Check out Death over Dinner, a non profit that offers a great interactive website for designing a dinner party to talk about death. I found a video on youtube that walks you through the Jewish version. If you go to the website you will find the original version. They are currently working on a version for doctors and nurses (YEAH!!).
I first started following Claire Wineland after her TED talk went viral many years ago. She is amazing and such an inspiration. She has always been so real, so authentic, and so open about facing life and death with cystic fibrosis . This past week she opened up about her declining health and decision to pursue a lung transplant. It is so refreshing to see someone talk so openly about the realities of having a transplant and her rational for choosing not to have one in the past. She offers a unique perspective as a patient who has probably witnessed many friends go through all the complications of lung transplant. And as always she is facing death with her eyes wide open. Love to you Claire!!
I was first introduced to Barbara Karnes in nursing school with her little blue book on the dying process. She is so inspirational! During mom's transition period, the hospice nurse provided us with another one of her little books, The Eleventh Hour. The most amazing little book that offered so much support in the days and hours leading to mom's transition out of this life. It really provided me with the words to help both myself and mom for her journey. Somewhere between work and school I'm going to purchase this DVD and start presenting in the community with a Q&A session.
Too often palliative care is not discussed until days or weeks before death. Even in the hospital setting, it seems to be treated as hospice. "Palliative care is whole-person care that relieves symptoms of a disease or disorder, whether or not it can be cured. Hospice is a specific type of palliative care for people who likely have 6 months or less to live. In other words, hospice care is always palliative, but not all palliative care is hospice care". (AAHPM, 2018). I strongly believe palliative care should be discussed at the beginning of the cancer diagnosis and a relationship established with that team. The lovely Polly Samuel discusses her journey with the palliative care team and being completely present in her dying journey.
The first days and weeks after her death my feelings were just numb or put in the background as I stayed busy with my parents financial affairs and navigating my dad's subsequent 24/7 care at home .It wasn't until February when dad's placement occurred that I was actually able to take a breath and start to reflect on the last few months, the weeks leading up to her death. At this point, I really had not been able to really process the depth of her permanently out of my life. First it was just despair without any further thought of her not in my life. Just utter despair that she was dead. Flashes of me trying to put her favorite lipstick on her plastic lips from the viewing. I hated that she did not look herself. Trying to lower the teased up hair at the funeral home...I forgot to put her earrings on. I forgot the pearl necklace. The dress was crooked.. mind just racing those first few weeks.
I now think about how much we really took her love for granted.. She always put us first. The first month after she was diagnosed, I slept in her bed with her, trying to stay as close to her as I could. Now her bedroom is as close as I can physically get to her. The scent of her is gone, but I still see remnants of her as I clean: strands of her hair all tangled up in her bathtub faucet, radiation stickers stuck on a dresser, hormone patches on stuck on the tub.. .
After work, I went to Dillard's to bra shop... So many memories of going to Dillard's with mom. It was another breakdown, poor sales lady. This new reality without mom IN it finally hit .
In my mama's bed on this lazy, wet morning. Looking outside her bedroom window as the rain comes down and birds are chirping. Laying flat on my belly with my head turned toward the treetops covered in fog and my hands tucked under me. I can't be in this position without thinking of mom. We had a lot of similarities, two of them were our love of baths and how we slept. This was one of her favorite positions. In one of her last moments of clarity before she went unconscious, with a determination in her voice, she asked me to get her on her stomach. She had been on her back for weeks. With help from my sisters we managed to turn her on her belly. It was difficult because at this stage she was nearing death and unable to move her body or her head by herself. I somehow knew this was her last surge of energy. She was choosing herself (thankfully), and wanting to be in that position that brought her comfort. We were only able to keep her in that position for a short time for safety reasons but it was just enough to satisfy her.
