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The last week or 2 have been different. More confused, toileting problems, not sleeping at night, acting more tired. Still has sense of humor but talking with staff caring today I was told my loving spouse told her "I would rather just die than be like this". Where have I been, I love him so much, visit him daily and take him on outings when possible. He tells me to take care of myself and he loves me very much. My heart is breaking, can't do anything for him but love him and pray...which I do, but it seems he is worsening in spite of love and prayers. I am not that ignorant, I have read many articles about this wicked disease but at the same time I am caving in. He has been in assisted living 7 months and physically I have recuperated, getting needed rest and outings etc...but these recent changes have hit me like a brick. I knew what the future holds but when it is displayed more I get so sad, restless, what more can I do attitude, can't seem to accept things. I thought I was getting ahold of things these last few months but now am wondering if I have a hold on anything after all. Reality is getting closer I feel and I am at a loss how to accept it. What is wrong with me? I have faith, I do, but how can I accept what is happening?

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I have been so touched by ALL of the comments I received. They did so very much to comfort me, I will lean on these posts as we go along. All of these posts have come from the heart of those who are also walking this journey. The comments between posters are touching and compassionate and this displays to me the bonds we all feel. Thank you so much for your support, hugs, care you have all shown me. I do go to a support group twice a month and the contact there is a real comfort. This site offers help anytime reality gets too hard which comes unannounced at times. Thank you, love each of you and together we will get through this. Certain comments from each of you linger with me and I will turn to them as the days go by. I agree the best book I have read also is Loving Someone With Dementia by Pauline Boss. I think I will go to my Kindle where I stored it and re-read it.
I will pray for each one of you and give you hugs across the internet (just as valuable as for real). I believe this website is one of the ways God shows his love "with skin on" for us. Praise Him!
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LuvRlabs,
Hugs, many hugs.
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As far as it concerns you, be at peace with all people.
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Isthisreal, God has helped me too, a lot. I wasn't putting down God or anyone who believes in God. I was just speaking from personal experience. I don't know why you are sounding so defensive. Yes, you are right. I can't go and hug Luv. I guess what I was suggesting is she seek human contact. To not isolate herself.

God works through his children. He isn't going to come down and hug us personally until the Rapture right? We as Christians should do more than just say I'll pray for you to people who we know who are suffering, is all I meant. It's amazed me all through my life how cold some Christians can be and before anyone gets on their high horse I'm not talking about anyone on here. I went for grief counseling when my Mom died and the Pastor who led the session was not comforting at all. When I decided to stop going I didn't even get a phone call. So much for caring.

So Luv, once again I apologize that others on here have made this about me and what I said. I just hope the people in your life pray for you but also come by and offer to help or just keep you company as you go through your trial. And yes, once again I offer my prayers and cyber hugs.

If anyone else wishes to discuss what I meant, do it privately and leave this thread for Luv to get some comfort which I believe is what she was asking for.
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Since this is a web connect and we can not actually go give LUV a physical hug or be a real presence, Gershun what would you recommend?

I have walked minute by minute clinging to The Lord and praying without ceasing and have made it through some pretty rotten trials, as a believer I would very much love to be able to wrap my physical arms around many posters here, but barring the ability to do that, I pray The Lord will, I have felt his arms around me and I have heard His still small voice. From luvs post, so has she, she is in a valley and needs encouragement.
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Not to get into a big religious debate here smeshque cause this is Luv's thread and I don't want to detract from her concerns, but Christians are the salt of the earth correct? God wants his children to comfort one another too. Yes, of course I will pray for everybody but the human hand of kindness is valuable too.
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The reason people say I will pray for you, is because that is the greatest thing a person can do for another.It is the greatest help one can give, is a prayer to the Almighty. It is not to put people off.
But, God is absolutely in control. And the prayer of a righteous man availeth much.
People who say that are not dismissing pain or grief or sadness, people who say that knows that it works, first hand.
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Luv, the book I found most helpful in caring for my husband through his 10-year journey with Lewy Body Dementia is "Loving Someone Who Has Dementia" by psychotherapist Pauline Boss. She has a concept called "Ambiguous Loss." Our loved ones ars still here physically but may not be "present." Loss occurs not all at once at the end, but little by little. We are in mourning, but we aren't getting condolence cards or floral arrangements or hot dishes and pound cake. Usually our friends don't recognize our grief. They are not heartless but this idea of ambiguous grief is just not on their radar. So we are not only in anticipatory mourning, we are often lonely.

