R.Everit55

Ailee, I'm so very sorry. My wife's ALS was altogether misdiagnosed at Yale... A top facility in the country. First it was her diabetes... Severe neuropathy, then her heart, then Parkinson's, then MS, and then finally a late stage ALS diagnosis. This past October. Her Drs believe she had it for a couple years, but she threw all of herself... Physically mentally and emotionally into caring for her brother who passed in May 2013 and then his young wife, our SIL, who passed in Sept 2013. Her Drs believed that throwing herself into caring for them overshadowed the diagnosis of ALS sooner. I was angry at this misdiagnosis. But I just couldn't be. I had to focus all my love devotion care and time to the little time that remained. And so I did just that. I am also very upset at relatives opinions and comments that are very unsolicited. I pray you find some peace in your heart that your Bob is no longer suffering. Just as my Mary is no longer suffering. Butch

Oh Mary, I'm so sorry for how you lost your Mike. I'm so sorry that it's been five years. I pray that you having time today to look at photos and remember good, happy memories, will somehow comfort your hurting heart. He will always be with you, beside you, and in you. Hugs Butch

Harry, your words are so eloquent. I am very new to this horrible grief... 3 1/2 days since losing my wife of 26yrs this April. I read all your words. I will have to re read them numerous times. Right now, comprehending anything much is horribly trying. Thank you for writing this. Butch.

Wow this song speaks my heart after losing my darling Friday night. Ailee, I'm sorry for your loss. Butch

QueenieMary.... all my thoughts and prayers to you for comfort today. Hugs ❤️

Wow, 187 pages in the thread. It's apparent you all have created an amazing bond around the warm fire you've built. I don't know how or when I will fit in. Reading 187 pages to catch up is impossible right now. This journey is just beginning for me. I will just add thoughts and positive energy to you all. Butch

I know how very much my wife loved me. I will never ever forget what her eyes said to me the minutes before her passing. And the days and weeks before, when ALS stole her voice and her breathing. I didn't need a voice to hear what was in her heart. I just looked into her eyes. I saw her heart and her soul. I heard every single word. I'm not saying I don't miss her voice. I have missed her sweet tender loving soft spoken voice for weeks. Not just in these 3 1/2 days since she went to Heaven. I have a feeling one day far far from today, I indeed will miss her voice. Eventually it may fade from my ears but never my memory. If that makes any sense. My darling girl, college sweetheart, the mother of our only child, our amazing son, who in turn gave us two amazing grandsons... What more could a man ask for? I know God didn't give her this cruel disease. God only gave her the will to battle it. God gave us sweet memories even though the disease continuously stole her body and imprisoned her mind and heart. Her mind and heart never was effected. It was there until the very end. I could never ever have asked for a more loving devoted courageous lady to be my wife, my heart, my soul, my other half, my world, my love. She was it. She will always be it. No, I can't hold her physically anymore. And that breaks my heart. ?. I can't even think about that much. But I have our boy. And I have his two boys... Our grandsons. What more can a man ask for. I received the most precious gift when I was given my wife. And I knew it the very day we met. Our son is just like his mommy. They were best friends. I see my wife in our grandsons. I don't know what the future holds now. It's only been 3 1/2 days since my princess became a Heavenly Angel. But she was indeed my earthly angel. I will forever carry our earthly journey in my heart. I will forever carry our love inside my heart. Therefore, I will forever carry her in my heart. What better place right? And no sweeter gift. I'm sure tears will come that will feel like they won't ever stop. But right this moment, the only tears I have are grateful ones because I had the honor in life of having an amazing wife. And our bond was ever so sweet, tender, yet stronger than death itself. She will forever shine brighter than anything in my world ever could... ❤️❤️ Butch

Oh my goodness! So many typos on my part. Just a prime example of utter exhaustion. Sorry! Good night. ❤️

Thank you Fae, I'm haven't really cried, my Our son has a lot, even though he's a grown man and father of two little boys. I let him cry. He misses his Mommy so much. I trust everyone here, that my own tears and feelings will come in time. Thank you for your support.

Thanks Kay.

Thank you all. I feel less horrible for asking them to leave. But for myself, my son, and my grandsons... It was what's best. It's three days since my sweet darling passed. Three days and it just feels like a lifetime. It certainly doesn't seem real. I expect to see her when I walk into the room and I expect to tend to her and then I realize she is just gone. I don't like this feeling of stoicism. Like I have no feelings. How can I have no feelings when my whole world, my life, my heart has gone away. If this is indeed a "protection" mechanism, I just don't want it. I want to feel. She was my everything. Yet I don't feel anything? How disrespectful to my wife. I don't know. It's a few mins last midnight. I suppose I will just go try to lay down and just try not to question how things should or shouldn't be right now.

