I am very frustrated this evening. DW is so selfish, and does not care about me, it is all about her. I really could walk away this evening. She does not even know what sacrifices I have made for her, she is so self centered. I really just want out.
Difficult for me to type but saw this and compelled to answer. Alz=regression to child developmental stages. Your wife and so many of our spouses in "me" stage. All about them. Can't change their brain.
moorsb---I know this is no consolation, but caring and appreciation are learned behaviors. Infants don't know them and are all about themselves. Children are taught from very early times to express signs of love, caring and appreciation. This a huge area that the Dementias rob them and us of. This is another reason it is so important to take care of ourselves. Not just getting help in to ease the work load and/or give us a little down time, though that helps. We need to treat ourselves to special outings, special foods, or special things--just for us. NO GUILT ALLOWED. Finding ways to make those things happen can be challenging, but they are vital. I never can recite the old oriental philosophy correctly, but know the meaning by heart. The man with only 6 coins to his name spends 2 for food, 2 for shelter,and the remainng 2 for hyacinths for his soul. Get some rest, and then get yourself some hyacinths.
Moorsb.....I feel your frustration. Your DW most likely isn't selfish but self-centered as you state just like a little child. No she doesn't realize the sacrifices you have made, she can't think like an adult anymore. Your last sentence says it all--you are tired and want out. If only it were that easy. She is dependent on you completely, helpless really. This disease swallows us and spits us back out so we are hardly recognizable. 56 years of beautiful memories and dh and I can't talk about them. They have to stay with me alone. Sometimes he talks to me as if I am just a visitor in this house. Strange.
carosi, you are amazing! I just read the post about your impending “train wreck”, but here you take the time to write encouraging words to another one of us. You are a caring, giving lady & I want you to know that I (we) appreciate the fact that you are here for us, just as we are here for you! ((hugs)) 2 U!
moorsb, I understand how you feel. Right now my DH is sleeping in the chair across from me & he has actually been pretty docile lately, but just when I think he has mellowed he goes into paranoid mode & accuses me of all sorts of ridiculous things. It is such an emotional rollercoaster ride & unfortunately I never know when I will be screaming in my mind on the ride down.
moorsb, I feel exactly the same way you do. I don't even know how I am doing this without just walking away. All I know is (1) if I didn't do it, no one else would. (2) Even though I didn't know that this would happen to my DH when I got married to him I did get married to him and out lf loyalty I do not walk. I think right now, I know I am, tired TIRED TIRED. It is not always a physical tired either. I agree with everyone about the fact that our spouses are acting like dhildren in a lot of ways and being self- centered is the name of the game with them. When "they" are hungry "they" cry until we feed them and the same with everything else that "they" need. Our needs are not even seen by them let alone met by them. I don't know how long this is going to last but it isn't a permenant situation. It does have an ending. Of course not the ending that we would like to have but an ending none the less. All I can say is get some rest and try to do something for yourself occasionally because we have to take care of ourselves right now because no one else will. The other thing that I have found works is to not think of myself as his wife but as his caregiver I am not sure why it works but most of the time it does. I guess a stranger can't get their feelings hurt by whatever they do to them like a spouse can. Maybe!?!?!
moorsb i read your blog and can totally relate. My wife is at a stage where she sleeps all night and most of the day. when she does wake up during the day complains until i lay down with her and when i get up says i dont want to be by her. I know most of it is fear of being alone which is a childish fear but it is also hard to hear. We just have to remember they are sick and their fears are real to them. later she will apologize to me for all she puts me thru but truth is we both go thru it so only the illness is to blame. I guess what hurts the most is that with all the sleeping and total lack of eating,drinking and reduction of bathroom use the end is almost in sight so how can you feel when those things get nearer every day and there is no stopping it. and then you feel even more guilty because you not sure you want it prolonged.
Today is our 50th anniversary; I'm the only one who remembers. Mentioned it to hb. I could tell he didn't know what that meant, but he hugged me--maybe at some level he did know.
I also could have waklked out of this h$ll 2006. I stayed for children, grandchildren and financial reasons. This was not the man that brought me coffee to bed every morning and not the man I fell in love with. Now 5 years later I'm so glad I didn't. Over these past years he was able to realize he was dependant on me and expressed the love and gratitude. Of course now he cannot but every now and then says love you and thank you. I see the man I fell in love with but he's like my child. God only knows how much longer I will have him. I fear the end is near. This is the last I can do for the man I love.we go through phases with this damn disease. It is a rollercoaster ride from hell! God bless you Moorsb and all of us. Nellie
Yes, Happy Anniversary, Zibby. To address the original post--maybe this is the time you should start considering placement. If your feelings of wanting out are so strong (and they are understandable), perhaps you have reached the point where you should act on it.
Bob, I’m so sorry this wicked disease is doing this to your wife, and to you.
It sounds like it is time to adjust your expectations. Coping with AD is a test of adaptation. You’ve made it this far, so you’ve done well adapting.
Each time we realize something else is gone we adjust.
