BARRY’S JOURNEY – Pretty sure….

I am pretty sure Barry is dying now…
Birds Barry
I had a care conference about Barry today. He can barely swallow now and weighs only 135 pounds. I tried to feed him lunch earlier and there was major panic in his eyes as he held the food in his cheeks. He was constantly trying to stand up, so after two bites, I brought him back to his room and put on some music to help him relax.

You might think it would be easy to say to the staff: no more food for Barry and no more water. But it’s not that easy. It’s really hard to be the person saying those words. I understand why there are patients with feeding tubes on his floor. I finally understand why one guy spends hours
each day trying to get any morsel of food into his wife as she lingers somewhere between life and death.

No one wants to be the one to pull that imaginary plug that means life or death. In Barry’s case, I have struggled with the sickening thought that maybe I am just thinking of myself. To be perfectly honest, I can’t even imagine the relief I will feel when Barry dies. I am sick and tired of visiting him in the care center. I love all the workers there and they do a great job, but I hate, hate going there. Everyday it’s a reminder of where I do not want to end up myself someday.

I am 62 years old and eager to get on with life while I still have my health. I just hate the guilt I feel when I go on a speaking trip or on a hike. I feel guilty when I notice a handsome man in a crowd. I often wonder if I will meet someone to hang out with someday; then I feel sad for thinking that. The voice inside my head keeps telling me not to have too much fun because your husband is lying back at the care center being eaten alive by dementia. I want to tell that damn voice in my head to shut the hell up. I want to be able to concentrate again. I want to read a book and really get into it. I want to knit sweaters again and go dancing. I want adventure! I want to be free!

So who was I really thinking about at Barry’s care conference — me or what is best for Barry? That is what I struggle with as I move through each day and wait. But today, I realized after seeing the panic in his eyes at being unable to swallow, that living must be hell for him. What kind of life is it to have lost your speech and are only able to lie in bed all day? Everyone says Barry wouldn’t like to live like this. I guess that is true, although I cannot remember that we ever talked about it.

I had to stay strong at today’s care conference. It’s my job as his wife to do what’s best for Barry. So it has been decided that there will be no more food for him if he doesn’t swallow the first bite. No more nutritional supplements and no water unless he can get it down. The hospice people told me it is much more comfortable for him this way. They also told me other things to watch for. Now hospice visits will increase as we move forward.

So I stood strong and told the voice in my head to be quiet! A long time ago on this journey of ours, I accepted the fact that I am not perfect. I finally know in my heart that this is what is best for Barry.

Before I left him today, I did something that I have never done before. I whispered in his ear, “We will all be fine. No need to worry anymore. You did a good job and it’s okay to let go now.” He laid very still listening and looking straight into my eyes. I wonder if he understood.

Then I drove home dreaming of summer and hiking — and I only felt a little guilty!

Posted in Barry's Journey Tagged with: , , , , ,
72 comments on “BARRY’S JOURNEY – Pretty sure….
  1. phyllis beetsch says:

    Nancy….. John and I are extraordinarily astounded at your bravery and your love and devotion towards Barry. There is no other pain than that of watching a loved-one suffering, helpless and at the end of life’s journey. To make that decision of no further treatment requires you to come to terms with being without Barry, even though his last years have been so difficult.
    You commented that you whispered in his ear that he needn’t worry about you and the kids and that he could let go now, must have been the most difficult words you have ever uttered.
    But in your heart of heats you know now that it is time for everyone to let go, including his large group of friends.
    We admire you Nancy and have been reading your blogs all along. As a writer, you express yourself so beautifully and John and I are sure your words have helped others going through similar journeys with spouses, parents , dogs and children.
    When the time comes for Barry , we pray that it will be peaceful for you and your children. And he will forever be in your hearts, and our hearts as well.

