Cathy Deering

Cathy shared her story in December of 2021.

My dad, George Danforth, passed away Wednesday, October 20, 2021 from ALS after suffering from the losses and challenges presented by his disease for nearly four years.

He was a proud grandfather, and I was a huge daddy’s girl. Though a quiet person, he was humorous and loving. He was a state’s attorney, then a court-appointed defense attorney, serving as an advocate for children and as the legal point of contact for the Mental Health Board of South Dakota. Growing up, he and his father collected rocks, which they cut and polished. As an adult, he also collected stamps and fountain pens. Throughout his entire life, he enjoyed collecting things. Everything had meaning to him, though that meaning wasn’t always clear to us.

In the fall of 2019, my mom and dad came out to Nevada to spend the fall and winter months at a nearby assisted living facility. Dad’s ALS started progressing more rapidly, and the start of the pandemic altered their plans to return home to South Dakota. Instead, they moved in with us in September of 2020, and we got palliative care to help support him. It became clear quickly, however, that palliative care was insufficient for his increased needs, and they bumped him to home hospice care.

Dad was never alone. His hospital bed was situated in our second living room, and sharing a home with us meant he had his three grandchildren and affectionate pets available to him round the clock. He loved jazz music, so we would turn on music for him all of the time. Humor was a big part of our daily routines, even during personal care. His life was full, even during his declining health.

But his last weeks were full of pain and suffering. It was heartbreaking to helplessly attempt to manage his pain and keep him comfortable. He started eating less and less until he stopped eating and drinking altogether. Within his last week, Dad’s heart rate was almost always high, indicating that he was in pain. With guidance from hospice, we increased his anxiety meds and morphine.

I spent most nights during his last weeks sleeping next to his hospital bed. His bed sore had become increasingly worse no matter what we did, so they supplied him with a new bed to help with that. My eldest daughter or I slept in his old bed every night from that point on. The morning of October 20, I woke up at 6 a.m. and checked his pulse and oxygen levels, which I would do often; however, this day was different. He had that dreaded “rattle” that the hospice books tell you about. His oxygen saturation was low at 79 and his mouth was open, breathing like a fish out of water. I feared it was his last day. I woke up my mom and my eldest daughter, Taylor, to come out with us. My husband made sure my two youngest children came in to say goodbye before leaving for school. They both gave him a big hug and kiss. At that time they did not know that Grandpa was transitioning. I turned on his favorite jazz for him. When the hospice nurse arrived two and a half hours later and we turned Dad to clean him, he cried in miserable pain. The sounds were heart wrenching. I have only heard him do that one other time from a broken hip. 

The nurse directed us to give him more morphine, increasing his pain and anxiety meds again. I responded, “Too bad we can’t give him wine,” to which she said, “Give it to him.” Having grown up with the maker of J. Lohr wine, he had a fondness and loyalty to that wine. We poured some J. Lohr wine onto an oral care sponge swab, placed it on his lips and in his mouth until he bit down, and we said a toast to him. The nurse stayed with us and said she was so happy to see he was having one of his favorite things. The nurse left shortly after and felt like we had a handle on the situation. She was just a phone call away. 

Around noon, Dad started breathing really hard, and you could see his lungs in his rib cage moving. Distressed, we called hospice and were directed to give him another dose of morphine. No matter how often and how much we were giving Dad, it never seemed to catch up with his pain. His fingers started turning purplish blue. I stood up and looked into his mouth and white foam was coming up his throat. I told my sister to quickly turn on the suction machine and proceeded to suction the foam out of his throat on and off for the next two hours. The foam finally started to slow down, so I sat down next to him on the other bed and laid back in exhaustion. All of a sudden Dad’s eyes popped open; he gasped for breath. I stood up fast and said “Daddy?” thinking it was a voluntary change. He stared at me, two tears ran down his face, and he passed away at 2:36 p.m. 

Before the funeral home arrived, my husband and kids came home from school. I came out to tell them the news and had planned for them to not see their grandfather, but they wanted to see him. My 10-year-old put two fingers on his grandfather’s forehead to check his temperature, then they both gave him a hug. They weren’t afraid, just curious. They cried and held his hand for a little bit. Said they loved him so much and then left with my husband. 

A week later we held a family viewing. Born on the 4th of July, we bought Dad a red, white and blue tie to wear for the viewing. We will hold a larger memorial in his hometown in South Dakota in July and set off fireworks in his honor. 

My dad spent his last day struggling to breathe for over eight hours. His death was cruel. The option of medical aid in dying should have been available to him. My dad knew he was going to pass, and he avoided life-prolonging treatments. He could have been comfortable and relaxed knowing this painless assistance was there for him. Instead of witnessing the heartbreaking and painful series of events leading up to his last breath, I wish he could have drifted off while hearing his loved ones talking and his favorite jazz artists playing in the background. He deserved better.