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Caregiver Stress Awareness in Hospice Care

By: Joelle Jean, FNP

Caring for a loved one who is terminally ill and on hospice is emotionally and physically taxing. In 2015, an estimated 39.8 million caregivers provided unpaid care to an adult with a disability or illness. The estimated value of the service supplied by caregivers is up to $470 billion since 2013.

Caregivers may deny help from others, perhaps out of guilt or obligation. However, 1 out of 6 caregivers report not being asked what they need to care for themselves. Caregivers can work up to 8.3 hours per day or 66 hours per week during their loved ones’ last days of life. Often, this is in addition to working a full-time job and caring for their own immediate family.

Caregivers are at risk for depression, severe fatigue, or burnout, or even health issues such as hypertension, stroke, obesity, or weight loss due to stress.

What is a caregiver?

A caregiver, also known as an informal caregiver, is an unpaid individual or group of individuals who provide care to a loved one. Caregivers can be a spouse, family members, partner, friend, neighbor, or combination of these individuals.

A caregiver assists their loved ones with activities of daily living which include:

A caregiver can also play a significant role in coordinating care for their loved ones. Many are appointed power of attorney or the primary decision maker for their loved ones, managing finances, property, and most suitable medical care for the individual.    

What causes caregiver stress or burnout?

There is no clear definition of caregiver stress. The Merriam-Webster dictionary defines stress as “a physical, chemical, or emotional factor that causes bodily or mental tension and may be a factor in disease causation.” Burnout can be a response to stress, defined as extreme emotional exhaustion. According to stress.org, stages of burnout are:

  1. Enthusiasm
  2. Stagnation
  3. Frustration
  4. Apathy or loss of interest

A caregiver with stress or burnout exhibits signs of feeling overloaded, overwhelmed, emotionally drained, tiredness, detachment from the person they are caring for, and a reduced sense of accomplishment.

Who is most affected by caregiver stress?

Caregiver stress affects the person or people directly caring for their loved one. Stress can also affect caregivers in different ways. For example, one caregiver may find specific tasks stressful or overwhelming while another caregiver may find the task relaxing and rewarding.

What are the signs and symptoms of caregiver stress?

Often, caregivers are not aware of their stress or feeling of burnout. Signs and symptoms of caregiver stress can be subtle or obvious. It is important to identify caregiver stress so it can be eased.


Anxiety is a stress response, activating the fight or flight response that happens chemically in the brain. Physically, anxiety can be described as:


Caregivers suffering from stress may not realize they are fatigued. Fatigue is the body’s response to burnout and can be physical, emotional, or psychological.

Weight changes

Stress can cause weight changes and affect eating patterns. Weight change can occur when dealing with caregiver stress. Rapid weight gain or unexplained weight loss is a warning sign of caregiver stress and should be addressed appropriately.


Caregivers may become easily annoyed or short-tempered with loved ones, family members, or friends. Feeling irritable may be a warning sign of caregiver stress.

Feelings of being overwhelmed

Feeling overwhelmed or anxious is normal. Caregivers may become overwhelmed with the amount of care needed to provide to their loved ones. Trouble concentrating, changes in sleep patterns, and changes in eating habits may occur.


Losing interest in activities can be a sign of depression due to the demanding responsibilities of caregiving. Signs of depression include:

Potential health risks as a result of caregiver stress

Chronic stress (or stress lasting for more than six weeks) can have lasting health problems. Caregivers exhibiting signs and symptoms of stress and burnout have a higher chance of developing health risks.

High blood pressure

Caregivers can suffer from high blood pressure due to the stress of caring for a loved one in hospice. If caregivers have already been diagnosed with high blood pressure, stress can make the disease worse. Uncontrolled high blood pressure puts caregivers at higher risk for:

Weakened immune system

The immune system is in place to protect the body from illness and disease. Stress can cause a weakened immune system. With a weakened immune system, caregivers can become sick or develop chronic illnesses such as:

Short term memory loss

Studies have shown that a symptom of chronic stress is the shrinking of the brain. Shrinking of the brain causes short-term memory loss. Short term memory loss affects learning, judgement, and memory process. 

Headaches and body pains

Stress can cause headaches and body pains. On a hormonal level, the increase of cortisol causes headaches even at rest. The physical nature of caring for a loved one on hospice- lifting, standing, walking, and rotating- can cause severe body pain or injury. 

