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Who Are The Members Of Your Death Care Community?

who are the members of your death care community

Most people don’t know about or haven’t considered the concept of a death care community. Or, if they think about the end of their life, they make assumptions about who would care for them or make decisions for them if and when they can’t do that for themselves.

Quality End-Of-Life Care: Establishing A Death Care Community

However, all too often, the ones we assume will take care of us aren’t able to when the time comes. Or, your spouse’s or children’s ideas about what’s needed for your end-of-life care may differ from yours – especially if you don’t have a clear advanced care directive or end-of-life care plans. As longtime hospice care providers, we feel people should take the time to deeply consider who the best choices are for being part of their personal death care community. 

What Is A Death Care Community?

In hospice services, we take a broad spectrum approach to end-of-life care, including clinical and non-clinical professionals who honor our clients’ physical, mental, emotional, and spiritual well-being.  We encourage clients and the public to take a similarly comprehensive approach when creating a death care community, which doesn’t need to be more than two or three others—but can be more.  Examples include:
  • People who are comfortable talking about, facing, and working through end-of-life issues with you.
  • Professionals/clinical people who are familiar with your medical history understand and care about your values and commit to supporting your end-of-life wishes. 
  • People you trust to honor your advanced care directive and end-of-life plans (even if those closest to you are asking for something different).
  • Those willing to help manage things around the house or wherever you choose to die.
  • People who can calmly and confidently hold your wishes as “law” if others are pushing for their own agenda and when you can no longer do so.
  • Provide support for your immediate circle of family and loved ones.
Let’s take an independent look at each of those.

People comfortable with end-of-life topics and emotions

First and foremost, your death care community consists of individuals who can talk to you openly about end-of-life issues. Our culture is getting better about this, but it’s primarily been a “death avoidant” and even “death phobic.” People will go to great lengths to stay alive despite the pain, suffering, or depleted quality of life that may entail. Your end-of-life care community honors that death is as sacred and meaningful as birth, and they are wholly devoted to honoring your end-of-life wishes, even if they differ from their own. These are the people who will:
  • Ensure you don’t receive treatments or life support options you don’t want.
  • Hold the boundaries for who can be present and when during your last months/weeks/days based on your written wishes.
  • Provide respite care for spouse/family caregivers so they can nourish themselves and take care of their needs, especially during those last weeks/days.
  • Provide the “heavy lifting” of your end-of-life care so your spouse and family can be present with you and not distracted by the “business” of dying.
  • Helps orchestrate meals, housekeeping, errand running, etc., as needed.
  • Honor and participate in your vigil and after-death care plans.
  • And so on.

Professional or clinical support

These days, it’s increasingly common for end-of-life care to come from hospice care providers, but sometimes, it winds up being hospital personnel in clinical settings. This is a shame for the 70% or more of all people who say they’d prefer to die at home, surrounded by the people (and pets) they love. However, in most cases, you do need some type of professional or clinical support to help you comfortably die at home. While we always advocate having a hospice team in place who are happy to work with others in your death care community, you may also want to look into things like Death Doulas, who are a wonderful bridge between you, your loved ones, and your healthcare team.

Those who will continue to uphold your end-of-life plans

Your end-of-life plans may not rest well with those who love you the most, especially if they become afraid, feel you are suffering, or respond in a knee-jerk way during a medical episode. This tendency for people to call 911 or wave off their loved one’s wishes to do what they feel is best can lead to you dying in places and ways you didn’t want to. Finding even a single person or two (your hospice and/or death doula are also helpful for this) who are committed to honoring your wishes and reminding others of them when things get tough is essential.

Someone(s) to keep the household running

All sense of time and scheduling can run amok during the last months of a person’s life, especially when they are actively dying. Your death care community can include friends, neighbors, church members, etc., who enjoy bringing in support for others.  We utilize an incredible team of community volunteers in the hospice world. Your death care community can do the same thing, including things like:
  • Respite care for primary caregivers.
  • Grocery shopping.
  • Pet walking.
  • Companionship (Reading, playing games, listening to music together, etc.).
  • Light housekeeping.
  • Plant watering or light gardening.
Your death care community can create a wish list for you, your household, and your family and then try to fill as many gaps as they can.

Honoring Your Vigil Or After-Death Care Plans

Finally, your death care community is also there to support any wishes you have for the ambiance surrounding your death, including a death vigil. They can also help those you’ve requested be a part of your after-death care plans.  Again, having these things written down and then choosing someone to help manage them can be an invaluable gift to your closest loved ones, allowing them to “just be with you” rather than having to think about logistics and the linear world.

Let Hospice of the Golden Isles Be Part Of Your Death Care Community

Hospice of the Golden Isles has been serving as part of Brunswick and its surrounding residents’ death care community for nearly 50 years. We are always happy to partner with your existing death care community or help you establish one.  Contact us to learn more about our services and all of the ways we can provide support as you and your loved ones face the end of your precious life. We hold death as sacred and want all of our clients and their families to have a meaningful and peaceful experience.

What Are My After Death Care Options?

what are my after death care options

Did you know that you have options about what happens to your body after you die? As hospice care providers, we spend time educating our clients and then listening to them as they decide what they would like in terms of care for their body after they die. We refer to this as their after-death care options.

These options range from having a mortuary arrive immediately to retrieve the body to having family members or caregivers spend some time playing their favorite music or reciting a chosen poem. It can even include the return of the ancient tradition of washing and anointing (or blessing) the body to honor it and prepare it for what comes next.

After Death Care Options Explained

Many of the plans clients make are reminiscent of how things used to be and a shift away from the late 20th and early 21st century’s more mechanical “wisk the body to the mortuary” approach. That said, it’s your body, and you should be able to create any after-death care options you like, assuming they comply with the law in your state and that you have a death care community willing to support your wishes.

What Is After Death Care?

The term after-death care describes the finite period of time between the moment you are dead and the moment your body is in its final resting place (in whatever form that will take).  Last month, we posted a blog reviewing some of the most common things people choose to do with their final remains (burying, cremating, composting, etc.). We mentioned aspects of immediate end-of-life care, but today, we’d like to discuss that sacred time window in more detail.

The after-death vigil

Some of our favorite definitions of vigil, which originates from Latin and means awake (Oxford Dictionary), include:
  • A period of keeping awake during the time usually spent asleep, especially to keep watch or pray [or any other contemplative practice].
  • A stationary, peaceful demonstration in support of a particular cause, typically without speeches.
Maintaining an intentional vigil in the minutes or hours after a person dies honors the individual’s life and death – as well as those willing to be present.

Be intentional about “being-over-doing” to honor everyone’s presence

There is often a knee-jerk reaction by caregivers or loved ones immediately after a person dies. Our lack of practice being with those who are dying and the dead means we may jump right into “business mode.” While it gives you something to do and may distract you for a moment from an uncomfortable reality, an automatic jump into “doing rather than being” takes away from the precious essence of what just occurred.  If you move into action too quickly, you miss an invaluable and once-only opportunity to be present with the one you love in their sacred (or transformational) transition. Even those who aren’t religious honor that an energetic transition has occurred, which is as meaningful at the end of life as it was at the beginning. A vigil can include the immediate day and hours preceding your death, as well as the days or a week afterward. Vigil plans are typically written out or recorded by a family member, loved one, or caregiver as part of your end-of-life plans.   Once your body is declared dead, there are options about what happens next. While hospitals, nursing homes, or acute/rehab care facilities may (or may not) need to move your body to another location to honor your wishes, they are almost always willing to accommodate some type of short, after-death body care practices.

