If I Should Get Dementia: What Choices Do I Have?
An Educational & Reflective Guide for Individuals and Families Navigating Dementia and End‑of‑Life Planning
Living With Early Dementia: The Capacity to Choose
Three Paths of Choice
1. Choosing to Die Before Losing Capacity
Voluntarily Stopping Eating and Drinking (VSED)
Inhaling an Inert Gas
This first option can mean sacrificing years of meaningful life to avoid the loss of self that dementia brings—a deeply personal tradeoff.
2. Choosing to Limit Medical Treatment After Capacity Is Lost
- A traditional advance directive
- A healthcare proxy or representative
- Clear instructions such as “If I suffer cardiac arrest, do not resuscitate.”
3. Stopping Eating and Drinking by Advance Directive (SED by AD)
- Allowed: Nevada, Vermont, Arizona
- Not allowed: Iowa
- Unclear: 46 states fall into a gray zone where laws neither clearly permit nor prohibit it.
Questions hinge on whether food and fluids are considered “medical treatment.” Some legal scholars say yes; some physicians say no.
Why Preparation Matters—And Why It Must Begin Early
- You can no longer sign an advance directive.
- You can no longer choose VSED yourself.
- You may no longer qualify for programs such as Final Exit Network’s Exit Guide services.
Advance Directives for Dementia
- State how you want to be cared for at each stage of decline
- Protect your future self from prolonged suffering
- Clarify your wishes around VSED
- Support your healthcare representative in making difficult decisions
Options for Hastening Death When Facing Dementia or Decline
1. Stop Therapeutic Medical Treatment
2. Voluntarily Stop Eating and Drinking (VSED)
3. Medical Aid in Dying (MAID) – U.S.
4. Medical Aid in Dying – Switzerland
5. Books on End‑of‑Life Self‑Deliverance
6. Final Exit Network’s Exit Guide Program
Anyone interested can begin the conversation confidentially through www.transitioningdoula.com, and I will assist in navigating next steps.
A Doula’s Reflection: Honoring Autonomy, Preserving Dignity
- You do have choices
- You are not alone
- And planning now can be one of the most compassionate gifts you give to your future self and your loved ones
Marc D Malamud
Transitioning Doula
At Home With Death
What a Home Funeral Is and How Funeral Homes Can Show Up
A home funeral is not a rejection of funeral service. It is a return to an older, quieter way of caring for the dead, one that centers family presence, time, and responsibility. In a home funeral, the body remains in the care of the family from the time of death until disposition, if possible. Loved ones wash and dress the body, keep vigil, and say goodbye in their own space, on their own timeline, before burial, cremation, or another form of disposition takes place.
For many families, this choice is rooted in values rather than cost. They want intimacy instead of efficiency. They want participation instead of delegation. They want to slow down a process that modern life often rushes. Home funerals offer a way to be present with death without immediately handing that presence over to an institution. When done legally and thoughtfully, they can be profoundly grounding and meaningful.
Photo by DEAD GOOD LEGACIES on Unsplash
Funeral homes sometimes view home funerals as something outside their lane. That framing misses the point. A home funeral does not eliminate the need for professional guidance. It changes where and how that guidance shows up. Families navigating a home funeral still face legal requirements, logistical decisions, transportation needs, and paperwork that can feel overwhelming during acute grief. This is where funeral professionals can play a critical and supportive role.
Support does not require control. Funeral homes can assist with filing death certificates, obtaining permits, coordinating disposition, providing refrigeration or dry ice guidance when appropriate, and offering consultation on after-death care without taking custody of the body. They can explain timelines, legal boundaries, and options clearly, without pressure. They can act as educators and collaborators, honoring the family’s choice while ensuring safety, compliance, and dignity.
When funeral homes support home funerals, they reinforce a deeper truth about the profession. The work is not about owning every step of the process. It is about walking alongside families in the ways they ask to be supported. A profession confident in its value does not fear shared care. It recognizes that presence, knowledge, and respect are often the most important services we provide.
Legal framing: what the law actually requires
Home funerals are legal in all 50 U.S. states, and in most states families are not required to hire a funeral director (there are 9 states that do require a funeral director) in order to care for their dead at home prior to disposition. There is no federal law that mandates immediate transfer of the body to a funeral home after death, there is a timeline for how long they may remain without disposition or refrigeration. What varies by state is not the legality of a home funeral, but whether a licensed funeral director must complete specific administrative or legal tasks, such as filing the death certificate or obtaining burial or cremation permits. In a small number of states, a funeral director must serve as the party of record for disposition, even when the family is otherwise providing care.
This requirement does not prohibit a home funeral. It simply defines the scope of professional involvement. Across all states, families must still comply with pronouncement of death, required documentation, permit timelines, and public health standards. In practice, home funerals operate as shared care, with funeral professionals supporting legal and logistical needs without necessarily assuming custody of the body.