    Be Well Nancy,
    John and Phyllis Beetsch

  2. Susan says:

    (i don’t remember how I came to read one of your posts but I shared it and my friend Stewart said he went to school with you). I can’t imagine what you’ve been going through and am happy that you’re not feeling so guilty anymore. I think you are doing the right thing by listening to the pros. And, yes, you’ll find happiness again in one form or another. You certainly deserve it. Your posts are so touching in their rawness. Sending hopes for a smooth transition to both of you.

  3. Elizabeth Karre says:

    I love your beautiful honesty, Nancy, in the face of…just life, I guess. I appreciate so much you giving voice to the experiences so many have had. We think and talk about you and your family often and everyday I look at your artwork on Edmund’s wall and find it so lovely (a good distraction from toddler defiance!).

  4. Good….Yes, good. I remember these days and how difficult it was, before and after. Beyond hard. And I felt very guilty after Paul died, though the circumstances were different. At the nursing home they put the feeding tube in wrongly after he pulled it out and then fed him. I had to tell them “no surgery” at the emergency room. Beyond heartbreaking. But there were no good alternatives. We were both 62 when he died. I still miss him, eight years later, though not with the earlier intensity. But life goes on. You are doing a tremendous job dealing with a heartbreaking situation. Be well, Nancy! I am praying for you and am sure many others are, too.

    • Sarah Rose says:

      Nancy,
      My thoughts are with you. Your thoughts remind me of my mom when my dad was lingering on. One night she said, “oh, I just wish I could put a pillow over his face.” Of course she didn’t but we all knew how she felt and do understand the way you are feeling. All my best to you and your family. Sarah

  5. Margaret Mazzaferro says:

    Nancy,

    I admire how honest you are about your thoughts and feelings. I think you’re wise to not be too hard on yourself. I believe not deceiving yourself is important. You’ve borne up under the strain of Barry’s disease for several years now, cut yourself some slack. This has been a long and painful journey for everyone in your family, and if Barry has reached the end of his road, let him go in peace. My thoughts are with you. Stay strong.

  6. David Geister says:

    Nancy,

    You are giving Barry a beautiful gift by letting nature take its course. I can’t stand the thought of my dear one someday being in Barry’s situation, and I hope I have to courage to do for her what you are doing for him right now.

    Sending love and hugs –

    Dave

  7. Patricia Schenk says:

    My heart goes out to you today as I read your thoughts. I appreciate your honesty and your acceptance of your journey is so healthy. Don’t feel guilty. God has a plan for you too. Sending prayers your way.

  8. Michele Olson says:

    Yes, it is a difficult and sad topic, but I so appreciate the courage it takes for you to write honestly about it. I have not been in your position, but it’s one that I may have to face one day. I do know how it feels to watch a loved one die, and there comes a point where you know that it’s time for them to have peace, it’s time to let them go. Thank you so much for this.

  9. Merelene valder says:

    I am not as far along in my journey with my husband as you are but I have the same thoughts and feelings of guilt. I hope that I am as strong as you are when it is my turn. I believe that you are acting in his best interest. I know it will be hard for you in the days ahead but I believe it will be better for him. I’ll be thinking of you and praying for God’s mercy and peace for all.

  10. Mary O'Brien says:

    Healing light and energy for you as you accompany Barry on this journey.

  11. You are brave enough and strong enough and wise enough to make these choices. You can do this, and it will be okay.

  12. Kris Sandoz says:

    Dearest Nancy I so appreciate your honesty about this. My heart breaks for you and big hugs to you!!!

  13. Christine bekiares says:

    Thank you for the post. It is on the minds of so many. So hard to say, and we suffer with those inner thoughts. You are brave and so thoughtful. I understand. Thank you again for your heartfelt words.

  14. Karla Brewster says:

    So hard reading your post. We had to make this choice for my dad for very different reasons, it’s a weighty decision but it’s the best decision, we realized it after he was at peace.
    Karla Brewster
    Teacher Moorhead Area Public Schools (Where you are a much loved author and illustrator)

  15. Susan Balfe says:

    As usual, I am deeply grateful to you for your honesty.

