, I asked him how it was he was not spitting angry at God ( cuz I was). He said something very simple..that he " accepts all of this, the loss of mom, his legs, as God's way of fitting him for heaven." He never complained, he was not always happy about his situation by any means but he did not complain. He died 3 weeks before his 93 birthday. I think he thought it was Christmas day that year as it was Nov 25th and one time, when he lost a patient on that day, I said what an awful thing as Christmas would never be the same again for that family. He said he thought Christmas Day was the best day to go to heaven..can you imagine the birthday party for the Baby Jesus and he hoped there would be lots of chocolate cake. He was a man of great faith andl lived it to the end. I try to think of his words to bolster my way out of the blues when I get out of sorts as I too have been these past several days. Arms Around..
Nikki---My DH and are not yet at the point you and Lynn are on this horrendous journey, but there a couple things I truly believe will bring me through--helping me get my DH through. First, I am not alone. Our loving God does not visit this upon us, but rather is beside us throughout, and carries us through the worst parts. He provides us with wonderful angels here on Earth to support us as well (friends here, and family of our hearts). Secondly, I honestly believe our LOs are still "in there". The Dementias wreck the communications lines and eventually shut them down, entrapping our LOs, but they still know us, and respond to us. How else to explain the brief flashes of them we've seen reported so many times, even at the very end? You've seen this yourself, with Lynn. Nikki, Lynn is not, nor will he ever LEAVE you. He is and will always live in your heart. You will make it through this. You told us yourself. Your love will see to it. Love remains.
((Mimi)) and ((Carosi)) thank you both so much for your compassionate and loving replies. I need it, badly. ((Hugs))
Carosi, no fair using my own words "against" me lol.............. Love Remains ♥ I sing that song so often now, it helps me often times. Tonight I just hit bottom, it has been a looooooong time coming. You brought me great comfort with these words......"Secondly, I honestly believe our LOs are still "in there". The Dementias wreck the communications lines and eventually shut them down, entrapping our LOs, but they still know us, and respond to us."
In the pain, I guess I couldn't think clearly. One of my biggest fears right now is, what will I do when I lose that last 10%,........... I was thinking that when he is lost and not able to talk that it was because he didn't remember me. But you are right, it HAS to be that AD is making it so he can't communicate it as often as he would like. As you say, how else could he still show me affection and tell me he loves me.............. I feel a bit of peace right now... thank you!!!
Mimi, such a beautiful heartwarming story. You Dad was a man of much stronger faith than I. I will continue to try for all I am worth.....
I think maybe now I may get a little sleep. I am up at 5 to get everything done so I can spend most of the day with Lynn♥ Thank you for lending me some strength this night ((HUGS))
Dear Nikki, You are welcome....more than welcome... And thanks to Joan for this place where we can be support for one another. I know I would not make it through without everyone here.
Nikki I recently read a book titled NECESSARY LOSSES written by Judith Viorst. It is an old book copyright 1986 but you might be able to find it in a library. I have kept my copy around as I like to refer to it occasionally. It deals with all kind of losses we experience throughout life. I found it to be very helpful to me. Please don't stop praying. Ask for HIS will to be done and not yours. Turn it all over to HIM. God will ease your pain if you will allow HIM to. Sweet Pea
I do not know how I am supposed to feel. Outwardly you act like everything is normal. Inwardly you have doubts and fears of the future and no one to share them with. No one to understand, No one to knows. You can not tell you spouse, that would be cruel. It is not their fault that you are placed in such a position. Yet it is that person in that body that is the source of all this stuff. You feel what you feel and to deny it is going to get you into more trouble I think. You just need a way to express your feeling with out hurting anyone. I think I will take up target practice with my AR 15.
I'm not crying and I can still pray. But I truly think that the "problem" is that it is almost impossible to find someone to just talk to so one can talk it out.
Mimi and Carosi, thanks for your beautiful, encouraging words. It has helped me a lot, too. Nikki, I feel your pain. It's so hard to face that blank look. But, I agree, your DH is still there, and although he can't express himself, I'm sure he knows you're there with him, and I'm sure the love is still great.
Starling, I wish I lived near you ... I'd sit and listen anytime.
Yes, God does not bring this to us, He walks with us and He'll never desert us.
