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I was wondering if anyone has any tips on how to handle the constant state of mourning one experiences when they are taking care of someone with later stage Alzheimer's disease? I am finding it harder and harder to even want to be in the same room with her. I know I have to so I can help take care of her needs, but I look at her and just shake my head most of the time wondering how it got this bad for her and for us. I feel grief every day from this, and now I am wondering if I will even cry when it's over or will I just be in a state of shock? I think I will feel relief too because it will all be over finally. It may sound harsh, but I feel that nobody should have to live in that state of mind and with all the physical problems she has. How do I deal with being around her constantly and not go crazy myself from the sad situation it has become? Any tips would be appreciated. Thank you.

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Dear wanmame; Many of you have helped me in seeing beyond what is, to what can be. I only prayed what was in my heart, and hoped I would not offend anyone since I am still fairly new on this site. My husband is 75 now, but we're as close now as we've ever been. There really is more inside of us than we realize. We just haven't tapped into all of it yet. Be Blessed Nancy.
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Dear Southernyankee,
What a beautiful prayer. I envy people who can put their words together like that. I pray every day but I have never been able to say anything so clearly as you have said it. I think I will print it out and save it to read. You inspire me. Thanks
Nancy
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Braida; As I read your post there were so many things that seems similar with not only my husband, but with others here. One thing I'm finding out as my eyes seem to become more open is despite what I see going on physically and even mentally with my husband bill who has still confined to the bed, like you said is to cherish the good moments. I think that is so important. I know everyday I tell my husband how he will get up out of bed one day and be able to stand and walk and use his left arm and hand. I read healing scriptures to him, and listen to healing cd's. The stroke has effected his not only his body, but also his perception, and his short term memory. He is also hallucinating and thinks things have happened at times and they didn't. I do have to say however that in spite of all of this, I have seen, that if my words that I speak agree with what God has said, regardless of what I am seeing or not seeing in my husband, there is a change that takes place within me. Strength, peace,faith all seem to start rising up on the inside of me once again. I have to make moment by moment, hour by hour, day by day on purpose choices. Our bodies can break down from depression, fear, anxiety, lack of sleep, etc. I'm sure many have experienced this to some degree or another. I don't know where many are in their walk with the Lord, but I hope it is okay if I pray; Father God, my prayer for Braida, and all here is that we let You, strengthen us and fill us with Your peace and give us Your supernatural grace in each of our lives. Jesus You said that your yolk is easy and your burden is light. Show us how to give you our burdens day by day so they won't be so heavy. Help Braida and all of us to know that we don't have to be scared of what lies ahead of us as we put our trust in You.You also said Lord that Your strength is made perfect in our weakness. I know we have alot of that Lord, so let us feel Your strength. Give us understanding and download into us Your powerful love so we see it not only touch our lives, but those around us also. I know it is Your will for our bodies to be whole and healed Lord, so I ask You to help us believe this powerful truth. Help us to let You fill us with Your Holy Spirit who teaches us all truth. Lord, I know you understand all of our thoughts and I thank you that when they are far from perfect, You still love us. Thank-you Father for all of these people here on this site, and their love and compassion You have equipped them with for the time they each have with those in their lives. I ask this and thank you Father in the name of Jesus Christ, Your Son.
