End of Life Care and Wrapping Up Unfinished Business

I now find myself in Hospice Teams diligently assessing each organ system during their weekly visits. Particularly, the scientific data remains of interest. Is there an advance of the disease? Do I have an adequate exchange of air? Is my brain functioning to the degree that I can continue communicating and exchanging meaningful information that can help me and others?

Despite being a hardhead and having a habit of striving for independence, perhaps I, too, can change. I now believe learning about people and their unique talents and gifts is valuable until the end of life. I am even finding that some of those talents have been long unknown  With remarkable honesty and humility, I admit that my need to be perfect may have even frustrated some of the beauty and talent of others around me.

Others helping me helps them, too

I have even learned that when my neighbor calls offering help, that moment may help them as much as they have helped me. Now that I am more open to teaching about my experience, conversations about dying become easier. As painful as it may be, I hope other dying people and their families can relate.

While it is well known that death is a subject we readily avoid, reducing fears could have benefits. There may even be an opportunity to reevaluate our approach to life. All of a sudden, I can see other points of view and perspectives that allow me to be more open to the thoughts and opinions of others.

Feeling "Earthbound"

Some of my closest friends call me Earthbound, meaning I am still not finished here. What are the leftover tasks or items left undone? Is it that I am not ready to leave Earth and start my transition to Heaven, or is it their inability to accept the fact that I am dying? I have one such friend who tells me honestly that she "cannot bear the thought that she will be unable to call me for advice or tell me how much I mean to her."

The best I can offer is my utter and complete uncertainty. Fear remains present about the unknown ahead. I have no known regrets but a tremendous sense of loss in the pit of my stomach. There is no doubt about leaving my incredible husband, children, grandchildren, and loving family and friends.

Spend this time wisely

I am realizing that it is a time to spend time wisely. I am asking caregivers to see this last bit of life as a sacred place, one where I, the dying person, also have lessons to learn. We all know that sense of forever missing, a significant void in a family or life context.

However, are there lessons to share before we go? If this is truly the end, what wisdom do you wish would follow you? Please take the courage to ask the questions or give insight you want to share. Unfinished business can be as simple as balancing a checkbook or learning to create a willingness to ask for help.

It seems my family and I have moved past our initial shock of my never returning to be the person I used to be. The irony is that I was viewed as a bit of a "badass," as my oldest tells me. Lovingly, he explained I refused all opportunities for pain relief "to keep my mind intact." That may be the joke of a lifetime since my mind diminished readily with each move that the cancer made. So now I am medicated and carefully find space to write that has some semblance of reality.

Where do I go from here

It is increasingly clear to me that I am fighting a losing battle. My only problem is that I am not one to accept loss easily. Each new day inspires me to reach a better understanding if only to find ways to control this out-of-control mess better. Granted, I did all in my power to be different this time. I even practiced relinquishing old ways of being, typically going to the woods myself to find the answers. Somehow, I felt this experience was different, and I would need to include anyone I could help.

The great awareness

I am embarrassed to admit that it took a total mind/body shutdown for me to recognize that death was indeed around the corner. Luckily, I was in a place where I could be safely placed in a chair, waiting for more help. Upon awakening, it was time to join together as a family and get to the nitty-gritty of imminent loss.

New steps included a complete evaluation of my grief process. This time, I included all the people I love and what we each believed was about to happen. Each family member agreed to a counseling session, a time to tell each other what we received along this life of ours. We agreed we were more fortunate than many who didn't have the ability to speak deeply. Of course, all this means an even more significant loss.

Dr. William Worden, a Grief Psychologist, reminded me of the critical phases to consider. Since I tended to use avoidance so well throughout life as my number one coping measure, that had to be the first on the list  Dr. Worden goes on to ask us to:

• Accept the reality of loss
• Acknowledge the fear of all the changes
• To consider a life that will be different
• Begin to live that life without the lost person

I hoped my family could implement this while I was still here, but there are limits. There had to be times of anger or other emotions yet to be expressed; we were hardly perfect. Yet we agreed that, if nothing else, we had the foundation to go on.

Maybe I'll never know why I'm still here

Yes I am confused why I am still in the same spot I started when I went to bed. I retrace many steps. I again reach out to additional people I may need to forgive or gain forgiveness. Believe it or not, they are out there. While I feel ready to say my final farewells, I love this life and the people I have been blessed to surround me. I hope you take just one action for each of you who read my words and are touched by my reality. At the very least, touch someone who truly loves you.

Editor’s Note: We are extremely saddened to say that on August 9, 2024, Ellen Reed passed away. Ellen’s advocacy efforts and writing continue to reach many. She will be deeply missed.