Tag Archives: Hospice

How Caregivers can Deal with Anticipatory Grief

Anticipatory grief refers to a grief reaction that occurs before an impending loss. Typically, the impending loss is a death of someone close due to illness but it can also be experienced by dying individuals themselves.

I dealt with anticipatory grief with both of my parents, and this often happens with long illnesses.  I’ve coached many caregivers through the years on recognizing and responding to this grief, especially for those caring for someone with chronic illness, or neurological illness such as dementia, Parkinson’s Disease, MS, Huntington’s Disease and others.  It’s very important that caregivers understand this grief and have tools to cope.

Although we most often think of grief as something that happens after a death, it often begins long before death arrives.  Many times this grief carries similar symptoms of regular grief (after a person passed).  These symptoms often include sadness, anger, isolation, forgetfulness, and depression.  What complicates anticipatory grief is the fact that it is often coupled with caregiver’s stress and exhaustion.   This can bring on overwhelming anxiety, fear and quickly snowball into physical, emotional and spiritual challenges for caregivers and families.

Anticipatory grief encompasses the loss of a person’s abilities and independence, loss of cognition, hope, future dreams,  and loss of identity for both care partners.   Anticipatory grief can last a long time, as with chronic illness of a loved one, thus the reason caregivers often become overwhelmed and simply exhausted from the lingering feelings mentioned above.

Here are a few tips on how I dealt with anticipatory grief and coached others along their journey as well:

  1. Feelings attached to anticipatory grief are normal  Like normal grief, you must allow yourself to experience the different emotions that come with it so that you can move on to acceptance.
  2. Remember you are not alone!  Reach out to others who are walking your path.  Support groups often provide vital links for people to share with others openly and honestly.
  3. Accept your loss. Although it’s not easy and you may need to spend time talking with others, reading, journaling or other means where you can express yourself, ultimately as caregivers we must face and accept that no matter how much you would like to change a situation, it is what it is.  You will give yourself a gift by going through this process of acceptance.
  4. Remember that death is a part of life and that because you are grieving does not mean special moments and memory-making is gone.  Quite the contrary… you may find that by reframing your thoughts and accepting that every moment is even more precious, you will gain so much more in return by truly living in the moment with your loved one.
  5. Everyone grieves differently and accept that your grief will be different than other family members and friends.  Accept that the journey of grief is everyone’s own walk and we should be as accepting of others and our own.  In other words, this is a time to walk with grace.
  6. Be intentional about caring for yourself.  This might mean extra time allotted to meditation, prayer, exercise, journal-writing, reading of whatever it is that feeds your soul.
  7. Reach out to others, even when it’s the last thing you want to do.  Maintaining your relationships and connections is the healthiest antidote to cycling into isolation.
  8. Be mindful that when your loved one dies, feelings of relief are normal, but this does not mean that you will also not experience grief again.  It will be different grief but certainly will come with many of the emotions felt during anticipatory grief.
  9. Your best gift may be to reach out to others who are experiencing anticipatory grief.  Giving when you feel you have none more to give is often the best medicine.
  10. Practice the art of gratitude for the ups and downs, joys and challenges.  Illness and death certainly bring soul-pain, but can also open up avenues for deep personal growth and strength.

Pam Brandon is President/Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those who serve them.  A long-time caregiver herself, Pam has inspired thousands of caregivers with education, support, and wisdom.


How Can We Embrace the Fact that Death is a Part of Life?

We all know that the only thing certain about our life is that someday it will end.  And yet death continues to be an elusive topic in most families and social circles.  Someone recently shared with me that she felt if she brought up the topic with her parents,  they might feel like she wanted to hurry things along.

Do we fear the inevitable that much?  Or do we instead fear the journey to that “end” point?

Kelvin H. Chin, Executive Director, Overcoming the Fear of Death Foundation says the fear of the PROCESS of dying is not the same as the fear of death. It is a common fear, and is closely related, but it is not the actual fear of death itself.


Studies do in fact verify that people fear that their pain, symptoms, anxiety, emotional suffering, and family concerns will be ignored. Many critically ill people who die in hospitals still receive unwanted distressing treatments and have prolonged pain. Many fear that their wishes (advance directives) will be disregarded and that they will face death alone and in misery. Physicians may use confusing or vague medical terms and talk briefly about treatment options when the patients are too sick to participate. Most people want to discuss advance directives when they are healthy and often want their families involved.

Attitude are changing about end-of-life care and death with many forward thinkers aiming to empower people  facing the end of their lives.  The National Hospice and Palliative Care Organization explains this movement as an effort “to de-medicalize and re-personalize the end-of-life experience.

As more families are educated on hospice and palliative care and the holistic approach that emphasizes acceptance, comfort and counseling over deployment of life extending medical measures, I believe more of us will be less fearful of the process, seeing it as more humanistic and gentle.

While the tide is turning slowly, it is my hope that health professionals and families will approach death as a part of life and one that when discussed openly and honestly will change our culture and attitudes about how we honor wishes, create moments of joy and lift unnecessary burdens along the way.

Pam Brandon is President/Founder of AGE-u-cate® Training Institute.  A passionate advocate for older adults and those that serve them,  she embraces transformative change in elder care.  



Person Centered Care: The Art of Authentic Listening

Authentic listening leads to empathetic, person centered careWith today’s emphasis on person centered care, communication skills are essential. Any senior care or hospice professional regularly interacts with people with communication challenges stemming from brain injury, stroke, hearing loss; Parkinson’s disease or Alzheimer’s disease.