  16. Nancy Paxson says:

    Heart breaking and now getting to be a familiar story to us and some if our friends. What you whispered to him was the perfect gift. We said something similar to Mom last February. It was good for her to hear (we hope) and good for us to verbalized. A way of letting her let go and let her stop struggling to keep going.
    Blessing to you at this time.

  17. Emilie Quast says:

    A dear friend died at 99 years, one week after her birthday. Lois had a living will, stating no artificial means to support life in the body. When she told me, I must have startled because she quickly said she was not afraid of dying. She was very afraid of not being able to die when her body was done. So: Lois would say, “Bless you!” and mean it.

  18. Pam schultz says:

    Cannot say I understand, I have not walked in your shoes. Your honesty will help others, I hope and pray that in writing, your own words are a balm to your own heart. I have worked with families and hospice try to let their knowledge and wisdom inform you. I always hope that I don’t sound “preachy” you are brave

  19. Lauren Mittermann says:

    Dear Nancy, I read your post and just wanted to hug you and comfort you. Your words express perfectly what the experience is like when your loved one has dementia and is slowly, but surely, moving away from life.

    Sending so much love and strength to you.

  20. Nancy Glades says:

    Nancy, doing the best we can is all we can do. It was so important that you told Barry what is in your heart, and let him know it’s okay to let go. My heart cries for you. It will be better, in time. You’ll have a life to live and that is your job, too.

  21. Kathy Hurd says:

    My heart breaks for all of you! Your decision is one that no one wants to make, but unfortunately many have to. Thank you so much for your courage and strength in sharing your story with us. You and your family are in our prayers.

  22. Kathy Klis says:

    Nancy, I am hugging and holding you tight in my heart. I understand your feelings as I had the same thoughts and guilt dealing with my mom. I felt better, but still very sad, when I realized that was not my mom in the bed. I knew in my heart she had already moved on to a more beautiful place, only her physical body was still here. You, Barry and family are in my prayers.

  23. Lyn Lacy says:

    You have done all you could and should and are now continuing to do the right things for Barry, your family and yourself. Hold tight to that thought and know that you are loved.

  24. John Dudley says:

    Nancy,
    I have not read all of your “One foot in front of the other” stories until this one. Maybe there is a reason for that, I don’t know. Reading this excerpt, I find myself in very familiar shoes with you and the emotions you are going through, I and my bride of 30+ years have gone through with our parents and our son Andrew. If you have time and are interested, I would be glad to sit down with you and help sort things through.
    John

  25. As a member of the medical community, trust the hospice people they have been down this path before. They are compassionate, professional and great at their calling. They often help the family along the journey more then the patient they are there for. You and your whole family remains in my thoughts and prayers.

  26. Edie Pierce-Thomas says:

    My heart aches for you Nancy.

  27. Marcia Meier says:

    Nancy, I have followed your journey by reading every post. It has been very sad and also very brave for you to write so honestly. Right now I am totally with you on doing what is best for him and that you need to decide what this is. How very difficult and also how loving and humane.
    Caring and loving thoughts to you.

  28. Carol says:

    May peace be with all of you. Love and prayers to you and your family.

  29. Carol Mashuga says:

    Peace be with you, Nancy. And with Barry and your family.

  30. Jody Bohrer says:

    Thank you for sharing, By sharing, you are helping many others, including me! We never know what road lies ahead for us and our loved ones, do we? I can only imagine how hard this is for you….

  31. Betty says:

    I have read every one of your posts. You are giving Barry a gift to let him go. His is no longer a life well lived. You have time and a life left to live. You are doing the right thing.

  32. Gordon and Sara Jane Minehart says:

    Nancy. The greatest gift you can give Barry now is to let him go. Our thoughts are with you.