I think it would an extremely unusual person who could take all of dementia's losses in stride. Grief and mourning are absolutely normal. They do not last forever, but they do throughout the dementia journey, and, of course, after the death. It is not a sign you are inadequate. It is a sign you care deeply.
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Wouldn't it be really nice if when we cried out to God that he did actually answer, I mean verbally? Sometimes all the platitudes in the world don't make a difference. If you are anything like me...........which I hope for your sake you are not. Cause sometimes to be honest, I get really tired of people's answer always being "ask God, or God will take all your troubles away" If I had any criticism of my Mom who I loved dearly it would be that. Whenever I came to her with worries and concerns, what I really wanted more than anything was for her to just take me her arms and rock me like I was a child, not say "I'll pray for you" Sorry, this is just me being very honest! I love God and believe in God with all my heart but sometimes I need a human response from someone who loves me deeply.

So Luv, I wish that for you. That you can find some comforting person to just wrap their arms around you and comfort you cause I think sometimes when you are feeling all alone and scared of the future that's what helps. In the meantime, all I can offer you is a cyber hug. ((((((Hug)))))
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Wouldn't it almost be better if something was wrong with you, something you could identify, put your finger on, fix it, change it? That would be easier than facing the decline of your loved one.
Your feelings are normal for the circumstances you are facing. There doesn't have to be something wrong with you.
People here care. We care about you, and what is happening to you.

Keep putting one foot in front of the other, daily. Keep posting.
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What isthisreallyreal said.
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Oh Luv,
I can't imagine a spouse, someone who I have loved as a soul partner, having this terrible disease. (My mother is the one afflicted with Alzheimer's.) It must tear your heart out to watch the progression of the disease and loose the person you married, bit by bit.

We pray "hard enough" or love "deep enough"...but yet this damn disease just keeps advancing.

The worst part for me (like you), was when my mom knew something was mentally wrong but couldn't do anything about it. That just breaks your heart. They know they're mentally sick and they don't want to be a burden. I've often said I'd be happier when she was just a happily confused little old lady. She's sort of at that point now but getting to that point was horrible-you feel so helpless.

I'm not sure if I'll cry when my 95 year old mother (end stage 6 Alzheimer's) dies because I've been grieving for a few years already. Maybe I'll cry from relief because this horendous journey will be over for both of us.

I don't understand the reason for this disease and why it has to mentally, physically and financially ruin relationships and family.

I plan on asking the Good Lord when I get there. Maybe it won't matter then.

Bless you both as your journey continues.
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It is so much of a roller coaster. Give yourself a break and a treat. Some days it just hurts more than others. Yesterday I was reading a thread on alzconnected.org about Alzheimer's being a fatal disease. Even though i know it is, it really hit me hard. Today I'm doing better. And join our group on alzconnected. It's really a great group of dementia spouses.
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One minute at a time. There is no way to truly prepare for the loss of a loved one. We only think we can and when faced with the reality of it we see how unprepared we are. Continue to pray and lean on Jesus, this is when He will carry you.

May God grant you strength, peace and mercy to walk through this journey, holding you tight under His wing.
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Luv,

There is nothing wrong with you at all. You are facing the end of a relationship. You do not want life to be like this.

Are you seeing a counsellor or talking to your minster or priest? They can help you to accept where things are now and help you prepare for what comes next.

Can you talk with your husband about his funeral wishes? Sometimes we feel that it is going to hasten the end if we talk about it, but it can make the remaining time more meaningful, if you can plan together. Choose the music, discuss flowers, what does he want in his obit? Let him have some control so he can live until the end, instead of dying for a long time.

You know he is well cared for . Take an afternoon for yourself and take up a hobby again, meet a friend for tea, go for a drive, have a walk in the sun. Remember to live. When you come to visit him, tell him about the things you are doing. Bring a craft, book, movie review to share with him. Start to set up a new routine that you can continue once he is gone.

I know divorce is not the same as death, but when my husband left after 22 years, I was shattered, I did not see it coming and I had a breakdown. Three things got me through that time, exercise, I went for early morning walks every single day, Counselling, in the first year I saw 4 different counsellors to help me cope, two were private pay and two were community services, lastly, I joined a quilting group in the next city. It was a 50 minutes drive to the meetings and I did not know a soul there. It was one of the best things I did for myself. I did not have people asking me about (and me reliving) the hell that was my divorce, I learned new skills, and I had something that was just for me. After years of being a wife and mother, I had nothing in my life that did not benefit the family and was just for me.
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