If we were to take an honest look at how we normally listen we would see something like this:  We appear attentive and listening to the words the other person is saying.  We may be distracted by our thoughts about what we are hearing while already forming our response.  Or we may be having little (or big) judgments about what is said.  Most of the time we are more involved with our own experience than that of the other person.

Develop the Qualities of Authentic Listening

Listening from the heart requires self awareness and a willingness to expand your comfort zone.   Intend to listen more authentically. Here are some tips for how to become an authentic listener.

  1. First of all, quiet your mind. Our minds are in constant motion due to distractions that compete for our attention. Quiet the mental chatter and open a space for deep attentiveness.
  2. Listen without judgment. Judgment is reacting based on our own past experience. We react because our personal triggers get pushed resulting in judgment. Awareness of your triggers opens communication. Simply receive without judgement.
  3. Commit to patience. We live in a rushed world. We tend to move on to the next thing rather than attend to what is in front of us. True communication can’t be rushed. Be patient.
  4. Remain in the moment. Let each moment of the interaction unfold without trying to steer it a certain way or without preconceived ideas about where the conversation is going.
  5. Listen first, and then respond. Our tendency is to mentally form our response while the person is still talking. Focus first on what the person is conveying.
  6. Be honest. If you are unable to fully attend it’s better to say so than pretend you’re listening. When preoccupied, tell the person you care but you can’t give your full attention right now. This is acting with integrity.
  7. Listen with your eyes, rather than just  your ears. Observe the non-verbal message. What is body posture telling you? Is voice tone consistent with spoken words? What’s the facial expression saying?
  8. Be comfortable with silence because it leads  to powerful communication. Silence allows the heart to connect and builds trust and empathy.
  9. Lastly, receive the gifts of authentic listening. When you listen from the heart you enter into a mutual experience of giving and receiving. Let the experience uplift you.

Authentic listening is not about doing anything. Therefore no formulated response. No need to fix anything or to make the person feel better. But rather it’s about being with the other person while caring about his or her experience. In conclusion,  Rachel Naomi Remen tells us, “Listening is the oldest and perhaps the most powerful tool of healing. It is often through the quality of our listening rather than the wisdom of our words that we are able to effect the most profound changes on the people around us.”

Compassion Fatigue: How to Know if you Care Too Much

Senior and Hospice care professional compassion fatigue
Compassion fatigue impact

Anyone senior care or hospice professional can experience Compassion Fatigue. Nurses, doctors, counselors, veterinarians, therapists, social workers, chaplains, emergency response workers, and people caring for aging parents are vulnerable.

Dr. Charles Figley, an expert on the subject, describes Compassion Fatigue as, “ a state experienced by those helping people in distress; it is an extreme state of tension and preoccupation with the suffering of those being helped to the degree that it is traumatizing for the helper.”  He goes on to say that “The capacity for compassion and empathy seems to be at the core of our ability to do the work and at the core of our ability to be wounded by the work”.

Compassionate fatigue results from the cumulative impact of taking care of people living with serious illness, trauma, abuse, or severe conditions.”  It’s different than job burnout, which is dissatisfaction with our employment situation, not necessarily the work itself.

Compassion is our feelings and thoughts when we witness the suffering of another and the desire to alleviate the suffering. Sometimes we confuse compassion with attachment, which is our own personal investment in the outcome of the situation.  In other words, when we think we feel compassion we are actually wrapped up in our own emotional needs rather than the needs of the other person. Perhaps it’s attachment that leads to compassion fatigue, not compassion itself.

A perfect illustration involves Jane, a therapist working in a nursing home. She describes walking into an elder’s room and feeling stunned by what she saw—an extremely thin, emaciated woman with severe bruising and discoloration on her arms and legs sitting in her wheelchair, alone.

Jane described her first reaction as fear which turned to sadness for this woman’s condition and knowing that she really couldn’t do anything to change it.  But she conjured up the courage to stay present and focused her attention on this woman rather than the outer condition. The fear softened. She gently stroked the woman’s shoulders and she told Jane, “That feels good.” Jane shared that following the visit instead of fear she felt good knowing she had made a difference by connecting with this woman. She was able to drop the attachment to the fear and sadness which allowed her to be present and both she and the woman were uplifted in the process.

How can you recognize compassionate fatigue?  

Some of the symptoms may seem like “normal” stress responses and you may associate them with your work. After all, we live in a pretty stressful world these days. Some characteristics of compassion fatigue include:

  • Withdrawing from others
  • Difficulty connecting with clients- detaching
  • Feeling angry that other caregivers don’t understand the nature of your service
  • Life feels too serious
  • Turning to compulsive or addictive behaviors such as overeating, overspending, alcohol, smoking, etc.
  • Physical symptoms: headaches, gastrointestinal symptoms, muscle tension.
  • Fatigue and apathy
  • Difficulty concentrating
  • Avoiding clients. Calling in sick or postponing appointments
  • Thinking that this work isn’t for you (when you know in your heart you really love it)

It’s important to recognize the symptoms so that we avoid reactions or relieve them if they arise. The answer lies in self-care.  Training about self-care typically includes physical support like regular exercise, getting enough sleep and good nutrition. However we shouldn’t stop there. Nancy Jo Bush, an oncology nurse, says that self-care also includes setting empathetic boundaries; self awareness and self forgiveness; being in tune with one’s spirituality and finding hope. The experts agree that reaching out to others and developing a support system is critical, therefore, who would you turn to if you needed the support of an understanding friend?

One hospice professional advises, “Lighten up and don’t forget to laugh.” That reminds me of an old Joni Mitchell lyric, “Laughing and crying, you know it’s the same release.”  So, thanks, Joni. We’ll all try to remember that!