  33. Jean Jaeger says:

    Dear Nancy,
    I too have gone through this with my dear, dear mother. To decide to let them go is a gift you give to both you and Barry. You are so wise and write beautifully. I promise, you will remember the good times and cherish your memories with Barry. I know how it takes over your brain!!!! Be brave! Jean

  34. Laurie Wilson Spencer says:

    Nancy – my dad was in hospice at home under different circumstances, but I knew he was looking for us to say it was ok to go – and was struggling to stay. So we told him, like you , we would be ok and he could go. I know he heard us and it helped him go. I hope it helps Barry. You’ve been so very brave thru this journey. Much love.
    L

  35. Lynn Anderson says:

    Thanks for being so honest with us Nancy. I admire your strength and love for your husband!

  36. Char Loving says:

    Hi Nancy,
    Thinking of you and Barry on this vert difficult day.
    Thank you for sharing.
    I worked at Fallon for 10 years back in the 80s when I met both of you.

  37. Susan Rogers says:

    Wishing you strength, comfort and peace as your journey moves on.
    Susan

  38. Lisa Von Drasek says:

    Dear Nancy,
    Thank you for sharing these very hard moments. I am so grateful for Hospice and the people who provide this end-of-life care. You don’t need me to tell you that every choice you are making is the best one at this time, made with the information you have, the expertise of the caregivers, and in the best interests of Barry. with love lisa

  39. Barb weisman says:

    Sharing your thoughts are the most gracious thing you can do. For those of us who have been in your shoes, but we were afraid to acknowledge what you so eloquently put on paper. Thinking of you and your family during this time. Nancy you are an amazing woman. Peace, Barb Weisman

  40. Lynn Timmer says:

    Dear Nancy,
    This was shared, and my prayers and heart go out to you. May the “Son” shine warm upon your husband’s face and bring both of you amazing peace.
    With a hug,
    Lynn (from Good Sam)

  41. Sally Iverson says:

    Nancy,
    Read every word, Heard every word.
    I’ve got tears for you and Barry and your children, friends, and everyone out here who have had to watch a person experience dementia. I’m thankful that you continue to write so honestly and with such love for the Barry who you once knew and loved and the Barry who is, possibly soon, going to be on his own adventure, somewhere else.
    Hugs.

  42. Ann Hustad says:

    So thoughtful.. So honest.. Sending strength and peace to you all.

  43. Dedra says:

    Dear Nancy,
    What precious words of honesty you shared with us today. Praying for peace for you and your family.

  44. Kathy says:

    Nancy, as usual your writings make me feel! You are so gifted. This is a crappy journey we are on. I’m so glad that after writing one of your toughest blogs- if not THEE toughest that you were given so much love and support from your followers. It can be scary revealing those deepest personal raw feelings. Especially the ones that make us feel guilty. Our loved ones were dealt a rotten hand, but !! … so were we. It is so obvious how much love you have for Barry. But, remember to love yourself too. That means take care of your self, emotionally , spiritually and physically. Have fun hiking with friends and enjoying life so that the healthy you can be Barry’s very best advocate until he goes home to our Lord. Barry would want that for you just as you would want that for him if the tables were turned. Love & hugs!!
    Kathy

  45. Sarah Miller says:

    Nancy, I can’t imagine what life has been like for you day after day watching Barry slip away.. You’re feelings are more than ok to feel.. Talking about it, and writing about it, helps you heal and get through this.. I can’t imagine myself feeling any different than you do, if I were going through this myself.. You have helped me to think about facing death with loved family members.. Letting go is ok, as hard as it is. Barry knows you love him, and would want you to be thinking of your life ahead of you, of which none of us are guarenteed. Your letting go, with Love, is a gift to him and to you as well. Hugs and Prayers to you.. Sarah

  46. rachel milsten says:

    Nancy, The most difficult thing i ever did was tell my dear daddy that is was o.k. to die. He was in a coma and could have stayed in it for months, and I knew he wouldn’t want to. He died 32 minutes later. I did the right thing for him and for me, but as I said, IT WAS THE HARDEST THING I EVER DID. BUT IT WAS RIGHT. I felt good about it because it was right, and I knew that I could retain the love forever. I know it is not the same as losing a husband, but I wanted to share.

