Larsen Syndrome

Each morning, millions across the nation help expedite morning routines for people they love. Parents rouse sleepy children, cook breakfasts, and pack up belongings for the day ahead. In other cases, it’s the children who lead the routine – adult children. We are home caregivers to loved ones who require assistance for a variety of reasons, such as illness or disability, advanced age, or deteriorating health. And with increasing frequency, there are people who operate at both ends of that spectrum. Often known as the sandwich generation, this group cares for aging parents while supporting kids. For 19 years, I’ve served as the caregiver for my son Jalen, who was born with Larsen Syndrome, a genetic disorder impacting the development of connective tissue and many bones in the body. I also recently became a caregiver for my 91-year-old mother Ellen, who moved into my family home near Columbus, Ohio. Homecare has long been a part of my professional life as well. And while my career and nearly two decades of caring for Jalen did help prepare me for the experience of becoming my mom’s primary attendant, each journey is different. There are no “typical” standards or expectations that can be uniformly applied to the caregiving experience. Regardless of the situation, however, there are a few important tenets all caregivers should keep in mind. Specifically, anyone in this role would be well-served to take three key factors under advisement: one, observation and research; two, work to understand exactly how much help someone needs and how to best provide it; and three, utilize technology to maximize the impact of your efforts. Observation and research Caregivers must commit to a lot of learning during their journey. Providing support for a child with a chronic condition means looking into resources and options for every part of Jalen’s life, including his medical care, education, financial assistance, mental well-being and social needs. Medical research will always be necessary, but for most caregivers, there’s a lot more at stake. Larsen Syndrome affects the body but not cognition, so Jalen’s education and inclusion in a nurturing, accessible learning environment were priorities. There’s also the exploration of mental-health resources to support both the person and their caregiver. It’s difficult to recognize the basis for stress as a caregiver who’s constantly focused on the next task, leaving little time for the evaluation of personal well-being. Jalen is now a freshman in college, majoring in computer science. He lives in a dorm and enjoys keeping his own schedule, spending time with friends and attending classes. A lot of research was required before Jalen chose a university. Since his chosen school is rated as one of the top 10 in the nation for people needing physical accessibility, it has afforded him independence and is setting him up for success as he lays the groundwork for a career. When it comes to my mother’s care, I’ve faced new research tasks, which differ significantly from those required for Jalen. Each caregiving experience is different, and that’s why it’s crucial to understand exactly how much help someone needs and how to best provide it. Understand and offer the right type and amount of care With my son, the objectives for his care varied from what I’m working toward with my mom. As a child who has always required extra care at home, Jalen was accustomed to my involvement as part of the only routine he had ever known. Our family has always worked toward and encouraged his independence, continuing to offer support as he aged but also becoming more of an adviser. He learned from me as he prepared to live his own life. However, older adults are typically near the end of their independence continuum, and the goal is to help maintain it. Caregivers must look to the people they’re caring for to determine the size of their initial roles and then gradually increase or decrease efforts as needed. It’s important to ensure a loved one has everything needed to be comfortable, but avoid offering too much assistance. If caregivers provide more help than necessary, it can lead to over-dependence as the person cared for becomes accustomed to having everything done for them – even tasks they could still manage. Have frank conversations with anyone you’re caring for to understand their preferences and determine exactly where they are in terms of needing assistance. A trial-and-error phase is often needed as the caregiver and the person cared for settle into a routine. My mom and I are still determining the shape of my role, and I don’t want to overwhelm her by intervening too often. Helping too little, however, can result in mom becoming frustrated and experiencing negative outcomes. I regularly utilize technology to give both Jalen and my mom more independence while easing my own mind and workload. Caregivers can explore and consider various technological solutions that align with their needs and circumstances. Support homecare efforts with technology Researching technology resources and the ways in which they can support caregiving efforts is essential. Prioritize the health and safety of older individuals with “smart” devices, such as monitoring systems, voice thermostats, video doorbells, and GPS watches. Utilizing these tools can cultivate a sense of self-reliance in those receiving care and provide caregivers with breaks. Technology also helps with daily communications, social connections and errands, such as shopping and even medical appointments. Thanks to telehealth options, online grocery orders, and social media, caregivers and their loved ones can operate efficiently from the comfort of home. Jalen enjoys technology, which influenced his decision to go into computer science. Our cell phones and email keep us connected and can help anyone receiving care feel like they’re in touch with their community and support network. My mom is mostly unfamiliar with technology, though she enjoys viewing digital photos as soon as they’re taken and insists they be posted to Facebook, giving my family a few laughs. Above all else, caregivers must trust their instincts and acknowledge their own incredible efforts to keep their loved ones safe, happy and healthy. Those in nurturing roles offer an unequivocal level of love and support – which is easy to forget amid the day-to-day grind. What you’re doing is enough, and it’s more than most people have. The decisions caregivers make and the support they provide make a profound impact on another human being’s life. Taking responsibility for someone’s ability to thrive in the best way that they can means listening to yourself. Give yourself grace, and know that your natural intuition is typically right.