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Braida, It is so important to take good care of yourself and to give yourself some "me" time, even if you pay a caregiver to cover for you. I know for me I am living off Social Security and this is an expensive break for me causing more stress because it is so expensive. Perhaps your church might provide a person to give you a break. I am going to my first caregiver's AZ group support meeting tomorrow. It is time for me to do that. I am allowed to take Bill along so I won't have to leave him alone. Yes don't let yourself go downhill. I am having the same problem and having a knee arthroscopy next week. I do have to be physically capable of taking care of Bill. I am going to request the AZ helpers to come in for me rather than Bill. She can watch over both of us but she will be able to do a load of wash, or make Bill a sandwich. He can't do anything for himself. And since he doesn't understand a lot of what I say, he can't follow directions either. I am most worried that I will be unable to get around and not be able to do the basic stuff, that needs to be done, like feed the dogs, and make him a cup of coffee and a breakfast! I try to be as patient as possible with him and I rarely ever argue. If he is wrong or spills something or breaks something, I just skip over it and try not to cause any waves. It is just not worth upsetting him. I have also heard that when an Az patient asks you a specific question, you just say they're coming later, or they were already here. It seems to satisfy them and they forget about the question. In other words, pacify ad time will take care of the problem. Or if they are seeing people, chase the people away with a broom. It sometimes satisfies their fear! Hope I have helped you. I have a lot to learn.
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Hi everyone,
My heart is in the same place. I love my Mom but watching her go from the vibrant, intelligent, loving life woman to how she is now is so heartbreaking. We talk about the same few things everyday. Her mind just seems stuck. Her perceptions are really off — she will just say the most off the wall stuff, and it is just increasing. At times I am angry that I have to be the one to witness this on a daily basis and then I feel it is a privilege to take care of my dear Mom these last few years. Ambivalent feelings I live with on a daily basis. I just have to always remember that it is not her fault but oh do I miss my lively, intelligent, life loving Mother....
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I honestly feel for you. Alzheimers is not a disease that any of us want to have, and yet, someone is going to have to deal with it. My parents had a friend who was diagnosed with Alzheimers when he was in his early 60's. His wife kept him home for as long as she could. Then she put him in a nursing home, but that option was draining her bank account. She was trying to work and care for him....but she came up with another solution. She bought a mobile home for him and then hired "around-the-clock" care in his last couple of years. He had the disease for ten years. No, she did not live in the mobile home with him. She visited with him as often as she could. No one faulted her for that choice. She did what she had to do to keep her sanity. In his last years, he didn't know her or us, he stopped talking, walking, or eating. It was so sad. Alzheimers is a living hell on earth for everyone. Stay strong and find the best solution for your situation. Until someone has walked in your shoes, they do not know the toll this disease takes on a caregiver. Hugs to you.
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Braida you are in the same boat as I was with my mom. Same here..we were the best of friends. I was her favorite..I was the one there for her. Took care of mom for 10 years...and the last 6 months she lived at home with me and my family. It was so hard because when she came home with me...she knew us. She was so grateful for what we did for her. Then a month later..it was so different. She became someone I didn't recognize. It was like she was her in physical form but not in spirit. Her mood changed, she was like living with jekyll and hyde. She wouldn't sleep at night...up all night long. I was so close to a nervous breakdown. With no sleep and the constant battering with her. Not wanting to have me help her. She didn't think she had any problems even though she couldn't walk, make it to the bathroom, or even sleep any consecutive hours. She was very combative. I finally googled and researched. I learned a lot from a lady by the name of Teepa Snow. She gave me insite on what was actually happening to my mom's brain. There is a disconnect so to speak. I encourage you to check out Teepa Snows videos. It's been 2 months now since i lost mom. It was the hardest journey I have ever encountered. But I am so glad I was with her down to the end...she deserved it. I love and miss her so much...but she is now at peace and I am too.
