Tag: terminal illness

Cultural Perspectives on Death: The South (USA)

~ Che Rob ~ Leave a comment

In the Southern United States, death and dying customs are not merely events but are deeply ingrained in the fabric of the region’s culture, history, and religious beliefs. Southern customs surrounding death reflect a unique blend of tradition, faith, and community spirit, shaping how individuals and communities navigate the journey from life to death.

Southern Hospitality in Times of Loss

Southern hospitality is renowned worldwide and extends even to times of loss. When death strikes a family in the South, neighbors, friends, and even strangers rally together to provide comfort, assistance, and support. Whether it’s preparing meals, offering a listening ear, or helping with household chores, the outpouring of compassion and solidarity helps ease the burden of grief for the bereaved.

Traditional Funeral Services

Traditional southern funerals are marked by elaborate ceremonies and religious rituals that pay homage to the deceased and offer solace to the grieving. Mostly held in churches or funeral homes, these services typically include hymns, prayers, eulogies, and scripture readings, reflecting the deep-rooted influence of Christianity in the region. Family members and friends gather to honor the departed and seek comfort in their shared faith and traditions.

Open-Casket Viewings

Open-casket viewings are common in southern funeral traditions, allowing mourners to bid farewell to the deceased and pay their final respects. Family members take great care in preparing the body, dressing it in dignified attire, and displaying it in a manner that honors their memory. These viewings offer a tangible opportunity for closure and remembrance, allowing loved ones to say goodbye meaningfully.

Southern Comfort Food

Food has always been central to southern culture, and it plays a significant role in southern death customs as well. In mourning, friends and family gather to share comforting dishes such as fried chicken, casseroles, and pies. These home-cooked meals nourish the body and provide emotional sustenance, offering a taste of familiarity and warmth during times of sorrow.

Burial Traditions

In many southern communities, traditional ground burials remain the preferred method of laying loved ones to rest. Family plots in church cemeteries or rural graveyards serve as sacred spaces where generations of ancestors rest side by side. The act of burying a loved one in the earth is deeply symbolic, representing a return to the land and a connection to the cycles of nature.

Memorial Services and Celebrations of Life

In addition to formal funerals, southern families often host memorial services or celebrations of life to honor the deceased in a more informal setting. These gatherings may take place in the family home, community center, church, or outdoor venue and are characterized by food, music, storytelling, and shared memories. Rather than focusing solely on grief and loss, these celebrations emphasize the joy of a life well-lived and the enduring legacy of the departed.

Emphasis on Family and Community

Southern death customs strongly emphasize the importance of family and community support. Mourners come together to share memories, offer condolences, and provide practical assistance to those grieving the loss of a loved one. Whether it’s organizing meals, arranging childcare, or helping with funeral arrangements, the collective efforts of the community help ease the burden of grief and foster a sense of belonging and solidarity.

Southern Gothic Traditions

In some parts of the southern USA, particularly in rural areas, traditions of storytelling and superstition introduce an air of mystery and intrigue to death customs. Tales of ghostly apparitions, haunted graveyards, and eerie funerary practices are woven into the fabric of southern folklore, adding a sense of drama and mysticism to the rituals surrounding death and dying.

Respect for Elders and Ancestors

Southern culture places a high value on respecting elders and honoring ancestors, and this reverence extends to the customs surrounding death. Rituals such as decorating graves, holding annual remembrances, and passing down family heirlooms are tangible expressions of love and respect for those who have passed on. By preserving these traditions, southerners ensure that the legacy of their ancestors lives on for future generations to cherish and uphold.

Hope and Resilience in the Face of Loss

Despite the sorrow of saying goodbye to loved ones, southern death customs are imbued with a sense of hope and resilience. Through faith, community support, and cherished traditions, southerners find strength in coming together to celebrate life, even amid grief. The rituals surrounding death serve not only to honor the departed but also to reaffirm the bonds of family, community, and faith that sustain them through life’s most challenging moments.

The unique death and dying customs of the southern United States reflect a rich tapestry of tradition, faith, and community spirit that honors the past while embracing the future. From the outpouring of hospitality and support to the solemn rituals of burial and remembrance, these customs serve as a testament to Southern culture’s resilience and enduring spirit. In times of loss and sorrow, the traditions surrounding death provide comfort, solace, and a sense of belonging, reaffirming the bonds that unite Southerners as they navigate the journey from life to death and beyond.

Death Doula Dialogues: Jessica Waters

~ Che Rob ~ Leave a comment

Allow me to introduce Jessica Waters, a Licensed Addictions Counselor with a specialization in advanced grief counseling for death and dying, as well as an Integrated Mental Health Practitioner NEDA Proficient End of Life Doula. With a wealth of experience and expertise, Jessica offers invaluable support and guidance to individuals navigating the intricate landscape of grief. Through compassionate counseling techniques and a deep understanding of loss’s complexities, she empowers clients to navigate their grief journey with resilience and healing. Join us as we delve into her insights and wisdom, shedding light on the transformative power of grief counseling in navigating life’s most profound transitions.

Can you share your journey of becoming a licensed counselor specializing in advanced grief counseling for death and dying?

Well, my journey to this role has been my own journey of healing and getting to know grief in multiple capacities. I started out as a teacher and my first year of teaching experienced school violence. Four years later I lived down the street from Columbine when the massacre occurred. Those two experiences pushed wanting to understand my childhood trauma as well, pushed me into my masters in psychology. I studied trauma in depth and then the power of the arts, specifically expressive arts therapy in healing. From 2000-2005 I also struggled with alcohol and had that battle to fight. In 2005, my brother, who had a long history of paralyzing addiction, was killed, tragically, in a motorcycle accident that he caused. This devastated my parents and his children, and I had a path of dealing with my own anger around his addiction and his death. That anger was my grief. It was also the last day I drank. So in his dying I found my sobriety. The experience was the first beginning of me understanding that everyone grieves differently and that there is no timeline for grief, no completion, but instead a constant evolution of getting to know it and processing it within yourself and with others. My brother’s death started my family’s death cycle. By this I mean we entered a time when we had several more deaths in the next two years. My aunt would be diagnosed with multiple myeloma and just shy of a year after my brother’s death, she was put on home hospice where I cared for her until after she died. It was another experience of learning about death, as hospice and traumatic death are very different experiences in ways. That experience was incredible and such a huge part of really understanding the active dying process, but also from a spiritual perspective as some key experiences that shaped my personal beliefs in the afterlife and the spirit crossing over, were confirmed. That next year, to the day, my grandmother passed away from a stroke, two months later my other grandmother passed away from Alzheimer’s. It was two days before Christmas in 2007. My great uncle died suddenly from a heart attack on New Year’s Eve. Processing those three years became an immense process and frankly in the height of the events happening, I became very desensitized to people dying. It became another event for me personally, as my emotional capacity was at its maximum. I thought I was cursed at the time as everyone that I’d encounter would have someone or their pet actively dying in their life. What I didn’t realize immediately were two things: the reality that we all are going to die. As I say, and some take offense to, no one’s getting out of here alive–physically. Two, that the spiritual component of dying and living are so amazingly intertwined and part of the magic and sacredness of not only life on this plane but in totality of our spiritual energies existence.

After the Sandy Hook Massacre occurred in 2014 I had to take a break from trauma work to heal myself. This led to, later, a renewed dedication and understanding that my “place” was to help others understand and have a compassionate, connected place where spirit and healing energy could be intently focused. So from 2018-the present really, I have completed a multitude of certifications in various trauma and grief treatment approaches, including study with the Hospice Centers of America, The Shirley Center at UC San Marcos and the Center for Prolonged Grief at Columbia University. I have sought out additional study in transpersonal psychology, what I simply call “spiritual psychology” that focuses on the mind, body, sound trifecta in transcendent experiences, which death and being Sacred Witness to dying is absolutely part of that. In fact I feel that birth and death are the two most Sacred experiences we encounter as people in this life.

What inspired you to focus your practice on providing support for individuals experiencing complex grief related to death and dying?

My practice isn’t just focused on that. It is a component of my practice. I work with individuals that are in various stages of life and dying and I include addiction to be a phase of death from a mind, body, spirit perspective. I have individuals who could be diagnosed with Prolong Grief Disorders (what we now call what used to be complex grief). The irony is that I and many other clinicians don’t agree with the DSM’s criteria for this “disorder”. It states that there is a timeline for grieving and our reality is that there is not. When you lose a child, it’s absolutely ridiculous to think you will be “over that in a year or two” and move on. It’s ludicrous. However the work I do with people who experience intense, long-lasting grief, is centered on helping their minds get unstuck from the intense feedback look of despair, to acknowledging the beauty of the life of the person who passed, their relationship and in a very spiritual sense, knowing that the individual that has crossed over has a spirit that is very much with them now. I realize not everyone believes that, and that is their option of course! But, I have never worked with individuals that do not. From a technical perspective, I utilize aspects of CBT but also a method called re-imagining that is part of Columbia University’s Center for Prolonged Grief’s method. I do not use the full method for a variety of reasons, the main one being each individual, each grief is different and I don’t believe there is a cookie cutter way of addressing those aches. I do involve grief education and indigenous perspective, expressive arts and incorporate ways to allow the grief held internally to have a voice, which can be so difficult with intense emotions. However, through the arts we can find ways to find our voice and begin to let the grief express itself. Many times we hold onto the grief because it’s all we have left of the relationship with the individual and we think that if we let the grief go, we won’t have their essense anymore.

How do you approach working with clients who are facing anticipatory grief as they navigate a loved one’s terminal illness?

I work with them in learning about the dying process, again, finding their voice through the arts and addressing anxiety. This involves physical movement to release the tension and stress hormones that fuel the nervous system, psychoeducation about how anxiety works in your system, natural supplements, breathwork, and tailored coping mechanisms for the individual. There are elements of MCBT (Mindfulness Based Cognitive Behavior Therapy) and DBT (Dialectical Behavior Therapy) that I use, but it is a lot of mindfulness education and development as well.

What are some common misconceptions about grief that you encounter in your work, and how do you address them with your clients?

I think the Mourner’s Bill of Rights from Dr. Alan Mofelt at the Center for Loss and Life Transition is fundamental in helping squash those myths and misconceptions. Too, we have this heaviness about death in this country [USA] and not to minimize that in any way, but death is release. There are Celebrations of Life. I often feel those should happen prior to the death so the individual in active dying can be a part of that and hear those stories and the ways their life has impacted their family members or other loved ones and encourage those dialogues. But post-death, it’s ok to smile, to have fun at a funeral or to engage in activities that the loved one that passed enjoyed and find your joy there too. Death and mourning don’t always have to look like a wet, heavy wool blanket full of depression. There is nothing wrong with it looking that way as well. So, the misconception that everyone mourns a certain way I meet by encouraging people who are mourning to find what is meaningful for them, what they need to do or not do, what ritual, ceremony, life change will help them live a fulfilling life in honor of the one that has passed. Now, in some cases we know there can be a lot of conflicting emotions about someone who a person might have had a difficult or even a traumatic time with. Those again are dealt with in accordance with what the individual needs. The second misconception that I fundamentally tackle is what I mentioned prior, that there is no timeline for grief. At all. That grief is not “healed” it is integrated into your life. Experiences occur with life that grow your experience with your emotions in different ways. Thoughts and perspective can shift, and there can be years or decades after someone passes where you still are impacted at the holidays or anniversary dates of the death. It’s all ok.

How do you integrate modalities such as cognitive-behavioral therapy (CBT) or mindfulness-based interventions into your grief counseling practice?

Again, as I’ve said, this is all done on a very individual basis. I do not use any intervention singley. CBT has elements that are not compatible with chronic, complex trauma from grief events. Mindfulness is a core part of my practice. I utilize expressive arts a lot as there are things we can’t find the words for often, allowing imagery and mark making to express things. More organized “activities” with memorial making, letter writing, etc are always part of the process if appropriate. Grief yoga, Tai Chi, somatic movement for soothing is a part of my practice as well as spiritual counseling and energy work through the ancient traditions of Curanderismo.

What role do you believe spirituality and existential questions play in the grieving process, and how do you address these aspects with your clients?