When we discover our spouse is throwing away bills and checks, we adjust. We race to the mail box; we establish rules – NO THROWING AWAY MAIL EVER. If we have to, we get a PO Box. When we discover our spouse cannot safely drive, we insist on always driving; we establish rules – NO DRIVING EVER. If we have to, we get the state involved to yank the license.
This is another adjustment, but it is more difficult because it is all emotional. You have discovered your wife (through no fault of her own) cannot appreciate or fill your needs. It is more than the expression, “This is not the person I married.” She is a person that is so self-centered, no one would ever have married her, or even befriended her. So now you have to adjust. You have to recognize your marriage is spiritually dead, and bury it. You need to establish a rule – NEVER TAKE ANYTHING SHE SAYS OR DOES PERSONALLY. And if you have to, you need to place her where she can get the care she deserves.
Please try to remember it is not her fault; she did nothing to deserve this. Even the self-centered woman she has become deserves to be loved.
Also remember, this is not your fault; you did nothing to deserve this. Don’t let the emotional pain of this disease kill you, too.
Going back to what moorsb posted my hubby has been in a care home for some time and I do visit most days ,he is really nasty to me at times with things he says so I thought Id try a new approach.After such a session I said to him I still love you ,he said I know you do!! in a nasty tone .I said well it would be nice if you said you loved me too ,but no reply .I know its the disease talking but it still hurts.All he is interested in is what I take him to eat etc ((((hugs everyone )))
I think we all feel at some time we can't do this any longer and want out.Do not feel ashamed Moorsb. We are all in the same boat,slowly sinking. I am fortunate in that my DH tells me every night he loves me and gives me a goodnight kiss, he didn't always do that. we are married 55 yrs. next week a long,long time. He has a 30 sec. memory right now but knows how long we've been married.Must seem like it's been long to him too.He does get his belligerent moments. I try to shrug them off,but it does hurt when they say hurtful things,but they really don't know they are hurting you.you have to stand tall and let it go. the only way we can survive.
Hmmm I guess anyone thats been invovled with this hideous disease has similar stories such as moorsd,I know for a long time I was accused of stealing money from LO,then the people that were always coming into the house(noone came into the house)were stealing money clothes what have you,I even had LO call police an tried to have me removed from the home,its a terrible road we all travel,some do it gracefully,some regretfully,but we all must travel it,the one thing I've come away with after a few years is and this is a must,take care of ourselves,if you don't it will suck the life out of you just as its doing to your LO,my thoughts an prayers are with each an every one of you that are the sole caretakers,its a thankless job an as stated before the one your taking care of has no idea what your going thru,but sooner or later you'll probably have to place LO if not for their safety then for you own health an when that day comes do it without the guilt,knowing that you did the best you could for as long as you could
HAPPY GOLDEN DAY! Make some happy memories, even if they are just for you. We celebrated our 34th yesterday and it was a nice day, weather was great, we plan a meal out this week after all the graduated high school, junior colleges and Cal Poly families scoot..the weather is fine so the beaches and everywhere are packed! And Father's day is next weekend..so the mid week we are celebrating both!
When a two year old tells us they hate us because we didn't give them icecream when they didn't eat dinner - we don't wrestle with our inner souls that our own children hate us and agonize about it all. We know they are two years old and we are in charge looking out for their best interests because they can't. It may hurt that day or we may be fed up with their eating habits that day - but we do not harbour hurt and resentment and if they do we smile at them. We're doing our job.
When our spouse is diagnosed with terminal cancer we feel a lot of what all of us are feeling with AD - except the terminal part is clear to us and we can talk to them and the timeframe is usually so much less that no one is confused about anything. It's a fatal tragedy that has hit all of us and we have to try and bear up that we have only a short time left.
But when AD hits our spouse which will turn them into a backward 2 year old before it kills them and take that in pieces over years - then something different happens to everyone around them.
It moves just as unseen as cancer does but because it takes away pieces of the mind randomly our expectations are not those of the cancer spouse.
What Carol said to me many months ago was that you have to get to the end in your mind and see that reality and understand it. There is a nature in the experience of AD though which makes that difficult for spouses. That nature is that we do not have the clarity of understanding which we would if it were cancer - even if that cancer took just as long to finally take them.
I am a brother and sister in this fellowship and no one has to explain to me what this does to us. It just is one of the hardest things in life to endure. We have every right to get fed up, get beaten up, exhausted, and hurt by specific things and this forum is exactly the right place to try to get some of that out.
This isn't directed at Bob either. This is commonplace.
If my wife had cancer I would expect her to have trouble dealing with it. I would expect various tantrums and emotional collapses. I'm not dying - she is. And she would have the right to have very difficult days which would mean very difficult days for me.
My expectations of my wife are zero or about the equivelant of a very backward two year old. Who can judge what exactly a spouse can do on any given day or even where they are trying hard but can't hold the fork? My wife wife suddenly pleaded "I want to" in a pitiful way when I got frustrated that she just couldn't get her hand to hold the fork. She was trying hard. It sure didn't look like it.