How to relieve or prevent caregiver stress and burnout

Self-care is imperative for caregivers caring for their loved ones in hospice. Self-care means caring for yourself, so you can improve your health to care for others.

Exercise regularly

Finding the time and the energy to exercise might sound difficult. However, even carving out 30 minutes a day has positive effects on your health. Exercising whether it is running, walking, swimming, or doing yoga will lower blood pressure, increase energy, and improve mood.

Asking and accepting help from others

Accepting help can be difficult for some caregivers. It is important to ask and accept help so that you are available for your loved one mentally and physically.

Under most insurances and Medicare, respite care is available to relieve the burden of caregiver stress. Respite care will give short term caregiver relief to those who are in need.

Eat and sleep well

Eating and sleeping well are fundamental in protecting your physical and mental health. A well-balanced meal of fruits, vegetables, and plant-based foods is important for physical and mental well-being. Adding vitamins such as a multivitamin, vitamin D, or vitamin B-12 can also help improve your mood and energy.

Having a good night’s sleep has many health benefits. Feeling well-rested and energized will only benefit you, as the caregiver, and your loved one. Improved memory, mood, and overall well-being are all benefits of quality sleep.

Seek out support groups

Support groups add immense value to caregivers who are caring for loved ones in hospice. Joining support groups reassures caregivers that they aren’t alone. Support groups:

Maintain personal relationships

Maintaining personal relationships is as important as joining support groups. Meeting up with friends or family members allows you to relax. It also allows you to take time for yourself and time away from your loved one. 

Awareness of caregivers’ stress and burnout must be addressed and acknowledged for caregivers to feel supported and recognized for their challenging work. The hospice team and its services are a fundamental part of bringing this awareness to the forefront.

Honoring Hospice Volunteers during National Volunteers Appreciaton Week

April 18th – 24th, 2021

Hospice Crafting Activities

Our volunteers help our patients be more comfortable by making a variety of items. Each patient has a supply of items ready for them in addition to any specific requests. These items include adult clothing protectors, neck pillows, hand pillows, foley catheter covers, wheelchair bags, twiddlemuffs, fidget aprons, blankets and shawls.

Over the past year, our volunteers made face masks a priority, creating hundreds of cloth masks to provide patients, families, and staff. In addition, Grane Hospice created the felt hearts project for patients and their caregivers; each patient and caregiver were given a felt heart as a memento to keep those in mind who were not able to be together. 

Not only do we have volunteers who make things so our patients can be more comfortable, we also have volunteers who make things so they know they are loved and kept in their thoughts. As part of the Angel Hugs program, we have a group who make cards for every holiday, and in the last year, make cards, holiday crafts, and pictures to hang on patients’ walls.

Want to join our volunteer team? Visit our Volunteers page for more information and how to apply.

Let Grane Become a Part of Your Family

Our patients and their families are at the center of our focus at Grane Hospice, and our staff work tirelessly to provide the best care possible for all. We have staff available 24/7 who make it their mission to ensure our patients have a comfortable and peaceful end-of-life journey.
By providing compassionate care for our patients, as well as keeping regular communication and providing support for their families, our staff often become a part of the family to many.

“The families that I have been blessed to have in my life, and I in theirs, are honestly amazing! I have family members who I no longer see that keep in contact all the time! My children grew to love them, and they also love my children. I have one patient who I would always bring pastries and ‘ice cream sundaes’, which were her favorite! We would sit and talk all morning. They really become part of your own family, and they feel so comfortable and at ease when I’m around. That feeling is amazing and, honestly, is the greatest reward of working in hospice care!”

“Grane Hospice was a godsend when we needed it. They were always there for our mother when we could not be, and she was happy to see them. (The staff) spent their time and took good care of her during what was the most difficult time for us. We cannot thank them enough and have nothing but good things to say about the staff that took care of our mom. We would recommend Grane to anyone that is in need. They were wonderful!”

“I have a family whose mother we had on service about two years ago now, and they invite me over to their home on Christmas Eve.”

“Grane Hospice was so loving, compassionate, and professional in every way possible to my mom at her greatest times of need. Not only were (the staff) there for my mom, but also for our family. They truly went above and beyond in every way! We were so blessed and had such peace of mind to have them at the beginning through the end, with the passing of our beautiful mother. Thank you from the bottom of our hearts!"

