sigh.... there are so many new * ...... I am so sorry for all of your losses ((hugs))
That is the main reason I have stopped posting. It just breaks my heart over and over each time someone loses their spouses. I have been in such a funk lately. I have tried so hard for so damn long to always look to the positive, to be grateful for what is still left of Lynn.. and frankly I am sick to death of fighting to "hold it together"
My doctor told me I can not go see Lynn every day any more. He says at this rate my family will bury me before Lynn. God, it is just harder than I ever imagined. I thought we were through the toughest parts, the early and mid stages and all that go with them.... the fits of uncontrollable rage, the loss of all we use to be....
I thought now that Lynn was finally in the stage where he was content lost in his own little world and finally at peace, that things would start to get easier..... I thought I had been through the worst and now I could just enjoy whatever time we have left.
But this disease allows for no peace. Lynn is declining at alarming speeds..... He doesn't even know his own name now. HIS OWN NAME! He is entering the stage where he is losing his abilities to do even simple instinctive things...like know how to suck through a straw, swallow his food, and the worst, was when he was sitting on the toilet not knowing how to poop. God, that shocked me!! Even a baby instinctively knows how to do these things!! How cruel, I hate this disease with every fiber of my being!!!!
The doctors explained to me that different parts of Lynn's brain are now in the process of dying. That during those times he will have moments when he forgets even the basic instincts. Today, he knew how to use the straw, tomorrow? who knows? Damn and double damn!!!
Still, I try very hard to remind myself to count my blessings. He is still able to eat, he does still smile and even giggle at the cartoons. He doesn't know my name of course. His words are all jumbled nonsense..... But I will tell you what... every single time he sees me.... he reaches out his arms for a hug, and he always manages to get out "I love you"
Even now, somewhere inside him, there is a part of him Alzheimer’s has yet to steal…. God, give us strength!! Love to you all ♥
Nikki, how good go hear from you. Your last line says it all. God, give us strength. Charlie, like Lynn, can not do many basic things. He tries, but part of his problem is that he does the opposite of what he is trying to do. If I say "stand up" he pushes DOWN with his lower body instead of UP. If I say "lean forward" he pushes back against the wheelchair with all of his strength. He is not trying to be difficult, he is trying to do what is said, he just does it wrong. Same with the straw, sometimes he drinks through and sometimes he blows into it. Unfortunately, he does not speak, so he never says "I love you" with his mouth but he still recognizes me and his eyes light up when he sees me. It isn't much, but it is all I have left of him and I cherish it.
Nikki, please don't let this destroy you. I can't imagine how very, very hard it is for you to see Lynn this way. My heart goes out to you and I pray for strength for you during this terrible time. Bless you both.
Nikki, I am glad you have checked back in with us. You need to stop 'holding it together'. That only builds up inside which will affect your health. If all you want to do is post/vent here then go right ahead. No one says you have to read the post. We can even leave this thread for you only to post/vent and people to reply back in support.
We have been discussing emotional divorce and it seems to me you have not. That is probably why the doctor wants you to stop visiting everyday. As hard as it is, try to take a couple days to pamper yourself. if you don't take care of yourself then you are no good to Lynn.
Nikki, I'm so sorry. It's such a difficult road . . . If you can, please follow your doctor's orders. It's likely Lynn is unaware of how much time passes between visits, and won't know if it's one day or two or three. He just feels happiness when he does see you. You don't have to hold it together here, that's for sure. Let it rip. (((hugs)))
Nikki, I am so sorry for what you are going through. I read your post and I feel like my posts are so trivial and whiny. I hope you can find it in yourself to do what your doctor says and take care of yourself. God Bless, God Bless, God Bless.
Nikki, I`ve missed you, please do what the Dr. says, take care of yourself, this is a good place to be when you are hurt, angry and tired of this terrible journey you are on, you have pulled me from some bad things with your words of wisdom now let us all help you, i know how hard it is not to see your love everyday but I had to only visit Bob three times a week because it was best for me but every time I would go and see him the biggest smile would come across his face and he would say my love your here, best words I could hear , he will be just fine he has lots of people to take care of him when you`r not there, be strong my friend, take care of yourself, you will be a better caregiver for Lynn. Gail
Nikki, please sweetie, take a deep breath. We are all here for you. It sucks, no nice way to put it. This is a cruel disease that WILL take everyone in its path down with it. You MUST step back and take care of you. If you are not well, you cannot care for Lynn or anyone else. I don't want you to end up where I was last October. If I can find a way to go on, so can you. Please know that you are in my prayers. Please feel free to email me . Arms around and around, Susan.
Nikki, dear one, you must look out for your own fragile health. I know your love for Lynn, but he would not want you to put your own health at risk. Please try to rest. Thinking of you with love. ♥
Nikki, we don't know how much longer any of our spouses have.... there are at least five of us whose spouses are getting close now...within 6 months probably....but we've loved each other and hung on together and formed a tight bond.
Sure, we empathize and sympathize as we lose another spouse, but they are in a better place, and we will be in a better place too. Lynne would be upset if he knew you were endangering your health over him and you know it. I know my husband will be in a better place, but I'm not ready to give him up yet. And that is where you are too.
You are fortunate to get the "I love you"s and the hugs......and you are one of the sweetest ladies that I know and I treasure our friendship. You will be strong when you need to be!