Accepting that not all people believe in or have spiritual practices is important as much as honoring differences and understanding, learning about what is culturally appropriate. Being in conversation with the family or client is essential. In the dying process there are many documented instances of existential experiences with family, spirits, angels from the other side appearing to dying loved ones. Death education can help people understand this too. I work with clients to understand their spiritual preferences. Being an interfaith minister who studied world religions and a Curandera, a practice that is very spiritual and traditional in Latin American cultures, I specifically offer ceremony, ritual development and prayer and channeling.

Can you discuss the importance of creating a safe and supportive therapeutic space for individuals to express their grief authentically?

This is essential and foundational to any therapy, Doula or coaching session.

How do you incorporate techniques for building resilience and coping skills into your grief counseling sessions?

It’s what we do within practice constantly. My sessions are not “just talk sessions”, they are interactive with a variety of interventions that support resilience building. After all that is the ultimate goal, in many ways.

What resources or community support do you recommend to clients who are navigating grief and loss?

The website What’s Your Grief and working with Heart Light Center virtually or in-person in Denver are amazing resources. Hospice Centers of America and the CalState San Marcos Shirley Center for Palliative Care are great resources. The Center for Prolonged Grief at Columbia University is a great resource for complicated/prolonged grief for clinicians.

How do you stay informed about current research and best practices in advanced grief counseling, and how do you continue to grow and evolve in your role?

Through continuing education both traditional and existential and continued self development.

Living Funerals

~ Che Rob ~ Leave a comment

Recently, a novel concept has emerged, reshaping the traditional approach to farewells: living funerals. Unlike conventional ceremonies held posthumously, living funerals provide an occasion for individuals to actively celebrate their lives while still alive and surrounded by loved ones. This blog explores the significance of living funerals, their origins, benefits, and the impact they can have on individuals and their communities. We will unravel the essence of living funerals and their transformative power in embracing life’s beauty.

Origins and Evolution 

The roots of living funerals can be traced back to various cultural practices and traditions that celebrate life and honor the journey of the living. From ancient rituals commemorating milestones and achievements to modern-day ceremonies emphasizing the importance of connection and presence, living funerals have shifted the focus from death to life itself. In recent years, individuals have increasingly embraced the concept of living funerals as a way to reclaim control over their end-of-life experiences and leave behind a meaningful legacy.

Creating Meaningful Moments 

At the heart of a living funeral lies the opportunity to create meaningful moments and memories that celebrate the richness of life. Whether gathering with loved ones to share stories, expressing gratitude for cherished relationships, or engaging in activities that bring joy and fulfillment, living funerals provide a space for individuals to reflect on their lives and their impact on others. By actively participating in their own celebration, individuals can find some peace and tranquility as they approach the end of life.

Healing and Connection 

Living funerals also offer a powerful opportunity for healing and connection for the individual and their loved ones. By openly acknowledging the reality of mortality and celebrating life in the present moment, living funerals can facilitate meaningful conversations, strengthen bonds, and provide a sense of closure for all involved. Through shared laughter, tears, and expressions of love, participants can find solace in the collective experience of honoring life and embracing the beauty of human connection.

Empowering End-of-Life Planning

In addition to serving as a celebration of life, living funerals can also play a practical role in end-of-life planning. Through active engagement in their own farewell ceremony, individuals can guarantee the fulfillment of their last desires, the acknowledgment of their preferences, and the preservation of their legacy. From selecting meaningful readings and music to expressing personal messages and intentions, living funerals empower individuals to shape their narrative and leave a legacy reflecting their values and beliefs.

Living funerals offer a powerful and transformative way for individuals to celebrate life, connect with loved ones, and find meaning and closure in the face of mortality. By shifting the focus from death to life, these unique ceremonies provide a space for reflection, gratitude, and celebration, fostering healing and connection for all involved. As we continue to explore new ways of honoring life and embracing the end-of-life journey, may we find inspiration in the concept of living funerals and the profound impact they can have on our lives and relationships.

Empowering End-of-Life Planning: Insights from an Estate Planning Advocate

~ Che Rob ~ Leave a comment

In a world where conversations about death and estate planning are often met with discomfort or avoidance, a crucial need exists for education and guidance. Enter Tramaine Francis-Luster, a passionate advocate and educator on the importance of estate planning and funeral pre-need planning. With a wealth of experience and expertise in navigating these sensitive topics, Tramaine dedicates her efforts to empowering individuals and families to take proactive steps toward securing their legacies and honoring their final wishes. In this exclusive interview, we delve into the invaluable insights and wisdom she has to offer, shedding light on the transformative power of planning ahead for life’s inevitable transitions. Join us as we explore the importance of estate planning and funeral pre-need planning and discover practical strategies for navigating these essential aspects of end-of-life preparation.

What motivated you to become involved in educating people about estate planning and funeral pre-need planning?

The personal events in my life, including the loss of my father in 2016 and the subsequent health issues and passing of my grandmother after a stroke, have inspired me to advocate for education on estate planning and funeral pre-need planning. The difficulties my family encountered following my father’s passing, like organizing his transportation and funeral arrangements, emphasized the significance of preparedness for unforeseen circumstances. Witnessing families struggle with sudden losses during the COVID-19 pandemic strengthened my resolve to promote the importance of proactive planning. My objective is to assist families in preventing avoidable pain and distress by encouraging readiness for life’s unpredictable moments.

Can you explain why estate planning and funeral pre-need planning are important considerations for individuals and families?

First, estate planning allows an individual to outline their wishes through a Will and or Trust regarding how they would like their assets and properties distributed after their passing and whom they would like to manage their affairs. This ensures that their loved ones are taken care of per their specific intentions. Not to mention, it helps minimize potential family disputes and provides beneficiaries with financial security.

In addition to detailing your desires in a Will or Trust, estate planning also allows you to anticipate scenarios of incapacitation. It ensures that your financial affairs, medical care, final disposition, and the guardianship of your minor children are addressed and managed according to your specific preferences.

Funeral pre-need planning, on the other hand, allows an individual to make decisions about how they would like to be remembered by planning their funeral arrangements, alleviating the burden on their family members during an already emotional and challenging time. By pre-planning your funeral arrangements, individuals can ensure that their final wishes are respected and alleviate financial stress on your family.

What are the key components of a comprehensive estate plan, and why are they necessary?

  • Creating a Will: A Will, also known as Last Will and Testament, is an essential tool in estate planning to ensure that your assets are distributed according to your wishes while providing clear guidance to your loved ones after your passing.
  • Establishing a Trust (if applicable): A trust manages your assets during your lifetime and after your death. It offers benefits such as avoiding probate, protecting your assets from creditors, and providing for the long-term care of loved ones.
  • Executing Power of Attorneys:
    1. Durable Financial Power of Attorney: Allows an individual to grant someone the authority to manage your financial affairs on your behalf if you are incapacitated. 
    2. Medical Power of Attorney: Gives you the ability to designate someone who will act as your representative to make medical decisions and assume control of your healthcare if you become incapacitated.
  • Advance Healthcare Directives (Living Will): Allows an individual to outline their wishes regarding their medical treatment and end-of-life care so that their family doesn’t have to make tough decisions in case they are unable to communicate their wishes.
  • HIPAA Authorizations (Health Insurance Portability and Accountability Act): Legal document that allows you to share medical information with a family member, friend, another healthcare provider, insurance company, or legal representative.
  • Designating Beneficiaries: Allows you to specify who should receive the assets or benefits upon your death.
  • Guardianship Designations: Allows you to appoint an individual or entity to assume responsibility for making decisions on behalf of a minor child, adults with disability, elderly individuals who developed cognitive impairments, such as dementia or Alzheimer’s disease, and an incapacitated individual who has suffered a severe injury or illness that renders them unable to make a decision or care for themselves temporarily or permanently.
  • Final Disposition: Allows an individual to detail their end-of-life wishes. As you begin to consider your mortality, you will need to decide how you would like to be remembered, such as being buried or cremated, where your remains will be interred, do you wish to have a funeral or memorial service, do you have military honors, and how your funeral will be paid, whether Pre-Need Funeral Plan or Life insurance.
  • Tax Planning: Allows you to manage your estate in a way that minimizes the potential tax burden on your assets. By understanding the tax implications, you can effectively optimize the transfer of your wealth to your beneficiaries while minimizing estate taxes, gift taxes, and other potential tax liabilities.
  • Business Succession Planning: Allows an individual to plan for the transfer of ownership and management of a business to ensure its continued success after the current owner passes away.
  • Regularly Updating Estate Plan: Regularly review and update your estate plan as circumstances change or if significant life events occur, such as marriage, divorce, the death of an executor/trustee, adoption, the birth of a child, or the purchase of a property.

How does proper estate planning help individuals protect their assets and ensure their wishes are carried out?

Effective estate planning enables individuals to safeguard their wealth and facilitate its transfer to their designated beneficiaries, shielded from potential creditors, legal actions, or excessive taxes. A comprehensive estate plan empowers individuals to determine the method and recipients of asset distribution upon their passing, establish business succession strategies, designate guardians for minor children, and address pre-need considerations. Estate planning additionally allows individuals to prepare and designate agents through Medical and Financial Power of Attorney documents, outlining advanced healthcare preferences in the event of incapacitation.

By recording these preferences in a legally binding document, such as a will, trust, and other ancillary documents, individuals can preempt family disputes and ensure that their assets are distributed in alignment with their intentions. Through the implementation of sound estate planning strategies, individuals can protect their assets, alleviate financial pressures, and establish a coherent framework for wealth distribution and asset stewardship according to their wishes. This not only offers individuals peace of mind but also provides assurance to their loved ones that their financial legacy will be preserved and managed as intended.

What common misconceptions do people have about estate planning, and how do you address them?

  • I don’t need an estate plan because I don’t have any assets. Even if you do not have many assets, it can still be beneficial to have an estate plan in place. Estate planning involves more than just distributing assets. It can also include important elements such as appointing a healthcare proxy, designating guardianship for any dependents, and specifying end-of-life wishes. It can also help avoid potential conflicts and legal complications in the future. Moreover, considering the uncertainty of future events, such as inheriting a significant amount of money through my company and the awesome attorneys we work with, we strive to create estate plans that are as timeless as possible.
  • I am single with no kids; I don’t need an estate plan. While having an estate plan is not mandatory for everyone, it can still be beneficial for individuals without children or a spouse. Even though you don’t have immediate family members to consider, an estate plan can help ensure your assets are distributed according to your wishes and minimize potential conflicts among other potential beneficiaries.

These are a few reasons why it might still be a good idea to have an estate plan:

  • Asset distribution control
  • You have the power to decide on your chosen beneficiaries.
  • You retain the authority to determine who will make healthcare decisions and manage your finances in the event of your passing or incapacitation.
  • Estate planning is not just for the wealthy. It is important for anyone who wants to ensure that their assets are distributed according to their wishes and that their loved ones are taken care of after they pass away, regardless of the size of their estate.
  • Although you may be young, if we haven’t learned anything else about the COVID-19 pandemic, we’ve learned death has no age. Unexpected events can occur at any age. Having an estate plan in place can protect yourself and your family in case of incapacity or an untimely death.
  • While it is important to name your beneficiaries on all of your accounts, such as IRA, 401K, bank accounts, life insurance policies, etc, it does not replace the need for a comprehensive estate plan. A Will and Trust can address various aspects of your estate, such as guardianship of a minor child, distribution of personal belongings, and ensuring that all of your assets are accounted for and distributed according to your wishes. Estate planning is more than just designating beneficiaries on an account. 

How do you approach discussions about end-of-life planning and funeral pre-need planning with your clients?

When starting a conversation with my clients about end-of-life planning and funeral pre-need planning, I always approach the topic with sensitivity, empathy, and respect. Many of my clients may have recently experienced a loss within their family, prompting their interest in this subject. Building trust and fostering a supportive relationship are priorities for me, as I recognize the sensitivity of the topic. Additionally, a large majority of individuals I work with have had some involvement in planning a loved one’s funeral, further highlighting the importance of approaching the discussion with care.

I allow clients to take the lead in sharing their experiences and preferences, listening to their stories, likes, dislikes, and reflections on previous funeral arrangements. By understanding their perspectives, I can initiate an open dialogue and pose thought-provoking questions about crucial aspects of end-of-life planning and funeral pre-need planning.