Let's always remember we're all here for each other. Thank you, Joan
Nikki--years ago (I wish I could remember where) I read or heard of a study with end-stage Alzheimer's patients. The purpose was to see if these people, who could no longer speak, recognized their loved ones when they came to visit. The results were that the patients' blood pressure rose when someone they loved walked into their room. So from that finding, the conclusion was that yes, even at the very end these people knew there was a different connection with their loved ones than other people. I found it comforting to read that and hope it will help me deal with what is eventually going to happen.
I think asking Hospice for help for you is a great idea, it is one of their missions. Another option would be finding a good therapist you can relate to who will help you deal with this tragic situation, now and after Lynn passes. From your post I can see how much pain you are in, and I hope you can find someone to help you through--you should not have to do it alone.
Thank you all so much <3 Writing on my phone so can't write too much. I think a big part of my problem is that this is a long slow process and people even those who do love me and want to help...don't know how to handle someone grieving sooooo long. So I try to keep it in. And clearly it is not healthy! I don't cry often, I wait til I am close to completly breaking, and only then do the tears come.
I did try an alzheimer's grief support group once. I felt so out of place. I am 43 and still deeply in love with Lynn. Most of the people there were at least 70 and more than ready for their spouse to die. I couldn't connect or open up.
I am still struggling with my faith, but God and I are on speaking terms again....it's a start...I. feel a bit stronger today. Have been with him since 7. He ate a good breakfast and he responded some. He comfirmed that even when they seem lost and nonresponsive that they are still there. I sad its Nikki. I am right here and he said I know...and with eyes still closed said I see you.....made some of the ice around my heart melt <3
Thank you all so much for your support it hurts so much to talk about it...but keeping it in is surely killing me inside. Thanks for being here <3. Hugs!
Nikki, sometimes we don't see gifts from God even when they are in front of us. Maybe God is allowing Lynn to be on this earth until you can accept "letting go". But an unhealthy "body" cannot be on this earth forever. Obviously you are going to have a very hard time if you don't start going thru the letting go process now, while you can hold him and say goodbye. I think you had a very good idea when you said you were going to call the Hospice Grieving Counselor, they are wonderful help when it comes to end of life. It would also be a wonderful gift you can give Lynn, if you can honestly let him know that you will be okay when God decides to take him home. I am praying you will find the strength you need.
Our hospice here has a group or sessions for those in the anticipation period which we are all in at one level or another. I think perhaps as our LO gets closer to that end stage..I don't mean the harder stage 7 but where they are not eating etc and things are dicey get with an anticipation grief therapist. I will do that.There are days I am overwhelmed with the chores of this and when I get to my breaking point I go beat the trash can with cardboard or go and cry off my myself...the anger at what this disease is doing to such a wonderful man is just so disrespectful to him and it has ruined our plans for trips and other fun things I see so many of our friends enjoying now..and I hate to admit this, that as much as I am happy for them to have the dreams come true I find I get kinda green eyed at the same time. The one "person" who understands me and my emotions is my beloved cat, Ebonie..she just knows and is always there with a paw pat and kitty carols in my ear.
Oh Nikki, dear sweet Nikki, if I thought for one minute that God made this happen I WOULD HAVE NO FAITH! I HAVE to believe that God GIVES US THE STRENGTH TO HANDLE THE BAD THINGS. Here are 3 of my favorite sayings: I hope they help, arms around and around.
1. God does not give you what you can handle, he helps you handle what you are given.
2. May your tears come from laughing You find friends worth having With every year passing They mean more than gold May you win but stay humble Smile more than grumble And know when you stumble You're never alone
3. "Friends are angels who lift us to our feet when our own wings have trouble remembering how to fly."
Oh, Nikki--I'm so sorry you are having this happen. I, too, know what it's like to keep this cheerful smile plastered on my face. Some times it hurts and I'm afraid my face will crack. People say "How are you doing?" And I put on a big fat old smile and say "Im doing very well. Thanks!" hOWEVER, inside, we all know it's not really all that true. Does this mean I'm a dishonest person?
I believe God allows thee things in our lives for a purpose. I don't know what the purpose it. I had someone say to me "You're really a good person. Why did God take your central vision and then handicap your husband?"
Well, I am God's hild--I am the daughter of the King. He loves me. If He loves me, He would NEVER cause anything like this to happen to me or any of His children. As parents we let things happen to our own kids so they'd learn. I prefer to believe He's letting this happen for some reason. I don't know what it is abut I can asure you that when I get to Heaven and see my Heavenly Father face-to-face, I have every intention of asking Him "Daddy, why did you allow this to happen?" and He will say "Daughter, I let that happpen bercause........" And then I'll know.
