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What’s going to happen next? Grappling With the Unknowns of Illness, Death and Dying

Some things that are comforting: control, knowledge, predictability and routine.

Some things that are uncomfortable: lack of control, the unknown, unpredictability and chaos.

When faced with a serious illness, having the answer to one simple question would make everything immeasurably easier:

“What’s going to happen next?”

You will find that despite hundreds or even thousands of Google searches and visits to the doctor, a definitive map of the future remains elusive (as does your peace of mind).

The uncomfortable truth is that there is no way to know exactly how an illness will take its course. Each person is different, and each illness is unique.

In a time of stress, sadness and worry, it’s incredibly difficult to accept that there’s no way to know what or when things will change.
So if control and a “roadmap” of the future aren’t options, what can you do to find your equilibrium?

  1. Educate yourself.

Although outcomes and timelines vary widely from patient to patient, learning about your or your loved one’s illness can give you some idea of what to expect. However, be sure that  your information is reliable. Talk to your doctor and nurses directly, as they are well-versed in not only the physiological aspects of the illness but also your specific case. Don’t expect them to tell you what will happen, but rather, what can or may happen.

  1. Live in the moment.

Rather than borrowing trouble and obsessing about how much time is left, you may find it comforting to shift your thoughts to the present. Quality of time is something over which you do have some control. Small, simple moments of love and togetherness are precious.

  1. Focus on Comfort.

A bowl of soup, a warm blanket, the sharing of memories, the smell of flowers, laughter and freedom from pain are some of the simple joys that life has to offer. Every small moment of comfort and pleasure is a gift, and actively cultivating those moments can improve quality of life immeasurably for you or your loved one.

  1. Accept the unknowns.

This is much easier said than done, but the most freeing way to live with illness is to accept that there really is no way of predicting what will happen. Be optimistic about what the future may hold, but embrace your control to create moments in the present. The less worry you borrow, the more room you make for happiness and love in your life.

  1. Speak with a professional.

Hospice and Palliative Care of Greensboro (HPCG) has doctors, nurses, chaplains and social workers who are well-versed in navigating patient and family care. If you are feeling overwhelmed, confused or uncertain about your or your loved one’s illness, call HPCG at 336.621.2500 to speak with someone who can help.

When Your Child Is Having a Meltdown: Tips for Keeping Your Cool

 

After the loss of a loved one, your child may become upset at circumstances that would normally feel minor. Although these meltdowns can feel distressing to parents, they often function as a powerful emotional release that can be beneficial to children.

We often encourage kids to talk about their grief feelings. However, some young children can’t verbally link feelings to their loss. Instead, they “melt down” in anger or sadness triggered by an unrelated situation.

These behaviors are an indication of nervous system dysregulation. Your child is expressing in an outward way what is happening internally at that moment. When children are dysregulated, they aren’t able to logically discuss the situation or problem-solve.

The following steps summarize the most effective way to respond to meltdowns and guide your child toward self-regulation. The first 3-4 steps may be enough for a preschooler, as young children process more with their bodies than verbally.

  1. Provide a calm and loving presence.

If possible, pause what you’re doing and move to be close to your child. Offer your undivided attention. Try to be genuinely curious about what’s happening, rather than focusing on immediately stopping the behavior.

  1. Name what you see.

Observe out loud what you notice about your child’s behavior and body language. “Jenny, you seem angry. I see you slamming your book on the table.”

  1. Validate the child’s experience.

Tell your child, “It makes sense to be mad sometimes. A lot of things in your life have been changing.”

  1. Offer sensory soothing to regulate the nervous system.

One way to help kids return to a regulated state is to offer a soothing sensory activity, such as:

  • Getting a big hug.
  • Chewing a crunchy food, like pretzels.
  • Squeezing and pounding Play-Doh.
  • Taking five slow breaths.

 

  1. Problem-solve together.

Instead of asking a child “why” they are behaving differently, try focusing on “how” to make it better or “what” could be different next time. You could offer to create a sensory station where your child can go when experiencing strong emotions.

A Meltdown Is Not an Emergency.

Although it can be uncomfortable or embarrassing when your child is very upset, the situation is rarely as urgent as it feels. When you react calmly, acknowledge needs and help with problem-solving, your child will be able to regain control of their behavior and reconnect with you.

Consult with a Grief Counselor.

