Clyde in New York asks: I am a single mom with two grown boys, ages 28 and 32. Every time I try to speak to them about what I want when I die, they shut down, saying I am depressing them. I want them to be prepared as we are an extremely close family. I have written a living will and have told them I want to be cremated, but your film made me realize that there is so much more to the dying process. I want this to be a beautiful process, not one of fear and depression. I also found out last night that New York does not permit dying at home. What can I do to make this a possibility of choice in my state? Thank you for the work you are doing; you have truly changed my perspective on my passage. I plan to spread the word.
Jerri Lyons: It is such a beautiful gift to your family to have written out your living will. It may be difficult for your sons to hear you speaking about your eventual death at this time, but it would be much more challenging if you were to die suddenly and not have discussed anything. When my good friend Carolyn died suddenly, all of her family and friends were in shock, but then we discovered that she had willed us an enormous gift. She had left instructions with a close friend saying how she wanted to be taken care of in the event of her death. She did not want to be turned over to a mortuary, but rather she wanted her friends to care for her body and hold a ceremony in her home. We didn't have to try to figure out what she would have wanted while we were in a state of confusion and grief.
Did your sons watch the documentary? If not, to break the ice, you could describe it as an interesting idea that you just learned about. No one wants to think about his mother dying so I can understand their desire to shut it all down. It would be helpful to approach them with your own need to talk about your wishes. Let them know that you do not expect to die anytime soon but that it would help you to be at peace while you are alive. It may sound strange to them, but I believe we can all live our lives more fully when we are able to face our own eventual deaths and plan something that involves participation by all of our friends and family. Let them know what you would like and ask them if there is any way they would be willing to help you. Think about capturing their talents. Would either of them be interested in decorating or building the casket, creating a collage with photos, putting together your favorite music, playing a musical instrument, reading something you love?
When you say you cannot die at home in New York I must assume that you mean no one can have a home funeral in New York. I believe one can still have a home wake or service if a person is expected to die from a diagnosed illness or malady and under doctor care. A death certificate must be filed within 72 hours and signed by a funeral director. There will be a high non-declinable fee involved, which is the part that is different than most other states, but I believe you could still have family participation at home before the body is taken away.
Changing laws involves letters to government officials, assemblymen, senators and anyone you could engage in your efforts. Rally friends to write letters and get a copy of the film to lend to as many friends as possible. Share your feelings with friends and discuss death whenever you feel it appropriate and maybe even when it is not. Stay in touch with the Funeral Consumers Alliance to get support for legislative changes.
[For more information about New York law, see Lisa Carlson's responses in the State-Specific Legal Questions: New York (open in new window).]
Sheila in California asks: What if you want this sort of funeral but your family seems to find it too hard for them?
Jerri Lyons: In an "Advanced Health Care Directive" a person can designate a family member to help with health care decisions should they become extremely ill. They can then appoint one or more close friends to help carry out their funeral wishes. It may be too difficult for close family members to do so or they may not be in harmony with your wishes. One woman appointed her close friend to carry out instructions for her home funeral. Family members were consulted and participated in the home funeral, but didn't take the lead in carrying out the arrangements. If you are concerned about alienating family members, look for ways to compromise or include them. It is a time to bring people together, not make them feel left out. Building or painting a casket can be done anytime in life. You could purchase one and ask them to help you decorate it as an art project or have it be a bookcase, coffee table or other piece of furniture in the interim. The more comfortable you are with your plans and discussing death the easier it will be for those around you.
Wanda in Texas asks: Are there any pamphlets out there that can help relatives see that we don't have to go by conventional funeral procedures, something to introduce them to a home funeral and to explain a bit of the history of this type of funeral?
Lisa Carlson: When I was in my twenties, my grandmother tried to talk to me about funeral issues. I quickly got nervous and shut her out with, "Oh, Grammy, you're not going to die." How I wish now she had insisted that we talk then, because we never did later. We teach our children about money, politics, religion, and maybe sex, but we do a terrible job teaching about death, dying and funerals. Humor is one excellent way to break the ice and nervous tension. (A mother-in-law called her daughter-in-law and said, "I've decided I want to be cremated." "Great," said the daughter-in-law, "get your coat on and I'll be right over." ... Or ... Don't knock on death's door. Ring the bell and run — He hates that. There are more jokes, plus helpful information, in "I Died Laughing: Funeral Education with a Light Touch," available from the FCA bookstore.)
