Minding Our Elders: Battling guilt in not meeting Dad’s dying wishesDear Carol: My dad was paralyzed from a series of strokes. Additionally, during the last months of his life, he was on a ventilator and struggled with kidney and liver problems.
By: Carol Bradley Bursack, INFORUM
Dear Carol: My dad was paralyzed from a series of strokes. Additionally, during the last months of his life, he was on a ventilator and struggled with kidney and liver problems.
Dad said he was sick of treatments and that he wanted to die. We were in the process of setting up hospice care to keep him comfortable when he had an emergency that Mom and I couldn’t deal with so we called 911. Dad was confused when the paramedics came and he fought against them. Of course they hospitalized him, though he was quickly moved into a palliative care unit.
Even though family, friends and our priest were there with him at the hospital, Mom and I both feel guilty for not following his wish to die at home. Neither of us can seem to get past this. Were we wrong to call for help? – Kenny
Dear Kenny: No one can know how complicated illnesses like your dad’s will finally play out. Since he wanted to die at home, you were working on getting hospice care for him. That means you were doing your best to follow his wishes. It’s not your fault that the care wasn’t in place when his emergency happened. You called for help. What you did was instinctive and most people would have done the same. The ventilator alone would have made it hard for you to know what was right under these circumstances. Your dad received palliative care at the hospital so the only difference was that he was in a special hospital unit and not at home.
Palliative care isn’t meant to cure people. Many palliative care units are actually staffed by hospice personnel, but whoever is staffing it is trained in giving pain relief. There is no need for guilt. You didn’t attempt to keep him alive beyond any reason. You made sure he had comfort care and notified important people. The only thing that went “wrong” was that he had to make the trip to the hospital. Most likely what hurts the most is that you are afraid he didn’t understand what was happening and that he thought you, with the help of the hospital staff, would try to keep him alive against his wishes.
Most of us try to follow the wishes of our loved ones but sometimes circumstances move along faster than anyone could expect and we are faced with emergencies and split second decisions. You were working on lining up hospice care, but his body went into catastrophic mode before you could get it in place. You loved your dad. Your mom loved him, too. What you did was act on instinct.
Your dad died with family, friends and spiritual support. Just because it was in the hospital and not at home doesn’t mean you failed him. Please talk this through with your priest or a grief counselor. You both need to let go of your unearned guilt.
Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com. She can be reached at firstname.lastname@example.org.