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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.


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.


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.


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.


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.

The Role Of Palliative Care In Hospice

The word palliative means “relieving symptoms without treating the condition.” This is precisely the role of palliative care in hospice. 

Palliative Care In Hospice Differs From Palliative Care

This can become confusing because there is an entire specialty, called palliative care, that helps to provide comfort care while a patient simultaneously pursues curative treatment for their disease.  While Palliative Care and Hospice Care share a portion of their concentric circles, they are not quite the same thing. Palliative care as a specialty provides comfort care while patients continue pursuing curative treatments. It may be covered by insurance, but it may not be – but it does provide a whole-person approach to comfort and healing that is not always available from treatment specialists.  Hospice is free to all qualifying patients, regardless of income, as it is paid for through Medicare. However, it is designed to bring whole-person comfort once qualifying patients decide to forgo or cease treatments. If you are struggling to maintain quality of life while pursuing treatments, we recommend reading our post, When to Stop Disease Treatment, and discussing it with your healthcare providers, spouse/partner, and loved ones.

Hospice Is Dedicated To Palliative Care At The End Of Life

If you’ve decided to stop pursuing curative treatments (medications and therapies to manage existing health conditions and symptoms are absolutely fine), hospice can provide invaluable peace of mind for patients and families. Rather than go it alone, with erratic support and information gaps between medical appointments, hospice care brings all of that to you – at your home, hospital, post-acute facility, or wherever else you live.  From hospice physicians and nurses to medical aides, social workers, chaplains, volunteers, and more – you and your loved ones/caregivers have access to all of the support and information you need. And, because hospice runs 24/7 nurse hotlines, you can get answers to immediate questions about how to best care for or handle a situation at any time of the day or night.

Hospice Comfort Care Looks Like…

The role of palliative care in hospice is multi-faceted, and our services are as varied as the people we serve. Ultimately, our goal is to help you get the very most out of each day you have left – and live those days as peacefully as possible.  We can’t emphasize enough: the sooner you enlist the help of a hospice agency, the better as studies show that people who take advantage of hospice live longer – and with greater satisfaction and ease than those who wait too long or never use hospice at all. Here are some examples of what comfort looks like for our clients.

Healthcare and comfort wherever you live

For many clients, the rigorous schedule associated with a terminal or chronic illness (physician appointments, seeing specialists, lab work, filling/picking up prescriptions…) becomes almost as exhausting and depleting as the condition they have.  Once you’ve enrolled in a hospice agency’s service, we bring everything to you. From visits to physicians, nurses, aides, and the rest of the hospice team (chaplains, social workers, therapists, volunteers, etc.), the world comes to you. Where you’re at. So you can make the most of each day and conserve your time and energy.

Receiving  “durable medical equipment” where you need it

When you’re in hospice, any of the durable equipment you need is ordered by your hospice nurse and delivered right to your home – typically within a single business day or less. Durable medical equipment is a medical/industrial term used to describe all of the structural, medical, and furniture-like items that increase ease and comfort as physical abilities wane – or your body needs different positions/setups to navigate daily tasks.  Examples include:
  • Beds that raise/lower/change position and alternate pressure to prevent bedsores.
  • Trays and tables that adjust to the heights or positions required for you and caregivers to access what you need.
  • Breathing support (oxygen – home and portable, nebulizer (breathing treatment support), cushions/supports, etc.)
  • Bedside or bathroom commodes.
  • Wheelchair/walker/canes
  • Orthotics 
  • And so on.
Whatever equipment you need to be taken care of can be requested and is always approved if we can make it happen.

Accurate information and education

Some of the biggest discomforts around illness or end-of-life issues include the mystery of what’s what at any given moment. And, despite what it might seem like, Google doesn’t have all the answers – delivered by a compassionate human with hospice expertise. Once you’re in hospice, you have access to weekly visits from the care team (more as needed, depending on your situation) and a 24-hour hospice hotline. This resource is invaluable in those middle-of-the-night moments when you aren’t sure if what you’re experiencing is normal. Or, perhaps a brand new symptom seems to appear in a single day; whatever the case, hospice nurses are there to answer your questions, provide answers and insights – or instructions on what to try or do next. This level of access provides significant peace of mind because you know you are never alone!