My DH doesn'sts have that blank look all of the time yet. I can hardly stand it. But then other times, he says something really neat and I feel so much better for a while.
hmmm I understand what you are saying ((Joyce)) and I thank you very much for your sweet post, but I HAVE been saying goodbye, for years. Now is not the time to "let him go" in my heart I know that. When the time is right, I believe I will handle it with the compassion and love that he intrusted me with. But, I refuse to say that final goodbye, go through the letting go process, while he is still here with me! I would rather spend that time cherishing every moment I have with him ♥
We are all different, we all need, want and desire different things. We know our hearts, we only need to follow them.
A minister came to visit us today. Wow, what timing LOL. I feel better today.... I know Lynn is "in there", and he IS making sure I know it too ♥ It isn't all I want, it isn't what I wish, it isn't what we planned and dreamed of............ but, it is enough ♥
Let's be honest, none of us really know the answer to your question. We will have to wait for our turn in Heaven to get those answers. Until then we NEED to interpret what we have been taught in the way that gives us the most comfort. One thing I DO KNOW: God gives you the strength to go one IF YOU ASK, so keep on praying girlfriend. Arms around.
Nikki--How long ago did you try an Alzheimer's Assn support group? I ask because when I first contacted our local chapter, I was in a similar position to you. I was 56 when DH was diagnosed, I tried 3 different groups and was always the youngest spouse by around 20 years. It was depressing. Then, finally, our chapter started Early Stage/Early Onset groups, and people in their 40's/50's/60's do attend. So if you haven't checked back recently, you should.
I logged on today to write a post very much like Nikki's. People who find out what is happening to my wife at this ridiculously young age look me in the face and say things like... "You are always so up-beat, I would never guess you had that much on your plate". Or, "...you must have very strong faith."
In the past three years my son was convicted of multiple felonies, I haven't seen my grandchildren since Christmas of '06 and my wife is dissolving before my eyes. I stopped believing in god years ago. The only way to reconcile the ghastly misfortune that has befallen my loved ones and the affect it has had upon those of us who are left (not to mention me) is to accept that the universe is just a vast progression of random bullshit. If I were to believe that there is a GOD... who created it all and is all powerful... I would have no choice but to believe he hates me. I am no Mother Theresa but I have lived a pretty good life and my wife was close to perfect. Any "God" who would let such things happen to his faithful is not worth worship.
I struggle each and every day to find reasons to go on. I no longer look forward to anything. My wife has a genetic mutation of the P1 gene and it is autosomal positive. That means that it only takes one copy of the gene for it to manifest phenotypically (One gene... you get AD) it is not a risk factor like the APOE gene... it is an "on switch". There is a 50/50 chance that she passed it on to our beautiful daughter. I could conceivably live long enough to watch her die from it too. God?????
Everything that matters to me has been taken from me and yet.... I get out of bed and go to work and pay my bills and ....... I don't care
Dearest Nikki - I'm so very sorry for what you're going through. What we're all going through to varying degrees. I hope things get better for you. Sending you a big ((((HUG)))). I can also relate to something that Thunder shared about not looking forward to anything. I have a group of girlfriends in town, not planned, just sort of worked out (thank you Facebook). We are high school classmates and most of us haven't seen each other since high school. Everyone's meeting up at the local Mexican joint tonight for food, margaritas and fun. I'm not going. I know that nobody there wants to hear about my Alzheimer's hubby, and who would. I just can't relate to "normal" anymore. Sigh...
Diane, I think you should go! I lost most of my "friends" a long time ago. Maybe you could find out what normal people act like! ;) or maybe with a new group of people, there might even be genuine interest in your heartache ♥
Nancy, I am not that way. I still do not pray, but when something good happens... like Lynn responding... the first thing I do is send thanks to God. Luck has squat to do with Alzheimer's. IMHO
Susan...."God gives you the strength to go on IF YOU ASK" ........ I hear you, and I use to believe that. At some point, after so much heartache, who really wants to go on?
Thunder, I am a female version of you! For what it is worth, my heart is going out to you ((Hugs))
Nancy, For what it is worth, there are people who do the opposite. When bad things happen they have a plethora of rationalizations for why "God" doesn't interfere with the mundane, yet the praise him for silly things like getting a parking space or finding a sofa on sale.