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Yes, Chirochick and Wamname, I just read your posts. Sometimes I just go through old threads to re-read and get more insight and strength. Your posts were thought provoking, both of you dealing w/ different levels of dementia and different relationships. Mine is w/ my Mom, like Chirochick. Mom and I were best friends too. I love her dearly, and as she was always there for me, I am now here for her. She's going downhill, fairly steadily it seems over the past several months. I have to wonder if it's partly because she lost her dear sis who she was very close to, right before Christmas. Or maybe it was just going to happen regardless. I, like Wamname, fear what is coming down the road. Mom is still walking, dressing herself, eating, and talking....however all of these things are becoming noticeably less functional. She is more unsteady walking, she has trouble putting her clothes on properly sometimes, she can't button and zip things often, she is even having trouble putting on gloves...getting the fingers in the right spots. Lately I notice things seem to go down the wrong pipe, so to speak, when she's eating. I'm worried she's beginning to forget how to swallow properly. She is seeing people often, asking me where all the visitors went. She talks of her sister leaving us, and being forced to "walk into the water" by people taking care of her, and asks why that happened. It doesn't matter how many times I gently explain that it didn't happen that way, and that we were with her sister when she died, Mom insists that she was made to walk into the water, and it upsets her. So many things have changed just recently. I am sad about what's happening every day. I try to go on, take the good moments and cherish them, and attempt to make things as nice as I can for her, and not argue about things that she says or thinks that are totally unreasonable. I think, "Who knows what she is seeing, or who from her past (sister, Mother, etc) who are making visits in her mind. Perhaps calling her to be with them? Who knows" She talks about a group of girs who come regularly to her place (she has her own quarters in our home) and sit with her and talk. I tell her they're her guardian angels, and I can't see them. They're just for her. Wow. It's a challenge, and I'm a little bit frightened. And I feel so depressed a lot of the time. It's hard to get out of my slump, even though I always put on a happy face for my dear Mom. What a journey this is. My Mom still teaches me, too, Chirochick. She is amazingly strong emotionally, although getting frail physically, I see, each day. I keep wondering how long will it last. That's the scary and weird component of this disease. How long? And what will it be like as it worsens? And the unkown is unsettling. I keep telling myself I MUST be strong, but my health seems to be going downhill as well, and I'm thinking it could be depression that is causing symptoms of fatigue and pain. :(( I just can't allow myself to go down, as I think I must see my Mom through her journey to the end. Bless you all. And wishes for your health, and sanity as well.
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Dear chirochick, Yes I feel the same! And my husband is still pretty good! I hate seeing him this way. He seems normal to the average person, but you only need talk for a few minutes and you will see how he knows nothing anymore. He can't remember colors, sizes, shapes, names for things. So it is useless totry to describe anything to him. I have to show him or do it myself. He doesn't remember the difference between recycle and trash so the trash gets mixed up as he insists on doing this chore. I am surprised that he remembers where it is in the garage. He does like to walk the dogs and he doesn't get lost yet. I bought a great id Bracelet with all necessary info and he refuses to wear it. Or if he does put it on, he covers it with scotch tape. Why, I don't know. He wants to have sex but doesn't remember how to do it. That part really upsets me because it is so intimate with your loved one. And it's gone! I too wish he would just go in his sleep some evening and then I feel guilty because I still have him and I still love him with all my heart. He means the world to me. I still love the part of him that he used to be. And I know that the end is far away because he is strong, and healthy except for the AZ. It is such a never-ending sweet and sad dilemma for me.
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chirochick, your post really touched me. so many of us know just how you feel. i love your last thought and deeply relate to it: our loved ones are teaching us patience, compassion and humility. so, so true.
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I do sympathasize with you AZ. My mom has steadily declined for the last eight years..but this last year has been really tough. We were best friends..in the past..she was so independent and so enjoyed her grandchildren..always being silly, active and loved to be with family. SHe is just a shell of somebody I used to know..and I cry all the time..especially when she no longer even knows I am her daughter. I try to make her laugh..and I try to be silly when times get really hard..because she does smile..and I know, right now, she is happy in that moment..and that is all I can do. She no longer retains any information for longer than 30 seconds..its hard to even digest that this is her..sometimes I get soooo frustrated because her lust for life is just gone..she doesnt want to get out of bed..then when she does..and I sit her down she closes her eyes..or constantly sleeps..sometimes I just wish she would pass peacefully in her sleep...(and that really bothers me that I think that way)..but when I see her existance it is just pitiful..I hate that she is this way but not much I can do about it but accept it and make her time her the best I can. Makes me sry just typing this but u r not alone..make the best of what u can...I keep telling myself that even after all these years my mom is still teaching me....teaching me patience, compassion and humility. God Bless You and best of luck!