Think about what resonates with you

As with your end-of-life and body-processing choices, the decisions around after-death care options should be more about what you want than what others want.  Think about what resonates with you when it comes to:
  • The length of time you’d like your body to remain in place (if possible) before being taken to the next point on the after-death journey.
  • Who you want to be there
  • Who you do not want to be there
  • Any music, songs, or words you’d like played/sung/read during that time
  • Anything else that springs to your mind when you think about an after-death vigil
Once you’ve created an outline, begin sharing it with your hospice team, family, or others who can help facilitate

Washing and dressing the body

If you’ve heard grandparents share stories about the death practices they witnessed as children, or if you’ve read historical non-fiction/fiction, you may have heard or read the term “washing and dressing the body.” This is a ritual bathing of the body, and it is legal in all 50 states. This practice is becoming increasingly common as more people create intentional after-death care plans. During this process, bed linens are switched out for clean ones (if possible), and the body is respectfully draped as loved ones and/or caregivers gently wash it with warm water and soft cloths. Feel free to suggest your favorite scents that can be added to the water via essential oils.

Anointing or blessing a body

Anointing a body with oil or blessing a body is something that many priests, pastors, ministers, and hospice chaplains are happy to do for you upon request. However, you can also have a simple version of an anointing orchestrated by a willing spouse, partner, family member, close friend, or caregiver. With a small vessel of oil (olive, coconut, or scented massage oil), they can rub a small drop on specific areas of the body while saying simple blessings, prayers, or meditations. We included one version in a recent post that says: Bless these eyes that have seen so much. Bless this heart that has loved, been broken, healed, and loved then again.  Bless this body that housed and carried your name’s spirit throughout his/her life.  Bless these feet that have walked paths both known and unknown.  May (Your Name) find peace and grace. And, of course, you can write a blessing for yourself or ask someone you love to write a blessing for you.

Prepare music, readings, or songs

An after-death vigil is not all that, unlike an end-of-life vigil, although some of the requests may be different. Sometimes, clients request that we or someone they care for play a specific piece of music, sing a song that is special to them, or read a favorite poem, verse, or prose excerpt after they die. This can help anchor the space and give those present something to do—and a way to honor them—while also paying homage to the time and space where they took their last breath. All of these instructions, and copies of what you’d like to have read, can be included in your after-death care instructions so they are easily accessible after you die.

Extended after death vigils in the location of your choosing

Did you know you don’t have to have a funeral at a mortuary or place of worship? Many people are choosing home funerals, green burials (with on-site funeral options), etc. Using simple care practices and dry ice; you can hold a vigil at home or in a location of your choosing (as long as it complies with local laws).  This is very common in the Jewish tradition, where attendees “sit shiva” with the body around the clock for anywhere from 24 hours to a full week (depending on a person’s beliefs or desires). However, anyone can create plans for an after-death vigil, allowing loved ones or those who live further away the chance to be with the body for last words, rituals, or presence before it is prepared for the next step (burial, cremation, donation, etc.). We recommend asking your hospice care team what’s possible and doing online research. Again, our hospice chaplain or your religious leader of choice may also have some suggestions. Additionally, the National Home Funeral Alliance is an excellent resource to get you started.

Hospice of the Golden Supports Clients’ After Death Care Plans

Would you like to know that your end-of-life plans will be carried out according to your wishes, including your after-death care options? Partner with the incredible team at Hospice of the Golden Isles. We are here to support you and your caregivers as you prepare for what comes next. In addition to providing information, education, and resources, we’ll work with you to ensure you have as much choice as possible in this precious and sacred time. Contact us to learn more about our services and offerings.

What Is Possible For My Body After Death?

what is possible for my body after death

One of the most sacred aspects of working with hospice and making end-of-life plans is the ability to choose what happens to your body – and how – after you die. It’s worth considering that our grandparents and great-grandparents were not usually whisked away by strangers from a mortuary and then processed before burial or cremation. 

Instead, they were typically “laid in state” for some time (often three days or so), so family and friends had a chance to experience the finality of their death and have an opportunity to pay their respects. Even in the modern era, there are many possibilities for what happens to your body after you die – beyond the most common mortuary-cemetary/cremation routes.

What Would You Like To Happen To Your Body After Death?

Part of creating thorough end-of-life plans involves the practical aspects of how you want your body handled after you die.  After decades in the hospice field, we’ve heard countless patients say things like, “What do I care, really? I’ll be dead. Just bury/cremate me….” On the other end of the spectrum are those with all their burial or cremation plans under contract with a mortuary and plans drawn up for their funeral, memorial, or celebration of life. Even so, there are ways you and your loved ones can tend to your body before all of the business is set in motion, bringing more presence, reality, reckoning, and sacredness to the process. Regardless, once we really get to know our clients and they move closer toward their end of life, deep conversations often bring up feelings about caring for their dead bodies that they didn’t know they had.

Planning Your Vigil Can Support After-Death Care Plans For Your Body

One way to start considering what you’d want for your body after you die is to think about what you want – and how you want to be cared for – during your last week, days, and hours of life. This period is called a Vigil. You can research how you’d like your vigil to be supported. As you do that work, it naturally transcends into thinking about what you want for the moments, hours, or days between your moment of death and when your body is prepared for burial, cremation, or whatever other plans you’ve made.

Ideas To Consider After You Die

Unless you are 100% set on what you want, we recommend checking in with your closest loved ones to see what they want or would benefit from.  This may look like:

Waiting for a while before calling the mortuary.

Sometimes, people’s lack of knowledge about “what to do” causes them to jump into action before they know what they’re doing. Perhaps this makes sense in the situation, but many people regret that they didn’t take the time to slow down and soak up this last chance to be with the physical form of the one they loved. However, you are also welcome to make plans that:
  • Give those present time to witness and honor this sacred moment.
  • Give other dear loved ones a chance to come, sit, and spend a moment in the finality of your life and death.
  • Allow dedicated caregivers the chance to say goodbye.
  • Have special poems read, songs played, or candles burned to honor your spirit.
  • Allow pets to come in and have the chance to see that the body is no longer living.
  • Offer space for anyone there to take deep breaths in the silence, praying, meditating, or simply honoring the moment.
The moment of death and the reverent moments/hours that follow are not unlike birth; they only happen once in a person’s lifetime and can never be reclaimed. 

Having your body after death washed, dressed, and anointed (blessed/honored)

Washing and clothing the body, placing it in a shroud (if desired), and adorning it with flowers or precious items have been part of human death rituals for tens of thousands of years. Women in the community traditionally did this, but not always.  This can be an incredibly moving experience for the chosen ones you have asked—and they have accepted. All it requires is a clean cloth or two, a bowl of warm water (maybe sprinkled with your favorite scented oil or herbs), and tender loving care.  After your body has been washed, you can have a blessing said over you. If you don’t have a particular religious or spiritual leader of your own, hospice chaplains are happy to do this for you – and we can help you select the words you’d like spoken or read for this meaningful moment. You can also have a trusted caregiver, loved one or friend do this for you. It can be as simple as: Bless these eyes that have seen so much. Bless this heart that has loved, been broken, healed, and loved then again. Bless this body that housed and carried your name’s spirit throughout his/her life. Bless these feet that have walked paths both known and unknown. May your name find peace and grace.

Lying in state

Speak to your funeral home about opportunities to lay in state, which is also known as a viewing. While we’re most used to attending viewings in the mortuary, there are ways to have them held in the home or a place of your choosing. Speak with your hospice service, chaplain, or death doula to learn more about your options. You can also visit the National Home Funeral Alliance website or contact them for more information. When people have had their chance to say goodbye, your mortuary of choice can come to take the body for whatever plans you’ve made.

Burial, Cremation, Or Donation?

