My dad had his first stroke on December 14th, 2023. After a series of watershed strokes, several rides to the hospital in the back of an ambulance, time in and out of the emergency room, a couple of weeks in a rehabilitation center, and three more trips back and forth to the ER, he was sent home on hospice with “comfort care.”

    He was driven to his home via non-emergent transport from the hospital. Home is where he wanted to be for however many days he had remaining. It was a Sunday. Monday and Tuesday were fairly good days. Wednesday, he started seeing children playing around his bed. Dad was full of smiles. His demeanor was relaxed and peaceful as he watched the children play. Even when he could not quite catch the pork that was floating at the end of his bed, he seemed unbothered. Thursday, there was less talking and more sleeping. By Friday, late afternoon, he had slipped into unconsciousness. 

   We were not fully prepared for what came next. The “death rattle” type of breathing began at 6pm Friday night. For twelve and a half hours, we surrounded our dad, husband, and grandpa, administering medication to him via syringe between his cheek and tongue, as we listened to that rattle. At first, it was administered every 2 hours, then one hour, then every 30 minutes at the direction of the hospice nurse via telephone on call that night. We were up all night. No nurse came. No matter how many times we called to explain that our dad seemed to be in distress, unable to swallow (for the last 12+ hours) the medication inevitably draining down the back of his throat. No suctioning was offered. Nothing.

   We were together as a family but alone in this process. We were exhausted to the point of tears, each of us lost in our own loneliness and confusion. Torn between the desparate need to hang on to this man, who is THE central part of each of our lives, and letting go, knowing his body gave him 84 years, but would not be able to give him one more day. It was his time to go home to his family, who were waiting to greet him on the other side of death. He took his last breath at 6:30 a.m. on Saturday morning. 

My sister’s grief poured out of her body in inconsolable sobbing and wailing exhales of emotion that her heart could no longer hold. Her daughter, my daughter, our mom, and I all wrapped her in arms of love, understanding exactly how she felt.

I don’t remember who made the call to the hospice nurse. I do remember watching the men from the funeral home load my dad into the back of their van and pull out of the driveway.  I don’t remember anything else, except feeling the need to sleep.

A few weeks after the funeral, my mom, my sister, and I met with the director of the home health and hospice company to share our experience. We do not want another family to experience the trauma our family experienced with “comfort care.”

We explained that expectations and options were not made clear. The nurse never offered to come lay eyes on our dad to make sure we didn’t need to change what we were doing. He did not appear comfortable. My understanding was that hospice meant comfort care. Our experience of comfort care was anything but comfort.

Home health and hospice listened intently to our concerns. We hope they make the changes they said they will, so anyone using their hospice service in the future has a positive experience of their loved one’s passing.

The good memories of our dad help to soften the pains of our loss. For that, we feel immense gratitude.