Emotional and spiritual comfort

Living with a terminal condition is not for the faint of heart. It takes its toll emotionally and spiritually – as well as physically. However, the clinical medical world doesn’t yet offer much in the way of caring for the emotional and spiritual being. Our hospice social workers, chaplains, and grief support teams can meet with you regularly to listen, provide resources we feel might be helpful, companion you through the shadow times, and facilitate your process – whatever that might be.  We are not here to tell you or teach you anything. Quite the opposite. We respect every client’s questions, concerns, doubts, and crises and share the space with them until they find their way back to a more ease-filled place. Clients who live alone frequently seek emotional or spiritual comfort by utilizing our hospice volunteers. These volunteers visit them to read, converse, share stories, listen to music, take walks outside, and otherwise find a bit of joy together that day. 

Clarity around end-of-life issues and planning

We mentioned that “the mystery of what’s what in any given moment” is often the scariest part. This is certainly true for anyone facing the end of their life – whether in a month, six months, or several years down the road.  The reality is that most of us die a slow death due to a chronic illness/condition or the result of “old age.” Regardless, the mysteries around all of it can be the scariest part. As your hospice team, we provide comfort by shining a light into that space as much as we can, including:
  • Learning more about what happens when the body is dying.
  • Real-time information about present-moment experiences and what they mean (for example, a waning/lack of appetite is normal, and it’s wise to respect that to keep the body free from food at those times as it’s not processing it well. 
  • Knowing how to recognize active dying (when a person has a week or less, in most cases ) 
  • Helping you create personalized end-of-life plans if you haven’t done that already so you can rest assured things will happen according to your wishes.

We’re here to support your family

First of all, we want to be clear that by “family,” we mean anyone you care about who is part of your care team during this time. Sometimes, it’s truly a spouse or partner, children, siblings, etc. Other times, it’s a best friend, a former spouse/partner, or a dear neighbor. Regardless, the hospice team is here to support the people you care about most! Perhaps it is no surprise that many of our clients are far more concerned about their spouses/partners and loved ones than they are about themselves. Knowing that their caregiving team has hospice support is a tremendous comfort and alleviates the depletion associated with worrying.

Hospice Of The Golden Isles Provides Palliative Support Via Hospice Care

Would you like to learn more about how hospice provides whole-person comfort to our clients and families? Schedule a consultation with Hospice of the Golden Isles. It’s never too early to learn more about what’s available to you.  These consultations are free, and you have no obligation to use our service. However, we experience the ease our services bring and hope that you and your family have the opportunity to use them when you feel it’s right for you.

The Ethics Of Hospice Care

the ethics of hospice care

Hospice is an incredible service that supports clients (and their families) when they’re nearing the end of their life. It is funded by Medicare to make it completely free and available to anyone who qualifies. 

It is one of the most ethical, tender, and morale-centered clinical services in existence – and the Hospice Foundation of America, the National Association for Homecare & Hospice, and the millions of people who work for hospice strive to uphold high ethical standards.

The Ethics Of Hospice Care Are Anchored Around Core Themes

The ethical standards guiding hospice care, which are specifically designed to support clients and their loved ones, are anchored around eight core themes.

Patient rights & responsibilities

A copy of our commitment to patient rights and responsibilities is visible in all hospice agencies and available to clients upon request. Ultimately, hospice care is available to anyone who qualifies regardless of age, race, culture, gender, religion/spiritual beliefs, etc. And all of our services are completely free.  Ultimately, patients are in charge of their care. We are here to serve them and honor their wishes while providing complete access to the full spectrum of hospice care support. Your rights and our responsibility to patients include the right to:
  • Appropriate and professional care relating to physician orders.
  • Choose their care providers (through hospice, Medicare/MediCal, or private insurance providers).
  • Receive the information necessary to give informed consent before starting any procedure or treatment.
  • Refuse treatment within the confines of the law and be informed of the consequences of his or her action.
  • Complete privacy and confidentiality (hospice is governed by HIPAA).
  • Receive a timely response to his or her request for service from the agency.
To read a complete list of patient rights and responsibilities, request a copy from prospective hospice providers during your initial consultations.