One of the important things to check when you talk with family members is to find out what they might want or not want. Yes, tell them what you prefer, but check out how they feel about your choices. One gentleman had to either educate his daughter or change plans when he found out she objected to his body donation to a medical school. If cost is a concern, make sure you find out funeral, crematory, or cemetery costs ahead of time and share that information. The Funeral Consumers Alliance website has a number of helpful pamphlets to promote family discussion. Two in particular come to mind: "Simple and Cheap, My Father Said," written by the daughter of Supreme Court Justice Hugo Black. Wonderfully humorous, too. Another is one I wrote, "Lay Me to Rest in a Plain Pine Box: One Mother's Letter to Her Children." Both are on the FCA website under "Frequently Asked Questions & "How-to" Pamphlets."
Nancy in Vermont asks: This was a terrific program... How should I start the planning process?
Jerri Lyons: Find out where you can pick up or purchase an "Advanced Health Care Directive" in your state. These used to be called Durable Power of Attorney for Health Care. Often you can obtain one from hospices, hospitals, some agencies for seniors or other health-care related organizations. Final Passages sells a workbook called "Preplanning for a Home or Family-Directed Funeral" for helping you plan your last wishes. After writing down your choices and desires, make copies and share them with other family members. It's a great way to get a discussion going about death and addressing everyone's fears. When doing this exercise with my 84-year old mother, I discovered her current favorite music and some of her values and lessons in life that she wanted to pass down to her heirs through her "ethical will." Lisa Carlson's book "Caring for the Dead, Your Final Act of Love" will give you insights and information to further prepare you for home funerals and the laws in your state on this subject.
Masha in Pennsylvania asks: What would be the middle-of-the-road approach for a family that doesn't want to relinquish total care to a funeral home, but yet can't see doing it all themselves?
Jerri Lyons: What I refer to as a "partial home funeral" or in-home service, wake or vigil, is where the family participates in the care of the deceased at home, from bathing and dressings to visitation, building or decorating a casket and ceremony. The in-home care by family is simply extended anywhere from several hours to one or more days after the person dies. When the family feels ready they call a funeral home of choice to complete necessary paperwork and transportation of the body to a crematory or cemetery. This is an excellent way for close family to have time to begin the grieving process, express emotions in the privacy and comfort of their own home and then receive help from a funeral home for the rest.
Keep in mind that this applies only to those people who are diagnosed with a terminal illness and under a doctor's care. Any sudden, unexpected deaths, accidents or suicides must be reported to a coroner immediately. People who die in a hospital or convalescent home may be brought home for "partial home funerals" as well. Some states require a funeral home to transport the body or file end-of-life paperwork before a family can transport.
"Unprepared" asks: The documentary showed funerals of anticipated deaths. I can understand how the demands of filmmaking required that. But what I am seeking here is information on how to cope with sudden death. The most likely deaths of those close to me right now would be accidental because we are relatively young and in good health. What guidance can you offer to help prepare for sudden death? And especially what about coping with the grotesque? Who can help a family intimately prepare the body and how can one find them on short notice? I can imagine facing grim remains rather than leaving them to the funeral home, but I'd like to have a guide, a doula (from midwifery: a birth supporter). Is there such a person?
Lisa Carlson: Probably an unanticipated death is more easily resolved with the family if there is family participation, regardless of the condition of the body. Because they haven't started saying their goodbyes, there is a greater need to see the body to come to grips with the reality of death. The first death I dealt with on my own was the death of my last husband, who committed suicide at the age of 31, leaving me with two children ages three and five. He was a wonderful first-grade teacher, but given what he was paid, our daughter got free lunch in school. I didn't even know if I could cash his next paycheck. So I initially chose to handle his death without a funeral director for financial reasons. If I'd had money, I'd have given away what turned out to be a truly meaningful experience. John shot himself in the stomach (where he'd had a psychogenic stomach pain for months that had been hard to control with medication), so there was necessarily an autopsy. Some medical examiners are very callous about the condition in which a body is released. It always helps to let them know the family is handling things when that is the case. John had wanted to be buried at home but the ground was frozen. So a friend and I drove his body to the crematory that next night after it was returned from the autopsy. I had a need to see John again, so we got a screwdriver out from under a seat in the truck and opened the box. Because John looked very "dead," it was easy to let go. If he'd been embalmed and returned to a life-like condition, I'm sure I would have bargained with God to wake him up.
