As most of you know my husband died September 18. It was my turn to walk on the other side of hospice. He was diagnosed in May with cancer of the lung. At 89, we decided treatment would hinder his quality of living. At 89, any disruption of our “normal” can turn into a downward spiral. We wanted him to live his best life while he could.
It is interesting to me that with all my knowledge, I fell into the trap most people find themselves in: not wanting to see what is really happening. Intellectually I knew the signs and patterns of approaching death, but emotionally I kept pushing food and seeking engagement. AND experiencing the frustration those actions were building.
It took a day of anger to recognize I was concentrating on keeping him alive while he was preparing to die. It took anger to begin accepting what was happening. Actually, “accepting” is not the right word, because it will never be okay. Let’s use the word “understanding.” It took anger to understand what the future was bringing.
I knew all the signs of approaching death, of labor beginning. What I didn’t know was how much we don’t want to see those signs, and by not wanting to see them, we often don’t.
I knew he was dying, and dying soon. But I didn’t want to acknowledge just how soon. It was our hospice nurse that knew it would be days while I saw weeks. She saw hours when I saw days. Despite all of my knowledge, I was looking through the lens of denial. My husband couldn’t be dying now. She gently guided and supported us with her knowledge, people skills, medical skills, and kindness.
My wish in sharing this personal experience is that you, the reader, can benefit. That you, the reader, can find yourself in my story and see just how normal the difficult life of a caregiver is. I hope you see that our emotions have a great deal of power over us and can influence what we see, hear and do. Knowledge helps, but it is our emotions, under the surface, that guide us and tend to block us from seeing what we don’t want to see.
I want to thank all of you, whom I only know through this blog, who sent me encouragement and yes, love. I carry your kindness with me as I continue to walk this new path.
Something More... about When Our Emotions Blind Us From What is Happening
I have a request...
If you know someone with a loved one facing end of life, will you share this blog article with them?
If they don't know how to go about chosing a hospice agency, will you share this blog article with them? MOM NEEDS HOSPICE? Here are your questions to choose the right one...
And if they have hospice services but don't have "the hospice blue book" to help them understand signs of approaching death and what they can do for their special person, will you share the discounted bundle with them? End of Life Guideline Series by Barbara Karnes
19 comments
I lost my husband on Feb 4.he had ESRD . I saw what you saw. I felt what you felt. Until the day came. Yes it was exactly as you describe.
I too am a nurse.so I could see with my nurse eyes. But I felt with wife heart.
Thank you for doing the work you do.
I also have my 87 yo mother in hospice.
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BK Books replied:
Blessings to you Maria and your mom. Thank you for sharing. Barbara
Barbara, I met you once when you came to Kansas to visit. I have always loved your work and your books. My deepest condolences and frequent thoughts are with you as you navigate this new world without your dear husband.
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BK Books replied:
Thank you Sally, for your kind and thoughtful words. Blessings! Barbara
I worked as a Hospice RN for 3 years nearly 20 years ago. Gone From My Sight was the best resource I had ever used. I retired after 46 years of nursing last summer. I used those hospice skills over and over in every hospital setting, and at home, with my own Mother, and on the phone.. with friends… and acquaintances. Call Kathy. She knows about Hospice. We’re in a temporary place right now while my husband fills in a pastoral vacancy at his childhood church, and a dear friend is here with pancreatic cancer. I have been able to persuade them to sign up for hospice, he got better pain control today, they’re delivering his meds and equipment, his family is here and I ordered your booklets this morning. They might not get here in time, but that’s ok. I remember what to say and do. And I’ll be ready for the next time. Thank you sincerely for the best nursing and personal skills I ever learned. I have been able to care for many people with my heart, even when there was nothing I could do with my hands. ♥️
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BK Books replied:
Kathy, thank you for sharing your experiences with me. I love “I have been able to care for many people with my heart, even when there was nothing I could do with my hands”. Can I make a poster of it and share with others? Blessings to you in the work you are doing. Barbara
Rebekah, I think I responded to your lovely comment to my blog but I can’t find it in my sent box. I am reaching out again because I want you to know I appreciate your sharing. Also know we always do the best we can in every situation. We may look back and assess but at the time we are doing our best. Blessings! Barbara
On 9/12/23 my oncologist told me that my metastasized cancer is not curative. I already knew that my cancer is one of the rarest types—first discovered only 8 years ago, and I was #43 in the world to be diagnosed with Mesonephric Adenocarcinoma. MD Anderson has been wonderful, especially in handling the announcement that I need to plan for 18 to 24 months. How much of that will have quality of life, I don’t know. My daughter was in the room with me. She fell apart. I was shaken, but quickly adapted to reality. I am not in denial. And it irritates me when friends say, “Doctors are not always right. If anyone can beat this, you can,” and then they send me an array of alternative remedies to try. One suggested I take pet dewormer! I’m 76 this month. Still working full time at a job I love, and still feeling great until I become symptomatic. My life has been wonderful, and still is. My bucket list is very small. I’m looking at the upside of this….Yes, there is an upside. I will be spared the pain that reaching into my 90’s would bring (which is common of all my relatives). I will not see my friends, loved ones, and my dogs die. I will never look into a mirror and see a shriveled up old lady, hunched over and suffering from aches and pains. I will not hear the words, “Mom, you can’t drive anymore,” or “You can’t live on your own anymore, and must go into Assisted Living.” I’llnever have dementia.
I’ll never have to retire and face years on a fixed income. I will leave my job only when my cancer debilitates me. If I had to design my own life’s end, it would be what I am blessed to have: Time to say goodbye. Time to clean out closets and drawers. Time to write notes to those I love. So many people much younger than me die, including babies and children, before they’ve ever had a chance to live the exciting, full life and career I’ve had. Millions have suffered, and are suffering, the horrors of war. How could I lament my own fate? But I’m glad to have discovered you, Barbara Karnes, and I bought the compilation of End of Life Books, which were delivered today. I will share them with my daughter. She’s having a much harder time than I am. God bless you!
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BK Books replied:
Michele, I want to be like you when I grow up (although I am much older than you are now). I wish we all could look at life, death, and living until we are not, through your lens. If I can be of support to you through this last chapter use my email barbara@bkbooks.com. Blessings to you! Barbara
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