Following an engaging conversation, I provide clients with information and resources to help them comprehend their options. I highlight the advantages of having a pre-arranged funeral plan, emphasizing the opportunity it provides to express their wishes clearly and alleviate any uncertainties for their loved ones. We discuss the benefits of a pre-need plan, including the fact that it locks in current rates, ensuring that individuals do not pay more in the future for their funeral expenses.

Through compassionate communication and respect, I strive to support my clients in making informed decisions that reflect their values and preferences, offering guidance to help them navigate end-of-life and funeral planning with greater ease and peace of mind.

What factors should individuals consider when making decisions about their funeral arrangements in advance?

When contemplating your funeral arrangements in advance, I always advise my clients to consider various aspects, such as the individuals involved, the specifics of the service, timing, location, methodology, and any additional preferences they may have.

What: Determine the type of memorial service you envision, whether it be burial or cremation.

Where: Select the location for your service, such as a funeral home, cemetery, or family home, or opt for no service at all.

Who: Specify any preferences for your service, including who you wish to lead and participate in the funeral (officiant, eulogists, musicians, pallbearers).

When: Take into account the timing of your service, particularly if you have family members residing out of state who may need time to travel. Consider scheduling a wake or visitation hours accordingly.

How: Ponder the method by which you plan to finance your funeral service. Will it be paid outright, through your life insurance policy, or utilizing a pre-paid funeral plan?

Having this information in mind will help an individual make informed decisions regarding their funeral arrangements in advance.

How does funeral pre-need planning help relieve financial and emotional burdens for loved ones after death?

  1. Peace of Mind: Knowing an individual’s wishes in advance will ease the burden on their loved ones.
  2. Financial Security: Pre-funding funeral arrangements eliminates the stress associated with funeral payments and other final expenses.
  3. Option to pay overtime: When pre-funding your funeral, you can set aside funds in convenient periodic payments.
  4. Known price: Outlining your funeral plan allows an individual’s family to know what the cost will be.
  5. It’s transferable: If you should move out of state or simply choose another funeral home, your Advance Funeral Plan can transfer with you.
  6. Exempt assets: Funds set aside to pay for future funeral costs can be set up to be exempt from consideration as assets in the event you need to qualify for public assistance.
  7. Together, not alone: Your loved ones won’t be left to make all the decisions on their own as to what their loved one might have wanted, alleviating the emotional burden of planning a funeral.
  8. One call: Once you have pre-planned, a single call can set the process in motion once you have passed away.
  9. Preserve your independence: Like most people, you cherished your independence during your lifetime. Pre-planning protects your independence even after you are gone.
  10. Personalization: Pre-planning allows you to choose how you would like your life celebrated and how you want to be remembered.

By taking proactive steps to plan for their funeral in advance, individuals can help ensure that their loved ones are well-supported and cared for during a difficult time.

What options are available for funding funeral pre-need plans, and how do they work?

Each company provides its distinct offerings, and in the state of Texas, a pre-paid funeral contract can be financed through a trust or insurance. In most trust-funded contracts, the seller and funeral provider are typically the same entity. In a trust-funded pre-paid funeral contract, payments are deposited into an authorized interest-bearing restricted bank account or formal trust account to cover the forthcoming expenses of the designated funeral goods and services. On the other hand, in an insurance-funded pre-paid funeral contract, payments are utilized to acquire an insurance policy or annuity that will cover the future expenses of the selected funeral goods and services.

In the case of the insurance-funded pre-paid funeral contract, which is the service provided by my company, an insurance application must be finalized simultaneously with the pre-paid funeral contract. Payments for the insurance policy or annuity funding the contract are remitted to the insurance company on a payment schedule spanning from 3 to 10 years, tailored to fit your financial capacity. Once the pre-arrangement plan is established, the cost of the services is fixed, ensuring no price escalation. Opting to settle the pre-arrangement costs incrementally guarantees that monthly payments remain static with no interest accrual.

Can you share any personal stories or examples that illustrate the importance of estate planning and funeral pre-need planning?

During my formative years, my father consistently assured my sisters and me of his readiness should anything unforeseen happen to him. However, his passing revealed a stark contrast to the preparedness he had conveyed to us. We were ill-prepared for the challenges that lay ahead, thrust abruptly into a daunting journey for which we were inadequately equipped. The process, spanning from orchestrating his funeral arrangements to settling his estate affairs, proved to be overwhelming and emotionally taxing. It underscored the painful truth that the absence of preparation only amplifies the burden of grief, leaving those left behind in a state of disorientation amidst a complex blend of legal procedures and raw emotions, particularly when vulnerability is at its peak.

One distinct memory remains etched in my mind: a moment of solitude and uncertainty shared with my sister at an Applebee’s restaurant in Washington, D.C. Our hearts were heavy with emotions. We were engulfed by the uncertainty of what the future held. Sorting through our father’s possessions and financial matters ultimately led us to seek legal guidance to navigate the intricate probate processes.

In 2021, amidst the global turmoil of the COVID-19 pandemic, our family encountered another profound loss. We bid farewell to my maternal grandmother, a pivotal figure as the matriarch of our family. Her unwavering resilience and devotion formed the cornerstone of our familial bond. When her health deteriorated following a devastating stroke and other ailments, I assumed the role of caregiver alongside my mother. Ensuring my grandmother received attentive care, liaising with her medical team, managing medications, and addressing her daily needs became my priority. It was during these intimate yet challenging moments that I comprehended the critical importance of readiness, not solely in confronting mortality but also in navigating the realities of incapacitation.

Drawing from firsthand experiences of loss and grief, coupled with my professional background as a Paralegal specializing in wrongful death and medical malpractice cases, estate administration, and proactive funeral planning, I have garnered profound insight into the repercussions of unpreparedness on families grappling with the loss of a cherished member. These encounters have deepened my commitment to enlightening others on the vital significance of estate planning and pre-need funeral arrangements.

How do you tailor your educational efforts to meet the diverse needs and preferences of your audience?

  • Individualization: I tailor my educational content and presentations to connect with my audience personally. Integrating real-life anecdotes that are pertinent and relatable to my audience helps them feel understood and supported. Additionally, I use clear and uncomplicated language to ensure clarity and accessibility.
  • Feedback: I actively seek feedback to identify areas for enhancement and adaptation. By collecting input from my audience, I can refine my educational strategies and content to align more closely with their preferences.
  • Interactive Engagement: I incorporate interactive elements like quizzes, polls, discussions, and Q&A sessions to stimulate engagement and encourage active participation. This interactive approach fosters a dynamic learning environment and enhances audience involvement.

What resources do you recommend for individuals who are interested in learning more about estate planning and funeral pre-need planning?

How do you address cultural and religious considerations when discussing end-of-life planning with clients?

When discussing my client’s end-of-life preferences, I prioritize allowing my client to express their desires openly. I often initiate the conversation by posing questions such as, “How do you envision being remembered when you pass away?” and inquiring about their preference for cremation or burial. Subsequently, I delve deeper into their preferences by inquiring about the type of services they envision. I actively encourage my clients to share their cultural and religious beliefs, values, and preferences concerning their end-of-life and funeral arrangements. By attentively listening to their concerns, desires, and any specific requests they may articulate, I can effectively address their cultural and religious considerations. This approach enables me to guide them in navigating their end-of-life wishes in a manner that is in harmony with their values, beliefs, and traditions

What role do legal professionals, financial advisors, and funeral directors play in the estate planning and funeral pre-need planning process?

Legal professionals, financial advisors, pre-need funeral consultants, and funeral directors play crucial roles in both estate planning and funeral pre-need planning processes. For example, legal professionals specialize in creating essential legal documents like Wills, Trusts, Powers of Attorney, and Advance Directives detailing how an individual’s assets will be distributed after their passing. They also offer guidance on tax implications, asset protection, and legal requirements related to estate planning. Financial advisors focus on retirement planning, long-term care financing, and insurance coverage to secure the financial stability of clients and their families.

In contrast, funeral directors and pre-need funeral consultants specialize in assisting individuals with pre-arranging their funeral services and making decisions about burial or cremation arrangements ahead of time or when the need arises. They provide information on funeral costs, casket options, funeral arrangements, and various other considerations. If an individual chooses to make advance funeral purchases, this information can be integrated into their estate plan under final disposition. All four professions collaborate to offer comprehensive guidance and support to families, ensuring that their wishes are respected and their loved ones are adequately cared for.

How do you help individuals navigate complex family dynamics and ensure their wishes are respected in their estate plan?

To assist individuals in navigating their intricate family dynamics within the context of estate planning, my company and our team of attorneys utilize an estate planning questionnaire to gain a comprehensive understanding of each individual’s specific needs. Subsequently, we arrange an attorney consultation to facilitate open and candid discussions regarding the client’s unique family dynamics. Through transparent communication with our clients during these consultations, we aim to manage expectations, address concerns, and reduce the likelihood of misunderstandings. Our attorneys also proactively identify and address potential conflicts or areas of disagreement to preemptively resolve disputes and guarantee that each individual’s wishes are duly honored.

Can you discuss any changes or trends you’ve observed in the field of estate planning and funeral pre-need planning over the years?

In recent years, significant changes and trends have emerged in the estate planning and funeral pre-need planning industry. There has been a surge in the utilization of digital assets such as social media accounts, online banking, and cryptocurrency. Consequently, there is a growing necessity to integrate digital estate planning into the traditional estate planning process to address the management of these assets and social media accounts effectively. Additionally, there is a noticeable shift towards the adoption of digital platforms for creating wills, advance directives, and other estate planning documents due to their cost-effectiveness. However, the drawback of these platforms is the lack of comprehensive guidance, potentially leading to unintended consequences if individuals are not well-informed about the process.

On the other hand, in the realm of funeral pre-need planning, a prevalent trend is the increasing emphasis on personalization and customization of funeral arrangements. More individuals are seeking to customize their end-of-life plans to reflect their distinct values, beliefs, and preferences. This trend includes a growing interest in eco-friendly burial practices such as natural burials, green cemeteries, and alternative cremation methods like terramation and flameless water-based cremation processes.

Overall, these evolving trends in estate planning and funeral pre-need planning underscore a shift towards a more tech-savvy and personalized approach in response to the changing needs and preferences of individuals in today’s society.

How do you ensure that your educational materials and presentations are accessible and easy to understand for your audience?

To ensure that my educational materials and presentations are accessible and easy to understand for my audience, I prefer using clear and straightforward language that caters to a broad audience. I strive to simplify the information to the extent that even my teenage children, aged 14 and 16, can comprehend it. I make a conscious effort to present the content in a well-structured and coherent manner, incorporating visuals and personal anecdotes. By providing real-life examples, individuals can better relate to the information being shared. Additionally, I actively engage my audience by posing thought-provoking questions and creating an interactive environment. During presentations, I make flyers and pamphlets available for attendees to review and also upload select presentations to my website for broader accessibility.

What advice would you give to someone who is considering starting the estate planning or funeral pre-need planning process?

If an individual is considering estate planning or pre-need funeral planning, my first recommendation would be for them to educate themselves on the topic. It is important to take the time to conduct research and gain an understanding of the fundamentals of estate planning and pre-need funeral planning. This knowledge will empower them to make well-informed decisions regarding their assets, beneficiaries, and final wishes. The next step would be to assess their financial situation. This involves reviewing their assets, debts, and overall financial standing to determine the level of protection they desire and how they wish to distribute their assets. Subsequently, I would suggest creating a detailed list of their wishes. Clearly outlining their preferences for estate management, potential beneficiaries, and desired funeral arrangements is crucial. This information can be shared with loved ones, legal professionals, or pre-need funeral consultants to ensure that their wishes are accurately carried out. Lastly, once they have established their objectives for estate planning and funeral preferences, seeking guidance from professionals such as attorneys, financial advisors, funeral pre-need consultants, or funeral directors is essential to navigate the planning process effectively. These experts can offer valuable insights tailored to their circumstances. By following these steps, individuals can proactively initiate their plans for the future.

