The Power of Connection: Stories from Integrative Therapy

The Power of Connection: Stories from Integrative Therapy

The Power of Connection: Stories from Integrative Therapy

Wife hugging husband

When the Music Plays, Grace Wakes Up

For Grace, music has a way of reaching her.

Grace has been receiving services from Lightways Hospice and Serious Illness Care since February 2023, including nursing care, supplies, and support from the Lightways Integrative Therapy team. For more than three years, a team has supported her care, focusing not only on her medical needs but also on the things that bring her comfort and joy.

One of those things is music.

Whenever her music therapist Julia visits, Grace responds. In fact, her daughters, Patti and Margie, say they can count on it every time.

“Every single time Julia comes, Mom wakes up and sings along,” they shared.

It doesn’t matter what time of day Julia arrives. As soon as Grace hears the music, she becomes engaged and joins in. She may not sing every word or every note, but that isn’t what matters. What matters is the response, the recognition, the participation, and the joy of being part of the moment.

For Grace, Julia’s visits have become a meaningful part of her care.

That connection is at the heart of Lightways’ Integrative Therapy program. Music therapy offers another way for our team to connect with patients, using music to encourage engagement, expression, and moments of comfort. For patients and families, these visits can become something they look forward to and remember.

Grace’s daughters are an important part of her care, too. Patti and Margie know their mom well and are always encouraging her to participate and try new things. Their involvement, along with the support of Julia and the rest of Grace’s care team, helps create a compassionate circle of care around her.

It is moments like these that demonstrate what makes an integrated hospice team so special. Every member brings a different skill and perspective, working together to care for the whole person, not just a diagnosis.

For Grace, sometimes that connection starts with a song.

Julia plays.
Grace wakes up.
And she sings along.

Finding Comfort, Connection and Rhythm

For Andrew Goldberg, hospice care is about more than managing a diagnosis. It is about comfort, communication and making meaningful moments possible for both him and his family.

Andrew has been receiving hospice services from Lightways since last year while living with Amyotrophic Lateral Sclerosis, or ALS. As part of his care, Andrew has had the opportunity to work with Lightways’ Integrative Therapy team, whose goal is to support the whole person and complement the care provided by the broader hospice team.

For Andrew, one of the things he values most is the team’s focus on his comfort and relief.

He also appreciates the communication and coordination between the members of his care team. Knowing that everyone is working together helps provide Andrew and his family with confidence that his needs are being heard and addressed.

But there is another part of his care that has created a special connection for Andrew and his children: music.

Andrew recently participated in a project called “Heartbeat Rhythm,” creating a special recording that his kids especially enjoy.

It is a simple example of how Integrative Therapy can create opportunities for connection that extend beyond a single visit. Music can become something a family shares, a recording to listen to, a memory to hold onto, or simply a song that brings a little joy to an ordinary day.

At Lightways, Integrative Therapy is an important part of caring for the whole person. Whether through music, aroma, massage, or other supportive therapies, these services give patients additional ways to find comfort, express themselves, and connect with the people they love.

And sometimes, those connections create something that lasts beyond the visit.

For Andrew, it is a rhythm his children can listen to forever. A special piece of music they can call their own.

Request Integrative Therapy

To request an integrative therapy for a patient in our care, please speak with your Lightways team members.

 

Grieving Before a Loss: Anticipatory Grief

Grieving Before a Loss: Anticipatory Grief

Grieving Before a Loss: Anticipatory Grief

Wife hugging husband

Many people are surprised to learn that we can feel symptoms of grief before our loved one dies. We have a name for it: anticipatory grief.

Anticipatory grief can be felt as soon as someone learns of a life-threatening diagnosis. Although it is like grief that is felt after someone dies, it has some unique characteristics that often take people by surprise.

Anticipatory grief doesn’t just affect one person

Anticipatory grief can be experienced by both the person who is facing the end of their life and their loved ones, making it uniquely challenging. Grief Counselors find that families will often react to the same loss in different ways, making it hard to understand one another during this time. They also report that people will not want to burden each other when they are grieving, causing potential breakdown in communication and relations with one another.