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Very good idea that of the diary! Very good. I can identify in my wife most of the stages. Now I believe will register everything.
Good luck for all
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What you are mourning is the loss of who they were and no longer are. Alzheimer and dementia are the nightmares of the aging process and longevity. Hopefully research will stop the ravages of these diseases and the elderly can live productively until they pass peacefully. Peace be with you.
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My immediately previous post was intended for another thread on how to deal with dimentia sufferers who hear people in the walls - I don't know how it was appended to this one. Please ignore it.
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Sometimes it is useful to explore our own feelings about a behavior in order to remove our squeemishness, disapproval, discomfort, etc., in order to focus on the problem more effectively, and for the right reasons. I would encourage such disclosure, as it motivates the respondents to think of those impendiments while using engaging their insight.
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I know just how you feel. My husband is in the same situation as your relative. I feel guilty sometimes because I wish it were all over with. I know neither of us did anything to be put in this position but it happened anyway so the only thing to do is bear it.
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I totally get what you are saying...when my journey with mom started, I had no idea what it entailed. After a couple months had past, I decided to keep a journal. Mostly for my own sanity and to help me keep track of my moms progression. After she passed away, I was so glad I did so....for the sake of my siblings whom could not be here for moms last months, plus it really gave me something to reflect on. Mom went downhill so fast it seemed like such a blur, I have been able to go back and see what helped her, and through this be able help others who might be experiencing the same situations. Mom left me a legacy of love. The journey we took together was a testimony of that love. God bless the caregivers!
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I guess I should have started this as a new question. Sorry if it is out of place here. But if it's okay, then I guess maybe there will be some responses. Some times many thoughts just come flooding in and the submit button is hit before I should have hit it.Anyways, hope to see what others may think about it. thanks.
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I hope that if my husband is not with me much longer, that I can be a witness to others of what he was all about. There is sometimes so much about our loved ones we want to keep alive and share it with others. It's kind of like keeping their legacy known so other people will be inspired to not quit, or to really take the time and help others and know that this life is not about ourselves, rather it is about helping those around us no matter how difficult it may seem. I guess I am just trying to get prepared for what may be ahead, and know my husband's life has been such a fullfilled one. I don't want to see his dreams just fade away. Just thinking about it makes me tear up.
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The comment of Eddie, is very interesting, I firmly believe that thee is "other side" from where we can be watched, and even sometimes guided.
At thevery minimum, is a way of observing ourselfs, as if we were there
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As I watched my father unravel from prostate cancer, I conditioned myself to believe I'd eventually see him on "the other side." That helped relieve some of the grief.

I talk about it openly now, and sometimes even my adult sons -- whenever I say or do something "off the wall" -- tell me that Dad is watching me. I know he is.
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I don´t think I can add anything better than was written... hugs for all and lets pray together. No matte how or to whom... let us be together inour disgrace... we will have to survive for thebetter of our dear ones
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AZ, I know where this is going. First, let me say that I have been through many terribly challenging family situations throughout my life while working ridiculous hours, and then quit work and spent 20+ hours a day taking care of my Mother for three years. As strong as I was, I came as close to disintegrating as I ever want to. As my own physical health suffered, my usually strong sense of self withered to shreds, and my finances bottomed out, my mother's condition took a downturn because I did not have the strength to surmount her resistance any longer. After 20+ hours of struggle per day I was done, and had no more energy to put into keeping her spirits up which was heavy lifting, indeed, as she was a depressed person all of her life. Her response was to lose interest in life (if she couldn't actively destroy me as her main sport?), cease taking food and fluids, and wanted to sleep her way to death. This at least got her a trip to the emergency room where the help started. If you are disintegrating now, don't wait around for the crisis point. You don't have to do that to yourself. My brother kept saying to me that "Mom is going to live to your last ounce of blood." And so it would have been. She is in Assisted Living now, and doing much better. I am still the walking dead, with loads of family business cleanup to do, but moving along with the help of this forum. Don't wait. Your mental health is telling you something! Listen to it.
