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
Dear Barbara,
Me too, me too!! I was a hospice nurse for 35 years, full of knowledge that thought I could surely count on as my husband got sicker and sicker. I was NOT prepared for him to die that month, or that week, or surely not that night! It was getting closer, I knew – but not THEN! It hadn’t even seemed the time to assemble a hospice team for us yet, I thought. You are right, having the knowledge and experience doesn’t mean we can skip over the cushion of denial that keeps us from acknowledging reality.
I can’t tell you how the admission of your experience has lifted a lingering guilt that I have felt for over 12 years. You are amazing – continuing to teach the rest of us in the midst of living your own story. I share your books with others over and over. And thank you every single time. May you be blessed as you make your way through these early weeks and months of this new landscape, Bess
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BK Books replied:
Hi Bess, thank you for your reaffirming words. It sounds like we walked the same road. Blessings to you. Barbara
Hi Barbara. I love all your posts/blogs/books as I am navigating my 2nd family death in a year. I plan on sharing your materials with my small group at church that helps those of us navigating care for an elderly family member. I’ve learned a woman’s gut feeling is so intuitive with reality but in pain we tend to doubt ourselves. May the good Lord hold you close as you get used to your new normal. Hugs!
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BK Books replied:
Julie, thanks for the hugs and I am sending my thoughts and blessings back as you travel this road again. Barbara
Thank you for sharing about the loss of your husband and your feelings and emotions. I lost my son to Lou Gehrig’s disease 9 years ago and although I knew he was not going to live I was in denial. I just thought he was going to keep living as he was. I didn’t want to face losing him. I hated it. I kept praying for a cure but there is none. I believe my friends and church members praying for me helped me through.
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BK Books replied:
Sandi, Thank you for sharing. Sometimes denial is the only thing that gets us through the night. Blessings! Barbara
Thank you for being so vulnerable with us. I learned of your work from watching your video with my friend who was a hospice manager. Then I bought your video and books and have shared them with others who were going through this with their loved ones. I appreciate your wise blogs and even though my parents are gone I read every one.
Your work has blessed so many, thank you for caring about the caregiver along with the person in hospice. Sending love for this new chapter in your life. ❤️
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BK Books replied:
Hi Denise, Health care tends to overlook or not include caregivers. This is unfortunate because they are really a package deal. One affects the other. Hospice care recognises this relationship. I wish all of health care did. Blessings! Barbara
I sent you an email right after your husband passed. My husband died on Sept 18th also. I just read your above writing. It is exactly what I was doing. I knew intellectually he was dying soon. Emotionally I just could not believe he was really leaving. He was so sick I have no idea how he stayed as long as he did. I didnt think I was in denial but I just was not ready. Thank you for sharing that even you, with your knowledge & expertise, struggled to clearly see the reality of what was happening. Thank you.
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BK Books replied:
Hi Elizabeth, It is hard to accept what our eyes are seeing when our heart says no don’t do this. I appreciate your sharing. Blessings! Barbara
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