Nikki, I know where you are and I have had to step away myself. I was told by my grief therapist that I was able to help anyone right now, that I need to be taking care of myself. My think is I am a fixer and feel broken if I am not even able to send a smile, or a tear or a shoulder. I wish you well and I know what you will be experiencing first hand. I wish you peace.
Nikki--I have also felt that the downside of being here is that eventually, we and all our cyber friends will face the end of our spouses' lives. But the benefits of these boards outweigh the sadness of all the loss, and those whose partners have already passed away show us that we, too, can survive it.
I'm so sorry. I do not pray often, but I will instead hold you and Lynn in my heart and in my thoughts.
You have been very helpful to me without your even knowing so. I have been reading here for around two years; although, I hadn't signed up until only a few weeks ago. I had always followed your posts carefully because your honesty and warmth. And because you and I live in the same area. (For privacy reasons, I can not tell you any more than that because my spouse is in the public eye.)
Good to hear from you Nikki- we all know whats in store for the end game here as do you with your dear lynn. like the others say he probably has lost spacial time so wont know if you come to visit every few days now.his face will still light you even if you dont visit daily. i know and feel your pain too, DH is now basically non mobile, and goes from hospital bed, to chair to couch and it takes two ofus to get him to there. such a miserable disease. like you though we dont want them to linger in final loss. take care of nikki we love to hear from you when you can. hugs. divvi
Nikki, it is good to hear from you. Listen to your doctor. The time has come to start taking better care of yourself. And remember that if you need safe places to vent, this is one of them. Come and talk to us and let it all out.
Glad to 'see' typing from you,Nikki. Lots of wisdom being sent your way. I feel so sad for so many here and so often. At the same time, there is no other 'place' ..where I KNOW those who actually do understand at amost EVERY level. I don't always post..sometimes the sadness overwhelms me. Sometimes I don't feel there is anything wiser or more helpful to add than what has already been shared. BUT always, always so thankful and so glad to see posts from everyone. I hope you can 'let er rip"..take some time knowing that Lynn is in good hands. WELCOME BACKKKK
I understand and even agree with the concept of the emotional divorce. But no, it has not happened for me and in all honesty I doubt it ever will.
I know that people here are the only ones who truly understand! I am not sure what it is about me that makes me withdraw when I know I should and need to talk about the things that keep me awake. It is a flaw of mine and one I will try to keep working on.
Today some of my siblings are going up to see my step mom for mother's day. I love my mom! But I do not want to go. All day long my sister (my twin that lives with me) has been nagging and nagging me that I have to go. As most of you know my dad killed himself 2 years ago, I took it very hard to say the least!! It is very hard for me to go to his house now. This week has been tough on my emotions with Lynn's latest declines, the loss of my dog and this morning the loss of my cockatiel. I could cry at the drop of a hat!
But still, she keeps telling me I should go. Finally I told her I was not going and to please leave me alone. She still said I should, she said that it was hard for everyone to go there now. I agreed that this was true but not everyone was trying to deal with all the other emotions I am trying to. She got mad at me and had the nerve to say everyone is going through something, and then went on to complain about the trivial stuff in her life. OMG, it was all I could do to not slap the crap out of her.
Even my own family just does not understand. I wonder sometimes if they are blind!? How can they not see and comprehend the hell it must be for me? More, why should I even have to explain, why can they not figure it out for there damn selves! How hard is it to try to put yourself in my situation, to imagine it is the love of your life lying in that damn hospital bed… acccck.. It makes me soooo angry!!!
How was that for a vent! Lol ……yes Frank, I think the ice has melted *wink
Nikki, you are awesome! Accepting that others in the "outside" world just don't get it, is so increditbly tough. I'm always amazed at the amount of trivial things that can get others all worked up. All we can do is hang on and support each other. I know I would not have made it this far without all of my loved ones on this site. I'm tossing you the rope, hang on tight. Arms around, S
It is hard to deal with when even our immediate families can't seem to grasp what we are going through. My family offers compassion and support but they don't really GET it. The closest comes with my sister. She used to be a nurse in a Nursing Home and dealt with on a more personal level.
I would settle for some compassion and support!! Oh they get sad, and they feel bad for me.. but don't cry Nikki! Keep it inside and smile for us.....accck!
Is it just me? or is anyone else bewilder about how close you can feel to people you have never met? I feel closer to many of you than I do people I have known all my life!
Nikki, my heart aches for you..not only are you grieving for your dear sweetheart but your family wants you to shield your pain for their sake. I know it is partially because they love you but they also feel very uncomfortable around you and do not want to confront the reality of you and your husband's long and never ceasing battle with such an unthinkable existence. I don't think anyone can truly know the pain and everyday agony of losing our mate while they are alive and being incapable of stopping it. You will get through this but you will be changed by your loss for the rest of your life. We are here for you...
Thank you ((Joyful*)) I do know they love me, but yeah... they just can't handle any of it. Every time I try to talk about something deeper, every time a tear shows up in my eyes, the subject is changed, or they simply look away. It is tragic really, because these are the things that can make families even closer. I have just one person I can talk to honestly, my younger sister, but she lives clear across the country. But even she doesn't truly get it. Just this week she wrote me, "but I just have to say that I can understand people not going and visiting Lynn, I love him to pieces, but I don't think I could see him this way. You love Lynn, and like it or not Nik, you are stronger than most people."
Oh how tired I get of hearing how strong I am. It's really, "How Strong THEY WANT me to be"!!!! I just posted somewhere else that Family Denial Syndrome is at epidemic proportions!