    I will keep you in my thoughts and prayers. Rachel

  47. Ruth Christenson says:

    Nancy, your are thinking and feeling pretty much the thoughts and feelings that I had as my husband was dying after years of living with Parkinsons. I thank you for being open and sharing with us.

  48. Jean Housh says:

    Nancy,
    You are a courageous woman. Your love for Barry shines through this post today.

  49. Laurie says:

    You stood strong. You are a love warrior. You have faced more than what one expects in this good life. Nancy, your honesty is a gift to us. You have shared with grace and humility. Thank you, from a full hearted friend.

  50. Tyler says:

    Nancy,
    Your path will be my path one day. I don’t know when, but I’m inspired by your strength, your honesty, your admission of vulnerability and your resilience. If I had any other words, I would say them. But I don’t. So I’ll just put you all in my thoughts and my heart. xo.
    Tyler

  51. sally blumenthal says:

    as a therapist and former hospice nurse and healer,i believe you each have exactly what you need inside when you need it. doesn’t come from your head and certainly not barry’s at this time. he doesn’t need calories to lie in bed, he is getting closer to leaving his body behind that he has outgrown. letting go is a gift. it will be the perfect time, in retrospect. slowly giving up intake is a very natural process for his body as well. i send you lots of peace on your journey and on his. after all i bet you want him to be at peace too, and have for a long time.

  52. Coreen Blau says:

    Dear Nancy,
    You have been brave for so long. And yes, you are doing what is right for Barry. Thank you for being so open & honest through this nightmare of a journey. It is in the Lord’s hands after all, as you are too. I appreciate what the nurses told you. Wishing you all the best. Hugs, Coreen Blau

  53. Mary Senneka says:

    Of course he understood. I whispered those words to my father. I told him it was OK to go; heaven was waiting for him. His agitation and mumbling stopped. He got very calm. Then he said “it’s so very beautiful.” Those were the last coherent words he said.

    And, dear Barbara, please whisper those words to yourself. “You did a good job and it‚Äôs okay to let go now.” It is okay to let him go. Your love for him endures. He would want you to go on living.

    My prayers are with you all during this sacred journey.

  54. Chris says:

    Hospice is a Godsend. Lean on them. Your decision is the right one. Barry is ready to go and you have given him his needed permission. You are in my prayers.

  55. Luanne Lescarbeau says:

    Dear Nancy, Long ago it was obvious that you had been given a gift. The fact that you have been able to communicate so clearly the journey you and Barry have traveled has taught life lessons to all of us, your fans. Our speaker at Joan of Arc about a month ago spoke to the journey we all travel, and she concluded by saying that we are all just “walking each other home.” You have done a beautiful job of walking Barry home. God bless from the Lescarbeaus, friends of Kay and Jim.

  56. Kate Barsotti says:

    I don’t think dying people hunger or crave food, so it’s ok. Maybe he feels guilty for the relief he will feel when he does not have to suffer anymore, but that means leaving everyone. Grief is different for everyone (all the stages stuff is silly). You are doing the best you can, so is he, and I hope this tranistion gives you peace.

  57. Mary Sue Boelter Lienke says:

    Nancy:
    I keep reading your heart wrenching blogs, I am so sorry that you have to go thru this. It must be so difficult! Please don’t feel guilty, easy for me to say!, but you have done the best job you can and Barry knows that. If I were in his position – I would want to go on to the next journey of my life. He has suffered enough and so have you!
    May God be with you and keep you in the palm of His hand!
    Mary Sue

  58. Alexis T says:

    Nancy -I am absolutely sure your whispered love note to Barry was understood. Kudos to you for being so strong to be able to tell him you’ll all be OK.