The 5 Stages of Grief

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Grief is a profoundly personal and complex journey. The range of emotions, thoughts, and experiences in response to loss is vast. First introduced by psychiatrist Elisabeth Kübler-Ross in her groundbreaking book “On Death and Dying,” the five stages of grief provide a framework for understanding the various ways individuals may navigate the grieving process. We are exploring these stages, shedding light on their significance and offering insights into how they can guide us through the turbulent terrain of grief.

Stage 1 ~ Denial

The first stage of grief, denial, is often characterized by disbelief and shock in response to the reality of loss. In this initial phase, individuals may struggle to accept the truth of what has happened, clinging to a sense of disbelief as a defense mechanism against overwhelming emotions. Denial can serve as a temporary refuge from the pain of loss, providing a buffer against the harsh reality of facing life without the presence of a loved one.

Stage 2 ~ Anger

As the shock of loss begins to fade, the second stage of grief, anger, may emerge as individuals grapple with intense feelings of frustration, resentment, and injustice. Anger is a natural response to the upheaval caused by loss directed outward at others, oneself, or even the deceased. It expresses the profound sense of powerlessness and vulnerability that accompanies grief as individuals struggle to make sense of a world that feels unfair and arbitrary.

Stage 3 ~ Bargaining

In the bargaining stage of grief, people sometimes attempt to negotiate with a higher power or fate to regain control or reverse the loss. This stage is characterized by guilt, regret, and a longing for things to return to how they were before the loss occurred. Bargaining reflects a deep-seated desire to find meaning and purpose in the face of overwhelming loss as individuals grapple with the powerlessness and uncertainty accompanying grief.

Stage 4 ~ Depression

As the initial shock of loss begins to subside, the fourth stage of grief, depression, may set in, bringing with it feelings of sadness, emptiness, and despair. Depression is a natural response to the deep sense of loss and disruption that goes along with grief as individuals come to terms with the reality of life without the presence of a loved one. It is a period of mourning and reflection as individuals confront the full weight of their emotions and begin to process the implications of their loss.

Stage 5 ~ Acceptance

The final stage of grief, acceptance, is characterized by a gradual sense of peace, resolution, and integration in response to loss. Acceptance does not mean that the pain of grief disappears entirely, but rather that individuals begin to find a sense of closure and understanding in their loss. It is a process of coming to terms with the reality of life without the presence of a loved one and finding a way to move forward with a renewed sense of purpose and meaning.

The five stages of grief offer a foundation for understanding the complex and multifaceted nature of the grieving process. The stages are rarely linear, meaning individuals can move back and forth between stages when healing from a loss. While grief is a deeply personal journey that unfolds differently for each individual, these stages provide valuable insights into the emotional landscape of loss. They can serve as a guiding light through grief. By acknowledging and honoring the full range of emotions experienced during grief, individuals can navigate the journey of mourning with compassion, resilience, and, ultimately, a sense of healing and renewal.

Embracing Diversity: Exploring Cultural Perspectives on Death

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Death is a universal experience, transcending geographical and cultural boundaries to touch every corner of humanity. However, despite its universality, how death is understood and commemorated differs significantly across diverse societies and belief systems. From elaborate funeral processions to intimate mourning ceremonies, cultural interpretations of death reflect deeply rooted traditions and values unique to each community. These rituals not only serve as ways to honor the deceased but also provide comfort and support to the bereaved, reaffirming cultural beliefs about the afterlife and the continuity of existence beyond death. Ultimately, the diversity of cultural perspectives on death enriches our understanding of this profound human experience and highlights the interconnectedness of all living beings.

The Rich Tapestry of Cultural Perspectives

Across the globe, cultures have developed intricate and nuanced ways of navigating the complexities of death. In some societies, death is viewed as a natural part of the life cycle, marking a transition from one state of existence to another. These cultures often embrace death with acceptance and reverence, incorporating rituals and ceremonies that honor the deceased and celebrate their legacy. In contrast, other cultures may perceive death as a taboo subject, shrouded in fear and superstition. Here, rituals and customs may focus on warding off malevolent spirits or ensuring the soul’s safe passage to the afterlife.

Ancestral Veneration and Connection

Among many cultural perspectives on death, one common thread is the importance of ancestral veneration and connection. In numerous traditions, the bond between the living and the deceased remains strong long after death, with rituals and ceremonies dedicated to honoring and communicating with ancestors. Whether through elaborate offerings, prayers, or commemorative festivals, these practices serve as ways to maintain a spiritual connection with departed loved ones and seek their guidance and blessings in everyday life.

Spiritual Beliefs and Afterlife

Beliefs about the afterlife vary widely across cultures, encompassing concepts such as reincarnation, heaven, hell, and ancestral realms. For some, death is viewed as a passage to a higher plane of existence, where the soul continues its journey of growth and evolution. Others may believe in the cyclical nature of existence, with death marking a temporary transition before rebirth into a new form of life. These diverse beliefs not only provide comfort and solace to the bereaved but also shape attitudes toward death and dying within the cultural context.

Expressions of Grief and Mourning

Expressions of grief and mourning also vary significantly across cultures, reflecting cultural norms, values, and social dynamics. In some societies, outward displays of emotion may be encouraged and embraced, with rituals such as keening, wailing, or public mourning ceremonies to express and process intense emotions. However, other cultures may prioritize stoicism and restraint in the face of loss, with individuals expected to maintain composure and dignity even amidst profound grief.

Challenges and Adaptations in a Globalized World

In an increasingly globalized world, cultural perspectives on death are subject to change and adaptation. Migration and exposure to different belief systems can lead to blending cultural traditions or developing new ways of understanding and navigating death. As cultures interact and influence one another, individuals and communities may grapple with questions of identity, belonging, and cultural preservation in the face of rapid social and cultural change.

Exploring cultural perspectives on death offers us a window into the diversity of human experience and the profound ways communities worldwide engage with the end-of-life journey. By honoring and respecting these diverse perspectives, we can deepen our understanding of death and enrich our lives with compassion, empathy, and cultural humility. As we continue to explore and contemplate the implications of cultural diversity on death, may we approach these conversations with openness, curiosity, and a willingness to learn from one another. In embracing the rich tapestry of cultural perspectives on death, we affirm the interconnectedness of all living beings and celebrate the enduring legacy of human resilience and diversity. In future posts, we will dive deeper into specific cultures and how they navigate death and dying.

Death Doula Dialogues: Lauren Seeley

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Welcome to a profound exploration into the world of end-of-life care. In this interview, we introduce Lauren Seeley, a Death Doula, to delve into her unique role, experiences, and the profound impact she has on those journeying through life’s final moments. Join us as we gain insights, wisdom, and compassion from the perspective of someone dedicated to supporting individuals and families through one of life’s most sacred transitions.

What drew you to become a death doula, and how has your journey shaped your approach to end-of-life care?

I took care of two of my grandmothers at the end of their life as a teenager. One with cancer, one with dementia. After that, I kind of just went on with my life and didn’t think about it for years. Then, ten years ago, I was enrolled in school for mortuary science. I wanted to gain experience in the field, so I began applying at funeral care homes and crematoriums. My interest was mostly in helping families interment and with grief, but I was told as a heavily tattooed person, I would never be a funeral director. I kind of bowed out after that until last year, when I discovered this more holistic approach of helping people at the end of their lives and their loved ones following after.

Can you share a memorable experience from your work as a death doula that has had a significant impact on you?

Realizing how much people just want to feel seen and heard at the end of their lives and how a lot of people aren’t comfortable with talking to them about death acceptance. It can feel very isolated and lonely. I am grateful to lift some of that burden and to be of support when they want to be transparent about their feelings at that time.

How do you support individuals and families in navigating the emotional and spiritual aspects of dying?

There are always two different perspectives you encounter as a death doula: the living and the dying. I try to get the living to be as present and loving as possible, and in turn, I show the same support to the dying. Anticipatory grief can often interfere with loved ones being capable of being present, especially as caregivers. I offer literature and resources as well around navigating grief at the time of death. 

What role do you believe rituals and ceremonies play in the dying process, and how do you incorporate them into your practice?

I believe that they are of the utmost importance. Clearing the space, incorporating teas and candles and calming atmosphere, bringing a soothing presence and offering touch if it is desired. I believe that every moment in life should be mindful and could be an opportunity for ritual, so the same can be said in death/dying. 

How do you approach discussions about death with individuals who may be resistant or apprehensive about facing their mortality?

This is something very common that I encounter. My Death Doula clients aren’t always dying and sometimes just want to talk about death in a safe space. If they aren’t comfortable when discussing death and dying, I usually allow them space to come back in their own time, if time permits. Books are a great way to start a conversation for those reluctant. 

Can you describe your approach to supporting loved ones through the grieving process after a death?

I accept grief for all that it is and understand that healing is not linear. Most people deep down just want a safe space to show up however they are, and openly grieve. I give that to them: safety. Acceptance. Love and Compassion. 

How do you address the unique cultural and spiritual beliefs of individuals and families in your care?

My beliefs are unimportant when it comes to the care of the dying. I leave them at the threshold. This is their time, not mine. I show up for them and what their beliefs may be.

What resources or tools do you find most helpful in providing holistic support to dying individuals and their families?

Comfort. A comfortable, loving, quiet environment. Paying attention to the needs and doing my best to be an intuitive support system. I want to create a calming and warm place around them, as free of distractions and anxiety as possible. Again, I always offer literature, online resources, and a safe space to be. 

How do you prioritize self-care and prevent burnout while working in such an emotionally demanding field?

I enjoy yoga, reading, playing an intuitive instrument (Theremin), taking long walks, and observing the world around me. I try to remain as present as possible and listen to what my body and soul need to feel nourished and recharged.  

How do you collaborate with other healthcare professionals, such as hospice teams or palliative care providers, to ensure comprehensive care for your clients?

Communication is key. I am always mindful of what health care providers suggest and their plan in place regarding the dying. At the same time, I am sensitive to the needs and wishes of the dying. 

Can you share any insights or lessons you’ve learned from your work as a death doula that you believe everyone should know about death and dying?

Dying can be so lonely when you feel responsible for holding the grief of your loved ones, though you cannot change it or prevent it. The dying need space to just be, reflect, feel seen, and held while they transition from their body. While grief is unavoidable, I believe death literacy helps everyone become more aware of how to process, accept, and spend time with their loved ones in a way that brings peace at the end of life. 

How do you support individuals who may be experiencing existential or spiritual distress as they approach the end of life?

Any emotions at the end of life are normal. I try to remind them that they are supported with love and understanding and not try to come to any resolution or convince them that they need to be a certain way. Sometimes, just talking about their fears and anxieties helps to relieve some of the burden. As a Death Doula, we can offer the space to discuss these things. Family may not always feel comfortable talking about death. We want to help the dying and the family understand what they are feeling.

Can you discuss the importance of creating a compassionate and peaceful environment for those who are dying and how you facilitate this in your practice?

Sometimes, it’s the simplest gestures that go a long way. Leaving all of our personal feelings and emotions at the threshold, we enter the space of the dying to provide care and a calming presence. Holding their hand, gentle touch, gentle voice, soothing music, gentle light, a warm blanket, and an open ear are ways to be present and soothing. We must allow the dying peace through their transition, free of fear and free of distraction. 

How do you approach the topic of legacy and life review with individuals who are facing the end of life?

Some are ready to take on legacy work right away. Not everyone is ready and accepting that their time in their body is coming to an end. I try to incorporate an artistic approach to creating beautiful memories and memorials for loved ones to have to remember them long after they are gone. Since every individual is different, I try to find a unique way in which they would enjoy putting something special together.

What strategies do you use to help individuals find meaning and purpose in their final days?

Every day is a gift! It doesn’t always feel that way, so how can we make the most of it? Most people, at the end of life, are not always going to feel up to doing much more than just resting. I find that they live to talk and tell stories otherwise! I just listen. If there is anything I can do to make their final days feel more pleasant, meaningful, and enjoyable. I do ask, and they usually tell me. But what I find is, most likely, it’s a time to reflect and talk about things that maybe they never even have had the chance to. 

How do you address practical considerations such as advance care planning and end-of-life wishes with your clients?