There is no god. If there is... he has a lot to answer for.
Thunder, I understand how you feel. I am at one of the lowest points I have ever been. My life is a mess, my grown children lives are all in shambles. I hardly ever see my grandchildren. One of my grandsons is going away to a treatment center for 3 weeks and he is only 7. What is going on here. I feel like I woke up this year in another persons life. I am going to church this morning, I really don't know why. I don't feel like it is worth it anymore. I am losing my faith, I'm sorry but that is how I feel. How much more do I have to take. I'm not a bad person. But why all the pain? Thank you for letting me talk from the heart. No one else would understand.
I cannot emphasize this enough- As bad as things are and as bad as they get, please understand that nothing lasts forever. Eventually, the storm will pass. We will be battered and bruised, wiser and more resilient, and we will have another chance at life. If you need anti-depressants to get through this horrible time, do not hesitate to take them.
Two great examples of life "after" are Susan L. and Tony Pesare. Susan was at the lowest point one could get, but after her own suicide attempt and then her husband's death, she has pulled herself up and is living again.
Tony wrote this in Oct. 07 as an answer to the question - "Has anything good come from your experience with AD?" : "I would have to say NO. EOAD has taken my wife from me, added undo stress to my life, placed many more responsibilites on me, turned me into a single parent and created a personal sense of loss physically and emotionally in my life that I would have never dreamed or forseen. Today I asked her if she knew what today was. Then I told her it was a big day in her life 21 years ago. She had no clue. Happy anniversary to me. AD sucks."
Tony's wife passed away at the age of 43 two years ago. Today, he and the boys have finished grief counseling. They are doing well. One is off to college. Tony has a new woman in his life; he is happy, at peace, and looking forward to the rest of his life.
Life goes in cycles. Sometimes many of the cycles are like being caught in a nightmare, as most of us feel about our lives now. But it will change for the better.
Thank you, I know this to shall pass. It just seems the past week and a half that it is coming in waves. I get knocked down and before I can get up I am hit again. All things that are out of my control. And yes I am a control freak. Maybe this is why it is happening. I can not control everything. I did go to church and I do feel better. Still don't understand. But will use my faith to get me through. Thank you all so, so much for being here for me. I could not talk about this to any one else. They would not understand. Last night I was so down, my DH did not know what to say, but when we went to bed he put his arm around me, it made me so happy:) I know that I have many blessings and you all are one of them.
I am also a control freak. Or I WAS before AD. The first time he met me, Sid's neurologist pegged me for a CF. He told me that if I was going to survive my husband's AD, I was going to have to learn to "go with the flow". It hasn't been easy, but it was either learn to go with that flow or I was going to the loony bin.
I have many post it notes on my computer. One says...... Be Flexible! I have to work very hard to do this:) Off for some coffee with my mom. Some time out will do me good.
Be flexible...true words..I was just thinking that it seems as soon as I get one little schedule in place...something changes it..things I need to do just never seem to get done for all the errands to the drug store or doctor's office...I think I will forever be in the starting gate. I have a little quote in my kitchen.."I am so far behind, I think I am in First Place!"
Remember the saying, "your lack of planning is not my emergency"? Well, an awful lot of stuff that didn't used to be my emergency seems to be now. In fact, anything DH wants is, according to him, an emergency, and he needs it right now! I also am a control freak and not at all good at flexible, but I'm working on it. Part of my problem is that I don't get anything done, because I spend too much time playing on the computer and waiting for the next emergency.
In my admin office my sign read " YOUR LACK OF PROPER PRIOR PLANNING DOES NOT CONSTITUTE AN EMERGENCY ON MY PART". It is not that my Dh is so demanding so much as his appointment are along with all the errands and general chores. I was thinking that today I might start addressing Christmas card..maybe I'll get em out on time! LOL
I have lived my life as an optimist; the glass is always half full. I have had my share of tragedies and NEVER have I been angry at God. I feel no one is immune to tragedy,it will pass and life will get better. Since my husband was diagnosed with FTD two years ago, and since both of us recovered from his difficult heart surgery and another devastating tragedy I don’t want to talk about, I believed I could handle anything. I never blamed God, but, in the last two months I’ve begun doubting. Joang, you say life will get better, we’ll be stronger and able to enjoy life again. I am 71 years old. How much time will I have left?
