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I brought my mother to the emergency room.  The doctors admitted her to the hospital that same day.  After a week in the hospital and a complicated diagnosis, I made the decision to take her back home to her assisted living facility and call for assistance from the hospice.  Too many things are going wrong, I explained to the hospice nurse, and I just want to provide a pain-free, comfortable end-of-life care.

Hospice ordered a hospital bed and oxygen.  Mom came back to her room via an ambulance.  She was to have constant care around the clock.  Even then, it seemed that her days were limited.  I visited daily, as did her grandsons.  But one day, she looked at us as if she had made other plans.  “Thank you for visiting, but now please get on with your day.” 

Mom put on her wig and her lipstick and asked the aide to take her to the dining room so she could have lunch with her friends.  “I don’t like people feeding me,” she said.  Then she joined the exercise class on the second floor.  She waved at me from her wheelchair as she followed the instructor.  She put a smile on her face and made the decision to live.  She has filled out her days ever since.

Trying to make sense of all of this, I called my hospice social worker and began my research into hospice and palliative care.  

Here is what I know now:  

Hospice

Hospice, or house, is end-of-life care using palliative methods.  This is a team-oriented approach, a circle of care under Medicare guidelines, focusing holistically on emotional, spiritual and medical care, provided by social workers, medical directors, nurses, nurse’s aides, chaplains and volunteers.  Hospice is not about curing a patient.  It does not include invasive treatments.  It is about quality of life using palliative care.

Palliative care

Palliative care is specialized care for patients with a serious illness.  This means relieving pain and suffering by treating the symptoms, not focusing on a cure.  The goal of palliative care is to make a patient comfortable while providing support to the patient and their family.

Advance Directives

Necessary legal documents include DNR (Do Not Resuscitate), Living Will, Power of Attorney and Power of Attorney for Healthcare.  As a child transitions into the role of the parent, these legal documents provide direction for the hospital, emergency team and assisted living facility, as prescribed by the patient.

I called Atlanta’s Weinstein Hospice to help.  I thought we were facing the end of life.  How could I be sure?  I needed help understanding what was happening to my mom and to me.  My hospice social worker, Susan Sandler, helped me to make sense of this transition.

“When things are changing,” she explained, “you see your relationship with your parent is changing too.  Your parent is no longer able to make certain decisions, so you become the adult, with some tough choices to make.  If your parent is declining and will not improve to where they once were, then we work to stabilize and provide quality of life during the patient’s decline.  With cancer and with chronic illnesses, there are ongoing changes that will eventually lead to an end point in a terminally ill patient.”

“How, I asked, should I deal with this grief process and talk to my mom about the end of her days?”

“Be honest,” Sandler advised.  “We let the patient and the family know that we are there to help along the journey.  It can be difficult to feel the sense of loss.”

With dignity, my mom and I are coming to terms with her decline.  Mom is not independent anymore, but neither is she willing to give in or give up.  And I am not alone in this.  Mom and I have these angels at Weinstein Hospice.  Thank you.  Every day I say thank you.

Contact Weinstein Hospice in Atlanta at weinsteinhospice.org.  To contact hospice agencies in your home community, contact NHPCA, the National Hospice Association.

Susanne Katz is a divorce coach with Mt Vernon Counseling, coauthor of A Woman's Guide to Managing a Mid-Life Divorce, an arts and living columnist for Atlanta Jewish News.com.  She is also a regular on ShareWIK.com.

More Susanne Katz here. 

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