Coming or Going
- By: Candace McKibben
Several years ago, my mother, whose dementia limits her communication, used to say clearly and with frequency, “I don’t know if I am pitching or catching.” I took it to mean that she felt confused, though I find it difficult now to verify the origins or meaning of this idiom. I have learned the more common phrase to express confusion is “I don’t know if I am coming or going,” and that is exactly the place I feel with my mother today. On June 27 she had two falls and we discovered a UTI and bump on the head, both of which may have contributed to her on-going confusion and limitations. What has been disconcerting for me is discerning where my mother is on her life journey. As she nears her 92nd birthday, I wonder if she is coming into more life or going into the next one, and what that means for me as her daughter trying to carry out her wishes and offer her the best quality of life.
My mentor and friend, Rev. Charles Scriven, put it in proper perspective when he reminded me that we do not ever know what life holds and must trust in God’s grace, which is sufficient. I try to remember this, but struggle with the practical outcomes of “not knowing.” If my mother is nearing the end of her earthly life, if she is “going,” I do not want to be the one pushing her to get up and dress every day, eat her meals, go to physical therapy, and socialize with the other residents at Westminster Oaks. I want to tuck her in her bed and respond lovingly to what I understand will make her the most comfortable. I want to gather the family and surround her with the love she generously offered us. I want the best comfort measures available and to trust Big Bend Hospice to help me provide them as she naturally transitions.
But if she has just had a setback, I do not want to allow her to stay comfortably in bed each day, growing weaker and less able to make a recovery. I do not want to force her to do anything, but neither do I want to neglect to encourage her to eat and walk and be social if she isn’t going, but is “coming” back. It is the difficult place that many caregiving sons and daughters, spouses and friends, find themselves in caring for persons with dementia, aphasia, or other conditions that limit communication.
As I have often felt in life, the “not knowing” can be as stressful and difficult as knowing, even if what is known is hard to bear. Doing the best we know to do in the moment and relying on our loving intentions and God’s grace to help our uncertainty is what the trust Rev. Scriven prescribes is about. In these days, I have used as a mantra the translation of Psalm 56:3 by a young boy who once said, “When I am a-scairt I will trust in God.”
I recently heard a beautiful story about a mother who was able to tell her daughters what to do for her at life’s end. I can only imagine that the words were piercing and yet healing to these weary adult children who only wanted to do what was best for their mom. She told them, “Please let me go.”
In hospice care, we encourage family members and loved ones, if they are able to do so, to tell their dying loved one that when the time comes, “it is okay to let go.” The idea is to give the person who is dying permission to leave this world naturally and peacefully without feeling obligated to fight for the sake of the family or others. But in this case, the mother gave the daughters permission to let her go. She did not want her family to wonder if they were doing the right thing by not pursuing further treatment.
What a gift she gave her girls! It is the sort of gift that anyone of us who is 18 or older can give to our loved ones as we contemplate our own life end and what we would want or not want regarding medical treatment. It is not about rationing healthcare or hastening the dying process. It is about saying what would matter most to us at the end of our lives regarding our care and comfort. Having conversations with those we love about these issues and documenting what we want or do not want on a living will like Five Wishes, can make the end of life, which comes to us all, less conflicted and more peaceful. If you would like help in considering your own wishes for creating meaning at the end of life, please contact Big Bend Hospice at 850-878-5310 and ask for a PEACE appointment with a trained facilitator. And may we all take a moment to pray discernment and encouragement for those many caregivers who struggle with how best to care for a loved one who is no longer able to communicate his or her preference.