Mom Chooses Palliative Care to Help Her Care for Marcus and His Siblings
Judy has watched two of her nine children die, and a third, Marcus, 21, is dying. Seven of her children are adopted and five of them were born with complex medical needs, so Judy knew what she was getting into.
As someone who served as a pediatric nurse years ago, Judy cared for seriously ill children and saw that many ended up in nursing homes or remained hospitalized. That was when Judy made up her mind to give these children a home. "I decided to be the mom. Everybody needs one."
When it's clear that one of her children is dying, Judy sets out to make the end of that child's life the best it can possibly be. "I don't mind dropping kids into heaven," said the single mother. "But doing it alone is very, very difficult, and thankfully, I don't have to do that because of palliative care. The children are able to die in their own beds or in my lap, with their things around them, not in the hospital."
Marcus was born without kidneys and has had three kidney transplants. The last one failed after 8 years, and Marcus was placed on dialysis. About 8 months ago, Marcus decided he was through with kidney transplants and now is dying of renal failure.
Palliative care has helped Marcus do what he likes in his last months. A talented drummer, Marcus works with the music therapist to write music and learn to play new instruments. The social worker takes him to the mall. The palliative team helped him make a video and plan his funeral, including the music ("Crossroads," by Bone Thugs-N-Harmony) and dress code (black Dickie pants, white T-shirt, white bandana, and black Chuck Taylor high tops). "It's important to have a voice in how you want to die," said Judy. "Even if you're a young person, you should be able to say what you want."
"Whatever days you do have, the palliative care team will do anything they can to make that a better time for the family and child."
Marcus's palliative doctor, in Northern Kentucky, drives 90 miles to spend time with Marcus, talking to him about his concerns and worries. "According to Marcus, this doctor is the best thing since sliced bread," said Judy. "He is one of only two doctors Marcus wants to see at this point. He has had 11 specialists."
The palliative team has done many things to help Judy—they help with bathing Marcus, take his vital signs, fill prescriptions, and stay with him when Judy works. "I feel like they wait on me hand and foot," said Judy, who now works teaching foster parents how to care for children with complex medical needs.
When Justin, 16, died 5 years ago of cystic fibrosis, he also had palliative care; however, there was no palliative care available locally in 1998 when Tina, 14, died of spina bifida. "The difference is huge," said Judy. "With Tina, there was no daily contact with anyone. All of her care was mine to do. There was no one to talk to about the responsibility or to help me figure out the right thing to do. There was no pediatric palliative care doctor to say, ‘OK, have you thought about this or that?' Basically, I was on my own, which is a terribly lonely feeling.
"The whole premise behind pediatric palliative care is to add quality to the days you have, not to add quantity," she said. "Whatever days you do have, the palliative care team will do anything they can to make that a better time for the family and child.
"The palliative care team doesn't relieve you of the responsibility; they hold you up so you can get it done."