Since my very brief respite of three days, and for two weeks or so prior to that, I have been living in an almost constant state of anxiety (I have meds for this and an antidepressant). He has been so angry that every time I take some time away from home for myself he is angry, and if he isn’t he just saves that anger for another day. He has been saying such terrible things to me. My time at the spa is literally eating at him. Two days ago, he became very angry when I told him that the next day I was going to take my young granddaughter (a preteen) to the zoo (an annual trip for the past four years), just the two of us, talking and laughing together, just enjoying each other. When I told him this and that her mother would drive her here (they live over an hour away) and she would stay with him while the two of us were gone, he was livid! He couldn’t understand why we couldn’t go together as a family. I tried to explain that I needed this time alone with my granddaughter, that this time with her was extremely important to me. He was just awful. The next day he began yelling at me as I was getting ready, even making comments about my time with the massage therapist, calling them names, and even ended up saying I was a “whore!” I couldn’t believe my ears. He has NEVER spoken that way to me, literally screaming at me. When my daughter and granddaughter came, he came downstairs and began yelling at her! Never has he yelled at her like that, especially in front of his granddaughter. I’m afraid my daughter yelled back, trying to reason with him; of course, it only made him angrier. I had to apologize to my granddaughter and while we were in the car tried to explain why he acted like that. She knows about his illness and I had given her some books to read, including the one by Maria Shriver.
My question now is: How do I act with my spouse the next day, after his horrible words of the past two days? I feel so down today. I feel depressed and hurt. He, of course, doesn’t remember his actions of yesterday and I’m finding it almost impossible to interact with him. I spent the afternoon outside reading and enjoying the last days of summer. When I came inside to make dinner, he asked me where I had been, he thought I had gone away again. He was contrite when I told him I had been sitting outside. Tell me, please, how do you get over such a traumatic encounter and act as though it never happened? I’m stunned at how he acted yesterday and I’m finding it extremely difficult to even talk to him. I know it was his disease talking, but it still hurts. I know with this disease he only thinks of himself. I know all these things but still can’t forget it.
Bev, terrible when they act like this. especially in front of kids. my DH was particularly enraged by his own grandkids and mine early in the disease. he tolerated little of their antics even when they were good. it came to a point where i chose not to expose them to the aggressive behaviour and until he finally got the right meds to help maintain him on a more even keel around others. when they get angry like that anything can set them off and it can turn nasty quickly even physical. and you are right its almost impossible to forgive those ugly outbursts and all we can do is file it away and try not to dwell on it. but yes its very hard to forgive nor do we forget. they never remember what upset us anyway the next day. i am so sorry you are having to go thru this part. its horrible and nothing you can do but make an appt with his dr and try to add another medication to try to get him more 'compliant' so you can feel safe. without the right combos of meds they are very intolerant and hard to live with and safety becomes an issue if they are provoked. i hope you continue to have time with your grandaughter. its important to you both. eventually they seem to move into stages where they may need less meds and are easier to live with. divvi
Oh, divvi, I hope that day comes. Thanks for your advice. It helps, a lot. The funny thing is, I started him on more medication a week ago. The doctor told me I could increase it whenever it was needed. I did, but, still, it doesn't seem to have helped. Today, he is so nice and sweet. It's such a baffling disease, and I feel sorry for him one day and almost hate him the next. I'm sure if I were to tell him what happened yesterday, he wouldn't believe it. Do you ever tell your spouse what he has done, knowing he has forgotten all about it?
oh ((Bev)) I remember this "stage" with Lynn as well.... it is so heartbreaking when you see the love of your life changing before your very eyes. When they turn into someone who is verbally or physically abusive, it makes it even harder :( When you are living in these moments, at first you can not help but be shocked and very hurt. It is understandable and my heart goes out to you. There are a lot of post here on the "Alzheimer's devil" and how some of us dealt with these situations.
Having lived it, and moved beyond it.. the best advice I can give you is to just let it go. I know right now that doesn't seem possible, but after the initial shock wears off and it happens more and more, you will learn to let it go in one ear and out the other. You learn to understand that they truly can not help themselves, and then it is much easier to forgive. If it is any comfort, now it would take great effort on my part to remember those horrible times. They are there, I am just so busy dealing and living with the now, I don't look back on those times. The love is still stronger than those memories.
