The Role Of Hospice Volunteers

We often say that hospice isn’t just for clients; it’s for families too. Hospice volunteers are an essential part of that family support system, offering just about every service, task, chore, or other type of support imaginable.

And when we say essential, we mean essential. When hospice was established as a free service to all in 1982, the ensuing Medicare laws required that trained volunteers account for at least five percent of the hospice provider’s total patient care hours. Without our volunteers, we would lose our Medicare compliance and funding. We want to spread the good word about all the amazing ways our hospice volunteers support our hospice agency, clients, and their families.

Hospice Volunteers Do It All

Whether you’re researching to learn more about what volunteers do and how they can support your household or you’re interested in becoming a volunteer, this post honors the reality that we couldn’t do what we do without our volunteers.

The Full Hospice Support Team

When you decide to move forward with hospice services, you benefit from a wide range of services and benefits. This includes:

Doctors
Nurses
Home aides
Social workers
Chaplains
Volunteers

All of these people come to your home, hospital, assisted living facility, or anywhere else the client chooses to spend their remaining months, weeks, or days.

The Volunteers Are Professionally Educated And Trained

Hospice volunteers undergo a rigorous training period and experience the same initial training as any new hospice employees (including physicians, nurses, chaplains, etc.). They must also pass a complete background check and have a clean DMV record and a current driver’s license, registration, and insurance. Hospice services are very different from those provided by a hospital or healthcare facility because they encompass the client’s (and family’s) mental, emotional, and spiritual well-being, along with facilitating physical comfort. The volunteers are there to step in and provide services that support the comfort and needs of the hospice client (and family) when it comes to daily living tasks as well as respite care.

What Do Hospice Volunteers Do?

There are three main roles hospice volunteers fill in our network.

Administrative & fundraising

Some of our volunteers work for hospice headquarters or in our hospice house, providing administrative tasks. You may also see them supporting any community outreach programs we run or setting/cleaning up booths or presentations at community fairs or other public events we participate in. In addition, they often answer the phones, organize the office, stuff envelopes, prepare mailings, support social media content, and work tirelessly to raise funds – and awareness – for hospice.

Retail & auxiliary fundraising

Most communities have a storefront or retail space that works to raise funds for our agency and to provide information/education about our services. Some volunteers specifically work in our Auxiliary as part of the aforementioned fundraising.

Direct patient care & grief support

Finally, our trained volunteers work in both direct patient care and grief support. The former meets a range of needs that come up when a client is in hospice, and the latter provides free grief support in the form of facilitated grief groups. Hospice agencies typically provide free grief support to anyone in the community (whether they’ve used our hospice agency or not). This support is available in one-on-one sessions with licensed therapists or weekly sessions (typically an eight-week format) facilitated by our volunteers.

Brainstorm ways our hospice volunteers can support you

Depending on the time of year and the demand, our hospice agency has dozens to more than 100 trained volunteers working to support the various needs that arise for our agency, our clients, and their households. Here is a list of some of the most common ways our volunteers serve clients, but we’re open to hearing any need you might have and working to find a volunteer who fits the bill. We should note that we get to know our volunteers very well during the intense training period, so we make it a practice to place volunteers in households with shared values, interests, and personality types.

Respite care

In cases where a spouse or family member is providing the bulk of the caregiving, volunteers are there to provide weekly respite care. These shifts are usually around three hours or so (but can be longer if arranged beforehand), allowing primary caregivers a much-needed and deserved break. Our volunteers are there to attend to the hospice client’s needs, providing primary caregivers with time and space to do whatever they want – whether that be taking a nap, meeting a friend for coffee or meal, attending health/self-care appointments, going on a hike, or anything else that helps them restore their energy reserves.

Reasonable household support

Our caregivers can help with all kinds of household support, including things like:

Gardening/plant care
Light housekeeping
Grocery and meal support
Pet care
Errand running

They are by no means housekeepers, but they can provide light duties in these areas to help pick up the slack.

Companionship

Much of the time, particularly if hospice clients live alone or are in a hospital, a hospice house, assisted living, or memory care center, our volunteers provide weekly companionship. This can include:

Going with them on walks or wheeling them outside for a breath of fresh air
Reading out loud
Listening to music or singing songs together
Looking through client’s scrapbooks and pictures while listening to their stories
Bringing them a special treat or favorite food and sharing it together
Playing cards or board games
And more!

Strong and caring bonds are formed when our volunteers show up week in and week out, doing things the client requests or enjoys.

Learn More About Hospice Volunteers

Are you interested in taking advantage of hospice volunteer services? Or, do you feel the call to become a hospice volunteer? Contact Hospice of the Golden Isles. We’ll point you in the right direction, and you’ll understand why hospice volunteers truly do make our world go ‘round!

Dying vs Active Dying: What’s The Difference?

The term “active dying” is used when someone is in the very last stages of the dying process. This is very different than dying because, in most cases, the physical and mental/emotional states of someone in the active dying stages are identifiable and distinguishable from the slower wind down that happens when they are dying or in decline.

Dying vs Active Dying

The dying process typically happens in one of two ways. Either we die very quickly due to a heart attack, stroke, or traumatic injury. Or, we die slowly over years, months, or weeks. In the latter case, we typically undergo a decline related to a specific disease or illness. Once in a while, some people simply wind down due to old age and the body’s slow shutdown. Sometimes we “live” for a while pursuing curative treatments and therapies or taking medications. However, there is almost always a point where the dying process shifts into the undeniable “active dying” or “transition” phase.

Signs A Loved One Is Actively Dying (Or In Transition)

Most literature describes active dying as the last three to four days. However, depending on the internal emotional, mental, and spiritual process a person is working through in the final days of their lives, we’ve had patients who were in a pre-active dying state for a week or more. This means their bodies exhibited signs of active dying we described below, but they live longer than average in that state. Here are some of the most common signs that a loved one has gone from dying to actively dying, in which case they probably only have a few days to a week or so left.

Complete lack of interest in food or water

Most people’s appetites wane months or weeks before they die. This wind down continues more drastically in the week to days leading up to death. By this point, most people do not want any food (or may already be unconscious most of the time – see next), and the only hydration they receive is via sponges dipped in water to comfort their dry mouths and lips.

Sleeping most of the time or completely unresponsive

By the time someone is in the active dying phase, particularly after the end of a long healthy life or via terminal illness, they begin sleeping more and more. This eventually transitions into an unresponsive or largely unresponsive state. They may open their eyes and look around sometimes, smile, or seem to see things in the distance, but they spend the majority of the time they have left in a retreat state.

Changes in urine output and bowel movements

The digestive system shuts down before we die, which is one of the reasons we advocate honoring a loved one’s resistance to food. The body doesn’t have the energy or ability to process food and liquids. This eventually leads to incontinence (if it wasn’t present already) or a decline in urine/bowel output. Any urine produced will likely be darker in color. This is completely normal, but your hospice team is there to provide input if you’re concerned.