If you are coping with changes in your grieving child’s behavior, you can speak with a licensed Kids Path counselor at no charge. Kids Path counselors offer free phone consultations to any adult in the community, including parents/caregivers. Simply call 336.544.5437 and ask to speak with a counselor.

Holiday Travel and Serious Illness

When a loved one is sick, figuring out how to coordinate holiday gatherings can be a real challenge, particularly if you have family that lives far away.

Before deciding what to do, take the following concerns into consideration.

  1. Is your loved one well enough to travel?

Plane and car rides are exhausting even for people who are in good physical health. If you’re unsure about whether or not your loved one will be comfortable during travel, you might consider asking their doctor’s opinion. Perhaps certain travel accommodations can be made to make the journey easier, or perhaps travelling isn’t a good idea at all.

  1. If traveling isn’t an option, can your loved one handle a lot of visitors?

If your loved one isn’t up for a plane or car ride this year, you might be considering bringing the party to them. However, depending on how ill they are, your loved one might not have the energy to entertain people in their home. For some, interacting with large groups of people is exhausting.

  1. Will your loved one be able to enjoy the festivities?

Once again, depending on how sick your loved one is, there is a possibility that they won’t be able or willing to participate in the usual holiday activities. A large meal, opening gifts or even staying awake for a few hours a time might not be possibilities. Ask yourself- are they physically able to enjoy this occasion? Furthermore, is their physical inability to participate likely to cause them to feel depressed, frustrated, confused or even angry?

If you don’t think that traveling or having a large group of people over is a good idea, consider the following alternatives for holiday gatherings.

  1. Gather somewhere separate, but nearby.

Consider hosting the holiday festivities somewhere other than your loved one’s home. If no one lives near your loved one, you could rent a house for a few days (websites like Airbnb are great for renting private houses). Then, you can have small amounts of people visit your loved one in shifts (rather than all at once) so they aren’t overwhelmed by visitors.

  1. Include them in the festivities that you know they can handle.

If you know the physical state of your loved one well enough, you can tailor small holiday activities to them so that they feel included. You might bring over a gift or two for your loved one to open, or make them a small holiday meal.

  1. Don’t be afraid to change traditions.

Even if your family has had the same holiday tradition for 20 years, it’s OK to change things up when you have a seriously ill family member. Don’t feel obligated to stick to tradition just for tradition’s sake. When making plans, consider what is best for the emotional and physical well-being of you, your loved one and the rest of the family.

Children, Grief and the Holidays

The holidays are a difficult time for anyone who has experienced a loss. Children, who grow up thinking of the holidays as a magical and happy time, may have particular difficulty reconciling the grief of a recent loss with the joy of the holiday season.

Depending on the child’s relationship with their loved one who has died, this year might mean a change in holiday traditions or special rituals. Maybe Grandma always let them help make the pumpkin pie, or their aunt read them The Night before Christmas.

How you support a child through the holidays after a loss depends on your relationship. Below are some suggestions for how to comfort grieving children during the holidays.

In the classroom

If you know that a student has recently experienced the death of a loved one, make time to speak with them about their feelings about the upcoming holiday season. In addition, speaking with the child’s parents or guardians to find out what might be upsetting for them during holiday activities empowers you to make accommodations if necessary.

For example, if you were planning to have your class draw a picture of their favorite holiday tradition, but you know that this will be painful for the grieving child, you could have the class draw a picture of their favorite winter activity instead. This kind of simple, sensitive adjustment can help a grieving child better navigate a difficult time.

At home

Make time to sit down as a family and talk through your plans for the holiday season. Make sure that your child’s feelings are heard and that you take their wishes into consideration when making decisions.  Remember that it’s OK to change or leave out a tradition to make this difficult time less emotionally taxing. If certain foods or rituals are too painful for your family, consider skipping them this year. You can always choose to revisit them in the future.

It can also be helpful to create a new tradition to honor the person who has died. For example, your family might hang a stocking for that person and fill it with special messages and happy memories, or light a candle at a shared meal to represent the legacy of that person.

Talk with a Kids Path Counselor

Children’s counselors at Kids Path are available to consult with anyone in the community about supporting a grieving child during the holidays. You can talk with a licensed counselor by phone during weekday business hours by calling Kids Path at 336.544.5437 and asking to speak with a counselor.

This Veteran’s Day

Jose Narosky is quoted as saying, “In war, there are no unwounded soldiers.”