The final decision you have to make is how your body will be disposed of. In the recent past, there were three basic options:
  • Burial
  • Cremation
  • Donation to science
However, in recent years, there are even more options than ever before. Much of this expansion in body disposition is the result of people who want to minimize after-death care effects on the planet. The chemicals used in embalming, the cement cases used for traditional burials, and the carbon footprint (namely emissions) associated with cremation have led to innovations in more eco-friendly (or green) after-death processes. Most of the non-traditional routes, like home funerals and natural burials, are far less expensive than using traditional mortuary and funeral home services – and can also be highly customized. If you are interested in learning more about alternative options for body disposition, you can research things like:
  • Green burials. This term is rather broad and worth researching in more detail. Some traditional cemeteries offer a version of “green burial” but legally have to retain the cement vault in the grave. Or, you can work with cemeteries exclusively dedicated to green burial practices.
  • Natural burial. Natural burial grounds are growing in popularity, with a return to the roots of our culture’s burials. Some are located in nature preserves (like Honeycreek Woodlands), and others are within city limits (like Altlanta’s Milton Fields). Cemeteries honoring natural burial rituals usually have their own rules, which may include things like no embalming, specific no-toxin coffins/shrouds, and only native plants allowed to be planted on or near the site.
  • Mushroom suits. You may have heard about the mushroom suit concept, which jumped into the spotlight after the death of actor, Luke Perry. Mushroom suits use spores of mycelium that expedite the composition of the body. This is one way to participate in a burial but also makes the composting process happen faster than it might have otherwise.
  • Composting. Human composting, natural organic reduction (NOR), is another branch of the green end-of-life/burial movement. Spreading ashes around a tree or in a garden can actually harm – more than help – if the ashes are not properly distributed with rich soil. Human composting expedites the decomposition of the body, usually between 30 to 60 days. Afterward, your composted remains can be returned to loved ones, mixed with healthy soil, for planting. Or, you can donate your composted remains to a soil conservation organization.
  • Cremation. While traditional cremation (alkaline hydrolysis) is an option, some crematories now offer water cremation, which uses an alkaline fluid to dissolve the body’s tissues. All that is left are bone fragments that are then pulverized into an “ash” that you can keep in an urn or sprinkle the same way you would with traditional cremation remains.
  • Donating to science. You also have the option of donating your body to science. This would be another topic to research in detail. Many universities offer this option, and a common course of action is to embalm the body to support medical student studies. However, you would need to connect with an agency that accepts donated bodies to learn more about how your body would be used. When they are done with the body, the remains are buried or cremated in accordance with your wishes.
As you can see, there are many options for body disposition (these are just some of the most common). We encourage individuals and families to learn more about all of the possibilities so they can choose a path that aligns with their wishes and values.

Hospice of the Golden Isles Supports Clients After-Death Planning

When you choose Hospice of the Golden Isles as your palliative or hospice care provider, you join a team of compassionate, supportive, and informed professionals dedicated to your end-of-life wishes. This includes helping you learn all that is possible for your body after you die. Contact us to schedule a consultation and learn more about our services and how we can support you and your family.

Balancing Life And Caregiving: 5 Tips From Hospice Professionals

balancing life and caregiving 5 tips from hospice professionals

The role of family caregiver is challenging even in the very best of situations, make it hard balancing life and caregiving sustainably. In almost all cases, especially with terminal or chronic illnesses, the situation is progressive, so the needs and challenges increase over time. 

Unfortunately, caregivers can become the proverbial frogs in a pot of ever-heating water, not recognizing when to jump out, regroup, and create a realistic plan. Learning how to balance life and caregiving is critical, or you risk developing caregiver fatigue and burnout. While this isn’t ideal for you, it also compromises the care and well-being of your loved one because worn-out or (worse) burned-out caregivers simply can’t provide the level of care most homebound or bedbound people need.

Red Flag Statistics: Caregiving Without Balance Leads To Burnout 

The title of an article published in the Journal of the American Medical Association (JAMA) says it all: Caregiving as a Risk Factor for Mortality… The article illuminates the alarming statistics related to spouse and unpaid family caregivers, saying: …the combination of loss, prolonged distress, the physical demands of caregiving, and biological vulnerabilities of older caregivers may compromise their physiological functioning and increase their risk for physical health problems, leading to increased mortality. Some of these statistics include:
  • More than 30% of spouse caregivers over the age of 70 die before the person receiving care does (some studies have found this statistic to be even higher).
  • Caregivers have notably higher-than-normal rates of heart disease.
  • Other studies find that 60% of caregivers struggle with mental health issues (typically depression and anxiety) they never experienced before caregiving.
If you become a caregiver for a spouse or family member, these five tips from hospice professionals can support your journey toward a healthy balance. 

5 Resources For Balancing Life And Caregiving For Greater Well-Being

Don’t fall into the micromanaging martyr abyss

We will lead with this one because the idea that “nobody can do as good as you can” may be accurate, but we guarantee they can do well enough to give you a break. Caregivers often feel so out of control of their lives that they begin taking control of the one thing they can – their role as Caregivers. This is perfectly normal. However, if you’re a caregiver, you become your worst enemy. In order to take breaks, nourish yourself, and create the balance between caregiving and life living, you must release the reigns and allow others to have their turn. If nothing else, this is important because when you do get sick, or sprain an ankle, or want to visit a newborn grandbaby, others need to know the ropes, and they won’t be able to do that if you don’t let them. So, avoid the trap of becoming a martyr, criticizing others for not doing it right, or otherwise becoming a “Caregiver Control Freak.” It’s not good for you, the one your caring for, or those who want to help but quickly run for cover if they aren’t welcome or are made to feel inadequate.

Don’t wait too long to contact hospice

Most people sign up for hospice care so close to their death that their spouse and family can’t take advantage of all that we offer. Regardless of your care plan or desire to pursue treatment, it’s never too early to learn more about the hospice services in your area. When people ask, “When should we call hospice?” we say, “Now!” That’s especially true if you or a loved one has a terminal diagnosis, is experiencing moderate- to severe progression of an existing disease/condition, or when the client can no longer perform daily tasks for themselves. Even if you’re not ready for hospice, we can talk to you about palliative care options until you’re ready so you have access to caregiver support and resources 24 hours a day.

Take advantage of respite care (aka “substitute caregivers”) when balancing life and caregiving

Respite care is the professional term for finding a qualified adult to give you a break. This might be a once-a-week break, or it may be more scheduled in alignment with your existing healthcare appointments, social engagements, etc.  Respite care is available in many forms:
  • Asking for help from other family members and siblings (take shifts, ask for what you need, have out-of-towners come stay with mom/dad for a few days or a week so you can go on vacation…). 
  • Seeing if your religious or spiritual community offers volunteer respite care.
  • Take advantage of your hospice volunteer team, which may be able to provide weekly time off.
  • Connect with local caregiving agencies and see if they offer respite care, which can be funded by adult children/siblings/extended family who can’t provide the level of physical support you are.
  • Adult daycare is an option for those well enough to leave the house, providing skilled care for adults while their primary caregivers get a break. 
Respite care may give you the opportunity to do everything from meeting your friends for coffee or taking a nap to running errands or attending routine healthcare appointments. Once you get into the respite care routine, you’ll wonder how you lived without it.

