• Kitty Edwards

End of Life Care


Gwindolyn had her hands full with caregiving.


Her husband Ron had experienced his first stroke four years earlier. He fought hard to regain his balance and speech. A year later he suffered a second stroke leaving him with aphasia, an inability to speak clearly. The neurologist confirmed that small strokes would continue to impede Ron’s ability to recover.

Over the years, Gwin recruited family and friends to help with Ron’s care. She felt that caregiving was her kuleana, Hawaiian for “a responsibility that holds a gift.”


The recurring strokes made Ron angry and anxious. He worked with a physical therapist to restore his strength. He worked with a speech therapist to restore his words and numbers. He worked with me to find his courage.

One March morning when Ron came out of the bedroom, he was glowing. He literally radiated with peace and calm without explanation. Gwin couldn’t help but comment, and Ron seemed pleased she had noticed.

A few days later, Ron wanted to visit Gwin’s parents. This was not a normal request, but Gwin had learned to listen to Ron’s subtle passions. Gwin’s father, Jerry, a retired Army Commander, was suffering from congestive heart failure. He had just entered a hospice program that supported him at home.


Upon their arrival, Gwin’s mom wanted to show her a new sewing project. When the women returned they found Ron and Jerry, sitting next to each other, holding hands and glowing in peace and calmness together. Gwin was so surprised that she took a picture.

Four days later the full story unfolded.


On Tuesday evening, Ron collapsed and was unconscious. When the ambulance arrived, Gwin and a neighbor calmly insisted that Ron’s Do Not Resuscitate (DNR) order be respected. In response, the EMT did not treat Ron’s symptoms but took him to the hospital for evaluation.


The neurologist confirmed what Gwin had suspected. Ron had suffered a massive stroke. This time he would not recover his letters or numbers; Ron was transferred to a hospice comfort care facility nearby.

Just one day later, Gwin’s mother had a panic attack. Gwin asked if her father could be transferred to the hospice facility where Ron was, so that her mother could get some much needed rest. Jerry was wheeled in a few hours later, alert and chatting with Gwin as they set him up in the room next to Ron’s.


By the next morning, Ron and Jerry were both unconscious.


Gwin spent her time going back and forth between the two rooms simply sitting, singing, or in prayer. At 11:03 am Ron’s breathing changed and he just “popped out.”


Gwin felt his presence even stronger after he had died.


Soon Gwin returned to her father’s room. Within a short period of time, Jerry “popped out” too. It became obvious to Gwin that the men had chosen to go together.


It was a beautiful experience for Gwin who was grateful to have time to just BE with them both at the end.


Stillness Ritual

As caregivers we are always solving problems and fixing things. Sometimes, we need to stop and just be to appreciate the connection between our loved one and ourselves.


Tips for Being With Your Loved One

Accepting that our loved one is nearing the end of life can be a difficult and heart-breaking experience. This time can also provide a meaningful opportunity to focus less on the busyness of caregiving and allow yourself to just BE with them.


Here’s some guidance.


BE aware of common end-of-life signs

  • Less appetite

  • More need for sleep

  • Less responsiveness to people and their surroundings

  • Irregular heart rate and breathing

  • Skin temperature and color changes

  • Decreased urine output and bowel movements

BE authentic in what you say


Talk about the everyday things that you always have. Don’t try to find something profound to say as it can sound insincere. Allow your loved one to express their thoughts about dying even if it’s uncomfortable for you. Hearing is believed to be the last sense to leave our bodies so speak words of love and gratitude, even if your loved one seems unresponsive.


BE loving in what you do


Let your heart lead your actions. Maintain a peaceful environment that reflects your loved one’s preferences like playing their favorite music or filling the room with scents they enjoy. Hold your loved one’s hand, stroke their face and rub their feet.


Being present and practicing stillness with your loved one is a powerful way to show love.


Resources

How to Recognize When Your Loved One Is Dying


What to Say to Someone Who is Dying


I See Dead People: Dreams and Visions of the Dying | Dr. Christopher Kerr | TEDxBuffalo


No Death, No Fear: Comforting Wisdom for Life by Thich Nhat Hahn


© 2020 Conscious Caregiving. A presentation of The Living & Dying Consciously Project