I ask them what pre-planning they already have in place and what still needs to be addressed. I let them know that they are likely to have the arrangements they desire if we plan early and that it will save time and stress for their families and loved ones.

Can you share any stories of transformative experiences or profound moments of connection that you’ve witnessed in your work as a death doula?

This would apply more to a fellow I was visiting in hospice care. Most of the hospice patients I visit have dementia, and that can either be in a home, hospital, or memory care center. This one particular fellow was known to others as a “difficult” patient. He refused food, swore at staff, and was extremely agitated in various ways. I started visiting him, and I would come and sit next to him, playing his favorite kind of music. Most of our visits were nonverbal. I first asked his permission to visit him again each time before I started promising to come visit him again. Towards the end of his life, he would smile every time he saw me. He began to trust me and was extremely kind during our visits (although he also felt safe telling me his frustrations and fears.) He began to talk more and conversed with me in our last few visits. I think that he just needed to feel seen and heard, and I felt so honored that he opened up to me. I’ll never forget that. I could tell that our time together made his last days a little more special.

What advice would you give to someone who is interested in becoming a death doula?

Read everything you can get your hands on about end-of-life care, funeral planning, grief support, and anything from the perspective of the dying. Research schools, volunteer for hospice, and connect with other doulas and death care providers in your community. Join my Facebook group for aspiring death doulas! (You can follow her on Instagram too) And make sure that if you have any heaviness or unresolved grief around death, that you are addressing it and actively working on healing. Death work does bring up any past trauma or experiences unexpectedly. Have support in place, and make sure you take good care of yourself. Death care is hard work but rewarding for all involved in the sense that you are bringing comfort and peace to those at the end of life and their loved ones.

How do you stay informed about developments and best practices in end-of-life care, and how do you continue to grow and evolve in your role?

I follow many social media accounts of schools, providers, authors, communities, etc. Many are also part of my death doula group on Facebook and post about their current panels, available courses, webinars, and such. I will never be done growing, learning, and evolving. I want to always know more. And I read a lot. Books are such a valuable resource. And because of the amount of reading I do; I have a book club that meets monthly to read about mortality at various funeral homes and cemetery chapels. I wish this were something everyone could do, but grateful I can share this info on the internet.

In your opinion, what is the most important aspect of being a death doula, and why?

We exist to serve the dying. Our services are needed because the dying can feel so lonely and isolated, the people around them unable to bear the weight of what it means to be dying. We can bear witness; we can bear that weight. We can help families and loved ones explore being present through death literacy and awareness. The word “Doula” in Greek means “to serve,” and that is exactly what we do for those at the end of life. 

Exploring Near-Death Experience

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Near-death experiences (NDEs) have long captivated the human imagination, offering tantalizing glimpses into what lies beyond death. We are exploring NDEs, delving into their profound impact on individuals and the deeper mysteries they reveal about the nature of consciousness and existence.

The Phenomenon of Near-Death Experiences

Whether through illness, accident, or other life-threatening situations, some people have reported near-death experiences after coming close to death. These experiences typically involve a range of sensations, including feelings of peace, out-of-body experiences, encounters with deceased loved ones, and a profound sense of interconnectedness with the universe.

The Journey Beyond

For many who have undergone NDEs, the journey beyond the threshold of death is described as a realm of light and unconditional love. Some report encountering a spiritual being or guide offering insights and guidance, while others describe traveling through a tunnel toward a radiant energy source.

The Aftermath of NDEs

While NDEs can be transformative and deeply profound, they often leave individuals grappling with existential questions and a newfound perspective on life and death. Many report a heightened sense of purpose, a diminished fear of death, and a renewed appreciation for the interconnectedness of all beings.

Scientific and Spiritual Perspectives

The study of near-death experiences has sparked considerable debate within both scientific and spiritual communities. While skeptics attribute NDEs to physiological or psychological processes, proponents argue that they provide compelling evidence for an afterlife and the continuity of consciousness beyond the physical body.

Integration and Healing

For those who have undergone near-death experiences, integrating these profound encounters into everyday life can be a challenging yet transformative process. Many seek support from therapists, support groups, or spiritual mentors to make sense of their experiences and find healing and integration.

Near-death experiences offer a glimpse into the mysteries of existence, challenging our understanding of consciousness, life, and death. Whether viewed through a scientific or spiritual lens, they invite us to contemplate the deep interconnectedness of all beings and the enduring mysteries that lie beyond the veil of mortality. As we continue to explore and consider the implications of NDEs, may we approach these experiences with an open mind and a sense of wonder, embracing the profound mysteries of existence with humility and awe.

Links for Further Exploration

Have you had a Near-Death Experience?

Contact me to share your journey and contribute to our exploration of life’s most profound mysteries.

Death Doula Dialogues: Shelley Blair

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In this interview, we have the honor of speaking with Shelley Blair, an experienced death doula known for her compassionate support during life’s final moments. Shelley shares insights into her journey, revealing the motivations and challenges behind her work as a comforting presence for individuals and families facing death. Join us as we explore the transformative power of compassion and companionship in the delicate space between life and death.

Tell me a little about your background and training and what made you want to be a doula.

It was my mother, Rose and her death that pulled me in this direction. Bless her heart! My mom passed away in 2018. and I was the primary caregiver for her for many years. She lived a good life up until about age 89, then she started having health issues and ended up in hospital. She lived her whole life on the family farm where I grew up in Kitscoty, Alberta. When her health started to fail her, she needed more help so I jumped in, and she welcomed that, and the journey began. When your health starts to decline, it can follow a slow decline for some people. That is how it went for my mother her health/age decline went on for a good eight years and then came that day when she was ready. They told my sister and I she’s not coming back; she’s palliative. I was in shock and I thought no, I’m not ready. I think I spent so much time holding her up and helping her, that it took me a while to walk in those shoes and truly accept those words – she is dying, but I started. They said the death journey, the act of dying journey, can take anywhere up to 14 days, and my mom pretty much did that. She went on for almost 14 days in a local hospital, where my sister and I were there with her through it all. At this point I didn’t know anything about dying. Our society, our culture, has put all that behind doors and handed it off to the funeral homes. Looking after my mom at this stage, I was using Google along the way; I have to be honest, I was googling a lot of information about the steps and what would happen. Two or three years before this experience with my mom, the death doula world, for some reason, kept coming into my thoughts. The death journey experience with my mom, really pushed it to the forefront for me. After she passed away, there were a lot of things that I wish I had known. What I know now is what I wish I had known then. I wish I had known how to be there, truly be there for my father as well when he died in 1999. I was just a mess, and I wish I hadn’t been because I missed a very significant part of our life together—those ending moments. I was in a different life phase, so, I think I did better with my mom. After my mom’s death, I investigated death education, and I took my End of Life training through the University of Vermont. I was so fortunate because the time was good as Francesca Arnoldy was heading the course at the time. She is a strong supporting figure in the world of death doulas and everything death and dying. She has written two or three books since and is an amazing person. I loved the course. I was sad when the course was over because I just wanted to gobble up more. This is my passion. I think I was 55 at the time. I thought, oh, this is what I want to be when I grow up. I want to be a death doula. So, the journey began. I just started volunteering with our local hospice, Pilgrims Hospice, and working in the world of death. It just fills my heart. It gives me so much love and compassion towards people, the sharing, the ability to help families walk those moments and know they can just be family. They don’t have to be caregivers. I am there to allow them to sit and be with their loved one.

What services do you offer? Do you have a checklist of services or just a tool bag of things you bring to the table?

I have found my passion working with dementia clients and end of life clients. I had a co-worker reach out when I was doing the training, and I told her what I was doing, and she said, oh my God, I need you. Her mom was diagnosed with dementia and her life was becoming harder living with the disease. Families can’t do it all. They can’t be there 24 hours. So, if I can go and sit with a family member for a couple of hours to take the load off, and they know that their loved one is in good hands. This is just so important. That was one thing the journey with my mom taught me – it took a toll on my sister and me. We were two hours away from her, so we were driving two hours every week near the end, staying for two or three days. We finally found somebody we could bring in to help us while we weren’t there to keep an eye on her and let us know if she needed anything. The hospice nurses are wonderful, but they have so much to do. That’s what I find in being a death doula: I can help offer and fill in some of those gaps to support families. My certified dementia care provider training was done on line through Dementia Solutions which is an amazing company out of British Columbia. So I am able to combine 2 essential services to families. We all know end of life doesn’t necessarily mean tomorrow. With one of my clients, it was two years. I went on the journey with her and her family for those two years, companioning her and helping her be as comfortable as possible. I was able to help the family navigate that as well. Also, I do vigil sitting. If somebody needs me to sit with their loved one so they can take some time alone and a break, I truly hold fast to the nobody dies alone belief.

That’s such important work. I’m so glad you’re doing it. What would a typical day or week look like for you regarding the number of people you see, etc.?

Right now, I have two ongoing clients. I visit them every other week, and I spend time with them, being in the present. I meet them where they are at. One thing I want to clarify is the need for balance. I also work in an office. I’m an operations manager and hearings director with a regulatory body in Edmonton. I couldn’t wear the death doula hat all the time. It’s very heavy (in a good way). I would be very consumed by it. So, the balance for me is working part-time in a different world, and I do death doula part-time. It’s just to keep my energies and emotions balanced. You do take on a lot from the death and dying world. It’s not that it’s “so busy”; it carries heavy emotional energies and I need to look after myself.

It sounds like you’re saying your part-time office job kind of grounds you.

It does exactly. I’m not consumed by it when my mind is elsewhere, doing other skills and working with different energies. 

Being grounded in that office work can be refreshing. So the next time you can be fully there.

Absolutely. I picked that up right at the beginning, the 14 days I spent in the active dying phase with my mom, those energies were heavy, very heavy. That’s something I took away from that experience. I had another client that I worked with; her husband was dying at home. The family was just exhausted. And I was brought in for the final six days. We didn’t know how long it would be, but it was six days. I was able to take the load off the family and let them just be family. Those were six long days because it’s 24 hours of monitoring things, ensuring everything is okay, communicating with the medical team, and being a conduit, being the advocate—a lot of advocacy work.

Do you have a medical background in nursing or anything like that?

No, I don’t.

What is that like to navigate the medical system?

It isn’t easy, but I’m very comfortable with it. Death doulas are non-medical, so we don’t do anything medical. Eight years of navigating the system with my mother taught me a lot. So, I guess you could say that I have an eight-year education. I am a good navigator.

That hands-on education is quite valuable. Can you share a memorable encounter with one of your clients? Something that sticks out in your mind?

With my client of two years who had dementia, as her disease progressed, she was still sitting up but non-verbal. We had developed a very hands-on relationship. I played music. She loved the old hymns, so I would play, sing, and hold her hand. I knew she knew I was there. I knew our connection was strong and with her daughters as well. They would see her weekly, and I had just become one of the daughters. I helped fill in the gap. The day that she died, one of her daughters who lived in the town was visiting her. I messaged her and asked how everything was going. She said she had forgotten something she wanted to share with her mom, so she ran home, and in the time the daughter was gone, her mother died. They reached out to me right away, and I went, and we sat with Audrey for a good hour if not more before they phoned the funeral home. It was just a wonderful farewell. It was a wonderful ending. During the funeral, they brought me into the back for viewing before they closed the coffin, and she was just so beautiful. The funeral home just did an amazing job. And I saw her as this beautiful, beautiful woman with no cares anymore. No disease. And it was just wonderful. That’s the bonding this kind of work will do. I still have a relationship with the daughters, and we get together two or three times a year. I’m their little sister. I think my connectivity with their mom brings them closer together because as they all live their own busy lives and when we get together, it’s like we’re all together with their mom again.

Does that happen often as far as keeping in touch with the family?

I keep contact yearly because I always send a note to the families on the day their loved one died. But not as deep as this relationship, though. This is a special family relationship.

How do you collaborate with medical teams? You said you waited two hours to call the funeral home. At that point, do you involve a doctor or a nurse?

She was actually at a facility at the time of her death, so there were already nurses around. I had a client who was dying at home, and because they knew he was going to die at home, you don’t have to phone the police or authorities. It was an expected death. I just let the doctor and home care people know that he had passed, and we just sat and spent time with him. We didn’t have to do anything. His daughter, who was a few miles away, was called in she came and spent time with her dad. His brother was with him and was able to spend the end with him. The funeral home was called when everyone was ready and okay with it. There is no rush to have your loved one taken away quickly.