Relationships to other provider agencies

Hospice is not there to “take over.” Yes, clients must stop “curative treatments” to receive hospice but have complete access to prescriptions or therapies to manage existing conditions and relieve any side effects. So, hospice teams work diligently to collaborate with your current health team, specialists, or provider agencies needed to optimize your care.

Responsibility to governing bodies

Hospice is governed by Medicare and related entities that oversee and enforce our compliance with their standard medical, legal, and ethical guidelines. 

Fiscal responsibilities

While hospice services are free to all clients, they are funded by Medicare and paid for by taxpayers. Therefore, we’re obligated to provide the highest quality services at the most reasonable expenses. It’s essential that those services are offered equitably and billed consistently with the amount and type of service provided.  Other fiscal responsibilities we vow to uphold include:
  • The cost per visit includes only legitimate expenses
  • Never engaging in kickbacks or payoffs.
  • The salaries and benefits of the provider and administrative staff shall be consistent with the size of the agency, responsibility, and geographic location.

Our commitment to personnel

We bring the same level of attention to the ethics we guarantee to patients to our incredible personnel. Our agency knows that a positive, supportive, compassionate, and empowering company culture is essential to attracting and retaining top-notch personnel. Some of these ethical commitments we make to employees, staff, and personnel include:
  • Being an equal opportunity employer and complying with all applicable laws, rules, and regulations.
  • Maintaining written personnel policies available to all employees and uniformly applied across the spectrum of our employees.
  • Providing continuing education and in-service training for all employees to update the knowledge and skills needed to give competent patient care.
  • Hiring adequate staffing to meet the needs of the patients to whom they render care.
  • Maintaining a pay scale consistent with the geographical location, as well as the employees’ education, training, experience, and length of service with our agency.

Additional Ehtics Exemplified By Hospice Care

All of those bullet points and attention to equitable employment, patient care, and treatment are critical. However, we want to also amplify the ethical way in which we provide care to our clients and families.

Hospice Takes A Whole-Person Approach

The Western medical/clinical model is slowly coming around to treating patients as whole people. However, much of what we witness is a very “one part” approach to medical care and treatment of patients before they come to our service.  Once you opt to use palliative or hospice care, we are here to support more than your physical quality of life. Our team also assesses and supports your mental and emotional well-being. This is done via:
  • Continuous monitoring by our heart-full social workers.
  • Visits from spiritual advisors.
  • Grief support for you and your family.
  • Access to volunteer services that provide everything from companionship and respite care to grocery deliveries and plant watering.
  • Visits and services from any branch of your hospice team happen where you’re at, whether that be at home, in our hospice house, hospitals, nursing homes, assisted living communities, etc.
  • Deliveries of all medications, durable medical equipment, and other supplies related to your clinical, hospice, or comfort care.
We are also here to help you make your end-of-life plans so you feel seen, heard, and witnessed as you work through the decisions that ensure you have a say in as much of your experience as possible. Also, you benefit from the emotional support you deserve to buoy you through some of the harder acknowledgments, decisions, and choices.

Experience Ethical Client-Centered Care From Hospice of the Golden Isles

Are you interested in learning more about palliative and hospice care services? Is your quality of life – or the quality of life for your caregivers diminished to a point that something needs to shift? Reach out to us at Hospice of the Golden Isles to schedule an assessment. There is no obligation, but you deserve the information you need to make the very best – and most ethical – choices for yourself and your loved ones.

Hospice Care And Dementia

hospice care and dementia

Hospice care was initially designed for patients with cancer or other terminal illnesses. Unlike dementia, where patients can wind up in a decline that lasts for years, patients with cancer or terminal illnesses follow relatively predictable declines – especially after stopping disease treatment or when treatments no longer work. 

As a result, hospice is built on a “six-month prognosis” model that doesn’t quite fit with most mid-stage or even many late-stage dementia cases. This means we can wind up with complications that are less common for a hospice patient with a 

Understanding Hospice Care And Dementia

The first step to understanding hospice care for patients is understanding hospice eligibility criteria. These criteria are set by Medicare and include an attending physician (if they have one), and the hospice physician certifies them as terminally ill, with a medical prognosis of 6 months or less to live if the illness runs its normal course. This doesn’t mean you automatically lose hospice benefits if you don’t die in six months. In that case, the hospice physician does a reevaluation. You can renew hospice services if they feel six months is still a reasonable prognosis. We’ve had some patients who’ve been on hospice for one or more years because their diagnosis (advanced COPD, heart or lung disease, etc.) can take sudden turns or result in an acute death.  However, we’ve also had patients who had to switch from hospice to palliative care because they improved so much as a result of their hospice care that their prognosis lengthened. Unfortunately, there is a large gap in the healthcare system when it comes to supporting patients with dementia – along with their partners, families, and caregivers. As a result, hospice agencies are doing all they can to provide families with the information and support they need.