In hospice, counselors encourage families to utilize their team, which includes social workers, chaplains, and other therapies, who can provide a lot of assistance to families in facilitating conversation with one another and also supporting each of the family members individually in determining the type of support they need during this time.

It’s complicated

Grief that is experienced in the anticipation of the end of someone’s life causes many mixed emotions. Patrice Martin, Director of Grief and Integrative Therapies, shares, “I’ve heard people describe their experience at the end of life as the ‘in-between place’, Martin explains, “where someone experiences both thoughts of holding onto hope and letting go.” Given the conflicting nature of these thoughts, the person can often feel confused and overwhelmed by changing emotions.

Counselors discuss the importance of self-care during anticipatory grief, which can cause emotional, mental, and physical exhaustion. In managing the ups and downs of illness, counselors encourage families to find ways to tend to their basic needs to help sustain them during this uncertain time. Martin states that, at the end of life, families often need to be preparing for both the short-term and long-term scenarios at supportive time and advises that they fully utilize the supports of the hospice team, who are skilled in helping to determine the goals of care, to assist them in identifying what matters to them most.

Denial is part of the process

Whenever someone is faced with bad news, it is natural for them not to believe it, or to question the reality of what they are being told. Martin explains that denial has a purpose in the grief process. “Denial can act as a buffer against intense emotions, allow us to keep positive, maintain our daily tasks, and feel a sense of normalcy during this time.” Thus, if someone appears to be in denial, that is not necessarily a concern. The concern, Martin says, is when someone appears to be “stuck” in denial. “Sometimes, by not accepting the reality of the situation, we may lose track of the big picture and not realize the futility or even harm of continuing the same treatments or activities”. In fact, Martin says, it’s quite common for a griever, after the death of their loved one, to look back and have regrets about decisions they made. She often hears clients in grief counseling express regret for losing patience with their loved one because they weren’t eating enough, understanding their limits, or moving fast enough. This is inevitable, says Martin, as it’s very difficult to fully accept the reality of their loved one’s limitations at the time it is happening. “We remind our grievers to remember what they understood at the time when they made those decisions, and to give themselves grace”.

This is where Martin says using the support of a hospice team can be very helpful to both the person and their family, as they assist both in understanding their illness and prognosis, as well as what to expect as the person’s condition declines. The hospice team also provides each family with a booklet that outlines common changes that occur when someone is reaching the end of their life. Martin encourages families to share with their hospice team any questions that they have or to ask what they can expect as the illness progresses.

It’s grieving more than just the loss of life

Although anticipatory grief includes all the emotions that relate to the fact that someone’s life is coming to an end, it also includes emotions relating to the losses that the person and their family have already experienced. Having a life-limiting illness can include many losses, including a person’s independence, mental and/or physical abilities, sense of control, plans for the future, sense of security, and sense of identity. A caregiver, whose loved one experiences these changes, can also feel as though they are losing their person before they are gone. Some families must face a physical separation due to the loved one’s need to reside in a different home or in a skilled nursing care facility. And some families face a psychological separation from their loved one due to cognitive decline or increased fatigue.

Anticipatory grief can also increase as the illness progresses. One grief client described her experience. “It was more of an unraveling as the weight of it got heavier with each relapse, with each hospital admission, each ER visit.”

Counselors advise that families acknowledge the losses they are experiencing and find ways to express how they are feeling about these losses. Families can talk with the hospice social worker, chaplain, or a grief counselor, and can also attend a caregiver support group to meet with others who understand. The Grief Support Program hosts a virtual caregiver support group for anyone who is caring for someone with an advanced illness. This reduces the isolation that can be felt both by caregiving and with grief.

Yes, anger happens too

Feeling angry about the situation can be quite common for both the person facing their illness and their loved ones. Again, Martin shares that anger has its purpose in the grief process. “Anger has a bad reputation, but it can actually help us to recognize what is important to us, protect things that we value, or help defend ourselves or our loved ones from a threat.” Since someone’s life is in danger, it only makes sense that they may react with anger. What’s important is that the person experiencing these reactions finds healthy ways to express their anger. Oftentimes, grievers are able to do this when they find people who understand and validate their feelings of anger. Again, this is where the hospice team can be helpful, as they encourage families to share any concerns they have about their loved ones’ well-being, or any worries they may have for the future. Counseling and support groups can also provide someone with the opportunity to share their frustrations without feeling judged.

