August 27, 2024

By: Heidi Edwards

Losing someone you love is life altering.  As you see the inevitable death approaching, there are moments where you would do anything – any single thing – to preserve and prolong their life.  Why?  Because the thought of life without them is too terrifying to consider.  

That’s how I felt as I watched my older sister, Heather, during her battle with ALSP.  I had already lost my mom, Phyllis, my aunt Ruth, and my uncle Chuck to this disease, and the nightmare continued and intensified as both of my sister’s became ill.  Nothing can compare you for losing this many family members in this terrible way.  The thought of losing my sisters though, gutted me.  I was never meant to be an only child.  My sisters were my best friends.  We were raising our children together; we were living our lives together.  

Having watched our mom, our aunt, and our uncle deteriorate and become utterly dependent on others to live while fighting their own battles with ALSP, my sisters and I had had many hard conversations about our wishes should any of us ever become ill with the disease.  Most 20 and 30 year olds barely give a thought to their own mortality, but when you are faced with a hereditary illness, your own mortality smacks you in the face early and harshly.  So despite the discomfort, we spoke aloud our end of life wishes.  We talked through what, if any, life support treatments we would want.  If we were close to death, what intervention would we want?  If we were in a coma and not expected to recover, what care would we want?  If we had permanent and severe brain damage,  what would we want?  And we were specific.  We talked through “life support treatments” ranging from ventilators, to feeding tubes, to CPR administration, to major surgeries, blood transfusions, dialysis, and even the use of antibiotics.  These conversations were a lot, but we also knew from first hand experience how important they were.  

I am thankful we had these talks, and I am grateful we put legal documents into place ensuring they would be followed.  My brave Heather, in the quest to save her life, agreed to undergo an experimental bone marrow transplant (BMT).  We could never have imagined the path that decision would take us on.  I was a perfect donor match for Heather, and we were so hopeful.  She, her husband, and myself flew to MN for the BMT.  I underwent my operation, and Heather was prepped to receive my marrow.  The chemo regimen was intense.  She lost her hair and became very weak.  15 days after transplant, Heather suffered a massive heart attack.  Because we had a Living Will in place, doctors knew which life support treatments Heather would and would not want.  They were able to intervene according to her wishes.  This was a relief for myself and Heather’s husband.  The decisions being made were Heather’s.  We didn’t have to make snap decisions or second guess those decisions.  During this intense, frantic, and traumatic situation, we were not burdened by the types of decisions that would bring guilt and regret.  Sadly, Heather’s body began rejecting the transplant and continued to decline.  During those long days, there were moments when I wanted the doctors to do more, intervene more, do anything to save her life, but I knew Heather’s wishes.  I knew her limits and her boundaries.  I leaned on and clung to those as a life line for myself as she continued to decline and her death was imminent.  Because we had talked openly I knew how she wanted to live and I knew how she wanted to die.  It was the last gift I could give to her – to honor her wishes – to ensure she did not live a half life, to help her die with dignity, surrounded by those she loved.

It’s been four years since she lost her battle with ALSP.  I miss her every single day, and there isn’t a day that goes by that I don’t think about her and strive to honor her with my life.  One of the many ways I honor her is by sharing her story and encouraging others to put their Living Wills in place.  Sisters’ Hope provides resources to guide you through these conversations, and we’re always available to share our experience and insight.