The confusion arises when legality is conflated with familiarity. Many funeral directors were never trained on home funerals in mortuary school, which can create the false impression that they are illegal or inherently risky. They are neither. They are simply less common in modern practice. When funeral homes understand the actual legal framework, they are better positioned to offer calm, accurate information instead of defaulting to refusal or fear-based messaging.
What ethical support from a funeral home can look like
Supporting a home funeral does not mean stepping away from professional responsibility. It means redefining how that responsibility is expressed.
Funeral homes can ethically offer:
• Consultation and education on after-death care, timelines, and what families should expect physically and emotionally
• Filing of death certificates and coordination with certifiers and registrars
• Securing burial or cremation permits and explaining disposition requirements
• Guidance on cooling methods, including refrigeration options or dry ice use, without assuming custody
• Transportation to the place of disposition when the family is ready
• Use of preparation room facilities for dressing or preparation if requested by the family
• Clear, itemized pricing for support services rather than bundled packages that assume full control
These services honor both the family’s autonomy and the funeral home’s professional role. They allow families to remain present while ensuring the process remains legal, safe, and dignified.
Addressing common fears within the profession
Many funeral directors hesitate to support home funerals because of fear, not opposition.
Common concerns include liability, loss of control, fear of doing something wrong, or worry that supporting home funerals will undermine the value of professional service. These fears are understandable, but they are not insurmountable.
Liability is managed through clear documentation, defined scope of service, and informed consent, just as it is in any other arrangement. Loss of control is not the same as loss of professionalism. In fact, offering support without custody often reflects a higher level of confidence and ethical clarity. As for value, families who choose home funerals are not rejecting funeral homes. They are choosing a different form of relationship with them.
Funeral service has always adapted to cultural shifts in how families want to grieve and participate. Home funerals are part of that continuum, not a threat to it. When funeral directors approach them with curiosity instead of resistance, they expand both their relevance and their trust within the community.
Showing up differently does not diminish the profession
Funeral service has never been static. It has always changed in response to how families understand death, responsibility, and care. Home funerals are not a rebellion against the profession. They are a reminder of its roots and an invitation to practice with greater flexibility and trust.
The question is not whether funeral homes should “allow” home funerals. The question is whether we are willing to meet families where they are, even when that place looks different from what we were trained to manage. Professionalism is not defined by possession of the body. It is defined by knowledge, steadiness, and ethical presence.
When funeral homes choose to support home funerals, they demonstrate confidence rather than fear. They show that their value lies in guidance, not control. They affirm that families are capable of care when given clear information and respectful support. This does not weaken funeral service. It strengthens it.
There is room in this profession for shared care, and there always has been. Funeral homes do not lose relevance when families choose to stay close to their dead. They lose relevance when they refuse to adapt. Showing up differently is not a concession. It is a decision to lead with clarity, confidence, and respect. When funeral professionals support home funerals, they affirm that their role is not to control the experience of death, but to protect its dignity while honoring the family’s right to participate in it.
Marc D Malamud
Transitioning Doula
🍽️ When Death Shows Up for Dinner: A Doula’s Perspective on the Conversations That Matter Most
“Let’s be honest,” the voice said. “You were expecting me.”
A tall figure in a simple black cloak sat there — still, steady, and unbothered by the awkward silence it had just created.
Death introduced itself.
Just… present.
Then another voice chimed in — softer, calm, like a breeze sneaking through the door.
A symbol.
A reminder that dying is a journey, not a failure.
From across the table, someone snorted. Actually snorted.
But this figure carries their spirit:
- The man who planned his funeral playlist like a DJ set.
- The woman who said death could wait until she finished Season 6.
- The caregiver who whispered, “If he doesn’t stop snoring, I swear I’ll die first.”
And then, from the opposite end of the table, came a familiar, theatrical sigh.
Tevye.
🍷 And so the conversation began
It was everything we wish more families talked about — across tables, over tea, in moments that matter.
Death asked:
People whisper “passed away” or “lost” or “gone home,” as if the word died might crack the floor.
The Angel asked:
We don’t erase fear — we sit beside it until it stops shouting.
Our patient‑composite asked:
Not emotionally.
Not practically.
Not culturally.
Faces soften.
Shoulders drop.
People breathe again.
Tevye asked:
🍲 Why we host these conversations
but avoiding it often brings unnecessary suffering.
🌙 And here’s what we know for sure:
- When Death speaks plainly, people exhale.
- When the Angel speaks gently, fear softens.
- When the wisdom of our patients enters the room, love deepens.
- When Tevye shrugs, everyone laughs — because sometimes laughter is the only way the heart can stay open.
