R.Everit55 Posted December 26, 2014 Report Share Posted December 26, 2014 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. Link to comment Share on other sites More sharing options...
LadyCarrie Posted December 26, 2014 Report Share Posted December 26, 2014 My heart is hurting for you and for your wife. I know others on this forum know you, and I'm sure some of them will be talking with you soon. I'm new, but I've read some of your posts. I just want you to know that I care, and that I will pray for you. Carrie Link to comment Share on other sites More sharing options...
feralfae Posted December 26, 2014 Report Share Posted December 26, 2014 Dear Butch,I am so sorry that the progression of the ALS is faster than anyone thought it would be. I know how precious the time you can spend with her is now. Bless you for taking the time to let us know how everyone is doing.How wonderful to have the motorized wheelchair and a way for Mary to communicate. And I'm glad you had some good moments today with your son and grandsons. I know the love you all have for each other was flowing through all your hearts.I am also glad that Hospice is there 24/7, and hope that you are able to get more rest now.We are here for you. I am sending loving prayers for peace and comfort, and please tell Mary that I am also sending her a lot of *<fairy dust>* with more love in it.Blessings, dear Butch. Please give Mary a hug for me.fae Link to comment Share on other sites More sharing options...
enna Posted December 26, 2014 Report Share Posted December 26, 2014 Thank you for coming and updating us on your Mary. What a wonderful gift to have received from the people you work with ~ I can see the sparkle in Mary's eyes. You know we carry you in our hearts during this most difficult time. Remember to say our names to Mary and let her know that we hold both of you close. Love, Anne Link to comment Share on other sites More sharing options...
MartyT Posted December 26, 2014 Report Share Posted December 26, 2014 We're all sending blessings, loving thoughts and prayers to you and your beloved, dear Butch, and to the rest of your precious family too. ♥ Link to comment Share on other sites More sharing options...
kayc Posted December 26, 2014 Report Share Posted December 26, 2014 I have tears in my eyes as I write this...how precious of your employer and coworkers! I am so glad they did this, any independence and communication she is afforded is a precious gift. I know your heart is heavy as you see the end nearing. Try to stay in the present and enjoy each moment as a gift...I know that's hard to do, especially as you see the losses along the way. Mary is very loved, she is a precious person. I hope you know you are too and feel everyone's arms around you as you walk this difficult path. I'm glad you had a good day yesterday with your family. Link to comment Share on other sites More sharing options...
R.Everit55 Posted December 30, 2014 Author Report Share Posted December 30, 2014 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 Link to comment Share on other sites More sharing options...
enna Posted December 30, 2014 Report Share Posted December 30, 2014 Oh Butch, thank you for posting this tonight. What a wonderful gift to receive a message right from Mary. You know that we are all holding you close to our hearts, Mary. We are inspired by your determination to do all you are able to do. Butch has kept us updated. I think both of you are inspirations to all of us here. What a great way to start the New Year. Please know that we all pray for you. Love, Anne Link to comment Share on other sites More sharing options...
kayc Posted December 30, 2014 Report Share Posted December 30, 2014 Butch, I hope you will read this to Mary: Mary, You have NOT failed anyone! Our hearts are with you and Butch, you've been through so much in such a short time, you are one of the bravest people I've encountered! I pray for you every day. You are inspiring, even with all you have going on, you count yourself the lucky one! We are lucky to know you. God be close to you, Love, Kay Link to comment Share on other sites More sharing options...
MartyT Posted December 30, 2014 Report Share Posted December 30, 2014 Butch, dear heart, please tell your beloved Mary that, of all the flowers in our garden, she is one of the most beautiful. Give her our love and our blessing, and know that we hold both of you gently in our thoughts and prayers. ♥ Link to comment Share on other sites More sharing options...
feralfae Posted December 30, 2014 Report Share Posted December 30, 2014 Dear Butch,Please give Mary my love and tell her I am sending lots of *<twinkles>* her way, too.I am also sending {{{{{HUGS}}}}} to Mary and you, knowing these precious days are filled with peace and love.*<twinkles>*fae Link to comment Share on other sites More sharing options...
