Supporting People as the Age
Right Here with Michael
Debra and her brother Michael over the years.
In January of 2014, after a two-year battle with cancer, our mother passed away. Her death was devastating to our family, most especially to my brother Michael, who lived in a group home. Tasked with telling him, I was grateful to have one of his direct support professionals (DSPs) there to help me break the news.
Before our very eyes, Michael cruised through the first three stages of grief.
Denial: “No. My mum's coming to see me in April. She's fine.”
Anger: “My sister's lying to me!” and finally…
Bargaining: “I'll be good, then she'll be here. I promise! I'll be good.”
When I was too crushed to react, this quick-thinking DSP got on her knees, looked up at my brother, and held his hand. She looked him directly in the eye and waited for him to stop sobbing. She was able to calm him by saying over and over again, “You haven't done anything wrong. Your mum has gone to heaven.”
DSPs Supported Michael as We Grew Up
This woman was one in a long line of DSPs who affected Michael’s life. Diagnosed with autism at age three, he then developed severe self-injurious behaviors at age six. One day, out of nowhere, he started tapping his head on the driveway. We were fascinated at first, not knowing that that day would change our lives forever. Because of the severity of those behaviors, he had to live in a developmental center beginning at age 12. He couldn’t stop it, yet he could identify it, literally saying “make the banging go away.” He lived in two different developmental centers, and one Intermediate Care Facility before finally moving to a community home.
Family members are acutely aware of the traits that may or may not make caregiving go smoothly. Michael had beautiful brown eyes and a delicious sense of humor. He preferred being around women. He loved hospitals and was a pleasant and compliant patient. When he was small, our parents took him to hospitals in Pittsburgh and Columbus and for consults at Johns Hopkins. Whenever he was hospitalized, our mother would stay in the room with him, which must have been exhausting for her. She'd humor and comfort him by playing hide and seek. She’d ask, “Where's Mum? Where's Mum?” He’d answer, with giggles, “She’s right here with Michael.”
I'm the oldest in our family; Michael was the youngest. As his long-term advocate, I enjoyed helping him and looked forward to him moving closer to me once he seemed ready to live, as he often said, “in a group home.” In 2010, before we moved him from a developmental center to a community home, I spent evenings visiting homes that served young men with autism. Many were really good. We had a lot of choices, including a home with three women housemates willing to take one more resident. We only added it to the list as an afterthought. Of course he chose that one. It was a bright golden ranch home, with a large backyard. He called it the ‘yellow group home’ and got them all singing to the tune of The Beatles song Yellow Submarine… “We all live in the yellow group home.”
His care team of DSPs decided to be honest and open and say that he would leave and probably not return.
Michael and his housemates had many years of shared experiences, playing on a Dream League baseball team every summer, enjoying traditions like going out for breakfast on Saturday mornings, attending dances and going daily to their various day programs. He took vacations and traveled to see our parents. They adopted a cat named Sneaky.
Additional Diagnosis
Fast forward to the end of 2021. Michael began to have fatigue and listlessness. His symptoms were difficult to diagnose as it looked a lot like the symptoms of the effects of anesthesia administered in his annual dental procedure. But it lasted longer than usual, complicated by a biopsy requiring more anesthesia, which only clouded the issue. In one of the many trips to the emergency room, a resident took me aside and said, “I’ve seen his scans, and someone should explain this … you really need to seek Compassionate Care.” Soon after that he was diagnosed with colon cancer with ten centimeters metastasized in the liver. He didn’t qualify for chemo. Our stepfather, an ethics professor, and our sister-in-law, a physician, spent hours on the phone with me listening to the updates and options. Our family was devastated, as we faced that question of how much time Michael might have left.
Hospice Services
The group home manager and I learned that hospice can be a place or a service. Michael could receive hospice services at his group home in the form of a nurse checking in daily or every other day, monitoring vitals and interacting with his home caregiver team about the progress of his disease. If he needed to, he could go to hospice and stay. It looked so much like a lodge, with comfortable rooms, and patios with deer, birds, and flowers. The workers were wonderful, and they allowed me to stay with him the first night.
On the last hospital stay before going to the hospice lodge, a young man entrusted with caring for Michael shared that he was applying to medical school. I explained that I’d be telling Michael that he would be going to the hospice, and we couldn’t really say no to it. I said, “I just need you to back me up, go along with it; just follow my lead.” Michael knew he was sick. My plan was to tell him that there wouldn’t be any more medicine. And that we would be staying at a vacation lodge. He loved vacation! I was sure this would work. This young man said, “He keeps asking for his mother. He wants to go to heaven and see her.” I explained that, as Michael had worked through the stages of depression and then acceptance of our mother’s death, he was comforted by talking about seeing her in heaven. This seemed to help him come to terms with his own situation. This caregiver listened, and Michael seemed good with the plan. Maybe we took it a little too far by telling him that the hospice has a door that goes right up to heaven. Michael asked this young man, “Will they open the door and there’s my mum?” “Sure!” he said. This was the one thing I couldn’t deliver.
