The Power of Empathy – Helping people connect to their own hearts

Quote of the month:
“The great gift of human beings is that we have the power of empathy.” Meryl Streep

Empathy

Last year, during one of my lectures about end of life communication, a doctor asked me some questions about hospice care. He explained that his question was about his wife who had end-stage lung cancer. They were still trying to fight the disease but the disease was winning. He wanted to know more about the option of hospice and if it would be appropriate for his wife. I told him I would speak to him in greater detail after the lecture.

After the lecture, he began to tell me about the medical condition and the medical treatments that his wife was going through. This was a man who loved his wife and was desperate to keep her alive. After listening to the story, I asked what his wife would say about continuing with the treatments vs. going on hospice. I wanted to hear her point of view. I asked him directly, “What would your wife tell me about what it is like to be going through this and how does she feel about it.” He then began to tell me about what he was experiencing and how exhausted and overwhelmed he was. I realized I was talking to someone with incredible caregiver fatigue. I listened and tried to be supportive. I recommended support group options and other services that might help him with his fatigue.

Then once again, I asked about how his wife perceived her experience. He couldn’t answer. Again it became about medicine. It was as if he was reporting on an intriguing patient. I found it fascinating that he could not begin to explain or to experience what his wife was feeling. In the hour I spent with him, he could never say my wife would say … or my wife would want… This was not because he didn’t care about what she was experiencing, it was because he cared too much that he couldn’t begin to comprehend what was going on inside her.

So many things were going on. The first issue I was dealing with was denial. He didn’t want to believe that he couldn’t fix this for his wife. Doctors want to heal and even more so, they want to heal the ones they love. He was trapped inside his profession and could only focus on what medicine had to offer his wife. He kept dancing on the edge of the topic of death by asking about what hospice might have to offer but ran away from it as I described the benefits of hospice. To choose hospice felt like choosing death. And he couldn’t begin to accept that death would be taking his young wife very soon.

The second issue was that he was treating his own wife. He was one of her doctors so he had disconnected from her by making her the patient. This is why doctors aren’t supposed to treat their own family or close friends. When a doctor treats their own loved one, he can become blind to what is in front of him. This gentleman was a good doctor and he would have put any of his other patients in this end-stage condition on hospice. But he couldn’t see that as a valid option for his own wife. He was blinded by his love.

The third issue was that he couldn’t empathize with what his wife was feeling. It hurt him too much to begin to imagine what this was like for his wife. This was not a man who couldn’t speak of emotions. He expressed his own emotions about the situation freely. But he couldn’t tap into his empathy for “his patient” or “his wife” because it was too painful. Our brain can only feel what it can survive feeling. It shuts down when it becomes too much. His deep and profound pain was palpable and I hurt for him.

My heart hurt for his wife as well. I tried to explain that his desperate need to cure her was limiting her option of having good end of life support. (Okay, I didn’t say it quite that way.) He told me her pain was not being managed (in technical terms), even though he was trying to help her. I explained that hospice is really good at pain management and he should use them as a resource. I also explained that hospice provide the intangibles such as support for the family, support for him and a safe person for his wife to talk to about her hopes and fears. When communicating about the upcoming death is forbidden, the patient misses out when they are unable to say what they need to say. Her voice wasn’t being heard in the treatment decisions and her existential suffering wasn’t being addressed.

This is one of the best gifts of a hospice. The person has a safe person to talk to when she can’t talk to her own loved one. Or if they don’t have a hospice worker, a good friend or family member can be this person. I wish that the spouse could be this person, but often it is too painful. This doctor/husband was not unusual. He could not bear his wife’s suffering. I meet many people who can not talk to their own loved own about dying. That is why I am there. That is why we have social workers and chaplains in hospitals. Doctors can also be this safe person if they have the courage to take on this role.

I don’t know if he was able to get some support for himself and his wife and if her pain is being managed. I hope so. I know that I can only go so far with someone in denial. I can only dance on the edge of subject with them so they won’t feel so alone or afraid. Eventually, the person will come closer when he or she is ready.

When we want to help others we need to have the courage to:

See the suffering
Acknowledge the suffering
Do something about the suffering, then
Heal our own suffering

Interview with Carol Bursack, author of “Minding Our Elders”, on Jan. 12, 9AM pacific

Listen to interview on Jan. 12th, 9AM pacific on blogtalkradio.com/kindethics.com or listen live at 347-945-5152.

