OUR JOURNEY – May 2016

Barry nears death, May 2016

Yesterday when the nurse and I got Barry out of bed to adjust his twisted sheets, I was stunned to see how thin and weak he has become. The panicky look on his face as we tried to keep him standing broke my heart. The skinny pants I bought for him from Target hung off his hips, showing most of his diaper. I didn’t recognize the belt he was wearing. It must be from the care center’s lost and found — maybe once worn by a very thin woman who has since died. His own old belts don’t cinch small enough for him now. For more than two years, Barry has been stuck in the same bed, staring at the TV and a wall of pictures. He eats just enough to stay alive. And there is nothing I can do for him– not a damn thing.
forest
I am writing this post on a rainy spring day. The trees and grass are turning beautiful shades of green and all the lilacs are in bloom. The forest I like to hike in is bursting with new life. As I laid in bed this morning listening to the rain, I thought about how sad it is that Barry can’t enjoy any of it this. Summer will soon be here, as will trips up north and hot sunny days. Barry can’t go up north, he can’t feel the warm sun on his body. All he can do is lie there, kicking his feet back and forth, back and forth, day after day after day.

Sometimes when I visit, his deep blue eyes meet mine and stare unblinking at me. What is he trying to tell me? He can’t talk. He can’t say, “I love you.” And he can’t say, “Get me out of my misery please! Please don’t let me live this way!” I doubt he is trying to say, “I am having a great day!” I wonder if he understands what is going on. Does he know that his life has been within these four walls for more than two years? This FTD journey has been tough, but I can honestly say that now is the worst of it all. This long wait for death is almost too much to bear.

Do I do want Barry to die? Yes, I really do, but I’m not sure if it is to make my life easier or if I’m really thinking of him. Would I love to stop going to the care center every day? Hell yes! Would I love to move on to a new life and maybe even meet someone to have fun with? Yes! I have to admit I would. All these thoughts enter my mind as I carefully consider my feelings. I want to be sure that I’m not being selfish.
bed
Above all, I want Barry’s misery to stop. It is so unfair that a human has to live this way. Why can’t we have the right to die? We treat sick dogs better than humans in most of America. I always tell my kids that if I get sick like their dad, please take me out to the back forty and shoot me. They always say, “Oh Mom, we really couldn’t do that.” Well, they really couldn’t because we don’t have a back forty and we don’t have a gun. Plus, I would not put that burden on them.

I have only shot a gun twice in my life and both times it kicked back so hard that I landed on the ground. So don’t worry, I won’t be bringing a gun into the care center. I will just wait, hold Barry’s hand, look into his eyes and tell him that I really do understand. All we can do is wait. Wishing your husband dead has nothing to do with being selfish – it’s all about love.

Time to let go, Barry!

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59 comments on “OUR JOURNEY – May 2016
  1. Jordan Taylor says:

    Nancy I can only imagine what your are going through. As I am reading this I am on my way to visit my father-in-law in The nursing home he is in hospice care, your words describe it to tee. My father-in-law is barely maintaining 100lbs. We are talking days to weeks and you are talking years. Thank you for your gift of words and continued strength and compassion on your journey. Next time I see you at Surly and I am too awestruck to say hello I would like to buy you a beer.

  2. Jordan Taylor says:

    Nancy I can only imagine what your are going through. As I am reading this I am on my way to visit my father-in-law in The nursing home he is in hospice care, your words describe it to tee. My father-in-law is barely maintaining 100lbs. We are talking days to weeks and you are talking years. Thank you for your gift of words and continued strength and compassion on your journey. Next time I see you at Surly and I am too awestruck to say hello I would like to buy you a beer.

  3. I agree so wholeheartedly with what you say. No one should have to endure this misery of a life says:

    Dear Nancy,
    What you write brings tears to my eyes. I agree so wholeheartedly with what you say. No one should have to endure this misery of a life

  4. Carol Kellogg says:

    Oh Nancy I know how hard it is to have a Love one not being able to die. My mom is in a facility for 3 years she can’t walk she is going through a phase being very angry and scared I don’t know if this is the end. I go there alot letting her know that it is OK. I also wish that she would die to end her suffering. I’m thinking of you Nancy your posts help me go thru this.

