She’s walking on a people mover. You know, the moving sidewalk in an airport. My mom finds herself going from blue to the sunlight. A few days ago she was alone, yesterday she saw her Opa, her father, and a beloved minister, who died decades ago, on the people mover. Wonder when or if she’ll see her husbands. She says she’s been forgiven for her worst transgression. Thank you, Lord. Today she speaks about furling. Furling?! Like a flag, I ask? Yes. Who will I be given to after I’m furled. She doesn’t want me to hurt. From you dying, I ask? No, that’s life. You can handle life. Then she drifts off. Her phrases have gaps of 30-90 seconds. She usually picks up where she left off. This takes listening to a new dimension. She doesn’t ask. how will I know that I’ve died? anymore. Her eyes are always closed. She’s gaunt. Her brow is smooth. Breathing regular. I’ve known this woman all my life. Oh, ma.
Shrinking world, shrinking control. As my mom progresses through this ending period of her health journey, she needs more and more help with the basics. She demonstrates her customary approach to life by extending her arms out wide. Now she shows her life by hugging herself. It’s all about me now. She wants to finish her goodbyes and be pain-free. She hasn’t let go of concern about her safety. With 24/7 care, one caregiver is her friend. They trust each other implicitly. The others – agency caregivers – can be familiar, trusted regulars or people present one time for one shift. My mom checks her meds carefully. Even wanted a watch with bigger numbers on the face so she could check the time for meds. She checks every pill. She calls me or my sister if she’s not sure. Pain medicine is a challenge. The agency caregivers can’t really give medications, they can only show her the meds in the pill-box or pill bottles and then put them in her hand to take herself. She has to ask for breakthrough pain meds and feels unsure of her allowed schedule. The tension between pain relief and lucidity. This tension increases as she anticipates my son’s and my visit next week. Wanting to be pain free and lucid for us. Actually, she’s a tough old broad, vital signs stable, laughing sometimes, watching Blue Bloods with my sister. Seems like my mom’s defining features come out in high relief during this period. Courage, resourcefulness, not wanting to be left out or surrender control, humor, adaptability, perseverating, love for family and friends. Tart and sweet. Wise and child-like. Shrinking world, shrinking control. Oh, ma.
Today my mother said this was a once in a lifetime experience. Ha. What a sense of humor. Last week she talked about the 5 P’s of her life – Pillow. Pee, Poop. Pill, and Pain. I’m laughing and crying. Six weeks ago she went to the orthopedic doc wondering about her sore knee. She didn’t want surgery. He wrote her a prescription: You can dance. Then he told her if it hurts too much, do less the next time. This morning I asked her what she was doing for fun. She said talking to me and my sisters. When I reminded her about the ortho prescription, she said, I could still dance with Loretta-a few steps anyway. Once in a lifetime experience.
My mom is saying goodbye. Goodbye to family, friends, and now peripheral health team members. She hates goodbyes, more than dogs. She’s been mortally afraid of dogs since a german shepherd jumped on her when she was in hiding more than 70 years ago. A deliberate end to the journey. She’s giving away her possessions, too. Mind sharp, energy flagging, pain surging. Yen for everything, yet eating mere morsels. The 8-year-old in her 62-year-old boy tells her to finish everything on her plate. Heart wrenching to hear her say goodbye to immediate family especially the guttural sobbing when they leave. I just left, going home across country, returning in 3 weeks when my oldest son comes. She’s waiting for him. Then, she says, she’ll have had enough. I couldn’t say goodbye. I’m not ready. Makes sense that this fighter throws in the towel. A holocaust survivor, my mom was an expert denier. No denial now. “I’m old. I wouldn’t survive chemo or surgery. Let’s call it a life.” Some end the journey suddenly – heart attack, trauma, aneurysm. Some fade with dementia. Mom is going to call it a life after her goodbyes.
My mom is failing – pancreatic cancer. I’m struggling with the balance between her desires and her safety. I firmly believe in Empowered, Equipped, Engaged, Enabled
individuals on the health journey: e-patients
as described by the Society for Participatory Medicine
. I also believe in Using Power Honestly, Wisely, and Respectfully
as written in the Advocates Way
of Advocates, Inc.
So when my mom says she doesn’t need help, yet I see that she’s unsteady, has had several near misses – almost falling, wants to stay in her home, and has varying degrees of self-awareness, mental abilities, I’m concerned about her safety and ability to make a safe decision. Thankfully, we avoided disaster, after coordinating with several people to be with her and offer the same feedback: You need 24/7 help. In a period of clarity she agreed and now feels relieved.
This tension between rights, dignity, and safety repeats itself everywhere. I experienced it as a parent, as a nurse, as a patient myself, and as a caregiver. I didn’t let my grandson run across the street, rather holding his hand and instructed him in good crossing habits. For ourselves and those with whom we share the health journey, we can acknowledge the tension with mindfulness and respect and get help maintaining that balance.