Dementia & Hospice Care: When To Call For Help

When spouse and family caregivers are involved, the slow but steady dementia decline can become the proverbial frog in a heating pot of water. In the beginning, the combination of family caregiving – along with professional home care support or respite care – is enough.  However, there comes a point when loved ones with dementia require more care around the clock, and increasing assistance with daily hygiene tasks, which becomes more than any one household can manage. This is the time when hospice can typically step in and help to take over the increasing challenges and tasks.

7 Signs it’s time to connect with hospice

Here are seven of the most common signs it’s time to reach out to local hospice agencies and learn more about what they offer and whether your loved one qualifies. 
  • Your loved one can no longer walk, or transfer from a chair, standing, bed, etc. without support.
  • They can not get dressed or undressed without assistance.
  • They can’t correctly bathe or perform routine hygiene tasks.
  • You’re taking them to more frequent doctor’s visits or making increasing trips to the urgent care, ER, or hospital.
  • Incontinence and soiling themselves are not only the norm, but they can’t take care of the accidents without help.
  • They have trouble drinking, eating, or speaking on their own. In fact, without you there, they may not eat at all.
  • You are burning out. 
Even if it isn’t time for us to step in, we can refer you to some of the area’s most qualified and compassionate home care teams. Then, we can partner with them when hospice criteria are met.

Benefits Of Hospice Care For Loved Ones With Dementia

There are so many benefits of enlisting hospice care to support the later stages of dementia. 

We’re there for family, too

First and foremost, hospice is for the family, too. Your hospice team pays close attention to the needs of the client, but also to their primary family members. We’re here to provide information and education, orchestrate the delivery of durable medical equipment as needed, and provide any and all support we can. Plus, you have access to 24-hour hospice care support on the phone, so you’re never left alone – or wondering – no matter what time of the day or night.

Regular visits from hospice nurses and aides

Our hospice nurses visit according to the needs of the client. In most cases, these visits take place about once per week. Those visits may increase to two or more visits depending on the situation or as the client comes nearer to the end of their life. We also have a team of compassionate aids who step in to provide bathing, clothing and bedding changes, and general grooming needs.

Support from the extended hospice team & volunteers

Hospice care includes a multi-faceted team of individuals who are there as you need them. This includes our social workers, chaplains, and a grief support team.  In addition to our professional hospice team, you also have access to support from our incredible team of hospice volunteers. We have volunteers able and willing to do just about anything, from providing a break to primary caregivers or grocery shopping to helping with gardening chores or walking the dog. Ask for just about anything that you need or could help with – and we’ll see what we can do.

Hospice Patients Don’t Always “Play by the Rules” When it Comes to Dying

We referenced this above, but it’s worth another mention. Unlike many terminal or chronic illnesses, dementia patients don’t “play by the rules” when it comes to the normal dying processes. For example, many of the things that quantify the end of life for a non-dementia patient (losing interest in the outside world, inability to complete daily tasks, or ceasing to communicate) are normal for dementia patients – even when they have many months or years to live. The dementia journey can be long, but hospice agencies are here to do all they can once your loved one meets the qualifying criteria. 

Connect With Hospice of the Golden Isles For More Support

Are you interested in learning more about how palliative or hospice care can support you or a loved one with dementia? Do you sense it’s time to bring in additional support to improve the quality of life for your loved one, yourself, and the family? Contact Hospice of the Golden Isles We believe everyone has the right to live out their journey with grace and dignity, free from pain. Our caring team provides the highest-quality hospice and palliative care that promotes our patients’ dignity, provides for their physical comfort and pain management, and is tailored to their unique social, emotional, and spiritual needs. We also provide caregivers with the support they need to care for their loved ones.