Thank you friends. So much. I'm quite humbled. ❤️ I managed to fall asleep for not even two hours. Woke with a jolt of anxiety immediately thinking why am I sleeping when my wife needs me. Then immediately realizing she is no longer here. It's not yet been even 48hrs. Why does it seem like weeks have passed? Why does it not at all feel real. I also woke to her parents (adoptive parents who raised her) ridiculing me, judging me, and down right blaming me. Their take is that "I let her" throw herself into caring for Shannon after Leo passed. Had I not "let her" do this then her health would have held up and her body would have won this ALS battle. I asked them to please leave. Not before informing them that ALS is not something to be won or survived. And Not before informing them that never in our marriage did I ever "let her" do anything she had her heart and soul set upon. I never stood in her way. She made decisions and I could never nor would never get in her way. I apologized to them for their grief and for the loss of their daughter. However, I refuse to apologize for never standing in my wife's way. I told them I feel guilty enough for many reasons, but I cannot have others throw more guilt my way. Perhaps I shouldn't have asked them to leave. But for mine and my son's hearts and sanity... I asked them to please go. Not out of disrespect. I quite respect them for caring for and loving my wife. I then sat a while. And proceeded to talk to my brothers and parents and asked that they go home as well. I need this time right now for myself, our son, and our grandsons. Now do I feel badly for making these decisions... Yes indeed. However, I need time and space. I am angry. Not at anyone in particular. Just at this disease that stole my lovey from me, my son, and grandsons. Of all things, I am just angry. :-(

I am wishing you ladies better health and healing. Kay, I forgot to tell you our niece, Leo's daughter, had emergency gull bladder surgery 6 days ago. She was in the hospital 4 days. She is home now. She may not think about returning to work for 6 weeks. Sadly, she couldn't be with all of us as Mary passed. She will come down when her healing takes place further. Praying for rest, peace, and healing for all who are struggling. Butch ❤️

Kay, apparently you were replying here at the same time I was sending you a message. Thank you. Right now, sleep escapes me. Family members are sleeping. My Son is awake with me and Little Man. Right now, he and the dog are having the worst time. Little Man is so unsettled and very jumpy and whiny. He and Mary were inseparable and each other's hearts. And our Son is so effected by the loss of his a mommy. Yes he's 26 and still called Mary "mommy". He is worried for his boys too. I told him the boys are more resilient and forgiving than I think we adults are. They were shielded from the harsh realities of what this cruel angry disease was. They just knew their Grammy was sick and going to Heaven. Myself, I'm not really much of anything specifically. Just here. Awake. Numb. I feel like I'm the only one awake in this world and I'm the only one really feeling nothing. I've never lost someone so dear. Yes Ziggy, Leo, and Shannon were close to me. But she was my heart, my beloved, my reason, my world, my everything. Yet I feel NOTHING. Going to try to lay down at least. And try to settle the pup.