R.Everit55 Posted December 30, 2014 Author Report Share Posted December 30, 2014 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. ❤️ Link to comment Share on other sites More sharing options...
kayc Posted December 31, 2014 Report Share Posted December 31, 2014 I hope you can sleep, I know how it is when you're a caregiver, you have to while you can. Link to comment Share on other sites More sharing options...
feralfae Posted January 5, 2015 Report Share Posted January 5, 2015 Dear Butch,Remembering you and Mary in prayer today.I'm sending peaceful energy and*<twinkles>*fae Link to comment Share on other sites More sharing options...
R.Everit55 Posted January 5, 2015 Author Report Share Posted January 5, 2015 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. Link to comment Share on other sites More sharing options...
enna Posted January 5, 2015 Report Share Posted January 5, 2015 Dear Butch, I am here in prayer for your Mary, you and all of your family. We who are here around our fire lift you up and will be with you during this time. I continue to hold you and Mary close to my heart. Love, Anne Link to comment Share on other sites More sharing options...
kayc Posted January 5, 2015 Report Share Posted January 5, 2015 Butch, This is one of the hardest diseases for the fact that their minds DO still work clearly and they know what is happening. I pray for you and Mary and the family. I pray God will guide you in all you have to go through. I hope those who are rallying around are a strength to you. Link to comment Share on other sites More sharing options...
MartyT Posted January 5, 2015 Report Share Posted January 5, 2015 Our entire circle is joined with you and your precious Mary at this time, dear Butch. We are sending prayers for peace to both of you, and when the time does come, may all the angels in Heaven welcome your darling and see her to her rest. ♥ Link to comment Share on other sites More sharing options...
LadyCarrie Posted January 5, 2015 Report Share Posted January 5, 2015 Butch, I have been reading, but not writing, primarily because I am new, and you are unfamiliar with my name. I just want to tell you that I am praying for you, and have been telling my family about you and Mary. We all care. I join this circle in prayer for you. I can only imagine your great agony of soul. Marty just expressed so eloquently what I feel. May God hold you both (all of you) underneath His protective wing, and grant you the strength and stamina you need. Blessings, Carrie Link to comment Share on other sites More sharing options...
R.Everit55 Posted January 6, 2015 Author Report Share Posted January 6, 2015 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 Link to comment Share on other sites More sharing options...
R.Everit55 Posted January 9, 2015 Author Report Share Posted January 9, 2015 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. Link to comment Share on other sites More sharing options...
MartyT Posted January 9, 2015 Report Share Posted January 9, 2015 Oh Butch, my heart just hurts for you and your beloved. I am so, so sorry. I hope you are surrounded by hospice staff members who can help to support and guide you through these agonizing hours. Please know that we are with you both in spirit, sending all our love and blessings and light . . . Link to comment Share on other sites More sharing options...
enna Posted January 9, 2015 Report Share Posted January 9, 2015 Dear Butch, We are all gathered around our fire here and our hearts are aching with you. You will know when it is time. You will honor your Mary's wishes. Please whisper to Mary that I hold her close and we promise to watch over you. You are not alone. Anne Link to comment Share on other sites More sharing options...
feralfae Posted January 9, 2015 Report Share Posted January 9, 2015 Dear Butch, I am holding you and Mary in my heart and in my prayers. I know the hospice people will help you through this time and be there for Mary and for you. All love and blessings, Light and Peace to you and Mary. fae Link to comment Share on other sites More sharing options...
kayc Posted January 9, 2015 Report Share Posted January 9, 2015 Butch, This surely has to be the hardest decision ever one would have to make. Fortunately you know Mary's wishes so it is not your decision, but hers that you are carrying out. I pray God will give you peace and strength. No need to say goodbye...see you later will do, for you have a better day coming when you'll be together, never to part again. That is what has sustained me in the years since my husband's body left this world. We will be here for you, we will listen and care, when you are ready. Link to comment Share on other sites More sharing options...
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