Ask for what you need from your community

If you’re caring for someone you love, odds are you’ve heard multitudes of people say, “let us know what we can do for you.” They mean it, but caregivers rarely actually ask. However, there are so many things your community can do for you (including your hospice team) to support you during this time. In addition to taking on some caregiving shifts so you can get a break, think about things like:
  • Having a friend set up a MealTrain so you have access to premade healthy meals, snacks, or gift cards. 
  • Doing chores or errands. If you could use support with household chores, pet walking, errand running, and so on, ask someone to set up a CareCalendar or LotsaHelpingHands page for you, so people can sign up to help with any task you need.
  • Walk and exercise pets. If your pets are neglected, look into dog walking services. This is something a neighbor or friend may want to do for you, or you can pay a professional to come by to take your dogs on walks or to the dog park, change your rabbit’s cage, or pet and brush your cat.
  • Ordering groceries online for delivery. If you haven’t done this yet, take the plunge. Almost every major grocery store now offers home delivery, so you can fill up your “cart” online and have fresh foods (or premade meals) delivered.
Revisit Tip #1 and resist the urge to say, “I’m fine…” when people ask how they can help. Giving them a specific request is exactly what they want – to support you.

Think about transitioning into a hospice house

If you are 70+ and your spouse/loved one requires full-time care, think about transitioning your loved one into a hospice house. These are beautiful spaces that provide compassionate, supportive, and all-inclusive end-of-life care. You can spend plenty of quality time with your loved one while having complete peace of mind, knowing they’re receiving heart-centered care in their remaining days. 

Connect With Hospice of the Golden Isles For More Resources

We hear about “putting your oxygen mask on first…” all the time, but caregivers typically do the opposite, and they pay a price if they aren’t careful. Hospice of the Golden Isles has helped caregivers balance life and caregiving for over 40 years.  Since 1980 Hospice of the Golden Isles has provided expert, compassionate care for patients with advanced illness and their families in the five counties we serve – Glynn, McIntosh, Camden, Brantley, and Charlton- based in Brunswick. As a non-profit hospice, we serve all eligible patients, regardless of age, sex, illness, religion, insurance, or ability to pay. Contact us to learn more about how we can support your caregiving needs.

Creating A Death Vigil Plan For The Days Before You Die

creating a death vigil plan for the days before you die

The term vigil is rooted in the Latin word for awake. When we speak of vigils around deathbeds, the term can refer to those who stay “awake” and hold space and presence for someone who is dying. For some, a vigil encompasses a set amount of time after they die so that caregivers or loved ones have a chance to wash and prepare the body for whatever the next steps are for body preparation, the funeral, burial/cremation, and so on. Vigil plans are ideally created by the dying person and included in any existing End of Life plans. 

In addition to honoring end-of-life wishes, a vigil plan serves as a blueprint of sorts, helping others learn how to be present in a way that supports your well-being as well as the well-being of anyone else who’s present.

Questions To Think About As You Plan Your Death Vigil Plan

One of the most special benefits of choosing hospice care in your home or a hospice house is that you can create a vigil plan that honors your sense of the sacred, the peaceful, the loving, and the meaningful. For some, vigils are very quiet, tender, and reflective, while others may have a vigil that’s quite boisterous and full of visits from family members and friends. Most of us choose to die how we lived – and our vigil plans often reflect that. One more thing worth pointing out is that we’ve repeatedly seen how a client’s vigil plan helped to completely reframe how witnesses and participants view death – making dying feel more natural, sacred, and even beautiful. 

When Does The Vigil Begin?

The vigil may begin weeks or days before someone dies, depending on the trajectory of their death. Typically, you, your hospice provider, or your primary caregiver(s) recognize signs that you’re moving from a general condition-related winding down to what we call transition or the active dying process. For most, that active dying phase doesn’t last more than a handful of days. The vigil plans commence when those signs are recognized and may begin with calling your closest family and friends to let them know “it’s time.” Here are some of the most common things addressed in a person’s vigil plan, but ultimately they should reflect the wishes of the person who is dying.

When creating a death vigil plan don’t forget the ambiance and atmosphere

Things slow down once someone dies, so most people desire to be surrounded by beauty, comfort, and peace. Or to have access to these things as much as possible. Deathbed ambiance becomes a priority. If certain things aren’t already in place, your vigil plan may consider things like:
  • The pictures/art/visuals you want around you.
  • What about fresh flowers every day or a few living plants?
  • Where you want your bed located (we’ve had clients who wanted to be outside as they died rather than indoors or want their beds moved closer to an open window if weather permits it).
  • Is there a music playlist you’d like to have played in the background? Or 
  • Are there specific smells we can surround you with via essential oils?
  • Would you prefer soft lighting, candles (battery votives/pillars work well if open flames aren’t safe or when oxygen tanks are present), a colored light bulb, or a colorful silk over a lampshade at night?
  • Would you like medical equipment to be kept away from the space unless necessary to keep it more ambient?
The idea is that your bedside environment should be as nourishing as possible.

What would you like people to know while visiting you?

Your vigil plans also help those who come to visit you feel more comfortable. Many people have the feeling, “I don’t know what to do or say…” So, you can let them know things like:
  • Please feel free to take my hand.
  • Please don’t touch my face, feet, etc.
  • If my dog/cat is waiting by the door, invite them up onto my bed.
  • I’d love to be read to from any of the books on my bedstand.
  • I’m interested in hearing your favorite memory of me or our time together. 
  • Don’t be afraid to laugh or find humor along with the tears and sadness.
  • You’re welcome to say nothing at all. Just match your breath to mine and be with me.
  • Do not shut children out of my room; I’d love for them to visit me, read me a story, share their lovey, or play quietly on the floor by my bed or hang their art where I can see it; OR, please let children come and give me a kiss on the hand but don’t let them play on my bed or in the room if I’m sleeping.
These are just a smattering of things to keep in mind, but they help others create the environment you want.

Who do you want to be present if possible (who do you not want present)?

These are both important. If you have family members or loved ones who make you feel more anxious than peaceful, your vigil may not be the place for them. In that case, we recommend having them come to say goodbye (if that’s your wish) before you’re actively dying. If you’d like, perhaps they can write something that someone else can read to you during the vigil so they can be present with you that way. You can also make other requests that make sense, like:
  • Please don’t allow Persons X and Y to visit together. I’d rather have them visit separately. 
  • Topics X, Y, and Z are off-limits at my bedside and in the home/space while I’m dying.
  • I’d like Person X to be present if Person Y is here (with the idea that Person X knows how to hold the comfort/behavior boundaries with Person Y). 
Don’t forget that your hospice team, especially the chaplain or social worker, can be a big help with creating this part of your vigil plan.

After Death Vigils Are Also An Option

Another form of vigil is one that takes place after you die. This may be the place for people who you didn’t want there when you were actively dying. Some cultures and religious traditions have specific timeframes for death vigils, which may be anywhere from 24 hours to 72 hours with the body, and some may last longer after the body has been removed to prepare it for burial or cremation. Sometimes, vigils begin very privately by having your body washed/bathed and anointed by a select group of loved ones as they sing, say prayers, sit for a while, or recite a blessing over you. They can also dress you in what you’ve selected and prepare you for whatever arrangements you’ve chosen with regard to burial or cremation. Depending on the arrangements you’ve made (a few hours or a few days), the after-death vigil can be very helpful for close loved ones who couldn’t get there in time for the deathbed vigil but who appreciate the last opportunity to see you, touch you, and speak with you or be present with you before your body is removed.  Again, some of the same tenets from a deathbed can be applied here in terms of ambiance and who’s welcome to come. 

Let Hospice of the Golden Isles Help Create Personalized Plans For Your Vigil

Are you interested in learning more about what a vigil is or hearing about vigils we’ve participated in creating for other clients? Contact us at the Hospice of the Golden Isles. We’ve witnessed first-hand how meaningful it can be for our clients and their families to take this extra moment and make it as conscious and sacred as possible, and we’re happy to teach you more about that if it interests you.