Confusion or delirium

The clinical world describes what happens as “confusion” or “delirium.” As long-time hospice care providers, we’re not so sure. We invite you to be 100% supportive of whatever your loved one talks about, sees, or hears during this time – even if it involves people or things you can’t see. Dying people frequently speak in metaphors or symbolic language because they’re not as anchored in the logical, linear world anymore. So, mom might say something like, “Bring me those roller skates, I’m ready to head down the skating hill,” or, “I’m trying to find my tickets for the train, but I can’t find them.” In most cases, reassuring them and letting them know they’ll get the skates or find the tickets when it’s time to go puts them at ease – and you’re getting to witness the sacred and mystical aspects of the dying process. Don’t assume that ‘nonsense’ talk or seeing things you can’t perceive is related to medication. That does a disservice to the dying and means you can miss out on meaningful messages and requests.

Changes in body temperature and blood pressure

As the body’s systems shut down, their temperature may be more erratic – sometimes running a fever of 100 or so, other times registering temperatures lower than the standard 98.6. This is very common. Pay attention to body cues and add or remove soft blankets (or adjust the home temperatures) to help them remain comfortable. It’s also common for their blood pressure to drop significantly. This is also normal.

Mottled, blue, or greyish hues

As you can imagine, circulation slows considerably, and this leads to color changes. Typically, these begin in the extremities (hands and feet). Don’t be alarmed if their skin tone changes to a gray or blueish appearance. It may also become mottled. When this happens, their feet and hands will feel cold to the touch. Unless they are shivering or sweating or able to express discomfort, they are not in pain or uncomfortable. They exist in an altered state and are far less aware of their physical bodies than you are.

Fluid in the lungs and the “death rattle”

In the last days and hours, fluid build-up in the lungs and slower (and skipped) breaths lead to what we call the “death rattle.” This is one of the most tell-tale signs someone is actively dying. They are not suffering, although the sounds of the death rattle often cause loved ones to worry. As they get closer to death, their breathing slows considerably, and some people may even pause for a minute or more between breaths, only to resume normal breathing again. Your hospice team is there to support you as needed during this last phase. Your job is simply to be present, quiet, and contemplative. You can pray, and express last words of comfort and love. The less you do, the more present you can be as you witness this last transition.

Let Us Help Support Your Actively Dying Loved One & Family

Are you in the process of ceasing curative treatments? Have daily tasks become harder to complete on your own as you or a loved one slows down due to disease or age-related changes? Schedule a consultation with Hospice of the Golden Isles to learn more about our services and how we can support you during both the dying vs active dying phases.

Honoring A Loved One’s Resistance To Food When Dying

Honoring a loved one’s resistance to food when they’re dying is one of the hardest parts of the process. Food and nourishment are associated with love, connection, and memory-making. Unfortunately, it can also feel like participating in their resistance to food means accepting the unacceptable or somehow contributing to their death.

Neither of these is true.

Lack Of Appetite & Resistance To Food Is Part Of The Dying Process

Historically, humans understood that death from disease or aging included an inevitable retreat from “normal life.” This retreat may start with a loss of vision or hearing, which makes outside events less interesting. It spreads to a shrinking appetite and eventually leads to a complete (if not near complete) disinterest in food altogether. Towards the end, the retreat continues inward until the life we are officially disconnected from the physical form we’ve taken thus far. We appreciate the words of hospice nurse and educator Barbara Karnes, who says: It isn’t that the person doesn’t want to eat. They usually try but state they just “can’t” eat. This is because eating or not eating has nothing to do with the personality choosing to eat or not. It has to do with the body releasing its hold on this physical plane. In other words, lack of appetite and disinterest in food (or the outside world) is a normal part of the dying process, and the letting go of the body that process requires. “Letting go” almost always involves:

Diminishing appetite (this may begin years or months before a person physically dies).
Less desire in leaving the home or in “outward” activities.
Spending more time in quiet reflection or processing memories and events.
Sleeping more.
Spending days or hours in an unconscious, non-responsive state.

The more we understand the role of waning appetite and the natural death process, the better we can support the ones we love as they die.

Forcing Food (Or Guilt Feeding) Causes More Harm Than Good

This waning appetite typically begins with eating less meat and heavy foods. You might notice that mom eats all of the jello or sips the broth but leaves most of the larger or tougher parts of a meal behind. After a time, she’ll only want broths or liquids. On a good day, she may request or enjoy some bites of ice cream or a shake but rarely finishes it. In addition to being a natural response to dying, this lack of appetite and food-specific desires directly correlates to the body’s digestive system. Physical organs, systems, and processes slow down and then shut down as we die. Eating foods that can’t be digested leads to physical discomfort, including nausea or cramping. It can also lead to constipation or diarrhea, which have their own unpleasant consequences. That’s a horrible way to spend time at the end of life. If constipation results, the remedies and treatments (especially if it leads to impaction) are incredibly uncomfortable (often painful) and compromise a person’s dignity. By honoring a loved one’s resistance to food, we also honor what they can and cannot handle and allow them to die in greater comfort.

Forgoing Food Is A Peaceful Way To Go

In some cases, patients choose to voluntarily stop eating as a way to allow the inevitable to come. This is common for those who have been kept alive via medical treatment or plans and curative medicines that no longer provide treatment, a cure, or high quality of life. This is also an option for people who no longer want a feeding tube or accept they’re dying and no longer want to prolong dying by forcing themselves to eat and drink when they either can’t or don’t feel like it. If the person is ready to cease treatment and isn’t feeling hungry anyway, voluntarily stopping eating and drinking (VSED) is a natural choice. As we cited above, when the body no longer wants food, or can’t process food, it’s not hard to stop eating or drinking. In fact, patients who cease eating with the support of their families have some of the most meaningful and peaceful last weeks and days because the energy in their space turns from “treatment” and “doing-based” action to the more spacious energy of connection, “being,” and reverence for the precious time remaining. The good news about VSED is that people can change their minds at any time and begin drinking fluids and eating again whenever they wish. In that case, we hope their return to eating and drinking is 100% their choice and not out of obligation to family members or loved ones pressuring them otherwise.

Tips For Supporting A Dying Loved One’s Refusal To Eat

Again, it’s not always easy to stand by when a dying loved one no longer wants food or water. However, it’s our experience that the most peaceful and meaningful deaths are those where the one who is dying is respected, and those who surround them dedicate themselves to supporting whatever needs arise. Here are tips on how to support your dying loved one when they resist food or refuses to eat.

Enlist the support of your hospice team

Your hospice team is there to support you in every way. Lean on us when you need to. We’re here to remind you that what is happening is completely normal, to provide resources around whatever arises, and offer comfort care accommodations as needed.

When there is resistance to food offer it but do not pressure

It’s always fine to offer food and drinks. Sometimes a person may go several meals or several days without food and then say yes to some sips of a favorite soup or suck on a popsicle. So, we recommend offering sips, light foods or snacks, and small treats as you would normally, but graciously respond to refusals to prevent your loved one from feeling pressured or guilted into consuming food when they don’t want to. Also, the standard three meals a day are overwhelming in most cases. Instead, shift to smaller and more frequent food offerings.