“As bereavement counselors we are fortunate to be a part of an amazing team of nurses, aides, social workers, chaplains and volunteers who go above and beyond on a daily basis. Being the last “face” of hospice we are entrusted to carry on the mission of providing premium comfort care to our bereaved families. To achieve this we understand the importance of forming a special bond of trust with each individual.

One of many examples is that of a newly bereaved family member who told me that she wasn’t sure that being “psychoanalyzed” would really help with her grief. Sensing her apprehension, I asked her if it would be ok if I just walked beside her through her grief journey. She later shared with me that she wasn’t quite sure what I had meant at the time but it sounded non-threatening and since everyone else she had met on the hospice team had treated her and her father “like family” she decided to give it a try. A few months into our meetings she shared with me that she was coming to understand what I had meant by walking with her. To her it meant that I had accepted her unconditionally, without judgment, and that it was safe to be angry, to cry and to express any feelings that she was experiencing however crazy they seemed to be. She once told me that she was amazed that I cared enough to keep coming back. She appreciated me understanding that she needed to hear a little about my life, too, as she had no family left pulled and her few friends had away, having long grown weary of hearing about her grief. Something as simple as hearing about how my chickens got loose one morning or what I was planning to make for dinner seemed to give her a brief escape from her grief, and gave her a feeling of connection. She also shared with me that she was grateful that she never had to worry if she was wearing frayed clothing or that the dishes weren’t done, or that there were cat hairs on the chair I sat in when I came to her house. Countless times she has said to me “I don’t think I could have made it through this without you” and I would smile and remind her that she did all of the hard work. Yes, I also used quite a few counseling techniques to help her through some of her darkest days and to equip her with resources once it was time for me to step away, but without the connection I most likely would not have had the opportunity to walk beside her.”

These are only a few examples of how incredible bonds have formed when Grane Hospice team cares for its families.

We thank you for entrusting us with your loved one’s care.

Let Grane become a part of your family.

If you have a loved one that you feel may be hospice eligible, please give us a call.

Each year is represented by an animal sign in the Chinese Zodiac, which is based on the moon and has a 12 year cycle. There is also a cycle of five elements- wood, fire, earth, metal, and water. Together, this creates a 60 year cycle. This means 2021 – the year of the Metal Ox – has not happened for 60 years!

The ox is a valued animal in Chinese culture because of its role in agriculture. In the Chinese Zodiac, the ox is associated with hard work and serenity, and people who were born in the year of the ox are said to be hardworking, honest, diligent, and dependable.

With a strong sense of responsibility, those born in the year of the ox are perfect for professional and stressful jobs, making good doctors, lawyers, teachers, and businessmen.

Some famous people born in the year of the ox are:

§  Barack Obama – August 4, 1961 – Metal Ox

§  Vincent Van Gogh – March 30, 1853 – Water Ox

§  Walt Disney – December 5, 1901 – Gold Ox

§  Margaret Thatcher – October 13, 1925 – Wood Ox

Want to know which Chinese New Year animal you are? Here
is a fun guide to help you figure it out. 

If you have questions about hospice care services and when is the right time for hospice, please contact a Grane Hospice location near you:

Central PA

National Have Fun at Work Day - January 28th

We spend the majority of our day at work (or for some these days, your work-from-home environment) so why shouldn’t we have fun while doing it?!

January 28th is National Have Fun at Work Day! This holiday is an opportunity for employees to blow off some steam and remember that just because it is your job, doesn’t meant it has to feel like work.

We can celebrate with activities such as having lunch with a co-worker or playing music in our office while we work.

So, get to work- but don’t forget…

"In every job that must be done, there is an element of FUN!"

If you have questions about hospice care services and when is the right time for hospice, please contact a Grane Hospice location near you:

Central PA

January is Cervical Cancer Awareness Month


Source: CDC Cervical Cancer Awareness

Cervical cancer affects millions of women across the globe each year.

Cervical cancer starts in the cells lining the cervix – the lowest part of the uterus. Cancer starts when the cells in the body begin to grow out of control and can rapidly spread to other parts of the body.

Most cervical cancers begin in the cells in the transformation zone – the place where two cell types (glandular and squamous) meet. The exact location of the transformation zone changes as you get older and if you give birth. Cells that meet in the transformation zone do not suddenly change into cancer, but instead gradually develop abnormal changes that are called pre-cancerous. Although cervical cancers start from cells with pre-cancerous changes, only some women with pre-cancers of the cervix will develop cancer. For most women, pre-cancerous cells will go away without any treatment.