End-Of-Life Caregiving With Your Siblings

end of life caregiving with your siblings

Being a caregiver is challenging in the best of times, but it’s incredibly emotional – and stressful – when you’re caring for a parent toward the end of their life. While the support of siblings is always helpful, making decisions that honor your parent’s wishes may be easier said than done.

5 Steps To Creating Cooperative Sibling Caregiving For Parents

Emotions are fraught, old wounds or hurt feelings may rise to the surface, exhaustion makes everyone more reactive, and differences of opinion can make it hard to provide consistent care. After more than 40 years of providing hospice support in client homes, communities, and our own hospice house, we understand how challenging it can be to get multiple family members on the same page. However, our experience and incredible team also know that it’s possible.  Feel free to reach out to local hospice agencies to learn more about how to create collaborative and cooperative care plans. We offer free, no-obligation consultations, and we’re always here to help you when you need us. Here are some expert recommendations for creating a collaborative and cooperative care team that honors every sibling’s feelings while keeping your parent or loved one’s wishes at the forefront.

Make Sure Your Parent Has Completed End-Of-Life Plans 

It’s never too early for anyone to create a thoughtful, intentional Advance Medical Directive (we recommend visiting Three Wishes to get started if your parent doesn’t have one in place). You never know what twists and turns life can take. The pandemic taught us that even young people should have a sense of what they want—and don’t want—when it comes to lifesaving measures. However, we recommend taking it further than that and creating plans that accommodate everything from your medical directives to your end-of-life plans. The more your parent can get down on paper (and signed by an objective witness or notary), the easier it is for siblings to return over and over again to “this is what mom/dad wanted…” whenever there are disagreements. Visit our page to learn some of the questions to review when creating end-of-life plans to get you started. Once they’re complete, share them with the family ahead of time so everyone is prepared. Those written plans, created and signed by your parent(s), should always have the ultimate say in how – and what – decisions are made, alleviating disputes within the sibling dynamic.

Work with a palliative care or hospice care team ASAP

There are some differences between palliative care and hospice care. While both prioritize comfort care, which includes mental/emotional health, palliative care is available to those continuing to receive curative treatments. Some insurance providers cover a portion of palliative care, and others do not. Hospice, on the other hand, is 100% free for any qualifying individual. However, while the client can continue taking medications to manage symptoms, they cannot participate in curative treatments. Also, depending on the palliative or hospice care provider, hospice teams may provide more on-site patient and family support through on-site visits from nurses, medical aides, social workers, hospice chaplains/spiritual counselors, grief support, volunteers, etc. In addition to providing invaluable support to palliative care/hospice care clients, we’re here to support the family. Our objective input and boundary holding for our client’s wishes can help diffuse contention within family systems. 

Understand how debilitating arguments can be to quality-of-life

If your parent is facing the end of their life, arguments, and disagreements between siblings can seem catastrophic to them. It disrupts the peace and wastes precious time. The more everyone can put personal feelings/emotions aside to serve the good of the whole – the better. First, share our post about how your emotions can hinder a loved one’s healing or dying process. Then, some simple agreements should be created on handling disagreements about caregiving or what your parent wants. Here are some questions and thoughts to guide that process:
  • Is there a current end-of-life (EOL) plan in place? Update it or add to it if your parent is still able to communicate their wishes to minimize areas of confusion (The hospice care team can help with this). 
  • Who is/are the primary caregivers?
  • Who can make the final medical/EOL decisions (as per the advanced medical directive?)
  • What are the roles other siblings will take on?
  • How will siblings communicate as a parent’s conditions change?
  • What is the plan for settling disagreements?
The more that is agreed upon ahead of time, the easier it is to fall back to those agreements when things get increasingly harder or more challenging along the way.

Implement respite care from the get-go

No one person can go it alone in the caregiver role. Even the most competent caregivers need time off – and not just to run errands or keep up with their own medical/healthcare appointments. Primary healthcare givers need time to refill their energy reserves and to:
  • Take a walk, attend an exercise class, etc.
  • Catch up on sleep.
  • Go to coffee or a meal with friends.
  • Attend church/spiritual services.
  • Spend time with their immediate family (somewhere outside the caregiving realm). 
  • Take a vacation or two per year.
  • Have multiple days off in a row.
Caregiver fatigue leads to caregiver burnout, and that’s a recipe for disaster for everyone involved. Respite care is available from family, friends, local licensed caregiving agencies, and hospice volunteers. The more you support the primary caregivers, the better rested they’ll be, minimizing feelings of resentment, reactivity, frustration, etc.

Take advantage of grief support offerings in the community

There are a range of free grief support options in most communities, as well as online. While most people associate grief with the death of a loved one, there is also an under-addressed type of grief called “anticipatory grief.”  Anticipatory grief acknowledges that we are already grieving the upcoming loss of a loved one – and is very prevalent in situations where parents are dying from diseases involving dementia or significant loss of physical ability. It feels like the parent you’ve had is already gone, and that’s a significant blow when combined with physically witnessing their progressive decline. By finding ways to process the grief you have about your parent’s disease, end of life, or the hurts and traumas of the past, you gain tools to better handle disagreements with siblings as they arise.

Hospice of the Golden Isles Supports Sibling Care Teams Anyway We Can

Whether your parents are fresh into a terminal/chronic diagnosis or you’ve been caring for a parent for a while now, Hospice of the Golden Isles is here to provide support. We are here to work with families like yours by bringing our supportive and gentle expertise to the mix.  Our hospice team is here for the entire family, working collaboratively to bring as much quality of life – and peace of mind – as we can. Contact us to schedule a consultation or to learn more about how hospice services can ease end-of-life caregiving with your siblings.

How A Hospice Chaplain Supports Clients Who Aren’t Religious

how a hospice chaplain supports clients who arent religious

Hospice teams consist of a network of providers who provide a range of care—from clinical and compassionate to task-oriented to 100% dedicated to our clients’ comfort and emotional well-being. Our hospice chaplains are a vital link in this chain of support.

While the title “chaplain” has religious connotations, hospice chaplains are not your average “clergy.” They understand and welcome the fact that our hospice clients and families come from a broad range of religious and spiritual traditions, including no traditions at all or 100% atheist.  That’s just fine with us, and all are absolutely welcome!

The Amazing Role Of The Hospice Chaplain (No Religious Beliefs Required)

When you sign up for hospice service, you and your family are instantly supported by an incredible and versatile team. One of the team’s key players is the chaplain. The term chaplain is rooted in Latin (cappellus) and means “clergyman.” The 21st-century meaning of “chaplain” is entirely non-denominational, and many chaplains have never served as clergy for any specific institution. They are not concerned with whether or not you believe in God. They’re most interested in the well-being of your heart, mind, and spirit.

What Are The Qualifications To Become A Hospice Chaplain

Most hospice chaplains have been lifetime philosophers, theologians, and questioners. Even if their primary personal religion is rooted in Judeo-Christian, Muslim, Hindu, or other origins, they have an infinite interest in curiosity in every spiritual tradition. If you ask about their credentials, most hospice chaplains have a:
  • Bachelor’s degree.
  • Graduate-level degree in divinity studies, comparative religion, theology, or a related subject.
  • Deep understanding of the community’s resources, including religious/spiritual churches, temples, centers, other clergy, etc.
  • Respected position within their community’s spiritual and religious network.
Hospice chaplains may also have an additional certification in spiritual direction or spiritual counseling, broadening their experience serving people from diverse backgrounds. Depending on their personal calling, they may or may not have served as an official clergy member. Most importantly, chaplains are called to serve anyone in their time of need – whether or not the client views themselves as a religious or spiritual devotee. They disdain “exclusionary” structures, and the doors of their hearts are always open.