Grief can be isolating

After a life-threatening diagnosis is given, we are forced to deal with a new reality, while the rest of the world seems to keep moving along. It’s not uncommon for someone to retreat from others as they process what is happening. And it can be hard to find others that understand what you are experiencing or know how to support you. Counselors encourage grievers to stay connected to their support system while also finding others who understand. Hospice and palliative programs are designed to provide support that is useful and understanding. At Lightways Hospice and Serious Illness Care, we believe that no one should have to face a life-threatening illness alone.

Questions about serious illness care or grief support?

Contact Lightways Hospice and Serious Illness Care directly at 815.740.4104 or our Grief Support team at 815.460.3282.

 

Do Hospice Patients Need Hospital Care: A Caregiver’s Guide

Do Hospice Patients Need Hospital Care: A Caregiver’s Guide

Do Hospice Patients Need Hospital Care: A Caregiver’s Guide

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One of the most frequent questions caregivers ask is whether a person receiving hospice care can still go to the hospital. The short answer is yes, it depends on the situation and what your goals of care are. Understanding how hospice works, and how Medicare and Medicaid coverage apply, can help caregivers feel more confident and prepared when unexpected situations arise.

Hospice Care and the Focus on Comfort

Hospice care is designed for patients with a life-limiting illness who are choosing to focus on comfort, quality of life, and support rather than curative treatment. Hospice services are typically provided wherever the patient lives, at home, in a nursing facility, or in some cases an inpatient hospice unit. Hospice services include medical care, symptom management, emotional and spiritual support, medications related to the terminal diagnosis, medical equipment, and 24/7 on-call support.

Because hospice prioritizes comfort and symptom relief, many issues that might otherwise lead to a hospital visit can often be managed at home with the hospice team’s support.

Medicare Coverage and Hospice

Under Medicare Part A, hospice is a comprehensive benefit that covers:

  • Visits from nurses, aides, social workers, and chaplains.
  • Comfort medication and any medications related to the terminal illness.
  • Medical equipment and certain supplies.
  • Short-term inpatient hospice care for symptom management.
  • Respite care for caregivers.

While enrolled in hospice, Medicare does not cover hospital care related to the terminal diagnosis, as hospice assumes responsibility for managing those needs.
Said a different way, hospice becomes your insurance provider and like any insurance must be aware and approve of visits to the hospital.

It is the hospice’s responsibility to manage any issues you are having which we can do in your home, facility or in our inpatient hospice unit.

When Can a Hospice Patient Go to the Hospital?

  • For issues unrelated to the terminal illness:
    If a patient experiences a medical issue unrelated to their hospice diagnosis, hospital care may be covered by Medicare or Medicaid, depending on the circumstances. It is important to notify the hospice team so they can help coordinate care. Please note that a fall with an injury, an infection, or dehydration is considered related to any terminal illness. If a patient with cancer has a heart attack, that would be considered unrelated.
  • If goals of care change:
    A patient always has the right to revoke hospice care if they choose to pursue curative treatment in the hospital. Hospice can be restarted later if the patient again meets eligibility criteria and wishes to return to comfort-focused care. Hospice must be notified immediately, or your Medicare is not available to you or the hospital.

Medicaid Coverage and Hospice

Medicaid hospice benefits are the same as Medicare’s and vary slightly by state.

Why Calling the Hospice Team First Matters

Hospice teams are available 24/7 and are trained to respond quickly to changes in conditions. Calling hospice before going to the hospital can:

  • Prevent unnecessary and stressful hospital visits.
  • Allow symptoms to be managed at home or in an inpatient hospice unit.
  • Ensure care aligns with the patient’s wishes.
  • Avoid unexpectedly denied medical bills.