Review (or create) an end-of-life plan

The more you and a loved one include in your end-of-life plan, the easier it is for others to honor those wishes. If you don’t have an end-of-life plan in place, consider creating one. Feel free to use our Questions to Ask to Prepare Your End-of-Life Plan to start the process. Then, share that plan with your hospice team and closest loved ones so everyone understands your wishes. If you already notice a declining appetite, consider adding something specific about not wanting to feel pressure around eating and drinking.

Use damp oral swabs to keep the mouth moist

Once a person is no longer drinking or drinking very little, their mouth becomes understandably dry. You can use dampened oral swabs to moisten the mouth as desired or needed to combat this uncomfortable side effect. For this purpose, we recommend getting swabs without mouthwash or flavoring. If that’s all you can find, dilute them first and use pressure against a dry surface to remove excess water before swabbing the mouth. Your hospice nurse can provide swabs for you or have them delivered. These swabs are also available online and in drug stores. Keep a lip salve handy and apply a light coating on the lips after the mouth is swabbed to prevent chapping. Here is a video explaining how to do this if you don’t have a hospice care team on board.

Connect With Us For End-Of-Life Support

Are you facing an end-of-life diagnosis? Has an aging loved one seemed to retreat from normal activities or eating regular meals? Connect with Hospice of the Golden Isles. After hearing about your experience, we can make recommendations on whether or not hospice support can help. Hospice provides 24/7 access to information, advice, and support to ensure you’re never left with unanswered questions – including what to do when a loved one stops eating.

New Rules Of End Of Life Care: What Happens When We Die

If you don’t understand what happens to our bodies when we die, including our mental, emotional, and soul realms, what you do to “care” for the person you love may do more harm than good. Recognizing that death is not a medical event and deepening our understanding of death’s natural progression is one of the most important things any of us can do to respect dying loved ones, their families, and the community as a whole.

5 Key Things To Understand About Dying

As hospice care providers, we appreciate the dedicated work of Babara Karnes R.N., and we’ve recognized her work in previous posts. Karnes has a beautiful, short video and a body of easy-to-access DVDs, booklets, and other literature you can access from your local hospice agency or online. All are affordable and are immensely reassuring resources for families of loved ones who are at the end of their physical lives. Here are 5 key things to understand about dying, otherwise called The New Rules of End of Life Care.

Dying is not a medical event

Every living thing dies, including humans – and ourselves. This tells us that death isn’t a medical event; it’s a natural part of the life cycle. Some of the events or causes leading up to death may have been medical, for example, health conditions or diseases that may or may not have a cure or treatment options that suspend physical life with the disease. However, once the scales have tipped from living with the disease to dying from the disease, it’s time to chart a new course of action (or non-action) in the form of a conscientious end-of-life plan. The same holds for those who are dying due to old age; recognizing the signs that someone in their mid-80s or older is dying allows us to shift into the service supporting them as their body begins to let go of life. If families cannot recognize that death is not a medical event but, as Karnes reminds us, “a communal event” they continue pursuing medical interventions, treatments, and hopeless curative attempts that often do more harm than good. Treating death as “clinical” or “the worst thing” rather than Precious Time means the potential for far more physical, mental, and emotional pain, discomfort, anxiety, and anguish for your loved one and everyone else. The antidote to that dismal reality is recognizing that an individual is dying, and then honoring this sacred rite of passage for them and the community.

Lack of appetite is okay and 100% natural during end of life care

“Food is what holds us in our body. Food is the anchor that…gives us grounding, and if the body’s preparing to die – it doesn’t want the food or the grounding. It’s trying to let go.” If someone dies from old age, their appetite begins to wane years and months before they actually die. Likewise, when people die from a more specific illness, disease, or syndrome, their appetite may wane or disappear more abruptly. Either way, in addition to helping the body let go, a lack of appetite or interest in foods also indicates the body can no longer process them. If that’s the case, insistence on eating or wheedling and getting someone with no appetite to eat can lead to unnecessary medical interventions or painful treatments due to intestinal blockages or severe constipation/diarrhea. It is not easy for loved ones to honor a dying person’s wish to not eat because food is such a source of comfort, a way to show love, and a way to pull the community together. However, one of the most loving things you can do is honor that. Offer things they love, or simple broths, liquids, etc., but never force or coerce. Take the energy and intentions around “forced eating” and put it into the more meaningful practice of preparing for their death. Honoring their wishes in the appetite arena increases their ability to die more comfortably.

Death is not painful

That is a natural segue to the next rule for loving end of life care: death is not painful. “The person is so removed from their physical body that they don’t experience it [pain] the same way that we who have a firm grip on this planet feel it.” Some things may cause pain, typically related to the pain associated with whatever condition they may be dying from, or from being bedbound, but these are fixable using reasonable comfort management strategies. End of life pain management should correlate with pain levels related to the disease and its progression – not that a person is dying. Beware of the tendency to administer morphine for pain without expert recommendations. Most clients are more interested in being slightly uncomfortable or willing to experience tolerable amounts of pain/discomfort than being drugged up and unable to think, process, or communicate clearly with those present. Instead, treat disease-oriented pain until they die, but never more than they need. Let your hospice care team be your guide in pain management and comfort care, ensuring you’re allowing room for the loved one to die with as much clarity as possible.

Withdrawal is a natural part of the dying process

Withdrawal, indicated by more sleep, quietness, nonresponsiveness, etc., is all part of the dying process. As we die, our bodies slow and shut down so that our minds and souls can let go, move inward, and shift out of our physical bodies. Just as you don’t wake a sleeping baby, you do not disturb a sleeping or withdrawn dying person unless absolutely necessary. Unless the dying person indicates otherwise, it’s fine to hold their hand, to lie in bed with them, or to let their dog/cat curl comfortably at their side. The closer they come to their last moments, the more withdrawn they typically become. Your hospice team is there to remind you of what is normal, so you can be more attentive to what is happening and less in denial or the dissociation of trying to fix and control everything.

Your presence is the greatest gift you can give a dying person

Being present is one of the greatest gifts you can give to someone who is dying. The witnessing, the holding, the touch, the love – that communal companionship and presence are more important than anything else. Once someone is actively dying, caregiving should shift from “trying, trying, trying” to an attentive presence. In that way, acknowledging, surrendering to, and respecting that someone is dying can energetically restore caregivers so they can be present – rather than working as hard – during these last precious weeks, days, and hours. Words are less meaningful at this point as dying people may hear them, but words are less meaningful because they are disengaging from the physical realm and retreating inward. If communicating complicated, painful, or challenging messages, keep them quiet, simple, and short. Less is more, yet less can mean everything to you and your loved one. Remember, this moment only comes once, and you can never revisit it. A reverence for the deathbed and its natural progression is something you’ll never regret. Forced business, avoidance, or forcing your agenda on the dying can haunt you for the rest of your life.