I DO strongly agree that you husband be evaluated and put on medications. These things wont get better, only worse if not addressed. Keeping you in my thoughts, we are here for you ♥
Nikki, I'll call his neurologist tomorrow. About a half-hour ago, after being so nice all day, he came downstairs where I was watching TV and suddenly began shouting at me, telling me if I didn't like it here I should leave! I don't know where that came from. Just an hour before he had been washing some dishes. I know I should ignore it but it scares the heck out of me.... Right now, my stomach is churning and I'm shaking.
Bev, make that call tomorrow. He may get up in the morning nice and calm so don't let that make you feel like he will be better. I know my DH cant help what he says but knowing and excepting is two different things. I really think excepting is so hard for me because I don't want to believe that this is happening. He told me the other night he didn't like it here and was leaving. I told him if he would wait until in the morning I would pack his bag. He was okay with that and of course, he didn't mention it the next day. Be careful......okay?
((Bev)) I do understand... if you read the older posts you will see that not only was Lynn verbally abusive, but also physically. I regret now that I let his VA doctor convince me it was part of the disease and something I had to tolerate. Yes it IS part of the disease, but it was NOT something I had to, or should have tolerated. As much as you love your husband, neither should you.
By "ignore", I do not mean it will not upset you. It should! Nor do I mean you should continue to let him frighten you!! He needs a medicine change, and you need to feel safe in your own home! It is so hard, but you have to keep you safe in order to care for him. It is so damn sad! Tragic! You are watching your husband change right before your very eyes. And he is changing into someone drastically different from the man you married! Bama, you are so right, that is why it was so hard for me to accept in the beginning too! I just couldn't believe "THIS" man was my sweet loving Lynn. Of course, it wasn't.... we all know this. But, this stranger looked just like my husband, and to hear those words coming out of his mouth was enough to break my heart!
I am so sorry for all of you going through this now..... if it helps at all, with proper medication, the aggressive personality can be calmed down. Seroquel was our miracle drug, keep trying different drugs and doses until you find the cocktail that works for your loved ones. And I am sorry to say, sometimes, having them admitted while these meds are adjusted is the only option. I SHOULD have done this with Lynn, and I still regret that I didn't. I wasted so much precious time!! Once the rages were treated properly, I got the love back from my dear Lynn. I hope the same for you ♥
I don't usually weigh in on these types of discussons but the comments regarding life getting better and getting over our spouses loss have caused me to do some thinking. I have been married just a short 35 years and have known my wife for 40, I don't think that a little time will ever erase what we have now and the hurt I will have when she is gone. I am one(not being there yet) who believes that I will never get over the loss of my soulmate and life will never return to normal. Normal has been gone for over 3 years and I haven't come to grips with it yet. I still go to bed every night with the greatest hopes that things will be better in the morning. When morning comes I realize that it was just a dream and in fact things have gotten worst. Every one who knows us including Dr.s and support people have beggeg me to place here in LTC, but I can't bring myself to do it. I will miss her to much and I know that life will be all but over at this point. I will put up with all the bad for just 5 minutes of good from her a day. I`m not saying that the cup half full is a bad senario but when reality hits us every day we all know that the cup is already more than half empty. I am one who considers himself a realist and don`t go along with the model that we humans have created for ourselves to live by. You know what I mean, no feeling don`t let anyone see you weak etc. (all Dale Carnigie stuff) Ivè seen it in the business world and I can`t believe that so many people are like cattle being led to the trough. Anyway I`m wandering from the point I was trying to make. If religion, or any other form of support gets us through the day and gives us a glimmer of hope I say go for it. None of us are in a position to judge another so any topic that is helful here should be OK. I hope that the thought of life after AD can support some, but I already know that my life as I know it is over.
selwynfarmer, I hear you and as you can tell from all my posts, you and I feel the same way. I want to hold onto Lynn for as long as possible! Even in stage 7, he is with me in his heart. A smile, a tender touch, holding hands, puckering up for kisses, and when I am lucky, an I love you or two. It is not what I want, but it IS enough. I treasure each sign that he still knows me and loves me. When he is gone, I will not find comfort in everyone saying " he is at peace".
He is at peace now!! The time when he was suffering ungodly anguish was when he KNEW what was happening to him!! Now, he is blissfully unaware. If there can be just one "blessing" in all this hell, that is it! He is content, comfortable and finally his mind is no longer tormenting him. So no, I will find no comfort nor peace when he says his final goodbye. It will all but destroy me.
I get so sick of people telling me I need to detach from him. It would be easier to cut my own leg off! We are all different. We feel, think and need different things in our lives. What is right for me, is not going to be right for everyone, or maybe no one else. But IT IS right for me!! I never try to push my views on others, I just ask the same from them.
