How caregivers prepare for the future of their adult son without them
Carers Karen and Jeff Goff of Columbus, Ohio, are planning a day when they will no longer be able to care for their adult son, Danny.
Karen and Jeff Groff have been reading the same children’s books for their son Danny for almost 40 years.
1 inch tall, 6 feet, 39, Danny Groff sits between his parents on a sofa in Upper Arlington, Ohio, and holds a stuffed Bert Muppet toy. He leaned towards his mother, reading “Curious George rides a bike,” and whispers to smile, “George is curious.”
Danny Groff has Lennox Gust syndrome, a rare and severe epileptic that commonly occurs in childhood. According to the LGS Foundation, approximately 50,000 people in the United States and one million people around the world are experiencing this situation. Each seizure occurs and brain damage can lead to difficulties in learning and other lifelong disorders. Danny Groff suffers from seizures every day, and Karen Groff said he has the ability to develop at a two-year-old.
He also has type 1 diabetes. This means that he can only stay part-time in his adult day program. The staff there are no longer able to distribute the insulin he needs to live. He spends the mornings with his peers and the rest of his time at home with his parents.
Danny Groff has become accustomed to his extended family with morning coffee, daily injections and medication, storytime, afternoon outings, evening “Wheel of Fortune” and Friday “Happy Hour.” He adores a 10 month old nie, Cecelia and Buckeye themed bedroom. The Ohio State University logo adorns everything from his bedding to lamps to wall art.
groffs knows that it cannot always be like this, but their son cannot talk about his future. Currently, both 66 and retired educators are planning two outcomes that Karen Groff said were equally scary.
“Our worst nightmare is that we lose him first,” she said. “And our worst nightmare is that we go first.”
When parents and caregivers die or otherwise cannot provide care to loved ones – whether they are people with disabilities or someone who needs care – that responsibility is inevitably passed on to another friend or family member. Even if you are someone who is caring for a move to the facility with care staff, someone needs to help with the move and monitor their care and finances. A new AARP study found that nearly one in four adults are caregivers, and caregivers are becoming more and more common in the United States.
Groaf is in the middle of the funeral before the three funerals: themselves and Danny’s funeral.
“It’s a little overwhelming,” Karen Groff said. “I won’t die.”
“It’s okay to ask for help.”
Parents of adults with rare diseases often struggle with the ongoing care their children need. Research into rare circumstances is often limited, and many parents, like Gloaf, are uncertain about how to plan for the future.
The 2024 National Rare Disability Helpline responded to approximately 135,000 requests for assistance. Jill Polander, vice president of patient services, said at least 125 of those calls come from parents and guardians who are seeking guidance on how to plan their children’s future each year.
Some families choose residential facilities. Others bring together a team of family, friends and paid caregivers who can provide 24/7 home care. Both options can be expensive – for example, a 2020 report from the National Institute of Disability Research, which, in collaboration with several universities, estimated that households with disabilities should add an average of $17,690 a year.
Groaf said they still understand that.
A 2018 University of Illinois study surveying more than 380 parents of children with disabilities and adults found that half of those parents had long-term plans for who would take over their child’s care. Several people had no plans at all, citing financial constraints and lack of resources. Over 7% of parents in the survey said the topic was either “emotionally loaded” or stressed.
“It’s normal to have these concerns,” the Poles said. “It’s okay to ask for help.”
Find the right help
Similarly, inducing anxiety is the level of responsibility they feel they have to leave behind on their daughters who have their own family.
“We don’t like putting that burden on them,” Karen Groff said.
However, 36-year-old Jessica Hartman said she doesn’t see her brother as a burden. As a special education kindergarten teacher, she said, “All that Danny taught me all of the things I’m using in my career now.” Hartman’s husband agreed early. They’ll be ready to take care of Danny.
Some parents and guardians explain how difficult the duty of care is and find care help from people who understand the level of care they need. Groff is difficult to fall asleep all night and is tasked with everything from first aid to clean up after a seizure. A home nurse helped me for 25 years, but recently retired.