Core Ways A Hospice Chaplain Supports Those Who Aren’t Religious

Are chaplains there to read scripture or discuss religious beliefs, questions, and concerns? Yes! They are also there to listen to fears, concerns, and questions about what happens to the body or spirit when we die. But that’s not all they do.  Perhaps more than anything, a hospice chaplain supports and serves clients by helping them to experience as much peace of heart, mind, and soul as possible in the last chapter of their lives – in whatever forms that may take.

Connect you with the right spiritual support

Just because a client is non-religious doesn’t mean they don’t need spiritual support. In most cases, our chaplain’s comprehensive knowledge of world religions, cultures, texts, etc., is enough to give our clients what they need. However, if it’s not a good match or a client is looking for a specific type of spiritual support, our chaplains work to connect them with the right person in our community or to find them online resources that can help.

Provide healing for religious trauma 

Sometimes, clients who are not religious – or completely opposed to religion – turned away from the faith they were raised with due to a trauma of some kind, such as harsh doctrines, honest questions that were frowned upon rather than explored, or liturgy that seemed contrary to their experience of God. Or, they may have seen how twisted versions of religion harmed someone they loved. Chaplains provide a soft landing for clients to revisit that and release pent-up pain, anger, and resentment. They are adept at providing an open, honest, and non-reactive presence for those who need to express their experience and find some resolution or freedom.

Pondering the big questions

Even the most devoted of atheists may feel compelled to face the broader questions – and mysteries – of life and death. Chaplains are interested in the same things. Many of our non-religious clients appreciate our chaplains’ well-read backgrounds and their interest in discussing philosophy, the cosmos, and the human experience. This makes for satisfying conversations and interesting readings. Ironically, regular visits by hospice chaplains can be the “favorites” for non-religious clients.

Supporting the esoteric experience

One definition of esoteric is: intended for or likely to be understood by only a small number of people with specialized knowledge or interest. This goes along with pondering the big questions.  For those with a strong religious or spiritual conviction/practice, answers to esoteric questions are often answered directly – and specifically – by their doctrines or religious texts. That’s not the case for those who aren’t religious, and chaplains are excellent facilitators of esoteric conversations and queries.

Creating supportive, personal rituals around life and death

Chaplains are there to provide comfort and support to those who are dying and their families. Without a religious practice to fall back on, many clients are interested in finding their own rituals or ceremonies that help them honor their life, death, or moments of pain and strife.  Our chaplains can draw on a wide repertoire of rituals and ceremonial traditions from a range of cultures and traditions. Or, after learning more about who you are and what is important to you, they can help you curate readings, poems, music, or practices rooted in your personal beliefs, feelings, and traditions.

Unconditional emotional support

Much of the emotional processing involved in facing the end of life is emotional. Inevitably, hospice clients spend a fair bit of time performing some version of a life review. Sometimes, this is a very inward process; other times, it’s done in conversations or while remembering family stories and events with loved ones. This process often leads to big questions, and your hospice chaplain can help you work through those. 

Learn How A Hospice Chaplain Supports Your Loved One’s End-of-Life Experience

Are you interested in learning more about the chaplain’s role on your hospice team? Schedule a consultation with Hospice of the Golden Isles. We promise you that being missionaries or converting people to a particular religion has absolutely no part in what we do.

Hospice Provides Ambiance And Comfort Care At The Bedside

hospice provides ambiance and comfort care at the bedside

Keeping clients comfortable, cared for, and in a soothing environment is a top priority for hospice providers. We want clients to die surrounded by the things that bring them the greatest ease and peace of mind. One way to do this is by upholding the ambiance around the deathbed in the manner our clients prefer.

We do this in various ways, including creating detailed end-of-life plans that include a client’s wishes and preferences (along with what they don’t want) in the months, weeks, and days leading up to their death.

End-Of-Life Care: Providing Soothing Ambiance And Comforting Care

One of the many benefits of exploring hospice care in the earlier stages of a terminal diagnosis – or as life begins to wane for those in their late 80s or 90s – is the ability to create clear end-of-life plans. This includes the right to say what you do and don’t want in the time you have left. In the early end-of-life stages, when a client is still relatively active, this may include trips or outings to visit special people or places or spending as much time outdoors, or attending favorite events or social gatherings. Later on, when loved ones become housebound or bedbound, we work to create an ambiance that honors their ideas of comfort.

Use Your Five Senses When Discussing End-of-Life Experiences

One of the we do this is by thinking about the five senses, which usually remain with us right until the very end. Even if someone has their eyes closed or they are hard of hearing, they still have a sense of the world around them via shifts in light, vibration, touch, taste, and the energy of those who come to spend time with them. If you are one of our hospice clients, we’ll discuss these concepts when discussing your end-of-life plans, which may also include a vigil plan (who/what do you want to surround you when you’re actively dying).

What do you want to see?

The world shrinks considerably once a person is home and then bedbound. Therefore, we do our best to create a visual experience that brings them joy, peace, or comfort. If your loved one lives alone and family is far away, tending to pleasant and soothing visual esthetics at the bedside is a great job for a hospice volunteer. This typically includes things like:
  • Putting up pictures of their loved ones.
  • Hanging beautiful wall hangings or fabric if walls are relatively blank or providing a neutral background if their new space isn’t personalized (like in a common living area, nursing homes, or hospital environments).
  • Posting pictures of nature scenes if they lack a beautiful window view.
  • Hanging posters of their favorite natural environment or photos they/their partner took on favorite vacations.
  • Having live plants or fresh flowers in easy-to-see but out-of-the-way locations (high-quality synthetic flowers/plants also enhance a space if there’s nobody to tend to live or cut options)
  • Candles (we usually use battery-operated candles in facility environments or homes without continuous caregivers to ensure the flame is safely extinguished.)
A little visual appeal goes a long way toward comforting someone who can’t leave their bedroom space anymore. If a person is bed-bound for over a few weeks, consider changing things around and bringing fresh options into the mix so it doesn’t become stale or boring. When patients are actively transitioning into death, they may not want bright lights, so we’ll pay attention to body cues and use shades, dimmers, etc., to prevent light that is too bright or harsh.

Create a soothing ambiance and comfort care through music

This can vary so much from person to person and where they are in their end-of-life journey. Most of us prefer the same playlists we always have in the early days. However, if a person struggles with pain or discomfort or breathing becomes challenging, they may have a “soothing” or “relaxing” playlist option. Some clients want to have the windows or bedroom doors open during the day to hear the goings on in the world outside, while others prefer things as quiet as possible. Having conversations about how the “soundtrack” preferences may change as they get closer to death means loved ones know what to play – and when to play it – or what noises to keep at bay. Let the hospice providers know if they love live music or would appreciate visits from local musicians. We commonly integrate music therapy into our services, including instrumental or vocal music from volunteer musicians.

Taste needs vary from person to person

Some of our clients eat right up until the very end, but that’s more rare. Most of us experience a gradual wind down, and the appetite is reduced to the point that food no longer tastes good. Or, we may not have an appetite, so we only eat to please the people we love. Pay close attention and never force food on someone who’s walking the end-of-life path.  They may still enjoy small sips of juice or beverages, smoothies, milk shakes, or flavorful broths if regular food doesn’t appeal. They might enjoy sucking popsicles or lollipops. Let them take the lead and honor their wishes.

Do you have favorite smells or scents that you like?