Many veterans we care for at Hospice and Palliative Care of Greensboro (HPCG) come to us with complex feelings about their military experience. No longer battling for their country, they instead are battling serious illness. It is our role as trained hospice workers to guide them through this journey respectfully and compassionately, while recognizing the individual medical and psychosocial needs that can arise at the end of life.

According to the National Hospice and Palliative Care Organization (NHPCO), more than 1,800 American veterans die every day. Last year at HPCG, 333 of our patients were veterans, representing 20.5 percent of our total patients served.

If, as Narosky says, “there are no unwounded soldiers,” then we at HPCG believe it is imperative to open our hearts to the many veterans who wish to share their stories at the end of life. These are stories often filled with mixed emotions: sacrifice, pride, pain, suffering, grief and loss.

As a national We Honor Veteran’s partner, our hospice teams are trained to understand that many veterans never wish to appear weak or admit pain, even in the midst of great suffering. We pair veteran volunteers with our veteran patients, because they often know best how to support a fellow service member in the way they desire.

This Veterans Day, we join with our community to honor the men and women who served us. This day and every day, I encourage each of us—whether we are trained professionals or not—to open our hearts in understanding to the stories of veterans among us.

And if you are a veteran who is interested in becoming one of our Vet-to-Vet volunteers, please call 336.621.2500.

 

 

 

Kristen Yntema
President and CEO of Hospice and Palliative Care of Greensboro

 

The Rev. Lou Wallace Receives 2018 Peter Keese Leadership Award

The Rev. Lou Wallace

(GREENSBORO, NORTH CAROLINA)—The Reverend Lou Wallace, a well-known grief counselor, received the 2018 Peter Keese Leadership Award on September 5, 2018. Wallace is credited with establishing North Carolina’s first community-based hospice bereavement program at Hospice and Palliative Care of Greensboro (HPCG).

Presented by The Carolinas Center (TCC), this annual award recognizes a North Carolina leader in end-of-life care.

“Lou is a true pioneer in the field of bereavement counseling,” said Marcia Vanard, HPCG’s vice president of counseling and education. “She believed that hospice bereavement services should be available to everyone, not just those families served by hospice, and that has led to tremendous healing in our community.”

During a career that spanned more than 29 years, Wallace served HPCG in a variety of roles, including chaplain, bereavement counselor and director of its grief counseling center. In 1989, she garnered attention when she opened the grief counseling center to anyone who had experienced the death of a loved one. She was also instrumental in establishing HPCG’s Kids Path program, which supports children coping with serious illness and loss.

While no longer working full-time, Wallace continues to facilitate HPCG’s “Loss of Spouse” support groups throughout the year.

Wallace is no stranger to personal loss, having experienced the deaths of her youngest son and only daughter. While she seldom disclosed her own story, Wallace reflected that her own losses enriched her ability to connect with clients in the depths of their pain. Because of this connection, she was often assigned the most difficult or traumatic losses.

One such client was Rebecca Schlosser, who was counseled by Wallace after her 25-year-old son, David, unexpectedly died following a lengthy struggle with bipolar disorder.

“Lou Wallace became my guide, listening and helping me understand that my responses to David’s death were normal. At a time when it felt like my reason for ‘being’ was over, Lou helped me find my footing,” she said.

Wallace reflected: “Through my years as a grief counselor and chaplain, I have had the privilege of serving people as they find new meaning, constructing new lives. People say ‘I admire you for doing that work. It must be depressing.’ It’s not! It’s affirming, loving care.”

About HPCG

HPCG is a nonprofit organization that serves an average of 350 patients per day in Guilford County and surrounding areas. It is situated on a 14.75 acre campus at 2500 Summit Avenue. Since 1980, HPCG has been providing physical, emotional and spiritual support for children and adults faced with a life-limiting illness, as well as their caregivers and families. For more information, call 336.621.2500 or visit www.hospicegso.org.

 

About the Peter Keese Leadership Award

The award is presented annually by The Carolinas Center (TCC), which is a trade organization promoting quality end-of-life care and representing an extensive number of hospice and palliative care providers in North and South Carolina.

The Peter Keese Leadership Award is presented to a North Carolina individual who has:

  • Been affiliated with a North Carolina hospice or palliative care provider or end-of-life care coalition that is a member of TCC.
  • Devoted significant time to promoting hospice care.
  • Provided vision and innovation in an approach to end-of-life care.
  • Involved in fostering relationships with strategic partners.
  • Involved in hospice care throughout North Carolina.