Supporting Caregivers Through the Decision

Decisions about hospital care can be emotional and stressful. Hospice teams collaborate closely with caregivers to explain options, honor patient preferences, and provide guidance during urgent situations. You are never alone; help is always just a phone call away.

Hospice patients can go to the hospital, but hospice care is designed to reduce the need for hospitalization by providing comprehensive, comfort-focused care wherever the patient lives. Medicare and Medicaid cover hospice services related to the terminal illness, while hospital care for unrelated conditions may still be covered. When questions arise, the best first step is always to contact the hospice team, who can help navigate decisions with clarity, compassion, and support.

Questions about hospice care or what to expect?

If you or someone you care for has questions about hospice or what to expect, reaching out to a trusted hospice provider can help bring peace of mind during a challenging time. Please contact Lightways Hospice and Serious Illness Care directly at 815.740.4104 for any questions you or your family may have regarding hospice care and coverage.

 

Understanding Dementia Care: The Role of Palliative Care and When Hospice Is Needed

Understanding Dementia Care: The Role of Palliative Care and When Hospice Is Needed

Understanding Dementia Care: The Role of Palliative Care and When Hospice Is Needed

Wife hugging husband

Dementia is a progressive, life-limiting condition that affects memory, thinking, communication, and eventually the body’s ability to function. As dementia advances, individuals often require increasing levels of support as the brain gradually loses its ability to coordinate everyday activities such as eating, walking, swallowing, and communicating.

While there is currently no cure for dementia, specialized care can significantly improve the quality of life for both patients and their caregivers. Understanding the benefits of palliative care and hospice care, and recognizing the signs of advanced disease, can help families access the support they need at the right time.

How Palliative Care Supports Patients Living with Dementia

Serious Illness Care (or palliative care) is specialized medical care focused on improving quality of life for individuals living with serious illnesses, including dementia. Unlike hospice care, palliative care can begin at any stage of the disease and can be provided alongside treatments intended to manage symptoms or slow progression.

For patients with dementia, palliative care helps address many of the challenges that arise throughout the disease process, including:

  • Managing symptoms such as anxiety, agitation, depression, pain, sleep disturbances, and behavioral changes.
  • Coordinating care among multiple healthcare providers.
  • Supporting difficult conversations about future healthcare decisions and goals of care.
  • Assisting families with advance care planning.
  • Providing emotional support for patients and caregivers and connecting caregivers to resources.
  • Helping caregivers understand disease progression and what to expect as dementia advances.

Because dementia often progresses gradually over many years, serious illness care can be an invaluable resource long before hospice becomes appropriate.

10 Signs It May Be Time for Hospice Care

Hospice care focuses on comfort, dignity, and quality of life when a patient’s illness has reached an advanced stage. For individuals with dementia, recognizing the signs of decline can help families seek support before a crisis occurs.

  1. Frequent Falls and Increasing Weakness
    As dementia progresses, muscle weakness, impaired judgment, and poor balance can lead to frequent falls and injuries. Patients may become unable to walk safely without assistance.
  2. Difficulty Swallowing
    Many patients with advanced dementia develop dysphagia, or difficulty swallowing. They may cough or choke while eating, pocket food in their cheeks, or have trouble managing liquids.
  3. Significant Weight Loss
    Weight loss often occurs because eating becomes more difficult and appetite decreases. Malnutrition can contribute to further weakness and increased vulnerability to illness.
  4. Limited Communication
    Speech may become increasingly difficult to understand. Some individuals may communicate only through facial expressions, gestures, or other nonverbal cues.
  5. Loss of Bladder or Bowel Control
    Incontinence becomes common as dementia affects muscle control, mobility, and awareness of bodily functions.
  6. Increased Sleeping and Reduced Alertness
    Patients may spend much of the day sleeping and show less interest in activities, family interactions, or their surroundings.
  7. Little or No Verbal Communication
    Individuals may speak only a few words or stop speaking entirely. Understanding and responding to others may become increasingly difficult.
  8. Reduced Food and Fluid Intake
    A noticeable decline in eating and drinking often occurs as the body begins to slow down. This is a common part of the natural progression of end-stage dementia.
  9. Recurrent Infections
    Advanced dementia weakens the body’s ability to fight illness. Repeated infections such as pneumonia, urinary tract infections, or skin infections are often signs of significant decline.
  10. Changes in Breathing
    Breathing patterns may become irregular, shallow, or include periods of apnea (pauses in breathing), particularly during the final stages of life.