Detection and Prevention is the First Step

The best way to prevent cervical cancer is through regular pap tests, HPV tests, or both. These tests should be started early, as soon as age 21.

For more information about cervical cancer and prevention visit the American Cancer Society website or the CDC website.


If you or a loved one have been diagnosed, you can find resources and support on the Cancer Support Community website.

If you have questions about hospice care services and when is the right time for hospice, please contact a Grane Hospice location near you:

Central PA

"I can live for months on a good compliment."

Never underestimate the power of a compliment. Sometimes a kind word is all someone needs to make a tough day better.


In fact, a 2012 Forbes study concluded that a compliment serves as a social reward that activates the same part of the brain as when a person is rewarded cash.


In the study, participants were asked to perform a specific finger pattern on a keyboard as fast as they could. The participants were separated into three groups- one in which participants were complimented individually by an evaluator; another in which individuals watched another participant receive a compliment; and a third in which individuals evaluated their own performance on a graph. The next day, those in the group who received direct compliments from an evaluator performed significantly better than those from the other groups.

This just goes to show that compliments not only make people feel better, but they also help people to do better. So on January 24, let’s all celebrate National Compliment Day and pay someone a compliment. It could make their day!

If you have questions about hospice care services and when is the right time for hospice, please contact a Grane Hospice location near you:

Central PA

Celebrate Respiratory Care Week - October 25th-31st

This week (October 25-31) is National Respiratory Care Week – a time to celebrate respiratory therapists and the vital role they play in patient health.

Respiratory therapy is described as the assessment and treatment of patients with dysfunction of the cardiopulmonary system and may include treating diseases, infections, or viruses such as lung cancer, asthma, bronchitis, and pneumonia. Respiratory therapists may also provide life-saving care to trauma patients. Respiratory therapists are responsible for crucial components of patient care – for instance, managing life support mechanical ventilation systems, assessing vital signs, managing artificial airways, and much more.


Please join us by celebrating respiratory therapists everywhere this week, focusing on the theme ‘Respiratory Care: Changing the World One Breath at a Time.’ This year, it is especially important to let those in this profession know how appreciated they truly are especially during the current health crisis.

Thank you for all you do, Respiratory Therapists!

By Lori Hoffer, RN

I had worked in the ICU for 17 years and was the “go-to” nurse to assist families in making the hardest decision regarding their loved one and their feelings on advanced directives and prolonging life. I was comfortable with talking about dying and the process. I decided to go back to school for a Masters in Psychology and shortly after starting my classes we had a 17 year old girl that was brain dead from an motor vehicle accident in which her mother was driving and hit black ice. The mother had no recollection of the accident nor that her daughter was in our ICU awaiting CORE. That left the 18 year old son and brother who was an EMT to make decisions.

I stayed after my shift and worked with providing support to the family as the other nurse provided care to the daughter. It was with this one event I realized there was not enough grief counseling and support for people in this area, for our families in the hospital needing to make such important decisions for themselves and their loved ones. Throughout the next few years I focused my internships on grief counseling, working with the Good Grief Center in Pittsburgh and a hospice bereavement counselor.

After graduation I opened my own office but one day after taking care of a patient for over a week while helping the family (who had been estranged) to come together for their dad and give him peace upon his death, the patient decided to go home on hospice with one condition. The condition was if I would follow the family and him home because he knew his death was imminent and wanted me there to help his children. That was when I realized hospice would be for me.

For me, hospice means the patients and families have taken the first step in the journey to keep them comfortable. It is for me then to support, educate and be an advocate for my patients as well as the families. With this more natural dying process you walk a fine line between what the patient is ready for and what the family is ready for which can be two very different ideas. Most importantly, the patient has to trust that you are their advocate even when the family doesn’t agree with their choices. I navigate all the dynamics of the families’ relationships to educate and ensure we can get to a common ground of acceptance for all. Once the patient and family realize they can trust me, can trust that as their hospice nurse I have their best interest at heart, they begin to accept the inevitable. If their loved one is relaxed and trusting that makes them feel better. Every patient wants to know that at the end of their life they will not suffer, will die with dignity, and have the support of their family. They also want to know that hospice will continue to support their loved one for as long as they need after their death. As long as I can provide my patients and their families with a peaceful death I will continue to do the job I love.

Listen for Grane Hospice’s new commercial to air on Y108 starting today, featuring Director of Business Development Aimee Castor. This commercial is an excerpt of a real testimonial received from one of our patient families.

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