We Support Your Family With End Of Life Care

“When we’re at the bedside of a person who is dying, it is all about the community – about the togetherness – not about the medical stuff going on.” We’ll end as we began. Dying is not a medical event; it is a community and cultural event – as much as an individual process – that honors the age-old rhythm of life, that begets death, that begets more life, and so on. Hospice of the Golden Isles is honored to be there and support your family as you participate in the natural waning of your loved one’s life. Contact us to learn more about our services and how we can provide comfort, assistance, and compassionate expertise for you and your family.

Reclaiming Control Of Your Treatment Plan

Meeting with doctors and specialists should feel empowering and like you’re a stakeholder in your care team. However, most patients with a terminal or chronic diagnosis feel the exact opposite. The combination of limited appointment times, medical speak, the emotional rollercoaster of handling all you’re hearing, and the desire for healing can mean you embark on a treatment autopia track that runs out of control.

That should never be the case. It’s time to reclaim control of your treatment plan, so you and your family make the right decisions for your values, well-being, and quality of life.

5 Tips To Help You Regain Control Of Your Treatment Plan

Patients are in control of their health and treatment plans and should be treated as such. You should have the power, control, and necessary information and understand all the risks and benefits of prospective treatments, so you make choices that make the most sense for your goals and that honor your body, mind, and spirit. Reclaiming a treatment plan sometimes means saying no to more treatments. That isn’t always easy at first, but when you compare the quality of life you have now and the quality of life you may gain by ceasing treatments and making the most of the time you have left – you feel empowered and free.

Tell your physicians/specialist you need to regroup

Physicians and specialists are trained to “fix things;” they aren’t always very good at being 100% honest and transparent when things can’t be fixed, or treatments aren’t working (more on that in #5). Being your own advocate and admitting you want to regroup, get clear, or hear blunt truths may be the catalyst for more honest communication with the healthcare team. The first place to start is speaking frankly to the physicians/specialists (or their R.Ns., N.Ps, P.As., etc.) treating your terminal diagnosis. Let them know you’re feeling out of control of your treatment plan and need to regroup. Then state clearly what you’re experiencing.

One example might be: “I don’t always understand what you’re telling me about where I’m at and what I can expect from treatment A, B, C. I need more time to digest the information and hear clear opinions about what you recommend.”
Another could sound like, “I’m feeling X (exhausted, sick all the time, like negative side effects outweigh most benefits, etc.) from the current treatment plan. Am I at a point where the risks outweigh the benefits?”
Or, “In your opinion, are treatments futile? Should I be looking at ceasing treatment and finding more quality in the time I have left?”

You are the boss, healthcare teams are working for you, and it’s time for treatment plans or palliative care plans to reflect that.

Connect with a patient advocate

Healthcare ad patient advocacy is a rapidly growing field. The fact you’re reading this article, meaning you or someone you love feels out of control or confused about treatment options, proves why. Healthcare advocates work for you, serving as informed, compassionate ambassadors between you and your family – and healthcare providers. They’re training in navigating insurance and treatment red tape and help you voice your opinion, so you never feel like “less than” due to medical jargon or clinical power dynamics. A patient advocate helps clients review their diagnosis, available treatments, and the medicalese/jargon- acting as an interpreter. They provide experienced, objective ears during appointments, visits, or telehealth connections, so you don’t forget key details. In addition, patient advocates can sit with you and provide a compassionate ear as you express the complicated emotions that arise when one faces end-of-life diagnoses. Finally, patient advocates ensure you retain complete control of your treatment plan so that your holistic well-being is always at the heart of any treatments you choose, pass on, or opt to end.

Create an End of Life Plan to guide treatment options

Sometimes the best way to figure out what treatments you want or don’t want is, to begin with, the end in mind. Figuring out what you don’t want means you stake a stronger claim in what you do want. Working through questions to prepare an end-of-life plan provides invaluable information. Sharing the answers with your oncologist, gerontologist, or other specialists helps them get a clearer idea of what treatments resonate with the plan, and which ones place you on an autopia track to things you may not want (long hospital stays, a taxing appointment schedule, feeding tubes or life support, and so on).

Surrender to some important but hard-to-accept truths

Reclaiming control of your treatment plan often means surrendering to essential, but hard-to-acknowledge truths. We often meet with clients who’ve been miserable for months, or even years, because they weren’t willing to accept the truth. They want the miracle; they want the treatment/medication/therapy to heal the unhealable; and they want “more time.” The longer you attach and blindly hold onto the impossible, the more of what was – and is – possible disappears behind you. Bluntly stated: what good is “more time” if you spend that time physically and emotionally miserable, unable to find joy in that time? Stephen Jenkinson, the author of the book Die Wise, speaks succinctly on this point: More time almost never looks or feels or goes the way people imagine it will when they are bargaining for it…More time, when it finally kicks in, is the rest of a dying person’s life, and the rest of that life will be lived in the never-before-known shadow of the inevitability of their dying. In order to reclaim More Time in a way that supports quality time, processing time, and meaningful time with loved ones means accepting:

There are no magic bullets for a terminal or chronic disease
Medications and treatments are tools that don’t always work
When your physical and mental anguish conflicts with the hope of any treatment or medication, it’s time to create a new plan.

Saying no to further treatments may be the most control you’ve ever had

Sometimes treatments work for a while. Sometimes they don’t. Sometimes treatments that used to work stop working. The best-case scenario is creating a forward-thinking treatment plan so you don’t end up at a destination you never wanted to arrive at. The next best thing is recognizing when it’s time to stop treatment, get the support you and your family need for the time you have left, and honor the “Precious Time” rather than the “More Time” paradigm.

Hospice of the Golden Isles Helps Patients Reclaim Control Of Medical Treatments

Scheduling consultations with palliative and hospice care providers is a smart way to begin reclaiming control of treatment and health plans. We’re here to support you no matter what you decide, but the information we have and resources you’ll have access to along the way provide peace of mind as you navigate what feels best or makes the most sense for your next steps forward. Contact Hospice of the Golden Isles to learn more about how we can ease the way.

Embracing Death As Beautiful

Most people who work in the realm of death, dying, and grief would agree that Americans are primarily a death-phobic culture. People fear death, often refusing to talk about it, perpetually putting off making end-of-life plans, and have never seen a person die. As a result, the idea that “death is beautiful” can seem downright impossible.

Moving Toward The Beautiful Sides Of Embracing Death

While it’s true that the physical aspects of death and dying may not always be pretty, and some are downright unappealing, the bigger-picture death process can be incredibly beautiful. However, in our experience as hospice and palliative care providers, we are very clear on what it takes to move toward the idea of embracing death as beautiful. We certainly don’t want to wax poetic here; this is serious stuff. So, if the word “beautiful” repels you, we invite you to replace that with another word, like Natural, Transcendent, Sacred, Meaningful, or another option that resonates, so you don’t get hung up on the semantics.