When Is Hospice Appropriate for Someone with Dementia?

Hospice care is appropriate when a physician determines a patient’s life expectancy may be six months or less if the disease follows its expected course.

For dementia patients, hospice eligibility often includes several of the following:

  • Dependence on others for most or all activities of daily living
  • Inability to walk independently
  • Minimal or no meaningful verbal communication
  • Significant weight loss or nutritional decline
  • Difficulty swallowing or aspiration risk
  • Recurrent infections such as pneumonia or urinary tract infections
  • Frequent hospitalizations or emergency room visits
  • Progressive decline despite medical interventions

Many families are surprised to learn their loved one qualifies for hospice. Unfortunately, dementia patients are often referred later than ideal, limiting the time they and their families and caregivers can benefit from hospice services.

Why Earlier Hospice Referrals Matter

Multiple hospitalizations can be especially difficult for individuals with dementia. Changes in the environment often increase confusion, anxiety, agitation, and emotional distress. Hospital stays may also expose patients to additional risks, including infections and further physical decline. Hospital stays may also not align with the patient’s goals to stay home or in their facility without hospitalizations or emergency department visits.

Hospice provides support wherever the patient calls home, helping manage symptoms and urgent concerns without unnecessary hospital visits whenever possible.

Many physicians are afraid and hesitant to initiate conversations about hospice. Families should feel empowered to take the lead and discuss both palliative care and hospice options with their healthcare providers and ask for an evaluation when they believe additional support may be beneficial.

What Hospice Provides for Dementia Patients and Their Families

Hospice care addresses the physical, emotional, and spiritual needs of both patients and caregivers through an interdisciplinary team approach.

Services include:

  • Expert pain and symptom management
  • Regular nursing visits and medical oversight
  • Certified nursing assistant support for personal care needs
  • Emotional support and counseling
  • Spiritual care services
  • Integrative therapies such as massage, music therapy, and aromatherapy
  • Education about disease progression and what to expect
  • Guidance with difficult care decisions
  • Medication, equipment, and supplies related to the hospice diagnosis
  • Respite care and caregiver support

Hospice care can be provided in a patient’s home, an assisted living community, a skilled nursing facility, or an inpatient hospice unit.

A Compassionate Approach to Dementia Care

Watching a loved one decline from dementia can be overwhelming and heartbreaking. Understanding the signs of advanced disease and knowing when to seek additional support can help families focus on what matters most: comfort, connection, and quality of life.

Whether your loved one is in the early stages of dementia and could benefit from palliative care or is experiencing the signs of advanced decline that may indicate hospice eligibility, you do not have to navigate this journey alone.

The right support at the right time will make a meaningful difference for both patients and the people who love them.

Questions About Palliative Care and Hospice Services?

To learn more about palliative care or hospice services for individuals living with dementia, contact Lightways Hospice and Serious Illness Care at 815.740.4104.

The Grief Experience in the Beginning

The Grief Experience in the Beginning

The Grief Experience in the Beginning

The Grief Experience in the Beginning

After learning of their loved one’s death, grievers often describe their experience in similar ways:

  • “My world stopped, while the rest of the world moved on”.
  • “I feel as though a carpet has been pulled out from under me”.
  • “I feel like I’ve lost a limb, like I’m no longer a whole person.”

This sense of disbelief and isolation is often compounded by strong feelings, insistent thoughts, difficulty concentrating, and changes in sleeping and eating patterns. Grief affects us emotionally, mentally, physically, and spiritually, often leaving grievers feeling disoriented, overwhelmed, and exhausted.

