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Caring for Children With Medical Issues Gets More Complicated When They Become Adults

Organization creates C.A.R.E. Binder to assist in the transition to adulthood

By Randi Mazzella

While raising a child with severe medical issues is challenging, it can get even more complicated once that child reaches adulthood.

Shannon Cloud's daughter Alaina is 19 years old and has Dravet Syndrome (DS), a rare form of epilepsy. Cloud, 48, of Atlanta, explains, "There are a host of things that I needed to do when Alaina transitioned to adulthood. We had to find new doctors who treated adults and programs to keep her engaged and active once she was out of the public school system. Also, because Alaina will never be able to live independently, I must prepare for a time when my husband and I can no longer care for her."

Silhouette of a woman looking out of a window. Next Avenue, caring for children with medical issues
"My worst nightmare is that I outlive my child, but my second biggest fear is that he has to live without me here to care for him."  |  Credit: Getty

Parents and Caretakers

Karen Groff understands what Cloud is going through. Groff's son Danny, now 38, has Lennox-Gasaut Syndrome (LGS), another rare form of epilepsy. "It can be an emotionally draining time," Groff says. "My husband and I are supposed to be in our golden years, but it is hard to enjoy this time. My worst nightmare is that I outlive my child, but my second biggest fear is that he has to live without me here to care for him."

"I must prepare for a time when my husband and I can no longer care for her."

In addition to being mothers and caretakers, Cloud and Groff work in patient advocacy. Cloud is the patient advocacy director of the Dravet Syndrome Foundation and Groff is the board president of the Lennox-Gasaut Syndrome Foundation.

These two organizations partnered with UCB, a global pharmaceutical company specializing in developing medicines and solutions for people living with epilepsy, to create the C.A.R.E. Binder, which stands for Caring for Adults with Rare Epilepsy. The C.A.R.E. Binder is an interactive digital resource that offers checklists, planning guides and personalized advice to ensure that caregivers are well-prepared and supported during the critical transition to adult care for loved ones with rare epilepsy syndromes. 

The C.A.R.E. Binder is a way to decrease stress for parents as their children transition to adulthood and continue to need care as adults. The binder provides a blueprint of the many things that need to be done. Groff explains, "The binder is divided into sections, including Conversations, Daily Living and Long-Term Caregiving. While there is a lot to think about, tackling a little at a time can make the process more manageable."            

For example, both Cloud and Groff had to apply for guardianship of their adult children. "People don't realize the amount of paperwork required to obtain guardianship," Cloud says. "Once it's in place, it must be re-done yearly even if nothing has changed. It is all very complex, and hiring a lawyer to help can be expensive."

"Many doctors aren't used to having a parent having to continue to speak on an adult child's behalf."

Another issue is a change in medical care. Cloud explains, "Many of Alaina's medical team, such as her dentist, can only see pediatric patients. So, when she turned 18, I needed to look for an adult dentist, which is not a simple process. It took time to find a dentist with the patience and understanding to treat Alaina as she has the mindset of a 4-year-old. Also, many doctors aren't used to having a parent having to continue to speak on an adult child's behalf."

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Looking Ahead

Right now, Groff and her husband are healthy and able to care for Danny, but they know that may not always be the case. Planning for the future meant having a serious conversation with their adult daughter, Jessica, 36. "Jessica was just an infant when Danny was diagnosed," Groff explains. "His medical issues have always been a part of her life. They are very close. She loves him, and she worries about him."

Before Jessica married, the Groffs sat down with their daughter and future son-in-law to have a heart-to-heart about Danny. The young couple offered to care for Danny when her parents could no longer. "Their loving offer touched us," Groff says. "But no one can understand what it is like to take on Danny's full-time care unless they have lived it. Feeding, bathing, entertainment – providing 24/7 care. It's not the life that I want for them."

Instead, Jessica and her husband will become Danny's guardians, not his caregivers. "They will be the ship's captains, making sure that he gets the care he requires," Groff explains. "Even though it is hard to think about the future, it's a little easier knowing that they know when the time comes what our wishes were and that they are doing what we asked."

Seeking Support

"There are many resources and support groups for rare epilepsy where you can get advice and information," Cloud says. "Whether in-person or online, it is great to connect and network with other parents who understand what you are going through. Support groups are beneficial in offering advice, understanding and a safe space to be vulnerable to your feelings."

However, it can be overwhelming for some parents who are beginning this journey to look toward the future. Just getting through the day-to-day can be daunting, and in many cases, the prognosis may be for the child to have a shortened life expectancy. "They are scared and may not want to see what is ahead for their child and them," Cloud says.

"There is so much to do in preparation for the transition to adulthood. It is best to get started when the child is 12 or 13 years old. It seems far away, but it happens quickly."

While not wanting to look ahead is understandable, it can be a disservice. Cloud says, "There is so much to do in preparation for the transition to adulthood. It is best to get started when the child is 12 or 13 years old. It seems far away, but it happens quickly."

The C.A.R.E. Binder is a free, 140-page interactive digital resource anyone can download. While the binder was explicitly developed for caregivers of children with epilepsy, much of the information included can be beneficial for anyone who has a child who will continue to require care into adulthood. Since its launch, 15 other organizations have requested approval to post it on their website. "It is hard to know where to begin, and the binder makes it a little more manageable," Groff says. "You don't have to tackle everything all at once. It's better to do a little at a time."

Groff and Cloud stress the importance of caregivers spending time on self-care which the C.A.R.E Binder addresses in a special respite and self-care section. Groff says, "You can't do all that needs to be done or fight effectively for the things your child needs if you are running on empty."

Randi Mazzella
Randi Mazzella is a freelance writer specializing in a wide range of topics from parenting to pop culture to life after 50. She is a mother of three grown children and lives in New Jersey with her husband.  Read more of her work on randimazzella.com. Read More
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