  5. Oh, Nancy! My heart breaks for you both. I trust that your honesty is helping others dealing with situations that no one should have to face. Sending prayers.

  6. Dear Nancy
    I have, as you know, walked that path. The last part is the most painful. Seemingly without end, although we know it has one, it make you feel so helpless and alone. I had to make myself believe that Alan was not aware of the proximity of the end. Thankfully, he lost the ability to swallow and nine days later it was all over. I was glad. For although they don’t know about the timeline, I think they know that there is a change. I think they know somehow that it’s over. Just not consciously aware of events and chronicity. My heart goes out to you. It seems so cruel that spring is here and life is blooming in every corner but not yours and Barry’s, nor others like us. You will be in my thoughts and I wish only peace for you both x

    • Anne G. Lewis says:

      Dear Nancy. I would just like to hug you and say yes, it is okay to wish for his agony to end. I, and most of us at our age, have been through a similar situation with our parents, although I would think it is much harder with a spouse.
      With kind thoughts,

      Anne Gillespie LEWIS

  7. Rita Wigfield says:

    Nancy, I recently went through this with my mom. Sitting with her every day (sharing visits with my sister) for 3 years, we found great comfort in reading Scripture, singing to her and reminiscing even if it was a one sided conversation. Jeremiah 29:11 – God knows our coming and our going. His faithfulness is new every morning. Praying for you.

  8. Karen says:

    I am so so sorry. I agree; we wouldn’t let our pets suffer ….

  9. Kris Sandoz says:

    Dear Nancy, this is definitely the very hardest, most painful part. We don’t often get to choose the when part of life ending. I went through this with my beloved Grandma a few years ago and it made me realize that it is a gift when we get to go the way we would want to. I’m so sorry you’re having to go through this and I’m praying for this part to go quickly. Big hugs to you!

  10. Leslie says:

    My heart hurts for both of you. I am extremely sorry. This is not fair.

  11. Annie says:

    Nancy-
    My baby sister has this crapoy disease too- and I feel the same way. Thank you for sharing your thoughts- I will keep you and your family in my prayers.

  12. one breath at a time

  13. Christine bekiares says:

    So sad for both of you.

  14. patty tritch says:

    Oh Nancy, my thoughts and prayers are with you both. It is so hard to do this. He knows your love. Patty

  15. Peg Helminski says:

    Your thoughts are so well stated and so full of very raw emotion. I’m so sorry you’re going through this, Nancy. Big HUGS!

  16. Linda says:

    I so deeply admire your honesty, and willingness to share your journey. Thank you. Wishing you both, all, the very best as this journey continues.

  17. Linda says:

    I so deeply admire your honesty, and willingness to share your journey. Thank you. Wishing you both, all, the very best as this journey continues.

  18. Sally says:

    I’m thinking of you and Barry, even though I never met Barry, I feel I know him a little bit, because of all your writing, this blog, you have brought him into our lives. This is all so unfair, and sad. Thank you for speaking for Barry and for many others Nancy.

  19. Sally says:

    I’m thinking of you and Barry, even though I never met Barry, I feel I know him a little bit, because of all your writing, this blog, you have brought him into our lives. This is all so unfair, and sad. Thank you for speaking for Barry and for many others Nancy.

  20. Heidi Nye says:

    My great aunt passed away two weeks ago. She decided to stop her kidney dialysis and say her goodbyes to our family. While it was extremely difficult to say goodbye, it hurt me even more that we don’t allow the death with dignity law in all of the U.S. states. She had to let nature run it’s course and take her that way. While she was not in pain, every human being should be allowed the choice if they are medically not going to improve. Hang in there.