What Griever’s Need

Thus, it is not surprising that in the beginning of grief, it is often hard for a griever to identify what they need. And, when seeing someone they care about so affected, supporters often share that they feel helpless, and at a loss of what to say. Unfortunately, these two conditions can result in nothing being said about the person’s loss, and an avoidance of the griever altogether, thus increasing the griever’s sense of isolation even more.

Due to the challenges of supporting grievers, the Grief Counselors at Lightways wanted to share what they have learned from grievers about what is helpful and not helpful.

Here’s what they had to share:

Tending to our Basic needs

Many grievers describe how overwhelming grief is at first, and that during this time, they are often only able to focus on their basic needs, such as rest and comfort. Grief Counselors share the importance of self-care, which includes anything that tends to “your body, mind, and soul,” and helps you to sustain yourself during grief. Some grievers struggle with eating and sleeping, so they are encouraged to hydrate, eat small meals, and take naps to stay nourished and rested. For some grievers who have been caregivers, the Counselors also recommend that they make sure to see their health care provider if they haven’t in a while. Additionally, because grievers are often operating on limited reserves, they need to adjust their expectations of themselves. Receiving help from their supporters with day-to-day tasks and having a reduced workload can be very helpful to some grievers.

Tending to our Pain

Grief reactions can be very intense for some grievers. So much so that some grievers use the word “pain” to describe their grief. Thus, Grief Counselors work with grievers on identifying what types of things might “soothe” the pain of grief. Often, what grievers discover is that sensory experiences help soothe the pain of grief. Counselors encourage grievers to identify what sights, sounds, smells, textures, and tastes provide them comfort when they are hurting. Examples of things that can help are their loved one’s clothes or perfume, pets, nature, tea, pictures or videos or their loved one, soft blankets, and more.

The right balance of time alone, and time with others

Because of the need to attend to basic needs, some grievers find they need time alone to do so. Other grievers feel less distressed when they are around others and seek connection. This is very individual and can change throughout the grief process.

At the beginning of grief, as a griever is trying to adjust to their “new normal”, they often have a lot of tasks that they need to take care of, such as planning final arrangements or dealing with financial matters. One griever explained that the help they received from others felt disproportionate. They explained that at first, they felt bombarded by calls from others to the point that it felt overwhelming. Later on, they noticed they weren’t hearing from anyone. “It was like crickets”.

Grief Counselors suggest that grievers and their supporters try to communicate and figure out what the right balance may be for them. Christopher Ciesla, Grief Counselor at Lightways states that in counseling, he works with grievers on how to advocate for themselves to have their needs met. He shares that at times he and the griever will “develop bullet points on how to teach their support members to support them better”. This helps, he explains, the griever to “talk to their partner or support system to guide them on what is most helpful, since most people are uncertain what to do”.

A note about Reaching Out to a Griever

“How are you doing?”:

Patrice Martin, Director of Grief and Integrative Therapies, was surprised to learn from grievers that this question can be difficult to answer. What is often a person’s attempt to reach out to a griever with support, can feel to a griever like a loaded question. “Grievers will ask us, ‘How do I answer that? Tell them the truth? Pretend I am doing better than I am?” says Martin. Grievers may not feel comfortable opening up at the time (or place) when this question is asked, or they may not feel that the person is genuinely interested in the true answer.

Martin encourages those who want to check in on a griever to consider the time and place of the check-in – where you are, what the person is doing, as well as your relationship with that person. “Instead of asking, “’ How are you doing?”, you may want to ask how their day is going or simply state to them that you wanted to check in, that you have been thinking of them and would love to connect. When asking, Martin cautions, “make sure you are sincerely open to hearing their honest answer.”

Reaching out for help from others can also be challenging for grievers. Partially because they may not know what they need, but also because reaching out comes with some risks for the griever, who may be feeling vulnerable, or worried about being a burden to others, or “ruining the mood” of the other person.

Permission to grieve and permission to not be OK.

The Grief Counselors report that grievers are often grateful to learn that what they are experiencing is common and natural. They share that they sometimes get the message from others (or themselves) that they shouldn’t be feeling the way they are feeling. Grievers share that they hear comments from others like “Are you still having a hard time?” or “Don’t be sad. They would want you to be happy.”

