Monday, January 4th

Updates on Mom's condition are difficult for several reasons.  We are forced to confront the harsh realities and prognosis of brain cancer.  Our concerns are overwhelmed by what Mom needs moment to moment.  And, this terrible blow for her came relatively suddenly.  Just as she struggles today to find the right words to communicate what she is thinking, we are all still coming to grips with what she is facing and what this year will bring.

Two months ago, Mom and Dad were enjoying their one-year old home in Carrington Place, helping watch their grandchildren, exercising regularly and pursuing the simple joys of life, such as books and movies, live performances and quiet evenings at home.  They were planning trips to Chicago and Cincinnati for family celebrations.

Concerns about Mom's memory, however, prompted an appointment with her doctor that quickly led to the discovery of a brain tumor and the subsequent surgery.  Seemingly overnight, Mom's reality changed.

As we have mentioned in a previous update, although she was scheduled to begin radiation/chemo in mid-December for her Glioblastoma Multiforme diagnosis, which is typically quite aggressive, we have decided to postpone – and possibly forgo -- these treatments after much thought, prayer, love, and advice from medical professionals. We are choosing life, choosing hope, and choosing joy for every moment we share together. Our main focus now is unselfishly respecting Mom’s wishes and doing whatever we can to help her enjoy life and spend time at home.

Yet, this battle has sapped Mom's strength and jumbled her thoughts.  Only with the assistance of nursing care is she able to be in her own home, where she is in a hospital bed.  Dad's loving attention and their love for each other transcends any difficulties and is an inspiration to us.

Indeed, Mom's response to the love of family and friends is what confirms to us that she is still very much "Joyce."  Cards and letters with favorite memories or testimony of the difference she has made in individuals' lives spark recognition and emotion.  Such love is truly the best medicine for our current goal, to make Mom as comfortable and happy as possible.

The written word has always been so important to Mom, and while leafing through one of her favorite poetry books, stuffed with favorite quotes and wisdom, we came across this handwritten gem Mom apparently wrote herself:

"Life is like a tube of toothpaste.  In the beginning you use it quite freely. But when you reach the end you carefully squeeze out every last ounce.  J.A.A. (Joyce Ann Arnold)"

Mom remains primarily confined to her hospital-style bed, but has increasingly been able to be safely helped – by her nurses,  aides  and physical therapists-- to a bedside chair for short durations of time, which is an important step towards increasing her strength and, ultimately we hope, her mobility to help her maximize the enjoyment of life in the comfort of her beloved home.

The process of helping mom regain her strength and mobility has been a slow, arduous one, but we have recently begun to notice encouraging progress, including sustained levels of alertness and lucidity, an increased appetite, and less resistance to being moved out of bed.   As we  remind ourselves that it has been less than two months since mom underwent MAJOR brain surgery, we are even more amazed at mom’s remarkable progress, obviously driven by her unshakable inherent strength and resolve.

Mom recognizes her family and her trademark subtle and witty sense of humor continues to shine through.  During her periods of alertness, she enjoys joking around, singing songs, and listening to her cherished poetry.

 

We are grateful that our team of private-duty nurses and aides are as committed and dedicated as we are to ensuring mom’s comfort and happiness.  Mom – as she has done with people her entire life -- has brought out the best in these competent, compassionate professionals who feel genuinely privileged  to be her medical caregivers.  Mom has already forged deep bonds with them as they are drawn into her saint-like presence and positive, calming energy, which transcends her impaired state and envelops all those whom she encounters.

We are hopeful  that mom will continue to build on her recent momentum and we continue to savor and enjoy each precious moment that we share with her.  Her remarkable resiliency andsteadfast inner happiness continues to buoy and inspire us on a daily basis.

Because the rehabilitation process continues to take absolutely every ounce of energy and focus that she can muster we are limiting visitors to immediate family members, and appreciate everyone's understanding.

Wednesday, January 20th

In the interest of preserving Mom's comfort and dignity, Hospice services are now involved in her care.  Though the implications of "Hospice" make this a difficult step, we believe that the expertise and goals of Hospice match our own realization about Mom's diagnosis and prognosis.

These days are a struggle in so many ways, as our hopes and expectations have been in a state of constant readjustment since Mom's initial diagnosis two and a half months ago.  Through it all, despite the need for nursing care and periods of confusion, anxiety and discomfort, Mom's personality and love prevail.

Because of the brain tumor and surgery, Mom has trouble expressing what she is feeling or thinking, which is especially frustrating for her when she begins but cannot finish what appears to be an important thought.  We are not exactly sure what she understands of her condition.  What we do know is that she is still Mom, still admonishing us to "get home to your family or your job,"  still telling us she loves us and is proud of us, and still happiest when Dad is with her.

In recent days, Mom has been strong enough to spend some time in a chair and has even been able to sit in a wheelchair at the kitchen table.

We regret that she cannot accept visitors, but please know that Mom does love us to read your notes and letters to her, especially shared memories and stories.

We are thankful for this time with Mom, and for your continued prayers and support.

Friday, January 29th