Thank you Kay for posting on my behalf. You are are a dear heart. ALL of you here are dear hearts. I thank you for your words of support and solace. I honestly am in shock. I feel very dazed, unsettled, yet humbled, and gracious. Gracious for all of you. Humbled by my last moments with my love last night. I know she knew that she was going to join the Heavenly Angels. I saw something I never saw in her eyes. I knew I couldn't leave her side. And I knew and felt that she wanted me beside her. That look in her eyes looking at me told me everything. I was talking to her the hour prior to her passing. Obviously she couldn't talk back. But she didn't have to. Her heart spoke to mine. I saw in her eyes that she was so beyond exhausted. I told her I feel her exhaustion and all I want her to do is listen to me. Close her eyes and listen. She refused to close them. But after a few minutes, she closed them. I had her hand tight in mine. I told her it was ok if she was too tired to stay. I told her I would love her beyond measure anyway. She did open her eyes and looked at me a final time and I wiped her tears away. It was the hardest thing I've ever had to do in my lifetime to hold back my own tears right then. She closed her eyes for the last time. I said rest now my love. I had her hand in mine. I placed my hand on her heart with my other. And I just gently laid my head with hers'. I laid this way with her for about 45 mins and she slept. I didn't say a word. I just soaked in laying right beside her. Then the moment came when the heart monitor sounded..... And I asked hospice staff to just silence it please. I didn't move though. I kissed her head. I asked our son to come and say his goodbyes... Which he had already done in his own way earlier in the night. Hospice has been so incredibly heartfelt and considerate in their actions. They made phone calls. They unhooked her from everything. They said to take all the time needed to say a final farewell. And so I did. My son did. I feel a little selfish because my family was there and some of hers. But I only wanted myself and our son to be near her. Before her body was taken away, everyone said their goodbye. Call me selfish. And I don't know why I had to have it that way. No one holds it against me. However, I still feel horrible. She went so peacefully. She didn't fight it. I honestly feel like she in a way chose to let go. Sadly, it was grueling for me to not insist on extraordinary measures. Because during other crisis times, I insisted and it was done. But I didn't even move. I guess because I saw in her eyes how very tired she was. ALS stole everything from her... Her movement, her eating, her breathing/talking. But one thing this angry disease could never steal was our bond our love and our silent "words", communication, and understanding. That's how I knew 24hrs ago that she was going to pass. I have never hated anything nor anyone. I hate what this unfair disease did and stole from my wife and our family. Our two grandsons woke this morning and our Son had to tell them that Grammy is in Heaven now. They cried. At age 9 and 6, it's kind of a hard age for grasping it all. But they grasped it I believe more than I thought they would. There are many things to do in future days. But I am so grateful for Hospice as they are doing much of the arranging. I could never thank them enough. I had more to say but it's kind of fleeting at the moment. My mind and heart are just numb and in shock. Trying to grasp this, even though I knew it was happening, I couldn't have asked for a more peaceful time with my beautiful sweet and precious soulmate as she left this world. Again, I thank you from the bottom of my heart and I thank you on Mary's behalf. I know how much she felt for you all. And I feel the reciprocation. So thank you all for your love, support, understanding, graciousness, etc... ❤️ I'm realizing just this second that this post is in loss of spouse section. Just another moment to grasp. Butch

The time is near. The time when it was decided by my wife and myself when enough is enough. The time when everything has shut down and it's only her mind imprisoned in her failed body. I know her decisions and I must follow through with them. How do I do that? Her mind is still here. But she does not want to be kept alive with a machine 100% breathing for her. And that is where we are. Her own breathing function is not more than 5-10%. It's getting to be that time where if the ventilator was to be shut off, her own minimal breathing would not sustain life for her for more than a few minutes. She knows what's happening. And she knows her wishes. And she is trusting me to follow through. And I will. But not quite yet. There are goodbyes that need to be said. She so adamant about not letting her linger. But for me, it's like I'm killing her if the machine is removed. Because her mind is not gone. She knows . She is imprisoned. But once her breathing is totally at 0%, she won't last long. But she doesn't want to just linger like that until she passes. This is all heartbreakingly conflicting.

Thank u Kay, Fae, Marty, Anne, Carrie so much for your kindness, thoughts, prayers, and love. No change. I am about to lay next to my lovely wife and close my eyes. I can't really bear not being beside her. Goodnight. ❤️ Butch

Thank you. I'm sorry I haven't updated in a week. We are at a very critical time here. She has no breathing functions of her own at all. The ventilator is doing it all at 100%. This is the point when I'm supposed to make a very difficult decision. And I cant. Not yet. She is still waking some. Until that happens no longer, I will not let her go. Multiple hospice folks are here. Our son and DIL are here. Even our grandsons are here. Her adoptive parents are here... The ones that raised her. My family are here as well. She is being kept comfortable. Even though her body muscles have ALL been taken away from this cruel ALS disease, she is having tremendous pain. But that is part of the utter cruelty in all this. I am now praying only for peace. We all are. But the little she does wake, she knows who we all are. I will not make the horrible decision yet like this. I realize nothing is reversible. It's 3:42am. Rest isn't something that is happening for me right now.

Anne, Kay, Fae, Marty.... Thank you for your messages of love to Mary. I WILL read all your words to her when she is more awake. She's having a painful day. Her muscle relaxants were increased as well as her pain med. So she has been in bed mostly sleeping. I have her relaxing music playing quietly near her to help comfort her. My anxiety is a bit higher on days like this. However, I am going to go try to get some sleep while she continues to sleep. She will be looking for me when she does awaken more. Much love, twinkles, thoughts, prayers, and hugs are returned to you from us both. ❤️