He stayed at the “lodge” for a while, then returned home. He became thinner. His housemates became more caring and nurturing. They’d come home after their day programs and ask how he was, sit and talk to him, play cards, and watch television.
Once hospice care was back at his home, it was in full swing. The hospice nurses left pamphlets for the DSPs to read and one of them noticed the symptoms that were tied to being “imminent.” This is what hospice workers refer to when a patient is very near death. She mentioned it to the nurse, and as the time got closer for them to take him back to the hospice lodge, we were all naturally concerned about his three women housemates. The experience was a lot for them. There was the real worry that he might die in their home and that it would be devastating for everyone.
His care team of DSPs decided to be honest and open and say that he would leave and probably not return. They encouraged everyone to make cards for him and to sit up as late as they wanted to, talking to him, and watching their favorite TV shows. Telling him that they loved him. Listening to him talk about seeing his mother in heaven. One of them prayed with him. There were a lot of tears.
Returning to the Hospice Lodge
Upon returning to the hospice lodge, colleagues of mine visited: a registered nurse, a service and support administrator, and a friend who had actually been the intake professional when Michael secured the opportunity to live in the yellow group home. My nurse friend brought Michael's favorite ice coffee with extra shots of caramel. These visits were meaningful to me, as we reminisced about their contributions to his care. But once they left, it was back to that uncertainty of not knowing how much longer it would be.
The hospice workers were our angels. They shared experiences that reassured us about the end reminding us that however your loved one’s final moments play out, there’s no wrong way. One person waited until their long-lost relative arrived and then drew their last breath. Another person slipped away when all their family members left the room just to walk down the hall for a cup of coffee. These angels know when it’s close, but it’s not their mission to make anyone second guess their actions. Guilt is not their currency.
For our family, DSPs were with us all along. They were right here with Michael.
It was a Sunday evening, and after sitting with Michael for over 12 hours, I finally realized I needed to go home. He kept slipping in and out of sleep, and I’d said everything I could think of. I reminded him of the camp he liked as a kid, of the fun places we had visited. I listed all of the people who loved him. I told him we were proud of him and everything he had accomplished.
He loved TV and it was on 24/7. After he fell asleep, I changed the channel. I couldn't watch 1970s reruns for one more hour. I found a rom com with Jennifer Lopez and Matthew McConaughey. Within a few minutes, Michael woke up to a scene where they leaned into kiss. His eyes suddenly opened, he sat up, squinted his eyes at the screen, smiled, and said “Ahhh.” Then he plopped back onto the pillows and fell back asleep. I slipped out of the room.
Soon after, he passed away, holding the hand of a lovely young hospice worker named Melissa.
We are Grateful for the DSPs in Michael’s Life
Family members aren’t always aware of what dedicated DSPs are going through in their own lives while helping our loved ones. It might be a spouse losing their job, or challenges raising children while working long hours. A favorite DSP at the group home who had moved on to another job couldn’t bring herself to come and see him. That’s understandable and it’s alright.
Here’s what the DSPs in Michael’s life did that were meaningful to us:
- Interacting with the hospice team and not being shy about asking questions or showing emotions. This wasn’t the time to embrace the “never let them see you sweat” philosophy, and they didn’t.
- Visiting him at the hospice lodge and bringing his housemates.
- Walking with his housemates through the emotions that come with living with someone who is dying, encouraging them to draw or say out loud what was bothering them.
- Encouraging housemates to speak at his funeral and stand beside them while they do.
- Remembering to talk about the person after they’re gone, encouraging everyone to laugh, cry and even bring up whatever about the person may have annoyed them.
Our thoughts for family members in this situation…
- Involve the caregivers fully in the process.
- Know that involvement may vary.
- Try to understand that we don’t know where anyone is in their own life’s path when it comes to grief; embrace the hospice worker’s philosophy of “there’s no wrong way.”
- Be grateful for whatever level of investment there is and don’t take anything personally.
When we witness DSPs and caregivers who are willing to help with end-of-life care, we realize what is petty in day-to-day living. They’re taking the baton from the parents and the family.
For our family, DSPs were with us all along, angels in their own way. They were right here with Michael.