  21. Kathy Klis says:

    This is love, not being selfish. Look deep into Barry’s eyes and you will feel his words of love to you Nancy, a beautiful woman in his life. A woman who we all look up too. Thank you for showing us how to be strong even when you don’t want to be.

  22. Kathy Klis says:

    This is love, not being selfish. Look deep into Barry’s eyes and you will feel his words of love to you Nancy, a beautiful woman in his life. A woman who we all look up too. Thank you for showing us how to be strong even when you don’t want to be.

  23. Deanna Werner says:

    Dear Nancy,
    You give hope which seems weird but just knowing others who are on this same FTD path helps me not feel so alone – I know that blank look you mentioned and it breaks my heart each time I see on the face of my mom who’s eyes had always had so much expression. Expressions of happiness or sadness or those looks only a mom can give her children – where they know exactly what she is saying and yet never utters a word. Now, there is nothing. Stay strong and know you are not alone in this journey.

  24. Susan Nelson says:

    I feel that our journey in life is full of unplanned changes. We don’t understand.
    I can only pray for us all.
    May God bless you in your struggle.
    Sue

  25. Norma Sewell says:

    Tomorrow marks the two year anniversary when my husband’s bvFTD journey came to an end. I so can relate to the emotions you are dealing with. It is devastating and utterly exhausting to watch the love of your life lose any semblance of a fulfilling, enjoyable life and then die inch by inch. You hope and pray they don’t realize how bad things are. Then comes the phase where you have to learn how to deal with all that your husband lost, and consequently what you as a couple lost and your family lost. I check on your blog fairly often, as it gives me some strength. I am sorry it is time for the message of this blog. Nancy, after Barry passes and you start the next phase of your life I hope you will be able to continue your blog. There are many of us in the same space and I think we all could benefit from your gift of expression. Hopefully blogging will help you, too. I have found it to be helpful.

    Peace to you and your family.

  26. Susan Anderson says:

    I read once, Nancy, that we need to give our loved ones permission to let go. That they fight on not wanting to disappoint us. I think I read this years ago when my mother was dying. Don’t know if this will help you or not. My heart goes out to you, Barry, and your family. Grace and peace to you.

  27. Su Marotz says:

    I understand – this was my DAd’s FTD journey – it takes a full measure of strength and then some. I will pray for strength and peace for you Nancy – and rest for Barry. Platitudes defy meaning at a time like this – be gentle with yourself.

  28. Deb Rankin-Moore says:

    Dear Barry,
    I can’t fathom what your existence is like. I can’t call what you are enduring as a life. My heart aches for your freedom.

    To your family and friends: peace, strength, love. My heart aches for what you are witnessing, mourning and will never forget. Try though you might.

    Peace. Strength. Love. Always.

  29. Mary Heitzman says:

    So honest and well said. Wishing you rest and peace.

  30. Kathy Smith says:

    My heart goes out to you and your family as you go through the long goodby. It is so hard to watch as your loved one disappears. I experienced this with both of my parents and inlaws. Never feel selfish in your thoughts. It is hard. It’s not fair. Remember the good times and the love you shared.

  31. Karolyn Lee says:

    My heart goes out to you, Nancy. Just know there are many of us keeping you in our prayers nightly. You are a very special lady doing a very difficult job. You have truly been a strong influence for a lot of us. We love you and hold you!

  32. Martha Sandberg says:

    Nancy- I pray for peaceful hearts for both of you.

  33. Wendy Hitch says:

    Amen.

  34. Bette Ashcroft says:

    Godspeed, Barry

  35. Tim Moodie says:

    I have to go somewhere and cry now. You are handling this with such dignity, grace, and love, it is the best example for all of us. May God take mercy on Barry and put him out of his misery. You are not selfish, you act out of unconditional love.

  36. I am so so sorry for you as you go through this hardest time with Barry. And there is nothing I can do either. I can only pray, and I do. You are so brave and handling all this with more grace than you realize, I am sure. Be well!