- And when we, as a company, sit beside you through all of it,
you learn something powerful:
🍰 And as we cleared the table, Tevye raised his glass and said what we were all thinking:
Marc D Malamud
Transitioning Doula
The Environmental Cost of Death Care
The funeral industry has a waste problem, and it is far bigger than most people realize. For a profession rooted in care, dignity, and community responsibility, we generate an astonishing amount of trash, chemical waste, and single-use consumption in the course of serving families. Much of this waste never enters the public eye, because families are rarely exposed to the operational back rooms where the work is done. They see the arrangement conference, the chapel, the service, and the polished professionalism. What they do not see is the volume of waste created in the name of cleanliness, safety, efficiency, and liability control.
The uncomfortable reality is that modern funeral service often treats death as something disposable, and the methods we use to manage risk, control odor, manage trauma, and create “sanitary” conditions frequently rely on materials and practices that are neither sustainable nor environmentally neutral. While parts of this are genuinely rooted in public health and infection control, the industry also hides behind those rationales to excuse systems that are driven by habit, convenience, and outdated operational norms. If we claim we are in the business of ethical care, we cannot ignore the environmental cost of our practices simply because the waste happens behind closed doors.
Photo by Katie Rodriguez on Unsplash
One of the most visible contributors to this problem is the enormous reliance on single-use plastics and personal protective equipment. Gloves, masks, gowns, sleeves, shoe covers, disposable aprons, and plastic sheets are used constantly, and often in quantities that would shock anyone outside the field. There are clear situations in which PPE is necessary and non-negotiable, particularly when dealing with trauma, infectious disease risk, or high fluid exposure. However, it is also true that many funeral homes have shifted toward a default of maximum PPE for nearly every touch point, including situations where proper hand hygiene, risk assessment, and washable barrier systems could reduce waste without compromising safety. In many operations, disposable gloves become a reflex rather than a measured decision, and once that culture takes hold, waste becomes inevitable.
Linens and textiles represent another major waste stream that does not receive enough scrutiny. Some firms still rely on washable sheets, towels, and cloths, but many operations, especially high-volume cremation providers and corporate locations have moved toward disposable alternatives. Even washable linens frequently get discarded after traumatic cases, not necessarily because regulations demand it, but because staff are overwhelmed and the labor of processing, disinfecting, and laundering becomes too heavy to manage. The problem is not that funeral professionals do not care; the problem is that the industry runs chronically understaffed, and under those conditions, disposability becomes the easiest pressure valve. When time is scarce and exhaustion is constant, waste becomes a shortcut for survival.
Embalming introduces an even more serious layer of environmental harm, because this is not only about landfill waste but about chemical exposure and discharge. Formaldehyde-based embalming fluids remain widely used, and the funeral profession has historically treated embalming as a default practice rather than a situational choice. Yet embalming is not an environmentally neutral act. It involves the use of toxic chemicals and solvents, and it creates downstream impacts through wastewater discharge and contaminated materials. This is not a moral accusation against embalmers, as I too am a licensed embalmer; it is a systems reality that the industry must face honestly. If funeral service wants to claim leadership in sustainability and ethical care, it cannot continue to treat formaldehyde exposure and routine chemical use as a minor operational detail. There are alternatives emerging, including lower-toxicity fluids and newer preservation technologies, but adoption remains slow because tradition is deeply entrenched and because funeral education has not consistently kept pace with innovation.
Cremation is often framed as a cleaner, simpler, or more eco-friendly option, but that framing hides an increasingly industrial reality. Modern cremation is a volume-driven process that relies heavily on packaging and single-use materials. Cardboard containers, plastic coverings, liners, tags, temporary urns, adhesives, and protective barriers generate constant waste before the cremation even begins. In addition, there is the environmental cost of fuel consumption, energy use, and emissions. This does not mean cremation is inherently “bad,” but it does mean we should stop pretending it is automatically a clean alternative to burial. Cremation’s waste is easier for society to ignore because it feels less tangible than a cemetery plot, but waste that is hidden is still waste.
Beyond the clinical and operational workflows, the funeral industry also generates enormous waste in its ceremonial and aesthetic elements. Floral foam, plastic liners, ribbons, cellophane, decorative materials, and short-lived event buildouts, and don’t even get me started on balloon releases, all contribute to landfill volume. In many funeral homes, an entire temporary environment is created for a single day and then dismantled and discarded. This is often done with genuine care and sincere intent, because beauty matters and ritual matters. However, it is possible to honor the emotional role of beauty while still acknowledging that our current methods of creating it frequently rely on disposable materials. The industry has not sufficiently challenged itself to ask whether we can maintain beauty without this level of waste.