Create an end of life plan before you stare death in the face

Most people wait far too long to create an end-of-life plan. In a best-case scenario, people would create end-of-life plans in their early 20s and then revise them every few years and then every year or so after their 50s. Comprehensive end-of-life plans gently direct you through the most critical questions around advanced medical directives, disease treatment preferences, and clarity around when to cease treatment. They also include questions around where and how you prefer to die. These plans are personally created to honor your values. They also offer great solace to loved ones who can follow your wishes if an unanticipated accident or turn of events renders you incapable of speaking your wishes. So, by creating detailed end-of-life plans shared with close family members and healthcare providers, most individuals feel a great weight lifted from their shoulders, making death feel less stressful or full of unknowns.

Gain an understanding of what happens to the body when we die

The number one thing we hear from patients about their transition to hospice is, “I am afraid of dying…” And pain is a leading cause of that fear. The reality is that dying is not painful. The conditions leading to your death may be painful (injury, disease effects, etc.), but those are all manageable. The media has done a very poor job of showing what the real dying process is like. They make it look fairly short and tidy, with most people uttering memorable or inspiring “last words.” Most of us don’t die that way at all. And while there can be scary or unpleasant moments, those are manageable when people understand what happens to the body when it dies.

Connect with palliative and hospice providers sooner rather than later

If you are diagnosed with a terminal illness, connect with local hospice providers. While some people are completely cured, most experience treatments that allow them to live longer – but they’re likely to die from the disease. Connecting with hospice and palliative care providers sooner rather than later means you have information about all of the services they offer and what hospice service is like. That information is typically very comforting, and while you may not want to enlist their services now, you’ll have an idea of which hospice service to call when you decide to end treatment. The sooner patients and families enlist hospice support, the better quality of life they experience.

Live daily life to its fullest

This does not mean you need to sell everything you own and travel the world (although it might, if that was always your lifeline dream). On the contrary, the thing that creates the most pain and discomfort around dying, once pain management is established, are all of the “things left undone.” Patients’ dying process is often complicated and made darker by:

Regrets
Things they wish they’d done that they never did
Severed or strained relationships
Not having the courage or ability to express regrets, apologies, or unspoken anger/hurt

The best way to embrace one’s death is to know that, by and large, you did the very best you could and completed almost everything you wanted to that really mattered. You may need to grieve things done and left undone. It also means having tough conversations to make amends (if necessary) or to let others know how they hurt you and that you want to clean up the relationship. There aren’t always “happy endings” the way you’d prefer, but the ability to be seen and heard – or to truly see and hear others – provides incredible solace – especially at the end of life. But why wait until then? Anyone can begin living their best life “right now,” making it that much easier to embrace death when it inevitably arrives.

Honoring the natural cycles and rhythms of all life

Nothing lives forever. Not a single thing. Life’s natural cycles and rhythms demand that living things die and make way for new life. Understanding that you are one amazing part of that cycle and rhythm can help you see the reality that while the body may die, your life energy continues fueling what comes next. Some people call this energy a spirit or soul, while others view it scientifically as an energetic force. But as science teaches us via the first law of thermodynamics: energy cannot be created or destroyed; it simply changes states. The more patients spend time seeing the connections between themselves and the natural world around them, the easier time they have seeing death as natural, necessary, and – yes – even beautiful.

HGI Helps Patients & Families Find The Meaningful In Dying

Would you like to work with care providers who are 100% dedicated to making the dying process as meaningful and beautiful as it can be? Then, connect with Hospice of the Golden Isles. Our team of doctors, nurses, aides, social and spiritual support, grief counselors, and volunteers provides comfort, solace, and quality of life for all our patients and their families.

When To Stop Disease Treatment

The medical world operates in a “fix it” paradigm, which is a wonderful thing in most cases. However, we’ve found that the model lacks the wisdom of a long-term, bigger-picture approach when treating terminal or chronic health conditions.

If patients aren’t careful, they wind up pursuing treatments they would never have in the beginning or participating in treatments that diminish their quality of life in irreversible and regrettable ways.

Things To Consider Before You Stop Disease Treatment That Prolongs Life

Deciding when to stop disease treatment isn’t easy, but it often frees patients and families to enjoy the highest quality and most meaningful life they have left. There are several things patients and families need to consider before stopping treatment.

Quality of life vs quantity of days left

The question of quality over quantity is something we ponder hundreds, if not thousands, of times in a lifetime. When it comes to treatments that prolong life, quality vs. quantity is the primary consideration. We highly recommend that everyone – terminal illness/disease or not – ponder deep, big questions about their End-of-Life Plan. Your answers become the guideposts for which treatments you choose – and for how long – when presented with a terminal diagnosis. Questions include things like:

What does quality of life mean to you?
What kind of life do you not want to live?
How many times (if any) do you want to be resuscitated?
How long would you want to be on a feeding tube or life support (if at all?)
Where do you want to spend the end of your life (hospital? Home? Hospice house?)

These are all earnest questions, but they should be asked as early in the treatment phase as possible. The answers will help to shape your decisions around when to stop treatment. Comfort and quality of life trump the number of days you have left if you’re spending them unconscious, unable to do things you enjoy, without the ability to taste/enjoy good food, in physical discomfort/pain, or separate from the ones you love.

How Many Times (And How Long) Have You Pursued Treatment?

The American Board of Internal Medicine (ABIM) started an organization called Choosing Wisely in 2012 to promote conversations between clinicians and patients – helping patients choose care that aligns with their ultimate goals, values, and end-of-life preferences. Some of the basic questions used to guide patient/clinician conversations are around whether the treatment option(s)are:

Supported by evidence
Not duplicative of other tests or procedures already received
Free from harm
Truly necessary

And, when it comes to cancer treatments, they state “If you have had three different treatments and your cancer has grown or spread, more treatment usually will not help you feel better or increase your chance of living longer. Instead, more treatment could cause serious side effects that shorten your life and reduce the quality of the time you have left.” That wisdom applies to many treatments used to prolong life for patients with a terminal illness or disease. Choose wisely, and be brave enough to say “enough” when the prognosis won’t improve.

How much are you suffering from the treatment?

Sometimes, the suffering from the treatment doesn’t make sense for the disease’s prognosis. It’s one thing to suffer for a short time because studies show you’ll gain months or years of health and strength again. It’s another to hear a doctor admit that your days are numbered even with treatment. The pull to do anything to live longer is strong, but at what cost? Weigh the suffering from the treatment with the suffering from the disease. In many cases, patients decide they’d rather be in less pain and enjoy life more for a shorter time than suffer indefinitely from treatments that mean most of their time is spent in bed, feeling unwell, or in physicians’ offices.

Have doctors or nurses mentioned hospice?

