MY JOURNEY – September 2016

Should I sit by his bed until he dies?

Today I got a call from the care center where Barry lies in bed day after day. The nurse only calls when something is wrong. I am up north staying at the little cabin that I am renting for two months this summer. I was just home for a week and Barry seemed to be stable, so I headed north once again to write. The call came as I headed into town to get a donut, another delaying tactic as I try to write. My heart stopped when I saw who the caller was. I let it go into voicemail because I really didn’t want to hear the news from a live person. So this would be the day Barry has died, I thought to myself. A beautiful late summer day with me so far away from him.

I stopped and listened to the message as tourists, mostly couples, holding hands on a romantic getaway walked around me. I looked out at the lake and listened to the nurse tell me that Barry had fallen but was not hurt in any way. He went on to say that Barry had actually gotten out of bed and tried to walk into the hallway. He grabbed the door handle, falling slowly down on his back while the door slammed shut. The sound startled the nurses who ran to his room. Barry was lying on the floor, looking confused but unhurt in any way.
The nurse said that everyone was surprised that Barry found a way to get out of bed. I was shocked that Barry, weighing just 111 pounds, had found the strength to walk on his own. He is all bones and lose skin with little effective muscle after two years in a bed. In the end, the nurse said all was fine and if I needed to talk more about it, he would be in all day.

I stood on this beautiful morning feeling sad and so confused. Was Barry looking for me? Does he wonder if I have left him for good? Does he wonder if I do not care anymore? Should I go home? Should I sit by his bed until he dies? There is no guidebook for this journey. No rules. No one to tell me what to do.

After buying a donut, I continued to avoid writing and instead hiked up to the top of a cliff overlooking Lake Superior. I decided for now, on this day anyway,that I would stay right here –no matter how hard it is to be away.

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17 comments on “MY JOURNEY – September 2016
  1. Sending love, prayers, and strength to you, Nancy. Just follow your heart.

  2. Judy Peterson says:

    Barry knows you love him. You have shown him that over and over. He loves you and I would guess that if he could tell you he would want you to find happiness. You are not ignoring or forgetting him. I am praying for peace for both of you.

  3. Jane Hall says:

    You are amazing. Love love love to you.

  4. Beth-Ann says:

    Wishing you peace and a lifting of the guilt that is so hard to avoid.

  5. Jean Jaeger says:

    I thought of you off and
    Oon as we hiked and ran
    Aroind Grand
    Marais this weekend. What a gift that you can
    Write your feelongs down
    So well. Be well.

  6. Be where your heart is at ease.

  7. Nancy Paxson says:

    Thanks for sharing all these difficult feelings. Many people can relate on some level, if they have been involved in the final years, months, days, hours of a loved one. I congratulate you for trying to balance the caring with taking care of the rest of your life. These days are not to be wasted on waiting. And yet… ! So enjoy Lake Superior and Autumn and grand kids and doodles and sharing your skills and insights. Blessings to you!

  8. Nancy Carlson Wangstad says:

    Dear Nancy,
    You have been so strong and so caring. He still loves you so much. What a tough disease to get for all. Thank you for sharing from your heart. I am here to listen to all, or thoughts and prayers are with you all! God is with you!

  9. Karla Brewster says:

    We’re all praying for you on this journey, you will make the decision that is right for you and you should not have any regrets. I left the night my dad died, partly because my clothes were all dirty and I needed to go home to get clean ones and partly because I knew the end was imminent and I didn’t want to be there, I’d seen enough decline to last a lifetime. Love to you Nancy.

  10. Jill Harding says:

    I would have hiked up to that lookout and stayed too. Sending love and good thoughts.

  11. Dedra says:

    Prayers for you as you continue this journey. So glad you’re taking a little time for yourself. Peace to you.

  12. Leslie says:

    You are a marvelous, strong woman that teaches us with your kindness and compassion. Both of you are in my prayers. God knows what a tremendous person you are.

  13. sheila burns says:

    What you are going through is a kind of mental, emotional, spiritual torture. You need moments of peace to be able to survive and function, on whatever level you can. My mother almost died a dozen times in the last 10 years of her life. I was glad each time she recovered, but it was exhausting, preparing yourself for a loss that didn’t happen. She gave me her blessing to live the life I needed to and not put my life on hold waiting for her death. She said, “I could die tomorrow or it could be years from now.” I am so grateful she said that. It was five years. I felt bad that I didn’t stay at the hospital the night she died, but just before I left she asked me to bring her some books to read in the morning. She was a voracious reader and always had a pile next to her bed. I still miss her, but I miss her younger self, not the invalid.

  14. Mary Beckman Woodward, says:

    In the last nine years I have gotten many such heart stopping calls. I dreaded any calls after midnight especially. Funny – I do what you did let it go to voice mail and then I can listen to the message after I get to the cabin or wherever so I can feel safe when I listen. I usually text one of my
    Kids or a cousin or friend. Them I’m not alone when I hear the message. It’s usually about a change of meds or routine but peppered in several trips to the hospital, falls.or flu. You are in my thoughts Nancy . If it were me I would stay up there. If I ran home every time something happened I would never be at peace. It seems to be an almost primal urge to get out of bed. I love the peace you are feeling up at our big lake.Stay strong up there and in peace. They have to let you know when anything is out of ordinary for legal reasons. You are nurturing your soul which is necessary for YOUR SURVIVAL. You are loved, Mary

  15. Claudine Coughlin says:

    Oh Nancy, I feel so sorry that you are so far away, but Barry is probably not aware of you not being there. Follow your heart. I will continue to keep you in my prayers and also for Barry and your family. Take care! Love, Claudine

  16. Karen Allbright Jones says:

    IMHO, Nancy, there is no right or wrong; there is only love. You love him, he loves you and you cannot for your own sanity or for your kids and grandkids, stay by his bedside 24/7. You need to fill yourself up with hikes and mushrooms and slugs and birds and do what God created you to do; your art and writing. Your love and passion and joy and grief bless us all. You are choosing life and Barry is honored through that choice.

  17. I just read this article today and found a lot of truth in it…This month is the ninth year anniversary of losing my husband to Alzheimers. You are so brave and wise, more than you think. Stronger than you think. This terrible time will not be forever. Hold on to what is good. I know I am changed forever by what I went through, but I know that life is good……..

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