Grief Counselors at Lightways are big advocates for there not being “shoulds” around grief. There are so many factors that can affect how someone responds to a loss, which makes each person’s grief reaction to a death unique. There are all kinds of grief reactions, both positive and negative, and they are all OK.

Support and understanding, not silver lining

One of our grief clients, who experienced both the loss of a partner and a child shared her experience:

“I didn’t expect any words would make me feel better after these losses, but I was caught off guard that there were things people would say that made me feel worse. Some of my closest family members said to me, “Are you over it yet?” and “Don’t cry anymore, he is in heaven”. I don’t hold it against them – I pray they never know what these losses feel like, and I understand that it’s hard to watch our loved ones suffer. In hindsight, just their presence would have been enough, but I didn’t know that’s what I needed or wanted. And our grief is not something to be fixed.”

One of the Grief Counselors, Katie Thiesen, likes to share one of her favorite quotes by Haruki Murakami, “Pain is inevitable. Suffering is optional.” “Suffering”, she says, “is what happens when we have to hold our pain alone”. She shares that supporters often want to “rush to fix pain, yet the only way to ‘fix’ grief would be to have their person come back to life and be healthy. So instead, we need supporters who are willing to sit in the mess, in the depths of the pain of grief with the grievers. Not to ‘fix’ it, but to be with us in it. If people do not sit in it with one another, that often adds to the pain as it creates further isolation”.

Acknowledgement of pain of grief

Instead of attempting to get someone who is grieving to “think positively”, grievers say they appreciate it when someone instead acknowledges how hard this is for them. When they are able to just sit with them in their pain and not try to fix it. This is hard for many of us to do, and can make us feel helpless, or bring up our own discomfort or pain. This is why grievers often find comfort in talking with other grievers, who can empathize with them as they have felt similar ways. One griever shared how much she liked coming to the support group, “I love coming here because I don’t have to pretend that I’m OK. I can just share how I’m truly feeling”.

Opportunities to speak about their loved one

Our client also shared with us how important it is to have the opportunity to talk about her son.

“Towards the end of year two, people checked in on me less often. My friends and family talked less about (my son). And one of my greatest fears is that people will forget him.”

When asked what has been helpful, grievers often share how touched they were when someone remembered a special day or shared a memory about their person. Grief Counselors recommend that supporters consider what days or situations might be hard for the griever they are supporting and make sure to check in on them that day.

Counselors also recommend that grievers find ways to honor their person, either privately or in a group setting. At Lightways, the Grief Support Program offers a variety of different events and activities that give grievers a chance to pay tribute to their loved ones.

The Grief Support Program

The Grief Support Program at Lightways wants to make sure that the community knows that grief support is available to them, regardless of whether their loved one received hospice services. All the grief support services, including short-term counseling, support group, workshops, and special events, are available free of charge.

If you or anyone you know is interested in learning more, you can reach out to the Grief Support Program at 815-460-3282, [email protected] or Contact Lightways.

Advance Care Planning Guide

Advance Care Planning Guide

A Complete Guide to Advance Care Planning:

How to Start the Conversation and Make Your Wishes Known

nurse holding medication and reviewing with patient

Talking about future healthcare decisions can feel uncomfortable, but avoiding the conversation can leave families overwhelmed and uncertain during some of life’s most difficult moments. Advance care planning is a thoughtful, proactive way to ensure your voice is heard, your values are honored, and your loved ones are supported when decisions matter most.

At its core, advance care planning is not just about paperwork, it is about having meaningful conversations, choosing someone you trust, and putting a plan in place that reflects what matters most to you.

What Is Advance Care Planning?

Advance care planning is the process of:

  • Reflecting on your personal values and healthcare preferences.
  • Talking with loved ones about your wishes.
  • Choosing someone to make decisions on your behalf if you cannot.
  • Completing legal documents that guide your care.

This process helps ensure that your care aligns with your goals, whether that means pursuing all available treatments or focusing on comfort and quality of life.

Why Advance Care Planning Is So Important

Without a clear plan in place:

  • Families may struggle to make decisions during emotional and stressful situations.
    Loved ones may feel unsure or even conflicted about what you would want.
  • Care may not reflect your personal values or preferences.

