|Bringing Hospice on Board||THE JOURNEY with a brain tumor is an emotional roller coaster for patient and caregiving family alike. Anyone who has been a part of this experience understands the difficulty of these ups and downs. But no matter how long or hard the journey...no matter what the grade or type of tumor...when the road narrows and it is time to think about end-stage comfort, no one feels truly ready for the letting go.
This site is not intended to take hope away from those who are new to the diagnosis or who are still fighting to defy overwhelming statistical odds. I wish them distance---and victory!
Rather, I've created this site so that caregivers approaching this important new junction may recognize and understand end-stage events that are likely to happen, as well as find support in providing the best of loving care during this critical time. I share not only my own experiences with my father, but also those of literally hundreds of others who've been there as well.
I'm not a medical professional. I have nothing to sell. I came to this through my father's own journey with gbm (1999-2000) and the learning that continues as others so generously share with me.
Throughout Dad's battle, I educated myself on radiation and chemo, side effects, and symptoms, feeling fairly well prepared at each turn. But when it was time for the referral to hospice care, I was at a loss. There was no information, or it related only to general cancer death at best. Hospice was a marvelous support to us, but their knowledge about brain tumor death was no better than ours. They didn't see it coming, and so, neither did we. Since then, in working with other brain tumor families, many things have come to light which now enable families to better prepare and to make the most of the time that remains. That is my wish for you.
The information and advice provided here will, I hope, help you identify your own questions that can be shared with your loved one's medical team. I hope that the site will assist you in this, the most important "work" of your life. When all is said and done, I wish you peace, a heart that soars, and absolutely...positively...no regrets.
|Deciding It's Time for Hospice|
|Ed Robinson (glioblastoma 6/99-10/00), shown 6 months into his 16-month battle, with daughter Diane Phillips|
|Questions to Ask the Agency|
|Where Do We Stand?|
|At-Home vs. Inpatient Care|
|The Role of Steroids
in the End Stage
|Symptom Timeline (some help in answering the question "How long?")|
|The End-Stage Landmarks (signs of progression and tips to deal with them)|
|Why Decadron Can Help at This Stage|
|How to Tell That Swelling Is Severe|
|From the Trenches (caregivers share their own stories with you)|
|Using Decadron to Buy Time|
|Challenges to the Caregiver as the
Decadron Dose Is Raised
With the Patient
|Other Important Brain Tumor Sites
|This visitor exchange allows you to leave
a comment or to read what other
caregivers have written. I'll pop on too and respond to your posts as quickly as I can.
|What Brings Me Here|
|As an editor of medical books and journals, I was instantly comfortable advocating for my father by communicating with his doctors and nurses. I quickly gained the specific knowledge I needed about the neurosciences through membership in the braintmr online support group (a wonderful group I participated with for eight years!). I was invited to contribute to the 2002 book Childhood Brain & Spinal Cord Tumors: A Guide for Families, Friends & Caregivers, and I've attended the last four Florida Brain Tumor Association conferences, listening to the greatest minds in the field share the latest hopes for treatment and cure. In 2002, I completed hospice training through my local hospital's agency and have volunteered both in patient/family care and in bereavement support.
I have recently been asked to join the board of the Brain Tumor Action Network. It is the goal of this organization that every affected individual and family will have access to the full range of support they need and that those untouched by brain tumors will be made more aware of the devastation of this form of cancer. One of our most visible programs is Hidden Under Our Hats, a moving tribute to our warriors and angels. Family members are invited to send in a hat representing their loved one. These thousands of hats make their way across the country as a traveling display showing how widespread this cancer is becoming. Each May, the hats appear in Washington, DC, during Brain Tumor Action Week, an awareness event geared toward lawmakers. For information on submitting a hat or memoriam donation at any time, visit the BTAN site.
This site is my labor of love in Dad's memory and my gesture of friendship and support for you. I can't imagine that I'll ever consider it done. But my dream remains: one day a cure will be announced, and this site will no longer be needed by anyone. It will be my great joy to shut it down.
If I had it to do
all over again,
I wouldn't change a thing."
Ed Robinson, 1933-2000
"I can never lose one
whom I have loved unto the end;
one to whom my soul cleaves so firmly
that it can never be separated
does not go away
but only goes before."
St. Bernard of Clairvaux
|My Father's Story|
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