My mom had been hearing about home funerals since 2005 when I was living in San Diego and I stumbled upon Thresholds. Mom grew up outside of Camden, a small southern town, and had been to many home funerals as a child and young adult. I don't believe there was a lot of embalming but I can't be for sure. When I would talk to her about her own funeral plans, she had no interest in a home funeral. She liked the idea of a simple wooden casket but that was all. She wanted the full works. Even after I went into detail of the embalming process (I was graphic) she would not budge. I had hopes when the time was near (this was over 5 years ago) she would change her mind. She didn't.
Having her at home on hospice at already been a huge blessing to all of us. I was grateful every day she was not in the hospital. But, I still wish I could have convinced her to not be embalmed. Mom's face was so radiant and luminescent a few hours after her death it was hard to see the changes that came with the embalming. I would have much rather seen her in her natural state and a direct burial. I had to shut my mind off so I would not think about the physical process and violation of her body to complete the embalming process.
My maternal Grandma died at age 94. When she was 90 she bought a beautiful wool dress and cashmere coat at Feinstein's that she said she planned to be buried in. She danced in that dress for her 90th birthday party and we have wonderful memories of her in the dress and a fancy red hat. The last time I saw her, about 4 months before she died, she told me she had lived a good life but she was tired and ready to go. At her funeral service, we heard stories about her running around town days before her death. She was seen at the grocery store, she had gone to church for chair aerobics, and had her nails done in "funeral pink" at the salon.
My mom on the other hand, talked about being buried in crisp, white cotton pajamas. She loved the color white, lounging in pajamas all morning, and sipping a cup of coffee. When I spent time in Bangladesh, I had three pairs of white pajamas made for her. They were thread bare when she died. About three months before her terminal diagnosis, she changed her mind about the pajamas as she did not want to be "cold underground" and wanted something warm "like her mama wore". Two weeks after her diagnosis she insisted on going to Feinstein's and finding a dress like grandma to be buried in.
Since starting this blog, I have always vacillated writing about home funerals versus exploring topics related to dying consciously. To me they seemed to be intertwined yet at other times completely separate. So to keep things simple I made my focus be on home funeral education.
Death and dying has been a constant presence in my life these last few months. Facing your own approaching death or that of a loved one is a journey everyone must face at some point in their life. Over the last three years, a large portion of my personal spiritual work has focused on the spiritual aspects of the dying process. Some of teachings occurred as part of my death midwifery training and some happened coincidentally with my spiritual studies. As I was introduced to these ancient practices, I would think to myself that the readings were preparing me for my mom's death. My mother had been given a "clean bill" of health three years ago after radiation treatment for a vicious squamous cell cancer of the face. After 30 days of radiation, my mom consistently received "clean pet scans" for the next 3 years. The cancer scare was a reality check for all of us and made me acutely aware of my mom's mortality.
In October 2017, mom was diagnosed with metastatic cancer. At her biannual PET scan, suspicious areas glowed in her lymph nodes, esophagus, right adrenal, aorta, and right lung. The squamous cell we thought we had successfully eradicated, had been slowly eating her up inside these last three years. With a very poor prognosis (after full work-up and biopsies), we chose a 10 day course of palliative radiation and the day after, we drove to her childhood home and entered hospice at home. My mom's death journey out of this earthly life ended January 1, 2018. It was a whirlwind of emotions from anger to exhaustion to despair. But at the very end, all that was left was love. She was luminescent in death.
I'm not sure how much of this journey I'll choose to write on this platform but know it will be on facing death with your eyes wide open. Both in sickness and in health.
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Beautiful children's book on death
Legal information is not legal advice. I am not a lawyer. I am still in the early stages of navigating the obstacles facing Arkansas families wishing to care for their own dead. I have done my best to provide the most accurate answers to the most common questions. As I begin work with Arkansas families and encounter new situations, I will update /modify answers as needed. If you encounter information that you believe to be incorrect, please notify me so I may research the issue. THANK YOU FOR YOUR SUPPORT!