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Posted: June 01, 2005

Professional Caregiving

Our Clients Are Our Best Teachers

I just returned from a funeral.  A co-worker of mine has been intimately involved in the care to her sister who had been battling cancer over 25 years. In 1980, this young mother of 3 was diagnosed with breast cancer, and was told she had less than a 10% chance to survive 2 years. Her family's stories this afternoon recounted the years she battled this disease, with over 11 reoccurrences, each time facing a new set of treatments -- chemo, radiation, each with its side effects, each time with new hope and new fears.

When someone faces a 25-year battle, like she had, still fighting the war up to this last week, it becomes clear that her family, her doctors, nurses and care providers learned a lot about living from her. Sometimes we forget that the real learning occurs not from the trained, educated professional to the client, but the reverse, from the patient or client who is living the situation and has chosen her own personal path on which to travel.   

It became apparent when the oncologist who had been treating her came up to the podium to address the hundreds of mourners who turned out to pay their respects to the memory of this amazing woman.  He spoke quietly, his voice cracking from emotion throughout his remarks.

He recalled that 22 years prior, he was an oncology fellow when he first came into contact with her.  He remained her oncologist throughout the decades-long battle she waged against her cancer. He recounted the lessons he learned from her while caring for her. His humility and perceptive words reminded me that all professionals who work with people facing life-impacting transitions are the stronger and more competent if they keep aware of their feelings of loss and life.

Below are a few of the most significant lessons I have learned from my family and clients:

Humor - While no one suggests you can completely reverse a medical condition through laughter, I know for a fact that without humor you cannot keep on.  When my oldest son faced a life threatening disease and a subsequent liver transplant at age 13, it was the hours spent laughing at "I Love Lucy" reruns and funny movies that gave us both new-found energy and optimism in the face of difficult treatments, setbacks and post-operative recuperation. 

We now know, thanks to good research in this area, and movies like Patch Adams, that when humor is infused into treatment regimens, there are actual chemical reactions in the brain that boost the immune system.  This was mentioned by all who spoke at this morning's funeral service.  Her humor and willingness to laugh in the face of the darkest news was a quality they said carried them, while they were supposed to be carrying her, but more importantly, they believe it played a big role in the years of life she had despite the poor prognosis.

Support - All of us at one time have been in need of the care of others.  What have we learned from those experiences?  How difficult is it to have to ask for assistance, day in and day out?  How painful is it to see how you have caused other's worry and upset? How frustrating is it to lose independence? Have you had to fight other's over-protectiveness when you felt ready to take a step, maybe even a risk?  (They told of the cruises she took in these last years, despite her worsening condition, as an example of things she couldn't have done had the family held her back out of fear.)

Reciprocity - My friend's sister had hundreds of friends stand by her throughout her illness, and these friends learned how to provide the care she needed, and when she had periods in which she felt better, she was the first to see how she could help someone else. AND THEY LET HER HELP.

I have learned that benefit from my work with folks with dementia.  They want to give back, it is central to their coping. It is the way in which you invite others who are on the receiving end of care to provide care in return - maybe in small ways, but nonetheless, it sends a powerful message to the person that they still have something to give. Thus the term "care partner" was coined, as opposed to "care giver" and "care receiver," emphasizing that care should always go both ways. Caregivers should allow the other to care for them in whatever way they are able.

Finally, is courage - to face the inevitable, even if tears are shed. Courage to speak honestly and openly to family and friends, inviting discussions about one's life, their dreams, legacy and wishes -- these are the biggest gifts that can be given to someone who is facing death.  Allowing the person to process her life, address loved ones and speak openly and honestly when she is ready.  It is a shame that sometimes as caregivers, we are not as ready as our clients are to see the inevitable and speak it.  It takes courage to fight an illness and face death simultaneously. It takes courage to try new approaches, treatments or to let the process do what it will.  It takes courage to hold on.  It also takes courage to let go.

Let's all try to remember that the most important life lessons are often taught by the youngest, the frailest and the sickest.


Sylvia Nissenboim is a licensed clinical social worker and who has been working in the field of adult day services in the St. Louis area. She is the director of four adult care and enrichment centers for the American Red Cross and also operates a personal and professional coaching firm, LifeWork Transitions, specializing in caregiving concerns, adult day care management and other aging services, such as virtual coaching and family care giving support groups. She co-authored The Positive Interactions Program, is a national speaker, and has served as president of the Missouri Adult Day Care Association and as a member of the Missouri Governor's Advisory Council on Aging..

© 2005 Pederson Publishing, Inc. All Rights Reserved.
Commercial use, redistribution or other forms of reuse of this information is strictly prohibited without the prior written permission of Pederson Publishing.

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