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.
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.
I was okay without a home funeral. The need for a home funeral for the immediate family was not essential as we spent 24/7 with her during the last months of her life and were at her side as she transitioned to the other side. The reality of her death was real to those beside her, we mourned. If there is one regret I have is that I was not able to convince 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 at the visitation/burial. It was difficult to see the effects of the embalming on my mom's features. Because of the multiple, reconstructive Mohs surgeries over the years, she had little extra neck tissue to be pulled so her face was very tight, making her beautiful full lips look like a duck and her face just not look like mom. Her jaws were wired shut --also affecting her facial structure. As I tried to put her favorite lipstick on, it would not stick to her lips as they had a hard, plastic texture ( from embalming fluid?) that would not take the color. 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 one comfort was that the embalmer was a long time acquaintance of the family and is kind, professional and well-respected member of the community.
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
I discovered a wonderful book by Peter McWIlliams, "You can't afford the luxury of a negative thought: A book for people with any life-threatening illness- Including life". In one section he gives a a How to Die list It's a list of good advice to do NOW whether you are healthy or sick . Here is an excerpt:
1. Get things in order. (pay debts, give things away you don't want or need)
2. Make a will. (including a living will)
3. Say goodbye. (tell people you love them)
4. Don't spend time with people you don't want to spend time with.
5. Spend time alone. (reflect on your life, make peace with it, mourn the loss of your life.
6. Enjoy yourself. (make a list of things you want to do /see and do them!)
7. Relax. (Do nothing)
8. Pray. (Listen)
9. Enjoy each moment. (appreciate what is here and now)
10. When it is time to go, go. (let go)
Peter Mc Williams was an amazing man and prolific self-published author. Check out his website and his books
PERSONAL HEALTHChallenging the High-Priced Funeral Industry, More Americans Are Choosing Home Funerals and Death Midwives
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!