  37. D Ringham says:

    Do not feel alone in all the conflict of emotions. I was told at hospice care for my mother-in-law that sometimes the person who is slowing slipping away really needs to be told, that it is okay to go. It may be a coincidence, but I told her that. This 93 year old woman who counseled her entire family and many others through SCORE was mumbling… I told her, I know you are trying to tell us one more thing that we all need to know. But, it’s okay, we will all be okay. We will all miss you terribly everyday! But we’ll be okay because of all your wonderful advice, and we will help each other. Strange that she quietly passed less then an hour later…

  38. Carol Premack says:

    Thank you for writing this. I know that “just waiting” is difficult. There are many of us thinking of you and Barry.

  39. phil ford says:

    I’m so sorry for you both (all). I’ll always remember Barry as warm and talented and good natured. Can’t really ask for more than that.

    I hope today’s Barry can let go soon, so you can let YOUR Barry be your memory.

  40. Judy Rogers says:

    That was so incredibly beautiful! Prayers for you all, Judy

  41. Judy Rogers says:

    That was so incredibly beautiful! Prayers for you all, Judy

  42. Nancy Paxson says:

    Blessings to you both this day!!!

  43. Judy Peterson says:

    Life can seem so unfair. We have so many awesome doctors, miracles happen everyday yet they certainly do not have all of the answers. Thank you for your honesty and openness. As I read other’s comments I realize how powerful your influence has been for so many. I pray that you will all find peace… It must be time for another walk in the woods!

  44. Pam schultz says:

    Think of you every morning when I see your doodle post. I hope and pray that peace comes quickly for both of you.

  45. Chris Hanson says:

    Thinking of you and your family with love.

  46. Sandy W says:

    Tell him you all will be okay. Peace to you and your family.

  47. Nancy Paxson says:

    The end of this era will be a Godsend to you both! You have been so generous and loving!

  48. Mary Boelter Lienke says:

    This is a tough life for you….my heart goes out to you. You have endured so much pain with financial loss, and Barry loss….so sad.
    My Mom had dementia for 12 years and was in a nursing home for 6 of those years. It was always painful to see her as she crept deeper and deeper into her memory loss….I so wanted her to die because I knew this was not a life she wanted. But now that she is gone – I miss her terribly!
    My thoughts and prayers are with you, Nancy. Keep up that stiff lip determination it has done you well!! Mary Sue

  49. Mary Boelter Lienke says:

    This is a tough life for you….my heart goes out to you. You have endured so much pain with financial loss, and Barry loss….so sad.
    My Mom had dementia for 12 years and was in a nursing home for 6 of those years. It was always painful to see her as she crept deeper and deeper into her memory loss….I so wanted her to die because I knew this was not a life she wanted. But now that she is gone – I miss her terribly!
    My thoughts and prayers are with you, Nancy. Keep up that stiff lip determination it has done you well!! Mary Sue

  50. Aimee Bissonette says:

    Not selfish at all Nancy, not at all. Thinking of you.

  51. Judy Miller (The Switchboard) says:

    Nancy, I don’t have the words to express my feelings right now. I have not seen Barry for many years but he always had a smile and was very gracious — what my Mother would call a mentsch.

    My thoughts and prayers are with you. Be well and be brave. Judy

  52. Pam knutson says:

    xoxooxo Nancy. Please know I have a freezer full of soup and scones waiting for you whenever you need them. Really! Happy to deliver.xoxo Pam

  53. Coreen Blau says:

    Dear Nancy, This too shall pass. I can only say that I hope and pray this pain & suffering will soon be over. You have maintained strength and dignity for both of you throughout. I’ve been reading the posts and only one mentions a husband. All the others are parents or an in-law. One would think an elderly person’s struggle is more expected, not a husband. Bless you, please let me know how I can help.

  54. David LaRochelle says:

    I hope this struggle will be over for both of you soon, Nancy. It does not seem fair for either you or Barry. My heart aches for you.

  55. Helga & Greg says:

    Dear Nancy,

    Our thoughts and prayers are with you and Barry.

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