Tag Archives: End-of-life

A Reflection: The Comfort of Touch for Family at End of Life

 

Touch is is a comforting gesture for both the dying and their loved ones.

My friend Andrew shared with me his reflections on the care his family received while his mother was in the hospital dying. He poured out his heart on paper to discuss how frequent expressive touch was a comfort to his mother, and himself.

He writes, “We would kiss her forehead, touch her shoulder or hold her hand with varied responses. Holding her hand was the clearest communication and the best way to tell if she was with us or not. Most days she would squeeze our hands or lift them to her face for a kiss. At times, these actions were silent, and other times accompanied by grunts or whispers or even an attempt to speak.”

“The staff were lovely and compassionate people who understood her needs, but also our needs as family members. I saw many nurses and aides greet Mom on a good day with a hug or try to wake her gently with a hand on her shoulder, but there were also hugs for us.”

“We craved something to do, some way to comfort her and let her know she wasn’t alone. These small gestures of touch were all we had in her final days and the only way we could communicate with her.”

Touch:  A Final Connection

“In the end, she no longer responded to touch because hospice was doing their job correctly. We will never know what she understood and felt in those precious moments, so we continued to touch her. That small amount of physical contact was as much a comfort to us as we hoped for her.”

“Holding her hand, the hand that comforted me as a child, was again comforting me as an adult.”

Andrew’s words flew off the page at me because it gets to the heart of the work we do at the AGE-u-cate Training Institute with Compassionate Touch training. Touch is the first sense that develops in the womb and is a fundamental human need throughout our life course.  Through touch, care-giving professionals who work with families of dying persons can positively impact end-of-life care for both patient and family.

Thank you, Andrew, for reminding us of the impact that touch can have on the living, and the dying.

 

Shared by permission from Andrew Azzarello, a person with a personal and professional passion for eldercare.  Andrew continues caregiving responsibilities for his father and is the former Director of Human Resources for two aging services organizations.

Julie has worked in Aging Services for over 30 years and has been a Licensed Nursing Home Administrator since 1990. She is a Certified Master Trainer with the AGE-u-cate Training Institute. Through her company Enlighten Eldercare,  Julie provides training and educational programs on elder caregiving to private and professional caregivers.  She is an instructor and the Interim Director of Gerontology at Northern Illinois University and lives in the Chicago Northwest Suburb of Mount Prospect, IL.

The Healing Power of Touch. Why are we Depriving our Elders?

It the first sense to develop in the womb and one of the last ones to go during the dying process.

It is one of our most fundamental human needs.  It remains for a lifetime.

As we experience decline of the body or mind due to aging or illness, the need for human touch may be accentuated in the search for reassurance,  comfort, and connection.

Is Touch Deprivation Real?

Touch deprivation in old age is very real, especially for the medically frail elder, persons living with dementia, and older adults living alone.  Despite their need for touch and being especially receptive to touch, they are often the least likely to receive healing or expressive touch from health care providers or family members.  Studies have confirmed that nursing students have been shown to experience anxiety about touching older adults.  This anxiety, along with demands on staff time and duties, lack of training on distinguishing the differences between effective and ineffective touch, and simply society’s fear of touching ill and frail elders has led to wide-spread touch deprivation in our aging adult population.

Touch deprivation leads to feelings of isolation, anxiety, poor trust in caregivers, insecurity and decreased sensory awareness.  These kinds of distress can lead to behavioral responses or expression.

“It is well known in professional circles that young nursing students tend to avoid touching elderly patients, and especially the acutely ill…touching as a therapeutic event is not as simple as a mechanical procedure or a drug, because it is, above all, an act of communication….the use of touch and physical closeness may be the most important way to communicate to acutely ill (and aged) persons that they are important as human beings.” 

-Ashley Montagu, Touching: The Human Significance of the Skin

Physiological Effects of Touch

Healing, compassionate touch tilts a person’s response away from stress towards well-being.