 

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Click here to download press release.

Click here to download high-resolution head shot. 

Hospice Care: Dealing with Family Conflict

When a loved one has a serious illness, it is natural for family to gather to spend time together and provide support.

Family dynamics are complex and unique. However, the potential for conflict multiplies under the stress of a dying family member. Below is some advice for sample situations when conflict between families is common.

Entering Hospice Care

When a person is terminally ill, family members often disagree about the best medical course of action. Some family members might be against hospice care and see it as “giving up.” This belief is often compounded by the grief of coming to terms with the fact that their loved one is dying.

If a family member is against your loved one entering hospice care, explain to them why the decision is being made. Regardless of the circumstances, the decision to enter hospice care almost always comes down to quality of life. Explain to your family member that hospice will help your loved one be more comfortable by providing relief from pain and discomfort.

If your family member is still upset, it may be helpful to have them meet with someone from your loved one’s hospice team. Oftentimes, anger and frustration arise from a lack of understanding. There are many myths surrounding hospice and palliative care, and hospice professionals are well-equipped to both dispel those myths and explain the benefits of hospice care.

Caring for Your Loved One

Regardless of whether your loved one is unable to make their own health care decisions, disagreements about the right types of comfort care are common between family members. For example, whether to continue providing food and what types of pain medications to use (if any) are two common areas of conflict.

These decisions rest with either the patient or, if they are not able to make their own health care decisions, their designated health care power of attorney. Still, others are likely to have an opinion regarding the best course of action. At times, the primary decision-maker may want input from others, and at other times, he or she may need to set a boundary, by saying ‘This is not open for discussion.”

If a family member is contentious about a particular decision, it is best to speak with them privately. Calmly explain that while you understand their position, the decision is final. Explain that everyone wants what’s best for your loved one, and that this decision has been determined to be the best course of action. If you feel uncomfortable confronting your family member, or if they have questions that you can’t answer, reach out to your hospice social worker, chaplain, nurse or doctor.

If you have questions about hospice care, or if you or your loved one is struggling with a serious illness, call the HPCG Referral Center at 336.621.7575

Grief at School: How to Support a Grieving Child in the Classroom

By late October, most elementary school children will have settled into the new school year. If a particular child seems to have difficulty acclimating to classroom routines, an often overlooked possibility is the impact of grief due to death or serious illness. At times, school staff may not even know what has happened at home unless the student volunteers this information.

As a teacher or school counselor, you may feel unsure about how to respond if you have not had experience with students coping with bereavement or illness. Following are some guidelines for supporting a child who has recently experienced loss.

Offer chances to take a break.

A grieving student may feel overwhelmed or anxious in the classroom. When you suspect a child is having difficulty concentrating due to a loss, you can find a private moment to speak with them and come up with a plan. Give permission to step out of the classroom for a break, whether that’s to go to the restroom, spend a few quiet minutes in the media center or visit the school counselor.

Provide a listening ear.

Other people in the child’s life may make misguided statements about loss that invalidate grief feelings, such as “You need to be strong for your family.” In contrast, you can provide nonjudgmental support by asking open-ended questions and listening more than talking. Some helpful things to say to a grieving student include:

  • “I heard that a special person in your life has died (or is very sick). It’s okay to talk to me about it whenever you’re having a hard day.”
  • “Some kids might be feeling really sad or angry in this situation. What has it been like for you?”
  • “Is there anything you’re worried about right now?”

Don’t be overly concerned with getting the words exactly right. The most important thing is a calm and caring tone that shows the student you care.

Keep in mind that some kids may not want to talk about the loss at that moment—and some may never want to talk about it. Follow the child’s lead when making the offer of a listening ear, and let the student know that choosing not to talk is also valid. Your offer of support will feel meaningful even to students who opt not to share details with you.

Understand that children demonstrate grief in varied ways.

Children don’t always express grief feelings through crying or sadness. Elementary age students may display other changes in behavior or mood, such as irritability, angry outbursts, distraction, anxiety or unusual sensitivity. Kids may also have difficulty articulating their emotions.

Ask a Children’s Counselor.

The licensed counselors at Kids Path offer free phone consultations to any adult in the community, including school personnel and parents or caregivers. To ask about ways to support your student in coping with death or serious illness, call 336.544.5437 and ask to speak with a Kids Path counselor.