None of this exists in a vacuum. The death rate is rising with population growth and aging demographics, and cremation rates have increased dramatically across the United States. At the same time, funeral service has been shifting toward consolidation, corporate models, and high-volume operations designed for speed and scale. Scaling without sustainability is simply industrialization, and industrialization produces more waste. That means the waste problem is not self-correcting. Unless the profession actively intervenes, the funeral industry’s environmental footprint will expand, not shrink.
If the industry is serious about addressing this, the first requirement is honesty. We need to stop using the language of “green” as a marketing category and start treating sustainability as an operational responsibility. It is not ethical to sell families bamboo urns and biodegradable keepsakes while running an internal workflow that generates pounds of plastic waste daily. The public-facing eco language has outpaced operational reality, and that gap undermines trust.
From a practical standpoint, change begins by rebuilding washable systems wherever feasible. Washable linens and barrier garments, commercial laundry partnerships, and standardized decontamination workflows can reduce waste meaningfully without compromising hygiene. Disposables should be treated as necessary tools for high-risk situations, not default materials for everyday operations. This is especially important in prep rooms and removal workflows, where risk varies and policies should reflect actual exposure conditions rather than blanket assumptions.
The profession also needs a more mature conversation about embalming. Embalming will remain appropriate and desired in many contexts, particularly for viewing, extended timelines, or repatriation situations. The problem is not the existence of embalming; the problem is the normalization of routine embalming as a default. Ethical practice requires transparency. Families should understand what embalming is, when it is necessary, and when it is not. As more families choose alternatives such as refrigeration, dry ice, or immediate disposition, the industry should support those choices rather than steering families toward chemicals because it is operationally convenient.
In addition, funeral homes should reduce unnecessary plastics in ritual spaces and transition away from disposable aesthetic materials where possible. This includes limiting floral foam, choosing sustainable décor practices, and collaborating with floral designers who are trained in foam-free methods. It also includes educating families on sustainable memorial practices without shaming them. Environmental responsibility is not built through guilt; it is built through options, access, and truthful communication.
Finally, the industry must face the underlying operational driver that fuels much of this waste: chronic understaffing and burnout. Sustainability requires time, training, and the ability to implement thoughtful workflows. If funeral homes run with staffing models that leave professionals exhausted and constantly rushing, then disposability will remain the default because it is the fastest way to move through volume. In that sense, waste is not merely an environmental issue. It is a labor issue. It is a systems issue. It is the predictable outcome of an industry that has been pushed toward production thinking rather than care thinking.
The funeral profession has long described itself as sacred work, and in many ways it truly is. However, sacred work comes with ethical responsibility, and that responsibility does not stop at the door of the prep room or the dumpster behind the building. If we want to honor the dead while caring for the living, we cannot keep ignoring the ecological consequences of how we operate. We cannot claim community care while externalizing our waste and chemical impacts onto the Earth that holds all of us.
The funeral industry has a waste problem. The solution begins when we stop pretending it does not.
Marc D Malamud
Transitioning Doula
The Season That Teaches Us Don’t Skip the In‑Between: Spring, Loss, and the Work of Becoming
Spring’s Invitation: Don’t Skip the “In‑Between”
something ends first.
Why We Need Ritual When Life Changes
That’s not only true after a death. It’s true after any ending. [inelda.org]
The “In‑Between” Is a Real Place
grief and change create a liminal space.
You’re not who you were, but you’re not yet who you’re becoming.
It’s a place to inhabit.
When We Rush, We Misread Our Own Grief
Maybe you’re not stuck.
Maybe you’re staying with what’s true for as long as it needs.
A Gentle Spring Practice: Make Room for What’s Ending
The “Compost & Bud” Ritual (10 minutes)
Label one: COMPOST. Label the other: BUDS.
Write down one thing you are ready to release—or one thing that is already ending, even if you didn’t choose it.
Examples: a role, a habit, a belief, a pace of life, a relationship with certainty, an expectation of how things “should” be.
Write down one thing you want to nourish. Keep it small and honest.
Examples: patience, tenderness, courage, a new boundary, a slower rhythm, asking for help, telling the truth.
Read both lists out loud—yes, even if it feels awkward. (Awkward is often the doorway.)
Then say one line:
“I don’t have to rush the middle. I can be here.”
Choose one tiny action that supports the “buds” list in the next 24 hours. Keep it realistic.
A Question to Carry
And what might need to end (or be laid down) for that to be possible?
In the Spirit of the Holiday Season
- the ending
- the waiting
- the beginning
It’s a transformation.
Marc D Malamud
Transitioning Doula
Subcategories
Obituaries & Memorials
This space is devoted to tender remembrance—a place to share stories, blessings, and the everyday moments that made each life uniquely precious. Through these tributes, we honor each beloved soul’s transition, hold their spirit close, and gently accompany the hearts who continue on without them.