  59. Wendy Hitch says:

    Nancy,
    I have been there and done that. I was in Stillwater the day the care giver called and said my mother, who had dementia, could no longer swallow. It is human nature to try to keep things alive … I tried every soft food I could think of for her but she wasn’t interested in anything but ice cream. So we had an ice cream party and that was the last of it. Her body was shutting down didn’t want or need food. She moved into a state of peace, almost like a light coma, and it was a relief for everyone. It was intense at the end because I wanted to be there with her when she passed – luckily it was just before Christmas so our family would gather around her to sing carols and read her favorite Christmas stories aloud to her. We definitely felt the beauty of her passing at that time. They say the winter months with the short days create an environment of “yin” – “the female principle of the universe that is considered dark and passive and is associated with earth” – and it is when many people who are ill or old pass away. I pray for you that Barry goes quickly and when it is all over, you will have no regrets. You will sense the freedom of his soul as he passes from a disabled mind and body to a free spirit! At least I sure did – and my mother was returned to me. xo to you and yours

  60. Alicia Schwab says:

    Nancy,
    You’re doing an amazing job. It has been such a hard road to walk down for both of you. You just do your best each day, one step at a time. It takes a lot of courage to let go. There is no perfect way to go through it.
    -Alicia

  61. Susie Heim says:

    Peace.

  62. Joy DeVries Englund says:

    Dear Nancy,
    What an incredible journey! Your eloquence with the pen and your open heart are such gifts.
    May God grant you, your kids and Barry peace, comfort and strength today and in the days to come.

  63. Deborah says:

    I have walked the walk, felt the pain and guilt just as you describe it. Our experience was so similar it’s uncanny. The limbo, the silent stare, the final spoons of food, the final sips. And then, at long last, the relief. You are in my thoughts as you hold hands along the last few steps of the path.

  64. Deborah Cox says:

    Nancy I feel for you what you did is the hardest thing to do. I was very close to my dad and in a conference call we had to make the same decision. It is the hardest thing I have ever done. But it was the right one for him but not for me and I am sure you are feeling that way. Try to stay strong talk your feelings out my phone is only a call away and would be happy to just let you talk. If that would make anything easier. God is watching over him and you to.

  65. claudine coughlin says:

    Dear Nancy, I just finished reading your posting. I am saying prayers for you, your family and Barry. I am glad that he is on hospice. These people are very knowledgeable and I am sure will be of comfort to you and your family. I know your want to be there all you can, but remember you have to take care of yourself also. I loved that you were able to whisper to Barry and its okay if he leaves. If he did hear and understand you, that will make leaving easier, they say! Love you and stay strong. We are all here for you. Love, Claudine

  66. Jan Nicolai says:

    Lean on and lean into Hospice, Nancy! If you have the Fairview Hospice caring for you and Barry, ask for Phyllis to make a visit. She will bring her harp. She played for my mom and our family the entire week she was dying. And yes, I believe Barry heard you and needed to hear your words. Hearing lasts.

    Though I have met you at Diamond Path Elementary School, in Apple Valley and though you have signed a great many books for my children, I do not know you. If you do not want to sit with Barry alone, or do not want Barry to be alone, contact me via e-mail and I will be present with you.

    Wishing you gentleness and surrounding you in prayer,
    Jan Nicolai

  67. Ann Hayes says:

    Dear Nancy and family,
    I have read your post and admire your strength. You have had a long struggle and it has not been easy. May the Lord continue to bless you and keep you in his care.

  68. Peg Gaard says:

    Nancy, your honest emotions and transparency in documenting your journey with Barry have given others another lens with which to view their life journeys. I will continue to keep you, Barry and your family in my daily prayers.

  69. Judy Trucano says:

    Nancy,
    I send you peace, love and support.
    From a kindred spirit,
    Judy

  70. sally blumenthal says:

    with time you get to discover the entire book of barry’s life, not just the last pictures and chapter. it is a gift to love him enough, and yourself, to let go, this is his journey now. you have done your best, thats all anyone can do, and our best fluctuates. you always have what you need, in every moment, for whatever comes your way. good for you for telling him you will be okay, you will. peace on his journey and yours

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