What is it like sitting with the family after someone has passed?

It depends. I follow the family’s lead and what they want to do. It’s very, very important not to push my agenda. If people are at a loss for what to do, I try to make them comfortable. I took pictures of them holding his hand, which I later made into cards and sent to the daughter and the brothers so they would have that memory. I’m an artist, so during the vigil, I did this picture.

I shared it with the family. I played music the whole time with the blessing of the family. Music that he liked. Just quietly. And enduring what I call very active energy. As they get ready to leave, to pass, to die, there’s a lot of energy work that goes on in the body as they’re closing down and transitioning to where they’re going. When I feel that going on, and I see signs of that, I want to keep it quiet except the very low beautiful music that I play. I love to light candles, and I have my energy rocks around. Most families are fine with that. When I tell them the tools I have in my doula bag, I always ask permission to use them. So, I follow the lead of the family. I’m in the background while the family is in the forefront unless there is no family. In that case, I’m at the forefront.

So if the family is there, you’re like their rock in the background.

Absolutely. I watch and see what they need. I’m very intuitive, and I can meet needs without them even knowing what those needs are. I do whatever they might need at any given moment. That may include making sure the house is tidy. When I stayed at the house those six days, I ensured the house was neat, the dishes were done, and that sort of thing. And his wife could be in the moment with her husband.

That’s an excellent way to support people who are grieving. I love that.

She also had amazing friends and neighbors who would drop food off, so I didn’t have to do any cooking.

Have you taken care of anybody who had no family whatsoever?

Well, one of my clients is not actively dying, but she has no family. A nurse contacted me because she was in the hospital and had no family. She has nobody. So I came into her world; I guess it’s three years now, and I’ve just recently helped her move into assisted living. I would help get her groceries because her mobility was bad, and she couldn’t do that on her own anymore. She’s incontinent, so she needed the pads and stuff like that. So, I was making sure those needs were met. I started doing laundry for her; it just got too much for me because I have a very busy life. I’m also a mother; my children are now getting on their own, but they weren’t then. They were still at home. So, I helped her move into the facility, and I still have a connection with her. But she has nobody. I will stay with her until she dies and honour her wishes.

Is that a volunteer situation?

It has turned in that because she doesn’t have much money and living in the facility is costly. Before she would pay me, she lived independently in a subsidized apartment. Now, her financial situation is such that I won’t take her money. She needs that money to live there. She’s farther away from me now, distance-wise, so I’ll see her once or twice a month, but phone and talk to her more often. She has caregivers as far as the system goes. She has the LPN on staff, so I communicate with them to ensure everything’s okay. I will follow her right through to the end. I’ve helped her get all her papers in order so she can rest easy with that.

You do great practical things for your people.

I don’t push it on anybody, but when I get new clients, I always ask where they are in the paperwork journey. If they need help, I will help them, but I’m not particularly interested in that end of it. Mine is the hands-on work with the dying and the families, the vigil sitting, and things like that. But I have connections with people who do paperwork, so I can always refer them.

What would you say is a common misconception about death doulas?

It’s not so much misconceptions. They just don’t know what we do. A daughter reached out to me because she thought her dad was dying. He was in hospital. So she reached out to a colleague of mine, a death doula who turned to me because she couldn’t handle the amount of hours that her father needed. So, she brought us both in to be with her dad in the hospital. And then he didn’t die. So he returned to his assisted living facility, and she wanted us to stay.The daughter loved our work and was convinced we had something to do with bringing him home. We’re not healers, and we don’t promote that. We are just with the person and meet them where they are at and make sure their needs are met. Quite honestly, you either have it or you don’t have it. It’s just something that is a very internal thing that you make those connections as being a death doula, and you can’t force it to happen. It’s not a job. It’s something so genuine. I don’t know how to explain it.

I understand what you mean; to put it very simply, you’re born to do it, or you’re not.

Yes, you already have the tools inside. When my colleague and I worked with the dad in the facility, some of the staff were a bit cold with us when we spent time with him. So, I made a poster defining what an end-of-life doula is and what we do. I hung it on his wall. Some said thank you for doing that because they were unsure who and what death doulas were and do. Some thought we were trying to do their jobs. But it’s a totally different, we fill in gaps. We are there to help take the “load off” of staff and family. We’re non-medical, and we do not do the job that a nurse or doctor does. You can explain it to one or two people, but you can’t be there for all the shifts if they don’t pass the message on. So, the poster helped.

What kinds of things are involved in the spiritual and emotional aspects of the job?

I’m agnostic. I’m open to listening and hearing everybody’s perspective on spirituality. As for my spirituality, I like many different spiritual focuses. I’m very earthy. I believe in the nature around us. I love old time hymns. I didn’t go to church as a child, but my mom used to play the hymns. I have an extensive toolbox that I use to work with people. As a doula, you meet people where they’re at. I bring in my crystals and set them around for different energies; people have been receptive to that, some love it, some don’t mind and some don’t care. Nobody thinks I’m hokey pokey, I don’t think. Nobody’s ever said, Oh, get that stuff out of here. I use essential oils. There’s one called Protect, which is a blend of different oils. I will use that on the blankets that cover someone dying. I don’t put it on the skin or anything but just around. The smell is amazing, and it’s just a tool I use to get where I need to be. People welcome it. People are just so open. Honestly, when you get down to the nitty-gritty of end-of-life, people don’t understand death and if someone is there to help walk the journey with them, they are thankful. Death and dying has been in the closet for this whole generation, a few generations now, and we need to open it up and let people know it’s not a scary place. It’s a beautiful place. I am so honored when I sit with somebody who’s dying. And when I’m with the family, it is such an honor, and it fills my heart with gratitude.

So whether or not you’re religious or spiritual, there’s something about the dying time that is very sacred.

I felt that truly with my mother. It’s was such an honor. The nurses would come in daily to ensure she was clean and wash her. I think they interrupted some transition work she was doing once. She sat right up in bed and made a strange noise, and I just went over and put my arms around her and held her. Oh my God, it was her spirit. I was holding it, and I knew it. As for the interruptions, part of me thinks, people who are dying don’t need to be cleaned and bathed everyday. They’re doing very personal vital work, transition work to their next journey. And I think that needs to be, from my point of view, honored and respected.

What ethical considerations do you have regarding relationships with families or involvement in end-of-life journeys?

I’m a member of the end-of-life doula Association of Canada. We follow our values, missions,and standards of practice. The biggest thing is not to cross any boundaries. I don’t tell people what to do, I can suggest if I see them stuck in not knowing, but usually I wait to be asked. I can offer suggestions and referrals if they need medical help. I don’t cross any lines. I’m just there to be with the family and follow their cues; privacy is essential.

What’s the role of rituals? Do you have any, or have families requested certain rituals?

I haven’t any, and as a doula, I follow the family’s lead and meet them where they are.

What are some challenges that you’ve come across in this work?

People don’t know what a death doula is. They don’t know who I am and what I do. So if I am volunteering at my local hospital on the palliative ward, I need to talk about and promote my activities and how I interact with the dying. Just because someone is non responsive, doesn’t mean they don’t need attention and someone just to sit next to them and hold space. I, along with the other amazing death doulas are breaking ground, it’s a grassroots effort here where we’re at. We’re getting the word out. So thank you very much for the work you’re doing, helping to get our efforts and work out to the people. Canada is slowly getting to know and understand the term death doula, and what we do.

Do you carry business cards or pamphlets or anything?

I have a website. I have business cards. I carry liability insurance. End-of-life doulas are legitimate and real.

How do you balance your own self-care with caring for others?

One of the things I do is a little protection so I don’t carry unwanted energies with me when I leave a visit. I use crystal singing bowls. I recently bought a steel tongue drum and play my own music. I do my own work through the chakra energies and frequencies. I firmly believe in the strength of our frequencies. I keep myself healthy and grounded through that. I use meditation and healing music. I also use tuning forks to ground myself.

Oh, nice, so you’re always continuing your education.

Absolutely. I love it. I love what I’m doing. It just fills my heart and soul.

Will you take on more with the doula role once you retire from your day job?

I am not sure I could ever let go of my doula work. Learning about death and dying is fascinating and remarkable. We will see as time goes on, where my journey will take me.

It sounds like you get as much out of it as the people you serve.

I think I probably get more. It’s with me all the time. I read about the death process all the time to educate myself and get more in tune with what’s going on. I’m so curious about the dying process. And the communication and energies that go on. That’s so, so fascinating to me. My husband said about my time with my mom, “she helped you into the world, and you helped her out”. So I give that to my families, giving them a piece of real estate to hang on to, that they are part of the beautiful journey.

That’s an excellent way of looking at that. I hadn’t thought about it that way before. It’s that exchange of energy. The labor of birthing is no different than the labor of dying.

Yeah, it’s not. It’s just a different process. One, you come into the world, and the other, you go into another world, maybe. It could be the same. You never know, you never know. That’s what’s so fascinating to me. I know that it’s very loving. It’s a very loving process. And that’s what we as a society are missing out on by sending this all behind closed doors. That’s what it feels like, you know, it’s just hidden away. How are people supposed to know how to serve their dying? In the early 1900s, people died at home with their families. The 40s and 50s were when the funeral home started coming in. And we started shipping our dying people off to them. As a young person, I couldn’t go to my grandmother’s funeral. So sad. If I can be a part of the movement to make a change to this I will be grateful.

That could’ve been an opportunity to learn about death because it seems so scary at that age when it’s all hush-hush and in secret.

It’s that exactly. You have questions like where’d my grandma go. We should educate kids not to be afraid of death.

So, let’s close this out with some advice that you would give someone just starting on the path to becoming a death doula.

Learn, learn, and step into it, if it’s a natural calling for you. There’s so much information out there to learn. Just keep reading books. There are so many good books, so many wonderful books written about it. And follow your heart because you can’t go wrong. And talk to people about it. And people will appreciate it. People do appreciate it. Humankind appreciates the work that we do. And I know that.

Journey of Love: A Daughter’s Tender Care in Her Mother’s Final Days

~ Che Rob ~ Leave a comment

I had the honor to have a heartfelt conversation with a wonderful lady who was a caregiver for her terminally ill Mom. In this moving exchange, we explore the challenges, triumphs, and profound insights that emerge from walking alongside a loved one on their end-of-life journey. From navigating the complexities of caregiving to finding moments of beauty and grace amid uncertainty, we delved into the raw emotions and experiences caregivers share in the face of loss and love. This is a poignant exploration of the human spirit and the power of compassion amid life’s most challenging moments.

You mentioned that it was your Mom who passed. What was her diagnosis? 

She had a Glioblastoma Multiforme, which is a terminal brain cancer. There’s treatment but no cure. There are no known risk factors. So it strikes at any age with any demographics or other risk factors that you may or may not have. It affects smokers and non-smokers equally. It’s really like the most unlucky luck of the draw that you could get. 

Wow, that’s really tough. How long was it between her diagnosis and her passing? 

About two years, which is longer than the typical prognosis. So we felt lucky that we had more time than we expected. 

How far into her diagnosis did you and your sister become her caregiver full-time? 

That was probably about a year, and I want to say nine months. Well, no, it’s probably even less than that. I think we only really cared for her in her home for about two months. 

Tell me a little bit about your Mom before her diagnosis. 

Oh my gosh. My Mom, I always say she was just a force to be reckoned with. Growing up, she would just make decisions and then make the thing happen. My Dad and Mom had this relationship where they were best friends and had nothing in common. They would both go and do their own thing, and then they would come back and tell each other about their adventure, whatever it was. My Dad is a real outdoorsman, and his job was outside, and it was typically during the summer; he could be working 80 hours, and then he would also fish and hunt and all those sorts of things. So, this one time, when I was in 5th grade, he had gone away for a weekend, and my Mom said, well, we’re going to paint the dining room. I said Okay? She’s said, your Dad is going to be mad. I thought, what else is new? So we moved the furniture out of the dining room and painted the dining room, waited until the next day, we did the second coat and moved all the furniture back in, and it was all done and put back together before Dad got back. So that’s the way that she was. 

