I have never died, so this entire book is a fool’s advice.
On the first page of her new book, Sallie Tisdale writes: “I have never died, so this entire book is a fool’s advice.” But with her knowledge, experience and kind Buddhist heart she explores many aspects of dying and death easily and softly. Wanting to be a writer she knew she needed a regular job to support herself and chose Nursing. Thirty years later she is a Palliative Care nurse and a gifted writer.
How you can get ready
“This book is about preparing for your own death and the death of people close to you.” Dying people often speak symbolically of traveling, a need to pack, catch trains, get to a new place. She likens her book to a death travel guide, finding out about it, being comfortable with it, learning what happens next. It is a book about “how you can get ready.”
She writes clearly about communication with those who are dying: listening is the most important part.
If you are a caregiver, she advises, be a gatekeeper, set boundaries, be authentic, know your limits. Helpfully, she lists many examples of things best not to say. She describes what to expect in the last months: handling fatigue, pain, toileting, nausea, loss of appetite, depression.
Tisdale also elaborates on the last weeks and describes common symptoms such as shortness of breath, and slowing of digestion, with the rule: do not force food or fluids, and how hard this can be for families. Also, “the dying person may not want to talk any more, may not want you near, but he doesn’t want to be alone” Caregiving becomes a “solitary walk.” She also describes the crisis that may be created for families and decision makers by technology, including defibrillators and ventilators and other medical interventions, that can make choices at the end of life very difficult.
Sometimes physicians are not helpful and the family needs to be guided by what the dying person would want if he or she could speak and as specified in their Advance Directive if there is one.
Last Days describes experience at the bedside, whether at home, or in a nursing home or hospital. It includes a discussion of confusion and agitation, worsening physical and existential pain, and the use of sedation. She also notes the “death bed phenomena” of spiritual experiences including visions, bright lights, other worlds, and unseen visitors. She describes clearly what active dying looks like including changes in consciousness, breathing, skin color, organ failure, up to the moment of death and hours after. Then starts the death care process including all the burial and disposal options that are available today. She ends with a chapter on grief and then joy. Her appendix includes preparing a death plan, explanation of advance directives, and organ and tissue donation.
This book is a very thoughtful and inclusive compendium of knowledge needed to care for a loved one who is dying, presented in a gentle and easy way.
Her very last entry concerns assisted death. In California and several other states, this is legal and referred to as Medical Aid in Dying or MAID. In our culture we value autonomy and it is almost a mandate that people take responsibility for their own lives. It follows that we allow people the room to make their own choices about how they die. It is the mission of End of Life Choices California to assist Californians with terminal or chronic illness by providing education, accurate information and access to all available legal options concerning their end of life wishes. It is this freedom of choice that we at End of Life Choices California seek to honor and uphold so that everyone can exercise their own choice.
Judy Schnack, a retired AIDS and Hospice nurse, MSN, RN, FNP, is another of our esteemed Client Advocate Volunteers, and one of our first trained, in the summer of 2019. She has facilitated a grief support group and has also presented Advance Planning seminars for the City of Encinitas. She has given presentations on behalf of EOLCCA, has counseled numerous EOLCCA clients, and attended several client planned deaths. Judy and all our volunteers continue to work remotely during this pandemic in response to the almost daily calls and email requests for information on medical aid in dying and support from terminally ill individuals throughout the state.