Advance care planning provides clarity and peace of mind. It allows your loved ones to act with confidence, knowing they are honoring your wishes, not guessing them.

How to Start the Conversation

Starting the conversation is often the hardest step, but it does not have to be perfect. The goal is simply to begin.

Choose the Right Time
Look for a calm, comfortable setting, not during a crisis. Many people find it easier to start conversations:

  • After a family gathering.
  • Following a personal health experience or a family member’s health experience.
  • When helping a loved one navigate their own care decisions.

Start Small
You do not need to cover everything at once. Begin with simple, open-ended questions:

  • “What matters most to you if you were seriously ill?”
  • “What would quality of life look like for you?”
  • “Who would you trust to make decisions for you if you couldn’t?”

These questions open the door to deeper conversations over time.

Share Your Own Wishes
Talking about your own preferences first can help others feel more comfortable sharing theirs. It sets the tone for an honest, judgment-free conversation.

Focus on Values, Not Just Treatments
Advance care planning is about more than medical procedures. It is about understanding what matters most:

  • Independence vs. comfort
  • Being at home vs. in a hospital
  • Time with family vs. time engaged in aggressive treatment.
  • The level of care you desire when a healthcare crisis happens.

These values will guide decisions when they need to be made.

Choosing a Healthcare Power of Attorney (POA)

 One of the most important steps in advance care planning is selecting a healthcare power of attorney (POA-HC), someone who can make medical decisions on your behalf if you are unable to.

What Makes a Good POA-HC?
Choose someone who:

  • Knows you well and understands your values.
  • Is willing to advocate for your wishes even when other family members may not agree.
  • Can stay calm under pressure.
  • Is comfortable communicating with medical professionals.

This person does not need to have medical knowledge, but they do need to be willing to speak on your behalf and honor your preferences.

Have the Conversation

Once you choose a POA-HC, talk with them openly about your wishes. Share what matters most to you and discuss specific scenarios if possible. The more they understand your values, the more confident they will feel making decisions.

Healthcare Power of Attorney
This names the person who will make medical decisions for you if you cannot, as well as give direction on your wishes for the disposition of your remains after death.

Financial Power of Attorney
This document allows a trusted individual to handle financial matters on your behalf if needed, such as paying routine bills. It may also be helpful to add your designated Power of Attorney (POA) to your bank accounts to simplify financial management. In addition, it is common to name a secondary POA to step in if the primary person is unable to fulfill these responsibilities.

What to Do After Completing Documents

  • Share copies with your POA and family members.
  • Provide copies to your healthcare providers.
  • Keep documents in an accessible place.
  • Review and update them as needed over time.

You may not need an attorney to complete these forms, but legal guidance can be helpful in more complex situations.

Making It an Ongoing Process

Advance care planning is not a one-time event. Your preferences may change as your health, life circumstances, or perspectives evolve.

Be sure to:

  • Revisit conversations regularly.
  • Update documents when needed, especially after a major life event such as a death or divorce.
  • Keep communication open with loved ones.

Even small updates can make a big difference in ensuring your wishes are honored.

A Gift to Your Loved Ones

Having these conversations may feel difficult, but they are truly a gift. Advance care planning:

  • Reduces stress and uncertainty for families, it can eliminate the question of what would they have wanted?
  • Strengthens communication and understanding.
  • Ensures your voice is heard—even if you cannot speak.
  • Prevents your family from having regrets after your death, which could complicate their grief process.

Taking the First Step

You do not need to have all the answers today. You do not need to complete everything at once. The most important step is simply to begin.

Start the conversation. Share what matters. Choose someone you trust.
Because when the time comes, your loved ones will be grateful they did not have to guess, they will know. It is recommended that you reach out to a financial advisor and tax attorney that specializes in advanced care planning for assistance and more information.

Additional Resources:
The Conversation Project – Advance Care Planning
Advance Directives– State of Illinois forms, laws and rules, resources
POLST Guidance for IndividualsState of Illinois