The scent of smell may become even more important during death than it was in the midst of life because other smells, like sight and hearing, can fade. Be mindful of the smells in a room where someone is dying. Things like heavy fragrances and perfumes may be overwhelming, and your loved one doesn’t have a way to control those if they’re no longer responding to stimuli, so be sensitive to that. Have conversations early on about their favorite scents. If they like freshly baked cookies, make some from time to time. While you’re loved one may no longer be interested in eating, they may still enjoy smelling some of their favorite foods. If this is the case, plan some family meals and cook together to honor their life and enjoy a meal with family and friends – even if the person who’s dying doesn’t want to eat. If they love the smell of fragrant blooms, open a window to the outdoors in spring or purchase some fresh bouquets. Diffusers and essential oils are another wonderful tool at a bedside, and scents can be customized or changed according to their preferences. Most health food stores or wellness centers have a nice supply of essential oils and blends you can use. Put a drop of essential oil on a cotton ball from sample bottles (using a fresh cotton ball per scent) and bring them home for your loved one to pick some favorites.

Touch and tactile sensations

Just as the remaining senses may grow keener before a person retreats into themselves, the skin may become more sensitive. We ensure our clients have soft bedclothes and bedding, as well as socks, to stay warm and avoid itchy or aggravating sensations. Keep in mind that everything slows down a bit as life wanes, so slower movements and soothing touch become more important as fast, hard, or sporadic interactions can be overwhelming or agitating.  They may also appreciate things like massage or healing touch, an offering from a hospice volunteer services provider. People who live alone and can’t get out of the house or bedroom may appreciate visits from hospice volunteers who can hold their hands, rub their feet, or hug them. We also have access to hospice pet volunteers, which can provide great joy and comfort to clients. 

Who Do They Want To Visit Or Connect With?

We’ve mentioned that people tend to retreat toward the end of their life, but it’s not always the case. And people can surprise you. Sometimes, someone who seemed somewhat outgoing or social wants to spend time alone or with just a few loved ones at the end – or vice versa.  Talk about who your loved one wants to visit or connect with and try to make those arrangements. Digital technology has done wonders for allowing us to connect with people all over the planet without anyone needing to travel. That said, visitors’ energy and emotions can negatively impact the bedside ambiance if they – and caregivers – aren’t careful. Understanding how our personal emotional spectrum affects the dying is important to take responsibility and not hinder their experience. 

Hospice of the Golden Isles Creates Supporting Ambiance And Comfort Care For Clients

Are you or a loved one facing an end-of-life diagnosis, or do you sense life is winding down? Schedule a consultation with Hospice of the Golden Isles. We’re dedicated to keeping clients safe, comfortable, and at peace at the end of their lives, always striving to provide a supportive, beautiful, and peaceful bedside ambiance.

Are Your Emotions Hindering A Loved One’s Dying Process?

are your emotions hindering a loved ones dying process

Being fully present and honoring the dying person is one of the most invaluable gifts we can give to those we love. However, all too often, our own emotions get in the way, preventing loved ones from having the unconditional support they need to engage in their own dying and death process fully.

Your Emotions Can Negatively Impact A Loved One’s Dying Process

Your hospice team is there to educate, instruct, and guide you – and to bring a wellspring of support – to your loved one’s bedside. This is why enlisting hospice sooner rather than later is always better. When a spouse or well-meaning family members aren’t able to step back and give their dying loved one the space they need (or when they overcrowd the bedside with their own needs), it negatively impacts the person’s dying process.

Ways Your Denial, Anger, Sadness, Or Grief Hurts More Than Helps

The months and weeks leading up to a person’s death are overflowing with intense emotions and this is absolutely normal. Some of the most common emotions sparked by dying and grief are denial, anger, bargaining, sadness, and grief.  When you unconsciously express powerful emotions when a loved one is dying without respect for their experience or needs, you may contribute to things that hinder them from being able to:
  • Accept that they’re dying.
  • Talk about their death or process their emotions around dying.
  • Express their wishes or create their end-of-life plans.
  • Have important conversations around things they need to forgive or take accountability for.
  • Be present at their own death (because they’re so busy taking care of your emotional needs).
  • Die in comfort because they’re constantly interrupted, forced to eat (more on that later), or made to feel as if they’re failing rather than surrendering to a normal part of the life cycle.
Let’s examine each of these so you can put yourself in their shoes and understand how important it is to manage your own emotions (again – lean on hospice support!) so they are a balanced and healthy part of the process – rather than a hindrance.

They don’t have a chance to accept they’re dying

Imagine knowing something about yourself, or at least having a strong suspicion, but then having it denied by everyone around you. It’s a very lonely place, and it’s a place that many dying people find themselves in when their partners, children, loved ones – and even clinicians – won’t be honest about the fact they’re dying. In his book Die Wise: A Manifesto for Sanity & Soul, famous culture activist, worker, and author Stephen Jenkinson writes, “We know without wanting to know it that knowing we could be dying somehow begins our dying.”  The opposite is also true; not being allowed to know it or being blocked from the multifaceted acknowledgment that we’re now, officially, commencing the death journey keeps us from the meaningful unwinding process that inevitably begins when we’re able to fully acknowledge and surrender to our death. Expressing emotions honestly, but also supporting loved ones as they accept that this is their physical end, is one of the most profound things we can do. It also begins our own “learning” of what it means to die.

They can’t talk about their death or process the resulting emotions

Similarly, someone who isn’t allowed to spend time accepting that this diagnosis, ruthless pursuit of ineffective treatments, or combination of symptoms signifies the official waning of their physical life isn’t able to talk about their death. If you can’t talk about your death, you are burdened with walking a very inward, solo journey OR not having the chance to process what it is you need to process, discuss, or work out for more peace of mind and spirit when you die.

They can’t create meaningful end-of-life plans

Some of the most common things loved ones say that shut down a person’s death process are:
  • Don’t give up yet- there’s still hope.
  • Let’s not talk about that now; we can talk about that later.
  • You’re not dying yet, so just relax and don’t worry about that.
  • You’re not dying. You still have plenty of good years left.
However, if someone wants to talk about these things, they deserve to have unconditionally supportive spaces and outlets for that. Without the ability to share their experience, wishes, wants, and needs around dying, they cannot create meaningful end-of-life plans OR to change plans they put in place years ago but want to change.

They can’t seek or offer forgiveness or make amends

Dying is a clarifying process. There may be physical suffering due to whatever disease or condition brought you there, but it brings things into clear focus. To die with a clear heart, spirit, and mind, we need time and space to perform a life review. This happens when we’re dying and helps to create a more peaceful, active dying experience. During this process, people who are dying like to have important conversations with loved ones, and their loved ones deserve the chance to have meaningful conversations with them. Depending on the situation, the dying person may want support from a therapist or spiritual counselor, especially if amends need to be made in either direction with someone who is dead or no longer in the picture. We see over and over again how clients who have the space and time to do this deep work in the years or months/weeks leading up to their death die more peacefully and with greater physical ease.

Spend more time taking care of others’ needs than their own

As hospice professionals, we learn to keep our emotions in check. Do we feel sad, tender, and moved in our patients’ homes or places of residence? Absolutely. Do we get choked up or teary-eyed depending on the situation? Yes. But we don’t weep so uncontrollably that our clients and their families must comfort us. We are there to support y’all! Healthy, balanced emotional expression is always welcome from a dying person’s loved ones. However, if those emotions overshadow the dying person’s experience or hinder their need to express their feelings, it’s a problem. Pay attention to your feelings and how they impact the dying person. If it seems like your feelings are overshadowing theirs, or they’re no longer able to share their own experience because they’re afraid of upsetting you, it’s time to seek help from the hospice team to get the support you need.