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I am in that same place. Watching my husband lose a little each day is just awful! You have to look at each day as today, not what could have been, but as this is what it is! Although I grieve a little each day I cannot dwell on what could have been. I am fearful to look ahead because I know what it will be and I can't stand to think about Bill getting to that part of Alzheimer's. Bill is still physically strong, but doesn't talk much anymore. I do know that he still loves me and I have to hang onto that! I just have to live for today and ask God to help me accept that!
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I asked my cousin the same question while i was experiencing the same depth of grief that you have expressed. Her response gave me a new perspective. She pointed out that even at this stage, though Mom doesn't recognize me , I could still hug her, hold her hand, see her face, give her a smile and a kiss on her cheek, babble on about a memory or funny family story? She is still here with me unlike her parents who are both deceased.
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Dear AZ, You are not crazy, and I am so sorry you are going through this with your mom right now. Those are normal thoughts and feelings you are going through. I think sometimes the same thing with my husband whose mind was terribly efected in the massive stroke just this past Nov. I find myself asking so many questions, and even praying for him to go and be with the Lord. Then, I hear myself saying, "just heal him Lord, you can do it. nothing is too hard for you." Sometimes I don't even know how to think. One day I can't stand the thought of losing him, and then I see him in a place where he's not suffering anymore. One thing I have tried to do is to find just anything funny he did or said , no matter how small it might be, and embrace it. That is the joy we hold onto that gets us through the rest of the day and even into the long nights. My husband of 18 yrs. and the love of my life is not who I remember or have even seen before, and it is one of the most heart wrenching ordeals I have ever had to face. So, we embrace their smiles, their little quirks, and their new personalities. knowing it's not forever, and with God's grace, we will get through it. Grab those special moments AZ with her. I loss my mom last jan.29th 2012 and she was the most special woman in my life. My heart goes out to you, and i will be praying for God to help you get through this time. ysic, southernyankee
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AZ, that book from peter Rabins was like another Bible for me Everyone is different when it comes to our own emotions so their is no right or wrong way. It is very hard to watch a family member slowly decline with such a devastating illness. I hope the book that Jeanne suggested help give you some peace.
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Corinne, you're having to re-invent yourself, besides mourn your lost husband. Every day your thoughts and actions centered around caring for him, going to see him, etc., so now your days lack that structure and focus. An aunt once voiced that sentiment to me after her husband had died after a long illness. You're obviously a giving person, so maybe volunteering somewhere would help you find yourself again.
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Reading MANY books on ALZ helped me to understand the disease, my role, etc. I believe that you must go through the constant mourning, as you are, but you should also be able to move on eventually. With Mom, adopting the attitude "it is what it is" has helped me. I've seen other caregivers with this attitude - you do what you can and most certainly provide the best care you can, but accept the disease, in general. I've stopped questioning the "why" and just DO what I have to do, repeating all the while, "It is what it is." Dad died of Alz. 14 yrs. ago but it took me several years before I could revel in his pre-dementia memories. Good luck.
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I'm sorry for your loss, msdaizy. I know how hard it is to witness the downhill struggle of when your loved one becomes someone else. My MIL mutters the most nonsense things right now, and usually we humor her. We figure, what's the point of arguing with someone who doesn't get it anyway. For the most part, she is still her sweet self most of the time, but there are days when she is really rude and definitely isn't thankful for the help we give her at all, but I know she doesn't understand why we have to change her or bother her with things that she'd rather not deal with. It sure doesn't make it any easier though.Thank you for sharing your thoughts and struggles with us. I know how hard it must have been for you. (((((Hugs)))) going out to you and your family too. God bless.
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