As we mentioned, our healthcare system is better at trying to fix something than acknowledging when something can’t be fixed anymore. Unfortunately, this inability of many doctors to be straightforward in hard ways keeps patients on a treatment autopia track they wouldn’t have chosen if they knew where it would lead. If your doctor or nurse has mentioned hospice, pay attention. That is a sign that treatments aren’t going to make you better, or they feel your quality of life will diminish from here on out. It means care providers feel you’ll benefit more from hospice services than treatments. Plus, hospice services bring everything you need – including medical support and equipment – wherever you want.

Is pursuing treatment an excuse to avoid the reality to stop disease treatment?

Are you suffering through treatments because you haven’t been able to face the reality of a terminal diagnosis? The fear of suffering and death is so powerful that people will voluntarily choose suffering and treatment instead. However, a terminal diagnosis doesn’t go away. So, avoiding your fears, anxieties, or concerns around the end of your life only builds up – rather than diminishes – if you ultimately know treatments aren’t saving you. Hospice and palliative care teams are here to support you. With our services, you can take advantage of palliative comfort care while pursuing current treatment plans. In addition, you’ll have access to physicians, nurses, social workers, therapists, spiritual counselors, and others who can help you through your decisions about whether or not to stop treatment. This support provides tremendous relief to our clients and their families, helping them to make decisions that come from their truest desires – rather than fear.

Stopping Treatment For A Terminal Disease

Are you beginning to feel like enough is enough for your disease treatment plan? Are you interested in learning more about what it would mean to stop disease treatment and pursue the highest quality of life for the time you have left? If so, Hospice of the Golden Isles is here to support you. Contact us to schedule a consultation. We are committed to providing peace of mind, and invaluable support, for those facing end-of-life decisions.

Recognize & Prevent Caregiver Fatigue And Burnout

Caregiving for a spouse, parent, or close family member is a noble job – and it’s also an exhausting one. Those who serve as primary family caregivers are at risk for caregiver fatigue, which leads to burnout.

In addition to compromising your own health and well-being, caregiver fatigue and burnout compromise the level of care your loved one receives. You simply cannot provide patient, unending care around the clock if you aren’t taking care of yourself.

7 Red Flags Indicating Caregiver Fatigue

The following are seven of the most common red flags indicating caregiver fatigue. If they go ignored, the fatigue progresses into full-fledged burnout. This can result in physical illness or disease, not to mention mental and emotional breakdowns. In worst-case scenarios, unchecked caregiver fatigue also results in neglect or abuse of the patient. If you or someone you love is a primary caregiver, pay attention and seek support if you notice any of these signs.

You can’t keep your eyes open

Not surprisingly, chronic exhaustion is one of the first signs of caregiver fatigue. In many cases, this is the result of being sandwiched as a caregiver between the needs of children who are still at home in addition to the one you’re caring for. Sleepless nights may also contribute. Figuring out how to get the rest you need is imperative. That said, sleeping all the time is another sign of caregiver fatigue, as well as depression, so aim for the regular seven to nine hours per night if possible – and schedule an appointment with your healthcare provider if you’re suffering from interrupted sleep or difficulty waking up.

Difficulties concentrating or focusing

A tired brain isn’t as efficient as a well-rested one. Most people with caregiver fatigue have a hard time focusing on any one thing. They may feel constantly scattered or notice they’re going from one thing to the next without finishing any of them.

Forgetfulness

Did you forget a regular meeting, appointment, or calendar date? Are you struggling to remember the exact date or which day of the week it is? Maybe you’ve found yourself driving further up the road than you meant to because you missed the regular turn into your neighborhood grocery store or bank. Caregivers often feel like they’re at risk for a dementia diagnosis because their memory stops working like it used to. This is rarely the sign of a medical condition and typically indicates you are overtired and overworked – and that you need additional support!

Moodiness (depression, irritability, anger, anxiety)

Most caregivers experiencing fatigue or burnout look back and see how their moods shifted and became increasingly erratic. Part of this is due to the inevitable fatigue accompanying caregiving when you don’t get the respite care you need. However, never underestimate the power of anticipatory grief. If you’re caregiving for someone in a terminal situation, you have to put on the business face while you’re grieving the person/relationship you’ve already lost or anticipate losing. Those feelings deserve to be felt and expressed via healthy outlets.

Overconsumption of food/alcohol/medication to numb out

Many caregivers slipping from fatigue to burnout begin overeating (or undereating) or using unhealthy amounts of alcohol or recreational drugs as an escape. Your health and well-being are a priority – which requires a balanced diet and regular exercise – sans excess alcohol or drugs. However, your mental clarity/sobriety is also essential to be a good caregiver. Be accountable and reach out for support if you notice you’re choosing unhealthy coping mechanisms.

Inability to maintain personal meetings, appointments, and social engagements

When was the last time you went to dinner or coffee with a good friend or upheld the regular rhythm of your personal healthcare, grooming, or social appointments and engagements? If you skip more events than you attend, it’s time to enlist support. Caregiving requires balance or burnout is inevitable.

Feelings of anger or resentment towards the one you care for

This is so common, and it’s absolutely nothing to be ashamed of. Naturally, you feel burdened, frustrated, or resentful as a result of your new caregiving role. These feelings are even more expected if you’ve been caregiving for several months or longer. However, these feelings are also a sign of caregiver fatigue or burnout. They put both you and your loved one at risk. Seek help ASAP to ensure the time you spend with the one you care for is as compassionately dedicated as it was in the beginning.

Five Things You Can Do To Relieve Caregiver Burnout

Here are five things you can do right now to relieve caregiver burnout and get yourself back in balance again.

Contact a hospice or palliative care provider

Hospice and palliative care providers are here to support you. We have an incredible team of physicians, nurses, nursing aids, spiritual counselors, and volunteers who dedicate our lives to helping caregivers just like you. You’ll be amazed at how quickly the quality of life increases when you have a dedicated hospice care team put in place.

Reach out to family and friends

Caregivers need bonafide time off, just like everyone else. Reach out to family, friends, or church peers and ask if anyone can provide a few hours a week to take over. Once a schedule is established, you’ll be able to get out of the house and take care of yourself. At first, that might look like taking a shower that’s longer than five minutes or taking a walk in a favorite park. Pretty soon, those respite care shifts will mean having a good chat and a coffee or lunch with a friend, taking a long nap, having your hair or nails done, or attending your child/grandchild’s extracurricular activities. Respite care is game-changing.

Resist the urge to micromanage

Caregiving can become a double-edged sword if you’re not careful. You want to get away but find you can’t because you suffer under the illusion that “nobody can do it as good as I can…” and the idea that the whole kit and kaboodle will go down the tubes without you. In fact, that’s not the case at all. Nobody can do it like you, but plenty of us can do it well enough to keep things together while you get a break. We promise!

Utilize hospice volunteer offerings

There is a lot to take in when you’re going through the initial intake process and getting used to how hospice care works. However, don’t overlook the offer to provide volunteers. Hospice volunteers go through intensive training, and their goal is to support our clients and their families in any way they can. This can include a long list of options, such as respite care, grocery shopping, dog walking, gardening, meal delivery, plant watering, and more. Take advantage of these FREE services, which free you up to take better care of yourself.

