Erin Croyle

Parenting Special Needs Magazine

Inviting strangers into our homes to care for our children is both a blessing and an ongoing challenge. It’s time we talk about the quiet truths of caregiving and how families can make it work.

Fellow parent/caregivers – can we please take a moment to address the elephant in the room: It is extraordinarily awkward and often uncomfortable to have paid caregiving staff in our homes. 

How can it not be? We’re welcoming strangers into our most personal of spaces to care for our child. They’re assisting us in our most intimate and vulnerable moments. They have a window into our lives that even our closest friends and family members are not privy to. 

We don’t say this quiet part out loud because we’re so desperate for help and we recognize how lucky our child is to have this person there to help. Between waiver waitlists and support staff shortages – how dare we complain when we’re one of the lucky few to have access to this unicorn!?! 
By not talking about it, however, we’re doing everyone a disservice.

The more we understand each other’s struggles the more we can unite to change things for the better. 

We’re stuck in a cycle of being forced to cobble together our own circles of support. Out of necessity, we create flexible work schedules or leave the workforce entirely. This is often the case even if a child has access to services since it’s nearly impossible to find quality support staff and keep them on for extended periods of time. Low pay and few to zero benefits makes growth and retention in this field impossible. 

It’s not uncommon for parents to apply for a Medicaid waiver and then wait anxiously for YEARS. When the stars finally align, we’re afraid of letting our elaborate house of cards fall. We keep it all together because we’re far too aware of how precarious disability services are.

We’re training a revolving door of strangers who we’re supposed to trust with our beloved, vulnerable child. It’s a constant, stressful, heartbreaking process. Acknowledging that is important.

Thankfully, there are some things that can make it easier!

• Identify Dealbreakers – Falling asleep on the job? Staring at their phone constantly? Send them immediately! When your child’s safety is on the line, it’s important to draw the line when needed.
  
• Provide Clarity – Needs vary from child to child and whatever life stage they are at. The blanket training that support staff receive does not. Filling them in on the nuances of not just your loved one but the rhythm of your home will help them help you.
  
• Less Can Be More – Some youth and adults with disabilities need someone nearby, but they do not need staff hovering over them. Let support personnel know that there are times when it’s best to be like a fly on the wall. You barely notice them, but they’re ready to swoop in if needed.
  
• Work Toward Retention – If you strike gold and find someone you hope sticks around, work with them to make that happen. This might mean adjusting your day to accommodate their schedule or utilizing other staff when you can be home and scheduling your time away when your
  child’s A-team is available.
• Plan for the Future – Difficulties establishing support staff force many families to patch together their own system. Then, suddenly their child comes off the wait list and they’re at a loss for how to utilize all of those respite, nursing, or personal care hours. Unfortunately, those hours often come on a use it or lose it basis. As caregivers, our circumstances can change on a whim or a couple years down the line. Figuring out how to adapt to having a helpful stranger in your home now is important.
  
• Explore Options – Where you live and what waiver your child has can have a huge impact on what your options are. Some states allow for immediate family members to serve as paid caregivers. Others allow family members who live outside your home to be on staff. Do some
  digging!
  
• Learn to Let Go – It’s unlikely that anyone can fill your shoes sufficiently. But there are times when good enough needs to be enough. We can’t be our best when we’re giving our all around the clock. And, let’s be honest, our kids probably need a break from us too!