The one mistake I made was to rush his body off to the crematory. That's simply because we've lost the common lore and acceptance about home funerals. In hindsight, I wish I had taken John's body home for a day or two so others — including the children — had their goodbye time, too.
Certainly every situation is unique and personal needs are varied. But I see nothing wrong with facing the circumstances of death openly — the good, the bad, and the ugly — or at least having a choice to do so. The known is usually far easier to accept than the unknown.
Jerri Lyons: In choosing to be a death midwife, a doula and a guide, I have found myself called to assist in many challenging and tragic circumstances. I have been beside friends and families dealing with sudden death; heart attacks, suicides and accidents. I never knew that I would have the courage to do this, but I have learned through the years that I always have angels walking beside me, that prayers do make a difference and that my heart and soul are filled by the immense gratitude I receive for being willing to help. When someone dies suddenly, we are in shock and we need time to make sense of what happened, to make the death real, not just in our minds as an idea, but something tangible that we grasp with all of our senses. Bruises, wounds, and autopsies can seem insignificant when compared to the immense amount of grief, love, anger and other emotions that may be present and needing expression and release.
When a 19 year-old was hit on his bicycle by a car and killed, his mother could only think of bringing him home to hold him in her arms one last time. She didn't care if he was banged up and had some broken bones. The autopsy and wounds were bandaged and he was dressed for an in-home wake. When a friend's husband shot himself because he wanted to end the suffering of cancer, I was right beside her while she bathed and dressed him. Some people have said it's the hardest thing they have ever done, but they found it extremely comforting and couldn't imagine strangers caring for their loved one with the same love, compassion and tenderness.
Lois in New York asks: My family and I are almost all city-dwellers without large apartments or houses. While this looks like a warm and loving gathering of people to say goodbye and let the parting sink in, what kinds of facilities, other that the machine-like funeral industry are available to people like us? Are places rentable for several days for family, friends, and the deceased to be in togetherness for a while without being pushed through by the next funeral? Where may people be interred, and what are the vaults and their costs like? Are there comprehensive references and guides for these things?
Jerri Lyons: One family I assisted moved their friend's body from a smaller home to another friend's larger home for a three-day vigil. This is not always possible and sometimes a smaller more intimate family group will facilitate the first hours or days of the home or apartment funeral and then plan a memorial service in the future to include an extended family. There are starting to be some hospice live-in facilities that allow families to continue the care following a death. A "Friends House" assisted-living and skilled-nursing facility run by Quakers was very flexible with their policy when a man died. They told the family he could remain there for 24 hours. Most want a person's body to be removed within four hours. The growth of the home funeral movement and a demand for more family and personal involvement will naturally lead to the creation of sacred gathering spaces much like the home birth movement has created birthing rooms for family members in hospitals and midwife centers.
Pat in Pennsylvania asks: Do people who have their loved ones viewed at home have a more difficult time afterwards, as far as associating the room where the deceased is viewed with death? Is there any reason you would advise someone not to have the funeral and/or viewing at home?
Jerri Lyons: In the hundreds of families I have assisted with home funerals I have never had a family report difficulty of this type. With an expected death a family is often relieved that their loved one is out of pain or at peace. Quite often people express and feel a mixture of emotions both of joy and celebration and deep sorrow at the loss of the person. The room chosen for the deceased to be "lying in honor" will often be cleansed and transformed into a beautiful and sacred space with soft lighting and draped fabrics, familiar and special objects, creating an ambiance of honor and dignity rather than negative feelings and associations. People experience great comfort in being near a deceased relative or friend in familiar surroundings while they are adjusting to and beginning the acceptance of the death that has just occurred. Most everyone finds that their fears about death are allayed, leaving a very positive memory of the whole event and immense love in their hearts and minds.
Holly in Massachusetts asks: I am a forty-year-old mother of three and a fourth-year student at Harvard Divinity School. When I entered graduate school with a strong interest in death and dying and end of life care, my intention was to study ethics. Over the past six years I have worked for three years in hospice as a volunteer, one year as a student chaplain (and completed a CPE unit in a major hospital as well). Given that I will graduate soon, I have been trying hard to define my career goals. I am wondering if you could provide more information about the profession of death midwifery to me. What is the training, the typical service a midwife provides, are there organizations I should be in touch with, etc. I believe the work described on PBS is what I have been moving toward all along.