Focus on healthy foods and regular movement

Your body requires healthy nourishment and regular movements. Make it a point to have plenty of healthy, easy-to-grab, or heat snacks and meals. This ensures you can eat when you need to and get the vitamins and minerals your body needs to do the good work you’re doing. Consider using something like Meal Train, which allows family and friends to bring meals, snacks, or schedule food delivery as requested by the calendar. If you aren’t able to get out of the house to exercise just yet, take advantage of the many YouTube videos that are out there and find 10 or 20 minutes each day to move, stretch, get the heart rate up, and move those stress hormones right out of your system.

Take Advantage Of Support From Hospice of the Golden Isles

Are you suffering from caregiver fatigue and burnout? Don’t waste another minute. Contact the team at Hospice of the Golden Isles. We’re here to support you in any way we can, including putting you in touch with the many caregiver support resources available in our area.

How To Celebrate The Holidays On Hospice

how to celebrate the holidays on hospice

The nostalgia and spirit of the holiday season offer a special opportunity for patients on hospice and their family members to find meaningful ways to spend time together – even if that means shifting and adjusting the morning holiday celebration itinerary.

Holiday gatherings and family traditions offer the ideal window through which healing, processing, and the making of priceless memories can take place. Despite the mixed emotions and complexities, there are many ways to celebrate the holidays on hospice.

Holidays On Hospice: 6 Ideas to Create Meaning, Memories, and Joy

Also, please know it’s perfectly normal and expected to feel a deep sense of sadness or grief as you approach the holidays with a spouse or close family member on hospice. For many, it will be the last time you get to connect and share age-old traditions. Resist the urge to “fake it” or act like things are other than they are. Your sadness and grief are anchored in love, history, and shared connection. Those feelings may also reflect emotions unprocessed or words unspoken. Therefore, we invite you to view the holiday season as a powerful portal you can enter to connect with a loved one in hospice in deep and meaningful ways. Here are some of our suggestions for how to celebrate the holidays on hospice.

Remain attuned to the needs of the one on hospice

Depending on where someone is at in their journey with hospice, they may be raring to go, taking advantage of every waking minute. OR, they may be in their last weeks or months, often indicated by a greater need to sleep, withdraw from the outside world, and spend quiet time in inward reflection. This status can change rapidly, or without warning, so the main goal is to remain attuned – and in tune – with how your loved one is feeling. Your hospice team is a fantastic resource, and our nurses, volunteers, and other staff members can help you assess what makes the most sense for this year’s holiday planning.

Scale it down to the most important parts

One of the most important things to remember is that people on hospice are typically chair- and/or housebound. Things slow down, and loud, boisterous, or fast-paced activities are challenging. Hospice patients tend to tire more easily and need far more sleep in between energy bursts. With that in mind, ask what parts of the holiday celebration appeal most to them and then find ways to create a scaled-down version. This may look different depending on the person’s favorite holiday traditions, who is local and who’s not, or where they’re living (people in a hospice house setting have different options than those living at home). For example, it may make more sense to:

Bring parts of the holiday traditions to the one you love, rather than going to heroic efforts to bring them to events or places that cannot accommodate their current needs.
Check in with your loved one and their primary caregivers (or hospice team) to learn which times of the day are best for activities. Family events/plans may need to shift this year to accommodate when mom or grandad are most likely to feel social.
Bring them one or two of their favorite parts of the holiday meal rather than a full meal (waning appetite is very common, and forcing food can create problems for a body that is no longer able to digest and process it anymore).
Using video chat and hangout options to connect with out-of-town loved ones or to connect to the group events at specific times. Keep in-person visits solely to those requested by the patient.
Add a few meaningful holiday decorations (preferably the ones they request or ask for) rather than creating a space that is visually overstimulating. Consider using dimmers to keep lights ambient rather than exciting.
Work together going over old photos and albums, organizing and labeling them if key names or dates are missing. This can be a wonderful way for those on hospice to process their lives, share stories you haven’t heard before, or mend old rifts or wounds.
Have people write letters saying all they’ve always wanted to say to be read as your loved one is able over the course of the holiday season.

This list could go on and on, but use the ideas to accommodate your loved one’s needs, wants, and cultural preferences.

Don’t focus on a single day (flexibility is key)

As we touched on above, the status of a person on hospice is ever-changing. Some days may sound good in theory, but then one rough night or a series of bad days can make it impossible for your loved one to participate the way they want. Flexibility is key, and everyone involved should be prepared to surrender their set intentions to what may need to happen instead. Scheduling little things that can easily fit into a window of days is better than putting all of your holiday eggs in one day’s basket. Nobody should take it personally if a plan or event can’t occur. This is the way it goes sometimes, and the ability to flow with it provides the most ease for everyone involved.

Prioritize calm over chaos when celebrating holidays on hospice

Again, things move slower on hospice, and odds are your loved one now dwells in a much quieter mode of existence. Leave the chaos and excitement of the holidays for other locations and bring the more peaceful, calm, and rejuvenating traditions to the ones celebrating the holidays in a hospice setting. This is especially true for anyone with Alzheimer’s or dementia, or who is not as coherent as normal. Calm and soothing is always best, but feel free to pep things up if your loved one is feeling energetic or requests specific activities.

Being there in silence may be the best gift you can give

Don’t underestimate the power of being present and spending time with someone you love in mostly silence. You can create a playlist of your loved one’s favorite holiday songs to play softly in the background. They may also enjoy sitting together and rewatching their favorite holiday movies (or home movies). Don’t be surprised or take it personally if they drift in and out of consciousness, as sleep is the time when those who are dying process their lives and make peace with what’s behind them – as well as what’s ahead. Use this time to quietly and concisely express anything you feel needs to be said and invite them to do the same. These conversations can be remarkably healing and are one of the most important labors of love at the end of a person’s life.

Don’t forget about your loved one’s everyday care needs

Again, the hospice team and caregivers are a wealth of support. However, it’s not uncommon for families to take over the reins to have private quality time with their loved ones and give caregivers the chance to spend the holidays with their families. Regardless, it’s easy to forget that those on hospice have different care needs than they used to:

Regularly check in to ask if they need anything or offer breaks/rest periods.
Do they have access to regular privacy to use the bedside commode, or have their adult incontinence briefs changed?
Are you allowing them enough time to rest in between visits or any activity?
Are people respecting their lack of interest in eating or drinking so they don’t become physically uncomfortable or ill?
Is someone setting a timer for medication reminders?
Have they spent far longer than usual out in the living room or sitting upright? Give them time to lie down and rest again.

Let Your Hospice Team Support Holiday Planning

Would you feel more comfortable getting first-hand or personalized advice about how to celebrate the holidays on hospice without overwhelming your loved one? The team at Hospice of the Golden Isles is here for you. Our team can work with you and our client to create a meaningful holiday for everyone while honoring and prioritizing the needs and well-being of your loved one.