Caregiving and Back Injuries: Prevention is Key

In a job where being able to move freely is essential, back injuries can be career-ending. By definition, caregiving requires assisting others in the activities of daily living when they can no longer be self-sufficient. For patients who have limited mobility, caregivers can be required to move 50 or more pounds of body weight multiple times per day.

For trained caregiving professionals, proper lifting techniques are often common knowledge. However, if you are a first-time caregiver looking after a relative or spouse, you may be unaware of methods to help you properly assist, lift and move your loved one.

Back injuries are the most common physical problem seen in caregivers. Unfortunately, even one back injury can render a caregiver permanently unable to provide assistance.

If you are caregiving for a loved one, preventing back injuries should be a top priority.

Below are some techniques to help you avoid injuring your back when caregiving.

  1. Exercise

Strengthening your muscles will take load and strain off of your back. Consider starting a simple strength training and stretching routine. Focus on building strength in your abdominal muscles and glutes. For a sample back injury prevention routine, click here: https://www.mayoclinic.org/healthy-lifestyle/adult-health/multimedia/back-pain/sls-20076265

  1. Use proper lifting techniques

Some general guidelines to follow when you lift or move a person include:

  • Keep your head and neck in proper alignment with your spine.
  • Maintain the natural curve of your spine; do not bend at your waist.
  • Avoid twisting your body when carrying a person.
  • Always keep the person who is being moved close to your body.
  • Keep your feet shoulder-width apart to maintain your balance.
  • Use the muscles in your legs to lift and/or pull.

For more information on lifting techniques for home caregivers, click here: https://orthoinfo.aaos.org/en/staying-healthy/lifting-techniques-for-home-caregivers

  1. Get help when needed

If lifting your loved one is too difficult due to uncooperativeness, heaviness or awkward positioning, seek help. If your loved one is currently receiving palliative or hospice care, ask your caregiving team for advice and assistance.

If you find that you are often unable to lift your loved one independently, consider purchasing a patient lift. Medicare will often pay for patient lifts if they are deemed medically necessary and prescribed by a doctor. Learn more about Medicare coverage for patient lifts here: https://medicare.com/coverage/does-medicare-cover-patient-lifts/

 

If your loved one is struggling with a serious illness, Hospice and Palliative of Greensboro can help. Call 336.621.7575 for more information. 

Helping Kids Talk About “Big Feelings”

 

 

 

 

 

 

 

Losing a loved one or coping with serious illness can be stressful for children, particularly those too young to effectively express emotions using words. Children may feel confused about experiencing multiple emotions at once, such as sadness and anger, or may have difficulty understanding that a bodily sensation can be an indicator of an emotion (such as restlessness caused by anxiety).

Most children also have limited experience with loss or tragic events, which further complicates their ability to process emotions. “Big feelings” are the powerful, confusing or overwhelming emotions that accompany these upsetting times.

Following are some simple, yet effective approaches to encourage your child to communicate about difficult emotions:

  • Initiate the conversation at a quiet, private time. Your child may be more likely to talk about difficult feelings if you approach them in private at a more relaxed time when you can talk one on one, such as at bedtime or when you are in the car together.
  • Model openness and vulnerability by speaking briefly about your own feelings. For example, “I noticed that ever since Grandma has been sick, I have been feeling sad and upset sometimes, and talking about it has helped me feel better. I wonder if you have been having big feelings, too.”
  • Say what you’re seeing, then check in. “It seems like you aren’t playing as much, and you don’t feel like eating dinner sometimes. Does it seem that way to you, too?”
  • Practice being fully present with your child. Begin by telling your child that you will listen to them without interrupting. Follow through by providing your full attention, showing your child with your eyes and body language that you are hearing them.
  • Let your child know that you are available to help, but without focusing on “fixing” the problem. We all have big feelings sometimes, especially in difficult situations related to loss or illness. Sometimes children respond positively if you offer to brainstorm together about ways to make the difficult situation feel a little easier. Other times, you may find that your child simply wants to be together and have their emotions acknowledged.

Some children may not want to open up verbally, and that’s okay; some children are more likely to demonstrate their emotions through behavior, expressive arts or other nonverbal ways to communicate.

Call Kids Path for a free phone consultation.

The licensed counselors at Kids Path are available by phone during business hours to talk with parents, caregivers, teachers or anyone in the community about how to best support a grieving child through loss or illness. Simply call 336. 544.5437 and ask to speak with a counselor.