Jerri Lyons: Death midwifery covers a broad area. Some people wish to focus on the care of people at the end-stage of their lives and to assist them in the transition from life to death. It can be like a meditation practice or a dance in which one sits and listens, using one's intuition to connect with the dying person and knowing when to be quiet, speak, sing etc. much as a mother connects with her infant. A bond is formed and a synchronized rhythm of breathing may occur. It is the practice of being present to all that exists in the moment and allowing for any kind of healing to happen (different than a cure). A goal would be to ease someone's pain, help them feel that their life was full and meaningful, and to assist them in a peaceful death. For yourself it might be to appreciate the gift of serving the dying person and feeling more alive. My focus up to this point has been more about helping people plan their final journey, treating it like an adventure and then assisting the family to carry out the final wishes of the deceased. Either way, it is the great privilege of walking beside and honoring those who go into the great mystery place before us.
Zen Hospice of San Francisco offers a program in end-of-life care for the dying that includes practical and spiritual teachings. Final Passages offers a three-level series in home funeral guidance with a similar practical and spiritual approach that encompasses all races, religions and cultures — learn more at the Final Passages website.
Cathy in Colorado asks: My daughter died five months ago and I would have loved to know about this option. How would you go about helping others with a home funeral?
Jerri Lyon: Read Lisa Carlson's book "Caring for the Dead, Your Final Act of Love," Final Passages Handbook on "Creating Home Funerals," or take our course series to become certified as a home funeral guide. You may also want to post a notice in a local paper (one that has open minded views) to attract people who are interested in discussing new ways to view death and dying and who may want to begin a support group to help educate others about their options and lay ground work for helping others with home funerals.
Harriet in Texas asks: How do you locate someone who is able to help you with a home funeral?
Jerri Lyons: Final Passages has been offering education and workshops about home funerals for ten years. There are a number of people forming organizations and groups to educate and assist others in home funerals in various parts of the country. We are in the process of compiling a resource list for all of these groups and plan to have them posted very soon. Watch for them on the Final Passages website.
Deborah in Colorado asks: I was so, so moved by this. How do I help in this movement?
Jerri Lyons: If people wish to participate in more natural and conscious choices for after-death care, here are some suggestions:
- Start talking to one another about the subject of death.
- Pre-plan your own home or family-directed funeral and share it with your family. (Final Passages has written a fill-in-the-blank workbook for this purpose.)
- Fill out an Advanced Health Care Directive, assigning an agent to carry out your choice of funeral arrangements.
- Open a special account at your bank for funeral expenses with the name of your family member or chosen agent on it so they can carry out your funeral plan with ease versus purchasing a pre-need package from a mortuary or funeral home.
- Inform yourself about the laws in your state concerning home or family-directed funerals by calling your local public health department, Office of Vital Records, Office of Vital Statistics or County Registrar's office. (Or read Lisa Carlson's book.)
- Form a group interested in advocating for consumer's last rights/rites.
- If you are choosing burial for final disposition, ask your local cemetery if a burial can be completed without the use of a grave liner or vault and the body be buried in a shroud, cardboard box or a home-built wooden casket.
- Hold the vision of collectively-owned crematoriums and cemeteries that are ecologically harmonious and affordable for everyone.
- Begin looking at ways you can reclaim your individual right to a natural, humane, sensible and economical after-death care choice.
Lisa Carlson: On the topic of designating an "agent" to carry out your choice of funeral arrangements, let me add one note. About half the states have a personal preference law, or permit you to name a designated agent for body disposition. There's a list on the FCA website. Case law gives preference to the written wishes of the deceased, IF one bothers to go to court. When faced with funeral arrangements, however, that rarely happens. And if a family member objects to cremation or body donation — even if it's the wish of the deceased — the funeral directors won't cremate and medical schools won't accept the body for fear of litigation. It also usually means the funeral ends up costing more, as well. That's why the designated agent is so helpful. Only that person need agree to the plans, and any objections can be overruled by the agent. I think more states should have this provision.
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