Kenna Pearson, CFO of the Angelman Syndrome Treatment Foundation, has daughter Ashley, who has Angelman Syndrome, a rare neurogenetic disorder. Safety is a major concern, she said. Her daughter is 20 years old and costs 120 pounds. If she falls, she needs someone to catch her.
“We’re not going to attack Care.com for us and spend a date night,” Pearson said.
Hartman grew up with Danny Groef and understands what his care entails. Groffs plans to add Hartman as his brother’s guardian. Still, her parents will not spare her responsibility for his daily needs by lining up nursing staff to take care of him at their home once they die in front of him. Hartman and the other families must help manage their caregivers and his finances to ensure everything runs smoothly.
Danny Groff is just over $600 a month through supplemental security revenues, Karen Groff said. But that’s not enough for him to live. And to maintain government interests, people with disabilities need to keep their assets under $2,000. For now, Hartman is set up to inherit everything his parents own with the understanding that their parents are for the care of their siblings.
“We are about to retire and become very modest.
Building a roadmap for other families fighting rare illnesses
Polander said caring for rare, sick children and planning for the future comes with emotional toll, but many caregivers don’t want to talk to family and friends because they don’t want to “revolve around care, illness, or illness.”
“Parents are very shameful and fearful about this topic, and that’s a taboo like this, even in the world of disability,” said Roselen Reif, a mental health counselor who works with disabled patients and their families.
People with disabilities live longer thanks to advances in medicine, Reif said. Before the turn of the century, many parents of children with disabilities were convinced that they would live their children longer. For some, the sadness came to a relief as it could be seen through the end-of-life care of the child. Parents who need to make long-term care decisions that will extend their lives are in “a more ambiguous place,” Reif said.
Reif said he often rehears conversations with patients about long-term care and helps them write letters to friends and family. Reif said it is most important that the primary caregivers (often parents) are in line with those decisions before they involve others.
Reif also needs to take early on the family of people who are careful not to let parents get involved in the early stages of their next steps and not overwhelm the child.
“We don’t want to lose their parents. We need to move to a new location in the same week,” Reif said. “It makes many of the extremely difficult transitions and losses all at once.”
When her son was first diagnosed, “it was literally scary,” Karen Groff said. She longed for a community to understand her situation and found a Facebook group that helped her many years later.
“You can go there anytime, day or night, and ask questions. Someone will wake up at night and come back to you,” she said. “And you need the feeling that you’re not alone.”
The National Agency for Rare Disability is also offering family-friendly support groups and patient advocacy groups, so caregivers can “talk to those who get it.” As part of your organization’s helpline, you can call takers to connect families with resources that can help with the many issues that arise while arranging care.
Community is important, Karen Groff said. So, as the board chair of the Lennox Gasout Syndrome Foundation, she partnered with other patient advocacy groups and global pharmaceutical company UCB to create a guide for adults to fight rare epilepsy. “Care Binder” is a workbook that helps families organize care, offering suggestions on how to talk to loved ones about the next steps. It also provides legal and financial guidance.
Keep “Uncle Danny” safe and happy
Gloaf is still looking for new home nurses to help them with their daily routine. They said they expect a search to take at least six months due to a nursing shortage that is exacerbated due to professional care for those with seizures.
“I have no luck so far,” Karen Groff said.
Pearson also struggles to find care for her daughter, and said her daughter’s caregivers will almost double what the state pays them. “Some people don’t have that luxury,” she said, but “the quality of care you can find for $11.71 an hour is really low.”
Pearson is also looking for domestic care solutions in case he dies in front of his daughter.
Groaf said he hopes his son is safe and happy. And when he is around people he loves, he is the happiest, “Uncle Danny” to Hartman’s baby, laughing with his aunt and uncle at family gatherings.
“It’s all about the quality of life at this point,” Karen Groff said.
This story is part of USA Today’s Today’s Today Cost of Care series, highlighting caregivers around the country.
Madeline Mitchell’s role in covering women and caregiving economy at USA Today is supported by partnership with extremely and Journalism Funding Partner. Funders do not provide editor input.
You reach Madeline with memitchell@usatoday.com and @maddiemitch_ x.