For over twenty years author, columnist and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. As a result of this experience, Bursack wrote Minding Our Elders: Caregivers Share Their Personal Stories, a portable support group for caregivers. Minding Our Elders is used as a college text for gerontology and nursing home administration classes as a way to humanize, for students, the family caregiving experience. Bursack’s award-winning Websites, www.mindingourelders.com and www.mindingoureldersblogs.com include links to helpful agencies, articles rich with information and comfort, links to chat groups, and resources for caregiver, boomer and senior needs.

Bursack’s elder care newspaper column, “Minding Our Elders,” runs weekly, in print and on-line. She is Editor-in-Chief of ElderCarelink.com. She’s an expert blogger and community leader on OurAlzheimers.com and the forum moderator and a regular contributor to AgingCare.com.

Bursack has been interviewed on many national radio shows, including “Mr. Eldercare,” “Today’s Author,” “The Ron Ross Show,” and Kevin Skipper’s “The Parent Care Show.” She has been interviewed and quoted in magazines and newspapers around the world, including Family Circle, Quick and Simple, North Jersey Media Group, The Leader-Telegram, Tampa Tribune and the Sydney Morning Herald. She also speaks on caregiving issues to groups of all sizes.

Bursack is a member of AARP, CAPS (Children of Aging Parents), the National Caregivers Advisory Panel, the National Family Caregivers Association (NFCA) and the National Council of Hospice and Palliative Professionals (NCHPP). As an expert in her field, she is featured in Montclair’s Who’s Who in Heath and has written hundreds of articles for national publications. Bursack is also a contributing author to “The Media Librarian’s Handbook,” (Facet Publishing, UK 2008) and contributing Author to: “Dementia: Frank and Linda’s story: New approaches, new understanding, new hope.” (Lion-Monarch, March 2010).

Mindingourelders.com

Have a kind and respectful day.

VeteranAid.org

I wanted to let you know about a resource I recently discovered which helps the veterans who need senior services get the benefits they need. VeteranAid.org

Here is Debbie’s story by Debbie Burak:

I’m often asked the question “why” I have taken this mission on. It is a 9-year journey of how I arrived at this point but as with many things, it is the climatic ending of a movie or a good book that has the most impact and drives the point home. In this case it was the ending of my mother’s life that became so pivotal for me.

I spent the last 10 days of her life at her bedside in Hospice, and watched how this life we take for granted slips quietly out of a room. How our survival instincts give way to resignation and acceptance that this fight is over. I looked into the eyes of my dying mother who continuously asked if her check from
the VA had come so that there would be money to bury her instead of cremation. The answer was always the same……..No. Even in her weakened state she would have known if I had lied and said yes. I couldn’t do that to her or to me.

My parent’s time in assisted living began as a result of a fire that rendered them homeless in a matter of minutes. My mother had been trapped in an 8ft enclosed patio with no exit, and at the last minute two angels came to her rescue. One jumped inside the patio while the other straddled the wall and together they pushed and pulled her up and over the wall to safety.

Monies had long been exhausted for their care, and they had not planned well enough to bear the burden of so many years in the care of others. So while her question about the check coming from the VA may seem insignificant, it would have allowed us to honor her burial wishes. Her fear of facing another fire was more than any of us could endure. I thought about how different this ending could have been, how different things would have been for both my parents if we had known about Aid and Attendance
from the beginning. $160,000 would have gone a long way to have made their lives better, and to help
lessen the financial hardship placed upon our family over 9 years. I thought about all the inquires to the VA for benefits for them, and repeatedly being told there was nothing, when all along there was.
To now have the pension awarded to my mother and be denied to the very end, to the last breath, yes, it was a defining moment in my life.

One of the last things my mother said to my sister and I was to “promise her that we would make certain that she was really dead before we let them put her in.” We promised and we made sure. I also promised something else that day, and that was to make certain that she did not wait in vain. That there would be a greater good that would come from this sorrow. If one veteran and their family have better choices, then she made a difference.

I prefer to believe that this is her gift to give, and I am simply the messenger. Debbie Burack

Have a kind and respectful day.