She was just so vibrant, and she loved language. She was an unofficial sort of writer. I think she was blogging before blogging was a thing. She was doing it through email. As soon as email happened, she started writing this thing called “My Thoughts,” she would send it out to all her friends; it would just be on current events or what she was doing in the garden or what we, the kids, were doing. She would write this email to all her friends once a week, and people loved it. 

My Mom always only had part-time jobs. We lived on my Dad’s income, and she worked when she either got bored or when she wanted a little extra spending money. She had a job at a radio station one time, and she wrote their commercials. She loved language. When she got her diagnosis, language was stolen from her. She couldn’t read or write, and then, in the end, she couldn’t talk.

She was also a gardener. She could do every craft in the whole world. She could knit, crochet, sew, canning, and gardening. She was just a very vibrant person. 

How long between diagnosis and when you started seeing those signs, like, okay, Mom doesn’t completely feel like Mom anymore because she’s unable to do those things she loved so much?

After she got her diagnosis, the first thing they did was debulk the tumor. So, she had brain surgery first. After that, she seemed like herself but didn’t have as much energy. That happened really quickly. And then, with chemo and radiation, it just took all of her energy. Once, we went to a park for a family gathering and decided to take a walk. We got, I don’t know, maybe 50 steps in, and Mom said she just can’t do it. So, it was really quick from when she first got her diagnosis.

 It was a total fluke that we even found the tumor. She was at my house and said I don’t feel right. I asked what do you mean and she said my arm feels numb, and I just don’t feel right. I’m a nurse, so I took her blood pressure, and it was through the roof. Her whole life, her blood pressure was in the toilet. She’s one of those hypotensive people. She would be 90 over 40, and that was her normal. But this time it was, it was 218 over 100 and something. It was through the roof. So we went to the emergency room. They did a CAT scan with no contrast and didn’t see anything. They said she probably had a pinched nerve, making her arm feel numb. They said since she had been on vacation, she probably had higher sodium food, causing her blood pressure to be high. My Mom was a very healthy eater. Her favorite food was salad. And that’s what she ate on vacation. So none of that felt right, not at all. They discharged her with a referral for physical therapy and follow-up with her primary care physician. About two weeks later, she drove to work and she couldn’t remember how she got there once she was there. She tried talking to one of her friends but couldn’t make sentences. It was like she had a stroke. We went back to the emergency room, they did another CAT scan, and they did find a couple of tiny little bleeds. They said she needed to go to a bigger hospital. 

I took her to Buffalo, and they ran a battery of tests. They didn’t tell us anything, but she started to get her speech back and could make sentences again. 

So we’re in the emergency room, and they aren’t telling us anything. The nurse finally came in with some medication. She told us she was going to give her a seizure medication. I asked why because she wasn’t having seizures. The nurse stopped and asked if anyone had come in to talk to us. I said no. So she went to get a doctor. He came in, and he said, I promise you that you are having seizures because they’re focal point seizures. That’s why your arm is going numb. 

And then he didn’t tell us anything else, just that he was going to admit her and refer her to neurology. The next day, finally, a doctor came in and told us that they suspected a brain tumor and they needed to do more tests. They didn’t tell us what kind of brain tumor at all. They didn’t tell us whether it was benign, whether it was cancerous, they didn’t tell us anything. Later that week, she got the official diagnosis and a referral to Roswell Hospital. 

She started seeing a neurologist there. He’s the one who did her brain surgery for the first one. She wound up having two. She was discharged to home, and she was pretty normal, but then they started the chemo on radiation, and that’s when her energy just got zapped. 

What is your experience or assessment of navigating the medical system? Even as a nurse, it sounds like pulling teeth just to get them to pay attention. Was that the case up until then and not after, or was it like that the whole time? 

A little bit. Some of the care was very good, and we felt it involved a lot of work. But then some of it was not. And I understood. I know everybody is busy. Everybody has too much to do. So when she started seeing her neurologist, his name was Dr. Fensterbauer, which is German for window maker, and I thought that was amazing. He made a window in her brain. He was her window maker. So, I felt ignored the first time she was in the General Hospital. They would come in, kick the family out, do their care, let us come back in, and not say anything. 

I think there’s a real problem in how doctors talk to patients because they don’t make it easy enough for them to understand. They told my Mom that there was no cure; there was only treatment, and they could de-bulk the tumor. They could do chemo and radiation, and that will make it smaller, but it will never go away. They said it might give her some extra time, but this is what’s gonna come down the road. That was all fine. But then they decided to do a trial. They used a medication that was developed for lung cancer just to see if it would work on brain cancer, too. It didn’t help, but it changes the way the tumor will show up on imaging. They call it pseudo-progression. It wasn’t a real remission, and the doctor knew it, but all my parents heard was the remission part. 

They were so excited; they thought it meant she was getting better. They also tried lots of different things. They watched a documentary, Forks Over Knives, where if you do this diet, then it won’t feed your cancer, and your cancer will die. That’s not real, but I feel like they didn’t have enough support from the medical community to understand that those things don’t work. Your body does a really good job of maintaining its pH, and you might have an alkaline diet, but your body will not be in alkalosis because you do that. As far as educating my parents, there were humongous failures.

We then went ahead with her second brain surgery. I feel like we shouldn’t have done that at all. But she wanted to do everything possible. It wasn’t too long after the second brain surgery, and trying the trial meds, and then having like this, this real good news before her symptoms started to worsen. She couldn’t find the words, she would stutter, or she would just lose her train of thought in the middle of a sentence. 

So my Dad wanted us siblings to come to an appointment with her surgeon. The surgeon told us he couldn’t do another surgery at that point. My Dad just didn’t get it and asked the surgeon, what do you mean? You told me she was better. The surgeon said No and reminded my Dad that what she experienced was a pseudo progression, not actual remission. That was a devastating day for my Dad. So we all talked about it as a family and concluded that treatment wasn’t working anymore. So why should we keep doing it? It was not helping her. If anything, it was hurting. We went to talk to my Mom because she was admitted to the hospital when we spoke with the surgeon. She had the same reaction as my Dad.

She suddenly turned to me and pointed at me, asking what do *you* think? And I just said, Mom, I think it’s time to stop treatment, and just like that, she said okay. To this day, I don’t know why she needed my approval or opinion, but she just accepted it. 

We brought her home and got her on hospice. We made her as spoiled as we could. She lost her ability to walk; from there, it was fast. She just went right down. She lost all of her left side. She couldn’t move her arms. She couldn’t stand. We had to get a lift and a hospital bed and all kinds of stuff. Once she was on hospice, I think that those nurses did a pretty good job of explaining to my parents what to expect in the dying process, so unlike when she was hospitalized. It just felt like communication was lacking. Educating our whole family was lacking. This taught me that I can’t be a nurse to my family because I have too much emotion tied up in it, you know? I might know something for sure about a patient of mine and be able to talk to their family, but it’s different when it’s happening to my Mom. It’s just different. It makes a lot of sense for doctors to not treat their children. 

That makes sense. It definitely would take a toll on you. Even knowing what you’re doing as a nurse, but then Mom is the patient, that sounds really hard. Towards the end, as far as being her caregiver, would you say that you took less of a medical role and more of just a daughter support role? Could you separate yourself from the medical part?

 We were taking total care of her. We were cooking for her, feeding her, bathing her, changing her, and giving her comfort medication. Hospice here is very limited. A nurse comes out once a week. They send an aide out twice a week to do a bath. They’re typically there for an hour. They also send out a chaplain. He’s a volunteer, and he would come and sit and pray with her, but we were doing everything. 

So the chaplain came out, did she have a particular faith? If so, did it bring her comfort in any way? 

Yes, an afterlife was something that she believed. We grew up with half-time religion, is what I should call it. My Dad never went to church. We were Lutheran, and we would go to church until about when I was a teenager, and then we just stopped. I’m not sure why. But when my Mom was faced with her mortality, she very much wanted to go to church, and she made my Dad take her, but she was going to church up until the point when she couldn’t go anymore. But yes, she enjoyed the chaplain’s visits. They would stream church, and she loved that. 

She was very much looking forward to seeing her brother. And other family members, but especially her brother. He was her best friend. He died, and she missed him so much. What she was looking forward to the most was seeing him. 

Did you have any support networks besides religion and hospice? Did you find a community you could lean on or get information from people who had gone through this before you? 

No, and honestly, it didn’t occur to me to go look. I was so busy and wrapped up in everything that we needed to do to care for my Mom. I have an aunt, my father’s sister, who paid for a private duty aide for whenever my sister and I couldn’t be there. And that was our network. Nobody suggested I go find some support, and it didn’t occur to me. 

Do you think if it had occurred to you, you would have sought that out or accepted that sort of support? 

I think I would because it was just so emotionally draining. It was rewarding to care for my Mom, but it was draining. There were just so many emotions. We were pre-grieving losing our Mom a little at a time and even a big chunk at a time. I didn’t have anyone to talk to about it. I think that would have been nice. 

What advice would you give someone just starting out the same journey you went through? 

I would say definitely find support. Find a group of people who have had to join the worst club possible because they will think of things you don’t. Sometimes, you don’t know how to ask for help because you don’t even have time to think about the help you need. People could bring dinner on Tuesdays, and it would have been amazing not having to cook on Tuesdays. But you don’t even know what help to ask for because you’re just like in this whirlwind, and yes, you need support.  

I would also advise them to learn about the dying process. I’ve been in long-term care for a long time, and I know what’s going to happen. For instance, I call the final burn that happens with a lot of people, where they just one day wake up and they’re raring to go, and my Mom had that. 

She reached the point where the only thing she could say was, Ta-Da. And I don’t know if that was her first word, and that’s why it was also her last word. She could communicate with her facial expressions or her Ta-Da’s tone. So she woke up one day, and she knew my name. She could talk to me, and it lasted for a few days. 

My sister and I were trying to make holiday plans, but we didn’t know whether we would still be taking care of Mom or if we would not have Mom. These were the kind of conversations I was having with my sister. But then she did the “Final Burn.” And I told my sister we will have to plan for Thanksgiving with Mom because, obviously, she’s doing great. But she wasn’t doing great. I missed it. I’ve seen it hundreds of times and missed it because it was my Mom. 

Even though you have the training you do, it’s just completely different when it’s Mom. You can miss some of those things that you might have otherwise caught if it was somebody you didn’t have a close bond with. 

Yes, that’s how it is. So, I would suggest people to read books. Find some way to learn what to expect during the dying process, you know, like people don’t eat as much, and then it trickles down to the point where they don’t eat at all. And that’s okay. But my Dad didn’t know that. He kept saying she had to eat. And I explained to him that people who are alive need to eat. However, a person who has a body that is starting to shut down and is starting to die doesn’t need to eat. It was a hard conversation to have with my Dad. Hospice didn’t prepare him for that. They left their booklets, but who has time to read them?

What were some of its rewarding aspects? Did you find happiness, pleasure, or laughter anywhere during your Mom’s dying process? If so, what brought you that happiness or peacefulness? And to follow that up, was there any guilt around finding moments of happiness, laughter, or peace?

Something that made me smile was having a conversation with the same Aunt about how my Dad was doing. And she said, How’s your Dad doing, Honey? And I said, Well, he’s kind of in outer space. Without skipping a beat, she said, Honey, do you think that’s new, or do you think that’s always been right? And I laughed so hard. I hadn’t laughed like that in months. And she was right. My Dad has always been in outer space. But having awesome family connections was wonderful. 

Another time, my sister and I were both at my Mom’s house at the same time, which didn’t happen often. My sister lives about three hours away. However, she was able to take some FMLA time, and her job is very flexible and understanding. She would come and spend days, then go back, and then I would spend the time. So one time, we were there together, and my Mom just wasn’t comfortable. My sister asked if she was cold. My Mom said TA-DA! My sister went to put a blanket in the dryer and then brought it to my Mom. I said, that’s brilliant. And she said, Oh yeh, I’m spoiling her. Just little things like that would bring me joy.