Touch stimulates the production of oxytocin, a chemical in our brain that leads to feelings of closeness and security.  When oxytocin is released, feelings of safety, caring, trust and decreased anxiety take place in a person’s body.  Oxytocin has often been referred to as the “care and connection” hormone.  Simply put, when your brain releases oxytocin, you feel good!

At the same that oxytocin is released, another chemical is decreasing when we experience healing touch.  Cortisol is a hormone that increases when we are stressed.  Studies show that cortisol levels decrease after even five minutes of skilled touch.  Apart from the physical relaxation, skilled touch increases our emotional well being.

Is the Tide Changing?  

“The most important innovation in medicine to come in the next 10 years: the power of the human hand.” – Dr. Abraham Verghase

We are witnessing transformational shifts in dementia care across the globe.   No longer is status quo acceptable, as we now understand the importance of person-centered care, the meaning of life enrichment and our responsibility to create moments of joy and purposefulness.

We have the opportunity to get back to the basics of human needs with effective, feasible and transformative tools that are literally in our hands.

Pam Brandon is President/Founder of AGE-u-cate® Training Institute and worked with leading Touch expert, Ann Catlin, ORT, LMT in the development of Compassionate Touch® program for eldercare providers, hospitals, practitioners and families.  Pam is a passionate advocate for creating positive change in aging care.  Pam may be reached at pam@AGEucate.com

To learn more about the Compassionate Touch program visit www.AGEucate.com

 

How Can We Lovingly Embrace the Ending…Tips for Families

What is a harder conversation topic with elderly parents – money or death?  If you guessed death, you get a gold star.  Why do we find it so very difficult to discuss the inevitable?  Surely we’ve all come to grips with the fact there is one thing certain about life and that is death.  We can embrace the ending by learning to embrace the life that we still have with our loved ones until the times comes when they are no longer with us.

Often it is not death that frightens people but the process of death.  Will there be pain, suffering and will it linger?  Fear of the unknown often is what ties us up into a pretzel of NOT wanting to talk about the ending.  What if we could learn to open up conversations so that everyone could be more prepared for the unknown, more accepting of death itself, and in turn make the process of dying a compassionate and loving experience?  Sadly, too often I see insecurity indecisions and pain overtake what could be a sweet time of compassion, filled with memories in itself.  Memories to embrace and treasure.

Most families have a considerable amount of unfinished business in this arena.  Here are some tips on how to open doors of communication, come to grips with what some call a “long goodbye”, especially those living with dementia or other chronic illness, and certainly lastly how to make the goal of acceptance and compassion be first and foremost in all planning, decision-making, and conversations.

  •  Make your wishes known.  That means we listen to our loved ones, preferably long before we have to make difficult decisions for them.  I want to interject here that we all need to understand that we should be guided by Plans A, B, and C – understanding the Life Plan A almost never is a reality.  That said, as care partners and families we do our very best to fulfill those wishes, but many circumstances may make that impossible.  Far too many times I’ve heard promised made to loved ones that they will be able to pass at home.  When the time comes, and that is not able to be fulfilled the family member feels horrible guilt.   Remember, we should be open and honest in lovingly expressing that we will do all we can to fulfill their wishes, but that it may not be possible for a number of reasons.
  • Spend more time embracing the moment of the ending rather than funeral plans.  Why is it that we agonize over what songs will be sung and flowers delivered – when our loved one needs our compassionate hand to embrace and hold at this moment?  Far too long we have gotten priorities a bit confused would you agree?  What if we put that energy and emotion into what can be embraced int he here and now?
  • Remeber that one’s feelings and emotions remain intact, although declining, until the end of life.  Response to touch, expression, love, music, even nature can have profound effects on the dying person.  Talking “around” a dying person is as much a sign of disrespect as it is a sign that they’ve been dismissed as a person.

“Our ultimate goal, after all, is not a good death but a good life to the very end.”
Atul Gawande, Being Mortal: Medicine and What Matters in the End   

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who care for them.  She is co-creator of the Compassionate Touch® program for end-of-life care.  www.AGEucate.com 

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.  

www.AGEucate.com

www.nhpco.org