They die with more discomfort and distress

Finally and most tragically, if your family’s emotions and needs eclipse your loved one’s dying process, they die with more discomfort and distress. That’s the exact opposite of what you want for them, right? Here are examples of how that happens beyond what we’ve shared above.
  • They don’t have hospice care in enough time to keep their pain or discomfort in check (are you the one resisting hospice support, or are they?)
  • They don’t have access to palliative care in their last six months (or more) of life, which adds considerable quality of life for most clients.
  • People insist on feeding them or coercing them to eat when they no longer have an appetite (this causes considerable physical distress if their body can no longer digest food).
  • They have guilt about the toll their increasing care needs take on their partner/family because they don’t have access to respite care and other services provided by the hospice team and volunteers.

HGI Supports Families Create Meainginful & More Comfortable Deaths

Are you struggling to accept that your loved one is dying? Do you recognize that your emotions are blocking their access to high-quality care but don’t know what to do? We understand because Hospice of the Golden Isles supports families like yours every single day.  Contact us to schedule a consultation and learn more about our services. Rest in the awareness that we have the resources, information, and tools you need to walk this path with your loved one in a way that honors their life while allowing them to do the work they need to do to die with peace of mind. 

Understanding The Emotional Stages Of Dying

understanding the emotional stages of dying

Our contemporary awareness and honoring of the emotional stages of dying and grief are rooted in the work of Elisabeth Kübler-Ross, a Swiss-American psychiatrist. Made famous by her pioneering work in near-death studies, Kübler-Ross conceptualized five common emotional stages experienced by her clients facing terminal illness: denial, anger, bargaining, depression, and acceptance (DABDA).

Support Dying Loved Ones: Understand More About Their Emotional Journey

Her influential work has been highly misinterpreted, leading to undeserved criticism. Those of us who work in hospice understand how instrumental this awareness is when supporting those who are dying, their loved ones, and their caregivers.  Understanding what people go through when facing a terminal illness, imminent death, or when grieving the loss of someone we love provides insight into their shifts in moods or potential reactive emotions and behaviors.  Building on the work of Kübler-Ross, other mental health professionals (like Alan Wolfelt, John Bowlby, Colin Murray Parkes, David Kessler, and others have built on her work, identifying additional ways of expressing the emotional journey inherent in the dying process.

The Famous Five Emotional Stages Of Dying And Grief

One of the biggest misconceptions people have about Kübler-Ross’s “Five Stages” is that they’re compartmentalized or that an individual goes through one of the stages, finishes with it, and then moves on to the next. This is not so.  Instead, these are more like five emotional facets of dying and grief. Those experiencing them tend to move through them fluidly, rather than in a particular order, and can move back and forth – there may never be a “finishing” of them at all.  Your hospice team is here to help you all remember and understand these stages so we can work together, providing whatever support the client needs.

Denial

While most of us logically understand we’re going to die, another part of us thinks, “Everyone will die but me.” As a result, denying that we’re dying happens to most people who know they’re dying – whether they’re involved in a traumatic accident, facing a fresh terminal diagnosis, or experiencing the final stages of a chronic health condition. Denial may look like:
  • Questioning a doctor’s expertise.
  • Blaming faulty testing or false diagnostic results.
  • Refusing to talk about a diagnosis, prognosis, or anything related to dying.
They may also experience:
  • Depression
  • Anger
  • Shock
  • Confusion
  • Loneliness

Supporting the denial stage

First, it’s not always easy to know whether a person is in denial or if they don’t completely understand the diagnosis/prognosis. Once you’re confident they’ve received the information clearly and understand their new reality, the best thing you can do is give the person space to process their emotions.

Anger

People frequently feel angry about dying, especially if they are younger, have unfinished business, or their diagnosis comes as a complete shock. When people are angry about dying, they’re likely to go into “why me?” mode or start to blame others for their situation. Clients may also exhibit signs of:
  • Frustration
  • Rage
  • Anxiety 
  • Fear (anger is almost always rooted in fear)

Supporting the anger stage

This can be very hard on caregivers as humans tend to be the most unkind, reactive, and downright mean to the ones they’re closest to. Let your hospice social worker know if anger is showing up in overwhelming or dangerous ways. If a client is stuck in anger or anger is manifesting via rage, hospice social workers and therapists are here to help.

Bargaining

The Bargaining stage frequently overlaps with anger. The “why me?” question leads to trying to make things different. If only X would happen, then Y would/won’t. Or “I promise I’ll volunteer more in my community if this treatment can just let me live long enough to do so.”  Someone in deep grief may bargain in ways like, “If I can just go back in time to redo that conversation/action…then this would be so much easier to bear.” Or, “God, if you spare my husband, I promise I’ll never snap at him again.”  During the bargaining stage, loved ones may also feel:
  • Anger/rage.
  • Frustration.
  • Regret.
  • Sadness/depression.

Supporting the bargaining stage

You’ll notice a theme here: the best way to support any strong emotional stage is to be a silent, attentive listener. Fixing or providing advice, placating – they don’t work. Your job is to be there as a quiet supporter and companion. It’s best to leave therapeutic-type work to the pros. That said, you may identify an underlying emotion under the bargain. For example, if a dying loved one bargains, “If God would just let me live, I would be so much more patient with the ones I love.”  You now know they feel regret and sadness about their impatience. You can witness that and see if they have anything more to offer. “I hear that you’re sad and regretful that you were impatient with loved ones. That must feel hard right now.” 

 Depression (profound sadness)

It’s a rare person that doesn’t have some amount of sadness around their death. Even people who are ready to die due to their pain, treatment fatigue, or a feeling their life is complete still feel sad about leaving loved ones behind or never seeing another beautiful sunset in this physical form.  However, others may sink into a deep depression. This phase is grief at its most impactful. It can take people to very lonely, dark places that are almost a rite of passage, as it is only by moving through these strong emotions that they open up to experiencing joy, gratitude, and surrender. Depression may look like:
  • Not getting out of bed. 
  • Retreating from people and activities they love.
  • Sleeping all the time.
  • Not eating (or overeating).
  • Self-pity
IMPORTANT NOTE: Most of these signs of depression in the dying also occur when our physical death is imminent. Read How Do We Know When a Loved One is Dying for more detailed information about the physical processes that wind down and what that looks like as a caregiver.

Supporting the depression stage

Someone who experienced depression before their diagnosis or prognosis is more prone to depression afterward. This can be one of the longest or most frequent of the emotional stages of dying. People need time to process. However, if you feel the depression compromises their quality of life for an extended period, speak to your hospice team or a mental health professional.

Acceptance

The acceptance phase is a gift of sorts, but that doesn’t mean painful visits from anger, sadness, or denial don’t also accompany it. Someone in the acceptance phase begins to look ahead to their death and is best able to plan how they want to spend their remaining days.  Moments of acceptance open possibilities for the one who is dying and their loved ones. This is the window for creating thoughtful end-of-life (EOL) plans that align with what the person truly wants. Making EOL plans from anger, grief, or denial may mean hearing lots of, “I don’t care. Whatever you want.” or “Don’t do anything. Just bury me/cremate me and move on,” or “It doesn’t matter anyway.”

Supporting the acceptance stage

Perhaps the hardest part about supporting a dying person’s acceptance phase is that you may not be there yourself. If you’re experiencing anger, depression, or denial, they have to spend this phase feeling more alone, and without the support, they need to make the plans they want to make. Being able to separate yourself from your feelings and honor their acceptance and using other family, friends, or community professionals to process your feelings honors your loved one’s experience.

HGI Supports Clients & Families Through The Emotional Stages Of Dying 

The emotional stages of dying are intense, but you don’t have to experience them alone. Reach out to Hospice of the Golden Isles and learn more about how our palliative care and hospice teams can accompany you through them, providing unlimited information, education, and emotional support.