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Caregiving Is Love

Dear Barbara, I have heard on a recent podcast that you did not have the best relationship with your mom. I would love to learn more about the strategies you used to keep grounded in the present, that allowed you to do the best caregiving of self plus your family unit plus your mom, minimizing breakdowns. What would you have done differently?

To answer the last part of your question first: What would I have done differently? Nothing! In hindsight, I did the best I could and from that best, it was a good five months. I was able to let go of the past and live, love and give in the present. 

How did I stay grounded, take care of myself, my family and my mom in the five months she lived with us before she died?

Here are my thoughts:

I learned “Love is a verb”.  Love can go beyond the emotion we think it is to an action. We are loving by doing the job of caring, physical caring, even if we can’t touch into the emotional meaning of the noun love.

I learned you can’t get your own needs met by the ill or dying person. They are going inward where there is only room for one. They become self-centered, think about themselves, don’t have much room for others, SO we, the outsiders, have to give what we want and, in many cases, need. If we need physical affection (hugs, touching) we have to give it. If we need to talk about a topic, we have to initiate it. If we need to feel closer, we have to make the moves.

All of us have unfinished business in relationships and as death approaches in the months before death it is up to us to find closure if that is what we need.

Roles tend to become reversed. I became the mom in our relationship, and she became the child. Not in a bad way, in a nurturing and decision-making way.

The past is the past. I decided I didn’t want to “blow” the present by feeling and feeding the past regrets, injuries, mistakes. I let it all go and concentrated on the now, on the gift of time that we had. I decided to take that gift and use it wisely. I wanted to build good memories that maybe could overshadow our past.

In those last five months I tried for us to live in the present, to build good memories, to love, give and live in the moment.

It has been 28 years since my mother died. I have good memories of our five months together and I will say time has tempered the hurts that bruised our relationship. I can also say “I love (noun, feeling word) my mother.”

We can make our love a conscious decision by our actions. 

I just wrote a new book, By Your Side, A Guide for Caring for the Dying at Home that is for caregivers  who are caring for someone as the ending of life approaches. I think it has the guidance you are looking for.

Blessings to you. Barbara

Originally Published on

Barbara Karnes Registered Nurse

Barbara Karnes, RN Award Winning End of Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner 2018 & 2015 International Humanitarian Woman of the Year

While at the bedside of hundreds of people during the dying process, Hospice Pioneer Barbara Karnes noticed that each death was following a near identical script. Each person was going through the stages of death in almost the same manner and most families came to her with similar questions. These realizations led Barbara to sit down and write Gone From My Sight, "The Little Blue Book" that changed the hospice industry.

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