The role of caregiver is a sacred responsibility. Caring for someone whose well-being rests solely upon you is an incredibly meaningful job. And it is a necessity, as there will always be a population that needs caregivers. Almost everyone at some stage in their lives requires someone to care for them.
Some are naturally suited to be caregivers. They are born with a nurturing instinct and are drawn to those who need help. Others have experienced a life event that has forced them to fulfill this role. I have witnessed both types of caregivers due to my child, Abby, who has a terminal illness called Sanfilippo syndrome.
Sanfilippo syndrome presents like Alzheimer’s but in children, and there is currently no treatment or cure. Over time, all abilities decline until they are gone, and the body shuts down. Obviously, these children need caregivers.
Abby’s need for a full-time caregiver started a few years ago. Her caregiver team includes me, my husband, Jeff, Abby’s sister, Emily, and her full-time caregiver, Aly, who watches Abby during the workweek. Various family members and friends help out at times, too (when there is no global pandemic).
Emily has learned to be a caregiver out of necessity. She grew up with Abby and has never known any different. But it has positively shaped her character. Emily has always sought out the kids who don’t fit in or need extra help. She has grown into a caring, loving person who genuinely wants to help others.
She will soon start her first full-time job teaching first graders. I am confident that caring for Abby has enabled her to positively affect students in her classroom.
Caregivers commonly possess an instinctual emotional skill set because they put someone else’s needs before their own. This requires selflessness and a sacrifice of time and energy, which can be challenging due to its cumulative effect over long periods.
Caring for someone (in addition to yourself) can be physically and emotionally draining. This is especially true when the person being cared for is very fragile or exhibits challenging behaviors or symptoms, even when they aren’t within their control.
Caregivers need to be aware of their own needs, too. They should take time for themselves to restore and renew. This sometimes must be intentional, because caregivers don’t always factor their own well-being into the big picture.
It is different for everyone — some need time each day, while others may require an entire day or weekend. The important thing is for caregivers to realize they can’t help others if they don’t also care for themselves.
Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.
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