How Do We Know When A Loved One Is Dying?

One of the most common questions hospice nurses and staff receive is, “How will we know when they’re dying?” It’s challenging not to have a clear answer to the question. We never know if a person is truly dying until they die. Everyone’s journey and transition between living and dying are different.

However, what we can do is educate families about the dying process and some of the common signs that indicate a person is actively dying. Again, this won’t be a day, hourly, or minute prediction. Instead, recognizing these signs and being willing to face them with an open heart can completely transform an individual and family’s story.

Signs A Loved One Is Dying

To be clear: when we’re talking about the signs a person is dying, we’re speaking of a long-term death, as opposed to sudden death (unpredicted heart attack, aneurism, car accident, etc.) Most of the signs a person is dying occur in stages, some of which arise years and months before they die. Because our culture tries to ignore these signs or pretend that all medical issues can be fixed (they can’t), individuals and families are often shocked when death comes far faster than they were prepared for. This can lead to devastating emotional consequences, including not being prepared for all of the physical, mental/emotional, and practical aspects of dying and after-death care. The better able you are to have conversations about end-of-life, dying, and preparing for the future, the less stressful the process will be.

Years & Months Before Death: The Diagnosis

Most people die from a progressive disease or old age. In these cases, the signs a person is dying can start months or years beforehand. For many, it starts with an initial prognosis or diagnosis. You have chronic heart disease, cancer, Parkinson’s, ALS, COPD, etc. Yes, there are treatments. Yes, you can take medication to notably minimize symptoms and side effects and to extend your quality of life. The fact remains that in most cases, that diagnosis is the first sign that you are dying. Now, we’re all dying, and (in most cases) none of us know the exact “how” of the matter. A loved one may have a stage 4 cancer diagnosis that has you reeling, and they outlive you because you have a sudden heart attack or are hit by a car while crossing a street. None of us ever really know. However, a terminal diagnosis should serve as a wake-up call. Being diagnosed with a disease that may be curable/treatable but may not is also a chance to prepare. An 80th, 85th, or 90th birthday is another sign you’re closer to dying than not. You and your loved ones are best served by recognizing this is “the first sign you’re dying,” and begin making comprehensive end-of-life plans that honor body, mind, and spirit. Rather than being scary or heartbreaking (which it may be at some level), we can guarantee this process will remove a huge sense of dread and alleviate stress, improving your quality of life. This is also a good time to reach out to hospice and palliative care agencies in your area so you can begin taking advantage of their invaluable support services.

Months & Weeks Before Death: Lack of Appetite and Interest

In the months and weeks before death, many clients lose their interest in a range of things – most notably food and the outside world.

Lack of appetite

This typically starts by consuming smaller and smaller portions, or they may skip some meals altogether. Over time, they may only want things like ice cream, yogurt, smoothies, or simple broths. Finally, in the weeks and days before death, they may not want to eat at all. Lack of appetite is completely normal. Your loved one’s lack of appetite or disinterest in food is one of the hardest things to stand by and support. Our culture equates food with nourishment, comfort, and love. In some cases, preparing, serving, and sharing meals and snacks together may be the only way you’ve “enjoyed life” together since they started dying. Never force someone to eat if you know that they are in their last months or weeks of life. This is typically the body’s way of saying, “I don’t process food very well anymore. It takes a lot out of me to digest food and much of it isn’t digesting anyway.” Forcing someone to eat who doesn’t want to can lead to severe constipation or intestinal/g.i. blocks that are painful and stressful to treat. Instead, offer food regularly – but don’t take the “no thank you” personally. They are not suffering from eating. Instead, you may cause suffering by forcing or guilting them into eating.

Lack of interest in the outside world

This varies from person to person. Some clients watch football games the day they die, and others stop watching their favorite sports months or weeks before they die. In most cases, we notice a direct correlation between the level of need for inner processing and the level of outside engagement. The more personal and emotional work a loved one is doing on their own (or with the support of a spiritual counselor, therapist, hospice nurse, or loved ones) to work through their life, memories, fears, unresolved situations or emotions, etc. – the less likely they are to participate in the outside world. Remain open to their needs. This is also a good time to let them know the things you want them to know before they are no longer physically available.

Weeks & Days Before Death: More Sleeping & Less Engagement

By the time a client is weeks or days away from dying, odds are the efforts to “fix them” have ceased so they can be as comfortable as possible to do some of the most important work they’ll ever do. The labor of dying is not unlike the labor of being born into the world. Odds are they will be asleep more than awake, and our job is to keep them comfortable using balanced medications as needed. Your loved ones should have enough to be comfortable but not so much medication that they are knocked out or unable to communicate when/if they want to. Hopefully, they’ve let you know what they want (or don’t want) around them so the space can be arranged to their wishes.

Days & Hours Before Death: The Body Winds Down

Once death is imminent, we say the client is “actively dying” or “in transition.” During this time, you’ll notice several physical indicators that death is near:

Blood pressure will become quite low or may not register (there is absolutely no need to take blood pressure at this point, so feel free to let the “vital sign readings” go so you can be present with your loved one).
The extremities become cooler and may turn grey or blue.
The heartbeat becomes very weak and irregular – it’s often very fast or fluttery.
Breathing can be very congested and seem agitated (as many as 30 to 40 breaths per minute), or it may be very slow and seem to stop at times (as slow as six to ten breaths or less every minute).
Their words may not make sense (people who are dying often begin speaking in metaphors or in symbolic ways, rather than linear ways, in the days or even weeks before death. Resist the urge to “clarify” or “correct”)
They may be completely nonresponsive, but they can usually still hear you
Their mouth may be open (they may make gasping sounds, or you may hear a loud, “scary” rattle – called the death rattle – this is normal), so feel free to use sponges to gently moisten the lips, but there is no need to hydrate at this point.

The key here is to keep a calm and peaceful presence. As we mentioned, people who know they are dying go through a “life review,” whether they let you know it or not. Silent companionship is often the preferred method of “communing” with someone who is dying, but it’s also important that loved ones have a chance to speak their last pieces if necessary, as this may also help with the dying person’s “life review” and process. On the flip side, if your loved one was a very private person, make sure to create spaces where they can be alone. For example, “Mom, we’ll slip out for a minute and give you some time alone. We’ll check back in 15 minutes.” Private people often choose to die when no one is present, while extroverts typically wait to die until they’ve seen/connected with certain people or have someone nearby.

Contact Hospice If You Think Or Have Been Told Your Loved One Is Dying

Your hospice team is there for you 100% of the time, 24/7. If your loved one has taken a sudden turn or you feel concerned about whether or not they’re closer to dying than you thought, feel free to contact Hospice of the Golden Isles at 912.265.4735. We are here to provide comfort and support to our clients and their families and will do our best to stand by and provide insight if and when we know they’re dying.