I have a message that Mary typed on her text device for her friends here. I told her I have kept in touch with you. It took her an hour just to type this very short message. Her right arm is weakening and her hand shakes. But she can type with it. It exhausts her for sure. "Please tell everyone on the grief group thank you. I remember so many loving hearts. I dont want to say names I don't want to hurt people's feelings and have them left out. I am sorry I have failed so many kind hearts who were there for me and my family through so much. I'm ok and I have a remarkable hubby. I Am the lucky one." She couldn't type anymore. I told her she hasn't failed anyone whatsoever and I doubt anyone here even remotely believes that. Of course she had tears falling. She will not settled in bed right now until she knows I shared her message here with you all. Oh, and she is not the lucky one. I AM for she is my entire heart. ❤️ Love to you all. Butch

My love is declining so much quicker than we ever imagined. She now has been placed with a Trach because her muscles and diaphragm are becoming more quickly paralyzed. So she had a tracheotomy so that a breathing tube be place and a machine is aiding in her breathing. She also received a tremendously generous gift. A fully covered paid for motorized wheelchair that she can sit up in with the help of bands on the trunk of her body so she doesn't fall forward. Her right arm and hand are still very mobile. The chair came equipped with a text to voice computer. She can type words slowly and the computer talks for her... Whatever she types. And my employer and employees gifted this to us fully paid for. I'm in awe. Im incredibly great full. And Mary has lit up smiling because she can be more mobile and even though it takes her a long time to type just a sentence... It's her way of communicating. While I will never hear my wife's beautiful voice again I know how she feels. The breathing issue is very discouraging because we know we are closer to the end. When everything will shut down completely. We had some joyous times today with our son and grandsons. Hospice is here 24/7. It's all so scary and it breaks my heart to see my love declining. And know her mind is fully there but she's "trapped" in her body by this cruel disease that is ALS. I hope you all had a blessed holiday. I just wanted to update. God bless. Butch.

The last 24 hours have been exhausting. My love suffered a pulmonary embolism yesterday afternoon. The hospice nurse suspected immediately what it was when her bp crashed, her respirations went way up to nearly 90, she turned bluish pale and ashy and had cold sweats. The ambulance arrived quickly and she was in the ER so fast. She has been on medication to dissolve, hopefully fully, the large blood clot and she is on constant heparin and will remain on a constant drip of it even once back home. It was very scary but I thank God for Hospice. And quick action. This is something that easily could have very quickly killed her. She's doing better and will be back home tomorrow. Our son is with her this evening. I am trying to take "me time" for I'm exhausted. I've got our grandsons with me for a little bit. We ordered pizza and are going to play the Wii and have some fun "male bonding". My little men are getting so big. . Anne, I always mention this group to Mary because she indeed remembers you. You and Kay especially for your caring emails. Marty and Fae as well and the entire forum as a whole. I don't remember everyone's names. But just mentioning the forum to her, and she smiles and looks at me with very lit up eyes. Thank you all for caring. ❤️

Yes it's definitely not generalized anxiety disorder. I've never had depression or anxiety in my life. This is the response to fear. I am ok taking the lexapro but I won't feel effects for a week or two. And Monday I will start Xanax for the anxiety. They want me to wait to fully recover from the allergy to klonopin. My sweetness seems to be more comfortable now with the muscle relaxants and pain med. But her breathing is requiring more oxygen. This isn't a great sign. We know once her respirations start failing, that it is close to the end. But we also know she could remain as she is for several weeks and not go into further respiratory distress. She is sleeping comfortably. My sleeping beauty. And I am going to try to get some ZZZZ's while she is. As of right now, hospice is here round the clock. Goodnight. God bless. Prayers for all.

So I just spent five hours in the ER. Apparently I am allergic to Klonopin. I couldn't breathe and got hives. I'm home now. I will have to try another anxiety med but in a few days after I calm down from reaction to Klonopin. Mary had to have her Oxygen increased earlier this evening. Not the best sign. Anyway, Goodnight.

Marty, thank you for the links and resources. I will look at the second resource you left when I have more time. I've read the first one multiple times already. I relate to the feeling of Humpty Dumpty and all the Kings men not being able to put me back together again. Kay, my boss has me on extended family leave. I do want to go back when the time is right. I just can't right now. Not with Mary so ill. And the quick decline she is in. And that will most likely be after this horrific disease claims her earthly life. Thankfully I still have medical insurance. I have been able... Until very recently... To do work from home on the computer. But I simply cannot continue that right now. My boss is one of the most generous and understanding people I've met. He's got my back (and our back). Mary is having a painful day. So things are very trying. I saw a dr today and he started me on two medications. Lexapro and Klonopin. To help with anxiety and depression. Will keep in touch as I can. Butch