Much of the pain I read on this forum is this very thing. We know what is happening and what is going to happen but we do not accept it. No. Because if we did fully accept the truth as we would with cancer - we wouldn't be hurt by the specific events to the point of making our spouse take responsibility for their behaviour. We wouldn't be able to charge them with not acting like they used to or like adults responsible for their actions.
I expect my wife to start pooping in her pants. I expect her not to be able to do stairs. I expect to put her in a home. And I expect her to die. And then to be alone.
Because I get up every morning knowing that - I still have my tantrums and my exhausted crises but I cannot be hurt by her behaviour because Dianne no longer paying attention to me, or talking the way she did, or doing her chores, or any other thing is a sign of where she is in the disease - not a new and personal shock.
It has to be a much harder road to accept this process piecemeal and remain vulnerable. The rubber hits the road in the analogy I'm using when I say that if our spouse had cancer and we reacted this way along the road then it would be much clearer to us that we are not accepting what is happening - and that that fact is making the entire experience much harder for us.
I am speaking to a unique group of people. I never offer my respect sight unseen - but the fact of being here is proof of both the desire to cope and thereby do better and proof of the fact that there is good character in all here - whatever else we may be in additon to that.
So many times I have not written what has seemed clear to me. That the specific pain the person is feeling is because they do not yet in their heart accept fully the reality of the disease. Saying that to people in those moments isn't necessarily being helpful because we all come through this in our own way.
But keeping quiet while superficially supportive isn't that great either. It's not about sucking it up. We're already doing that no matter how much we complain and make no mistake - there is no better judge of character than watching what people do under fire. And as I've already said everyone here passes that test. I handle this ugly at times. But I handle it. I pass that test too.
The reason I'm losing lifelong friends as we speak is that I have accepted that I am helping my wife die from Alzheimer's disease and that every day I do not become the poop queen is one small blessing in this hardship. Her friends have not. They react to every predictable change with horror and pain and fight me hard when I talk about the realities of what is to come. It's me that's initiating the end of these terribly important relationships. Their reluctance to come to the truth is too stressful for me. I have work to do and this isn't helping.
So I have written her eulogy. And I have let our love and our marriage lie down and retire. The last chapters are where I am a hero in that through great hardship and hopelessness I do not abandon this person. And I do not charge her with responsibility when she says she hates me or ignores me completely. I blame the truth. She has AD and no one knows what they can or can't do on any given day now or in the future.
My having to do all the chores is true of every single person. And I am transforming more into a single person with every month. Taking that on has nothing to do with her anymore. It's basic to living. Alzheimer's HAS happened to us and so will being single.
Accepting that has started making me talking to people more. I chat people up now. I've been getting gift baskets from a local food speciality store of delicious frozen entrees paid for by my SIL in CA. I've been chatting up Jennifer there and this week took the conversation all over the place finding out she grew up not far from where my wife and I did in Toronto. Suddenly she says she really wants to meet me. When I ask why she answers that you pick up things from people's voice and I suddenly realize I've been having way too much fun. It's very painful to be reminded how much I love pulling in a female's attention because I'm so lonely I could choke.
But none of this is confusing anymore. I get it. Not yet. But my god did that show me what I'm going to do whatever I prattle on about. I'm going to have some female friends and find one's I like. When we go out there and are genuine we meet people. If we want solitude that's easy. Whatever we do there are some truths here that I feel strongly enough are important to write all this.
Dealing with this isn't the same as accepting it just as going to church doesn't make you spiritual anymore than standing in a garage makes you a car.
Dealing with this is coming to accept that we have a new life. Nevermind whether we want it or not - we have it. Take care of our spouse as best we can; but, that isn't going to last. What is going to last until our dying breath is our life. Fighting that is useless. We are single-in-waiting or we have our *.
So what do I hope for? That each and every one of you can find ways to start unlocking the blocks and the obstacles and rekindle some of that spirit we might have had in highschool where anything might happen and we dare to try something.
After all, it's exactly the same world it was back then. Stuff has changed but it's the same place. And it's the same time too. It's always the same time. It's now. Over to me bubba.
Wolf, my head & neck hurt from nodding up & down so much while reading your posts. It is so true! I KNOW what is happening, but I’m not 100% on board. I said this in a previous post, my brain has accepted this, but my heart hasn’t. You write the truth!
Wolf, you said it all wonderfully. I need to have my head knocked every once in awhile when I forget. It's the disease; I say to myself, "I can't take any more." But, I do, and I do, and I do. And I will. I'll hoe my row to the end as I distance myself emotionally from difficult situations--I hope.
wolf your posts have said pretty much everything every one of us are feeling on any given day. but after 50 years of marriage (a lifetime) it is hard to imagine having someone else to say goodnight to every night. and what is left of me after 70 years of living and a love lost to AD i am not sure what is left that is useful to anyone else. I know GOD has something planned for everyone of us but I am just sure if I can meet HIS expectations. GOD give me strength.
Wolf, are you a professional writer? If you aren't you should be. I am so glad that we have you here to organize in writing what we are either thinking or going through or not thinking or not going through. I wish I was that articulat(sp) I do feel like I am single-in-waiting and whether I hate it or not doesn't matter it is going to happen. So I might as well get use to it.