As many of you know my father took his own life a couple of years ago. The pain from that is still unbearable!!!! It is different than any other death, because you are haunted with the questions of why? and what if? They "chose" to leave you, and it is a certain hell trying to handle that. I am not the same person I was before my Dad's death. He was a huge part of my life and I loved him greatly! His loss has left a hole in me that can never be filled. I will never be who I was before he killed himself. And I know, I will never be who I am now, once Lynn is gone.
selwynfarmer and Nikki, when my DW passed away over eight months ago now, I thought my life was over. I was absolutely crushed, mad as hell, and wanting to go with her. I gave myself one year to see if life was worth living, and if not, I would see that somehow something like a skydiving accident ended it. Already, I have seen that there is light at the end of the terrible tunnel of loss. It took several months of despair, tears, and just wanting to go to sleep and never wake up, but time somehow works small miracles. Little by little I found I could laugh at funny things, appreciate a sunny sky, and walk around this empty house without crying. I now feel confident, hopeful, strong, and independent. Not 100% that way yet, but the way I feel now, I will be by the time that one year is up. I know it seems impossible now, but it will happen...life does go on, and I plan to go on with it, and not be left behind in the quicksand of the dark past.
Nikki, et al - I hesitate to chime in on some subjects b/c my DH has been gone for so many years, I know how raw you are, but I dont forget him, I don't want to forget him, but it all has its own place now in my mind and does not dominate my life. When I started writing about AD I said that I would never condemn whatever anyone does to get thru the day, to get thru the hour, the moment. If you love God, hate him reject him, don't believe in him, it's all the same w/AD. Sometimes the believer loses faith, sometimes the athiest finds religion, but AD keeps right on chuggin' along. Whatever it is Nikki, do what is right for you, listen to your own inner voice. I never made a conscious choice to detatch--whatever that means--Nature just seemed to make it for me w/out my awareness, but I never stopped loving or feeling his love, but the grief ebbed, because it must if one is to breathe normally again. And I remember the words from an old song kept coming to me, "What'll I do when you are gone, and far away, what'll I do?" No answer, of course, and I did not want to hear the kind words of others, I just wanted my life back. But Nikki, Selwyn, you will not be the same person, your life will never be the same--but it won't be forever bad and full of sorrow, it will be different, just different. Right now you have earned the right to your feelings, if you can't feel strong feeling now, when can you? Let them be. I created a virtual AD monster in my head and, oh, how I argued, hated, kicked and cursed him--the *&%$^&*. And from time to time, as I write a new column, he still gets a whack, altho I am now happy and content. Just know that your are not alone in your sadness, others understand and can only let you know that we understand and support whatever you do. Blessings.
BettyHere, I printed your comments, because no one could have expressed my feelings any better. Beautifully written. It is as if you took my thoughts and feelings out of my hand and wrote them down for everyone to read. They might not "get it" today, but the day will come when they will say exactly what I did.
Early on in the disease process a friend who had lost her daughter to a car accident told me about the two support groups she had gone to to help her with her grief. The first one she described as a "death group". All they could focus on and talk about was their loss. That group was not for her, she wanted to move on from the loss. She left that group and joined another one. The new one was focused on moving on with life. It still took her 7 years before she was ready to clean out her daughter's room. The group all agreed that that was the normal time. It was an interesting discussion and I found it very enlightening.
We can't always choose the things that life throws at us and what happens to those that we love. We can choose how we deal with them. I can't save my husband's life. I can do my best to make what is left of his life comfortable. I can choose to not let the disease take me too and take actions to prevent it from taking me. I can choose to continue moving forward with my life when this is over. I know that my husband would not want me to let the disease take me too.
therrja-face to face support groups aren't for everyone. The bereavment group I attended started out with a woman who lost her husband 17yrs ago and is still mad at him and still crying. The one man came while his wife was still alive. He was in counselling and lamenting his woes to anyone who would listen. His wedding band was off of his finger the day after the funeral and her clothes gone the week later. Every woman in his community is delivering casseroles. A younger woman had just lost her second husband and was angry at the world. The chaplain stressed that we all grieve in our own way-and that is "normal". I went to the group out of curiosity and to support the chaplain as I have know her all through my husband's illness. For me-my cyber friends have given me all the support and understanding I need, and I thank this site for helping me to find them.