Once, my sister took this picture of herself from underneath, and like the clouds above her, it was beautiful. So I took my Mom outside in her wheelchair for a little walk. And we recreated the same self-portrait. So we had some great times. Before she was on hospice, when she was doing chemo and radiation, a big chunk of hair fell out. She wanted to cut off the rest of her hair and dye it purple. I said, let’s do it! So we did. She had this punk rock, dark purple hair, and she just loved it. So we found a lot of joy. But yes, the guilt of joy was there. It was mostly when my Mom couldn’t be involved in my children’s activities when the kids would have a chorus concert or something like that, where my Mom was always really involved before her diagnosis.  

Did you ever find yourself censoring that around your Mom? Did you feel like if you said, Oh, Mom, the kids are doing a play today; we can’t wait to go! Were you worried that would make her feel isolated or alone since she couldn’t be involved? Would you censor yourself, or would you share the good moments with her as well?

I shared the good moments with her. I think she wanted to know. She was truly the matriarch of our family. Before she got really sick, she made us all come together and swear that we would stick together. She just wanted to ensure that we would still be a closely bonded family. So I would share the things with her. I showed her pictures, and she loved them. But we are not the same close-knit family. We did not make good on that promise. 

Did another matriarch appear, or is that just a void now?

It’s a void. But I think my sister tries. My brother is so wildly different from us; his wife is not kind. And it’s difficult. I will not go to their house because of things she said. For instance, my husband is trans, and my sister-in-law is super transphobic and says horrible things. So I won’t go to their house, but my Dad always wants us all to get together for the holidays. I’m not going there, and they’re not coming here. 

The minute my Mom died, my sister-in-law posted it on Facebook before my kids knew! That’s how the rest of our family found out. That’s how our friends found out. I’m still mad about it. It’s been seven years. I’m still mad. 

It’s a very sacred time for the person passing, the caregivers, and the immediate family. For someone to involve whoever is on Facebook before you can process it feels like a violation. 

That’s exactly how I felt. It felt like a violation.

In what ways did losing the opportunity to process it before engaging others affect you?

Well, the whole day, we knew it was coming. My sister and I called the family to tell them Mom was getting close. She wasn’t responding to us. She was just getting close. We decided that we wanted everyone to be there. It was me, my husband at the time, who is now my ex-husband, but he was also wonderful during the whole time that my Mom was dying. He helped take care of her. So it was us, my sister, her husband did not come, my Dad, my brother, and his wife, and then they brought all of their four young kid, which was fine. I think children living among the dying is great. They were great up until the point when they got bored and started acting up. Her response was spanking them, which turned into this whole thing. So, my sister is one of the kindest people that I have ever met in my life. If something needs to be said, she can say it most gently. She’s so good at it. She asked my brother to come outside and talk and asked him if the kids could maybe go to my house to be with my kids because the environment was getting tense. He then took his wife outside to talk about it. She had a complete temper tantrum. She told my sister what a horrible person she was and how entitled she was. Just saying awful things. She said, my kids are not welcome here, and then she started yelling and screaming while my Mom was dying. Finally, she did agree. She took the kids to hang out with my kids. My children were in their late teens to about five years old. They all just hung out together. Then my sister-in-law came back, but she was mad the whole rest of the day. So that’s how it started. 

Then things just settled down into an uncomfortable peace. But my sister and I were really able to just be with our Mom while she was in her last hours. 

Then it got late, and my Dad was watching TV, which my sister took exception to. She told me I don’t want the TV on; this is a sacred time. But it was my Dad. So we just let him do his thing. 

When my Mom was actually taking her last breaths, my sister saw it first and said there she goes. I looked at my Mom with fresh eyes. And I could see, Oh, she’s right. I told my Dad that Mom was really close. He came over, and he held her hand. She took a couple more spaced-out breaths. Then, on her last breath, it was really beautiful. She took it. And then she just relaxed in such a way, with just a tiny smile. We watched her go. It was just such a beautiful moment.

My sister went over to my Mom’s wine, which she wouldn’t drink anymore because it tasted bad. She poured everybody a glass of wine. I suggested we go outside. So we went outside, toasted my Mom, and we all dumped a little bit on the ground. It was this really beautiful family moment. 

We eventually called the funeral home. They said they could come immediately or in the morning. They left it up to us, so we told them to come in the morning. We just stayed with my Mom. Then, during that period, I got on Facebook just to scroll for a little bit. That’s when I saw my sister-in-law’s post. I showed my sister. The post just took something sacred and tarnished it. That’s a spiritual moment. It’s not a Facebook moment. 

I still hold a grudge about it because there were reactions and people saying I’m so sorry by the time I saw it. I didn’t even have a chance to call anybody to talk to them like a human. I’m so upset because she took the humanity out of it.

Oh, I’m so sorry. I can’t imagine how that felt. 

And I’m doubly offended because she’s also a nurse. How can you be a nurse and just lack so much basic humanity? 

It would be one thing if it was her Mom, and she wanted to do that. But for her to force that on you guys sounds like it’s still a pretty deep wound. 

Yeah, I didn’t even have a minute to process. I knew we all knew this was coming and going to happen. But at the moment, nothing prepares you for the moment. You can know it’s coming all day, but that doesn’t mean you’re prepared. 

Yes, there’s a difference between intellectually and emotionally prepared. You know what will happen, but that doesn’t mean your heart isn’t devastated when it does. 

Yes. Yes. My heart continues to be devastated by it. Still, even to this day, I’ll be out shopping, and I’ll think, oh my gosh, I got to tell Mom, or Mom would like this. It still happens. 

She was a central figure in your life, and you spend your life with a person on your mind, or you’re able to be in their presence at any time your whole life, then suddenly, they’re gone. Is there anything that makes you smile when you think oh gosh? I wish Mom was here for that.

Yes, and also, her Facebook is still open, so every once in a while, I message her something like, Mom, I hope you’re having a great afterlife. I heard this thing today and wanted to tell you about it. Hope you check your Facebook in heaven. I’m kind of a goofball about it sometimes. 

Your sense of humor is still intact when it comes to your Mom. That’s awesome. Humor is almost like a salve to nurse those wounds.

Absolutely, yes, and I rely heavily on it. I can find it in just about everything. If there’s a terrible joke to be made, I’ll make it. 

Gallows humor can be comforting. It helps you rise above the pain of it all for a brief moment. As far as taking care of her physically and being there with her, did that get easier or harder as it progressed? Did you fall into any sort of comfortable role? Or was it always just this resistance to this thing looming over your head? 

Things that were hard for her always were hard for me. She couldn’t talk, so she couldn’t tell us what she needed. For instance, she didn’t want us cleaning up her bowel movement. She would hold it for a long time. And my sister finally said put her up in the lift. And put the bedpan underneath her. Because then she can’t hold it. My Mom would scream and cry the whole time. That never got easier. Things that were hard for her were hard for me. Things like turning and bathing her got easier, but I think she was more accepting of that part. She didn’t fight that, and she didn’t get upset. 

The only thing she would never let me do was brush her teeth. Even though she did a terrible job, she still wanted to do it. So I put the toothbrush in her hand and helped her hold it. That was hard. It brought home that this is real, this small thing, the toothbrush. I have to hold her hand so she can hold her toothbrush.

It wasn’t hard or easy, but it had this depth of feeling in it. This is real. I can’t undo this. I can’t make this better. I guess that’s where a lot of acceptance came for me.

Did you have any rituals you did with or for her that reinforced the sacredness of the dying time? Like put on music or special smells she liked or anything like that or prayed with her? 

We did sillier stuff, I guess. We would paint her nails and toenails. We would do a spa day. But as far as rituals, I didn’t know there were things like that to do. We could have used the death doula, for sure. 

Do you think a doula would have helped with that? 

I so wish that I had known about death doulas. I think we tried to put much of that sort of responsibility on hospice. We thought they could tell us what to do when someone is dying. But they didn’t. And I’m not faulting hospice in any way. It’s just that here, hospice is spread so thin that they can’t give people the necessary time. They just have so many patients. They have three counties, and they are socioeconomically poor in this area. I think hospice, even though it’s a great resource, just didn’t have resources themselves. And I’d never even heard of a death doula until years after my Mom passed away. I wish we had, though; I wish we made a little altar of important things for her and put it where she could see it. She had her pictures around her, but like little mementos that maybe we had in our homes that were important. My niece got her a tiny teddy bear, and my Mom loved that thing. That was always with her. It was one of the last words she could say, and she named him Wambly. I don’t know where that name came from, but it was his name. When she was cremated, Wambly went with her. So his ashes are with her, and that gives me joy and comfort. Her favorite blanket is in her ashes as well. 

Oh, I love that. What a thoughtful send-off. This one might be hard, so just let me know, and we can skip it. Are there any regrets that have turned into lessons that, if another loved one has a journey similar to your Mom’s, are now in your tool belt? 

Something that I wish that we had done with my Mom is talk to her about her end of life, about how she wanted it to go. We didn’t have a vigil plan. I don’t know what her wishes would have been if we had talked about it. Would she have wanted the TV on, or would she have wanted music and candles? You know, I don’t know. I would change that. If my Dad doesn’t die suddenly, that’s a conversation I want to have. Will he want the whole family around or one person? I think my Mom wanted the family around, but I don’t know if my Dad does. There’s just a sense that I got it from my Mom, but I never actually asked her. That’s my biggest regret about it, that I would change. 

So, would having hard conversations be something that you would advise anybody going through a similar situation?

Yes, we didn’t ask my Mom if she wanted to do a legacy project. With the way that she loved talking to people I think that she might have wanted to like write letters before she lost that ability. I would probably ask my Dad if he would want a legacy project.

How were you able to balance your life and your needs, emotional and otherwise, with being a caregiver for your Mom?

I didn’t do much for myself while taking care of my Mom. But I did one thing: I would still go to the Y and do my Zumba class. That was really cathartic to just get out there, sweat, listen to music, and not think about anything except how I was supposed to go. When you are concentrating on trying to keep up and make those moves, you don’t have a space in your brain to think and wonder how Mom is doing. I needed it because even like taking a shower, it was as fast as I can because I gotta go. Like making kid’s lunches, everything was just going so fast. Then I would be with my Mom, and everything slowed down when it was just us. I did get a lot of reading done. I think that was probably a good part of my self-care, being able to just take a break from it. 

Is there anything you do to memorialize her death date, birthday, or some other special time? 

Yes, my Dad took her ashes to Alaska because they had a bucket list trip, and my Mom couldn’t ever go because she got sick, and there was just never a good time between her treatments, or she would deteriorate in some way. It was really important to them. When she first started seeing Dr. Fensterbauer, they knew visiting Alaska was something important to them. They were going to do this first. But then there were just always too many “We have to do this first,” So my Dad took her ashes to Alaska and left them there. So I miss I don’t have a place to go to feel like she’s there. My Dad sold their house, and he moved. He couldn’t be there anymore. 

My Mom was a huge gardener. So I have a garden that I buy new plants for her every year. There are blueberries and blackberries and flowers. Her birthday is April 29th, which is perfect for planting. So that’s what I do on her birthday. I buy her another plant.

Do you have anything you have chosen to be like a sign or a symbol? Some people say whenever a cardinal comes to me, I know that’s Mom because she loved Cardinals. Do you have anything like that? 

I don’t really. I usually talk to my Mom in the kitchen because that’s where she always was. You were not gonna leave her house hungry. And she was gonna make it from scratch. I have a cookbook she wrote, and I use it often. There are typos in it, and some of them are just fantastic. One of them says to put a cup of salt in something. Whenever I encounter something like that, I just talk to her like she’s just standing there with me. But I don’t have a sign that I feel is from her. But I think she is around and can point me in the right direction when I have questions. 

I’m glad you have that. It has been amazing talking with you. I appreciate your willingness to do this, your vulnerability, and your willingness to talk about such a sacred time with someone you loved and were so close with. 

Well, thank you for doing this work and for listening. It was a lot of emotional work, but I enjoyed it.

This conversation reminds me that the human spirit is so full and so interesting. Even during the hardest of times, one can find glimmers of hope or even humor. While in so much devastation and so much pain, we’re somehow able to pick back up and do it all again tomorrow. The strength of the human connection transcends death. We are always going to feel connected to the departed, and there’s beauty in that.