My husband and I just returned from the longest vacation we have ever had away from our children – a grown daughter with Type 1 diabetes and an adult son with Type 1 diabetes and autism. It was a spectacular two weeks in Greece and Turkey celebrating our 30th wedding anniversary. Two glorious weeks on no one’s schedule but our own! We could stop or go as we pleased, wander aimlessly through streets and alleyways, eat and drink what we wanted without regard for the daily/hourly demands of diabetes and autism that we deal with every day.
Having children with chronic illnesses and disabilities makes finding time to get away one of the most complicated and emotional things that we do. Unfortunately, that means time alone often falls by the wayside as we attempt to manage our complicated lives. In our case, while many of our peers are becoming footloose empty-nesters, we are not likely to ever have the freedom to spontaneously take off for a week… or a weekend… or frankly, even a few hours without finding someone to look after our son.
What I have come to realize is that finding time away for yourself, as a couple or even just by yourself, is such an important part of being a caregiver. Look at it this way: When you think about the other people involved in your child’s or adult’s care, you expect them to be well-informed, well-rested, not overly stressed, calm and prepared. But how often can you say the same thing about yourself?
“Sure,” you might say, “taking time away to recharge sounds really great, but my child’s health is at risk if I entrust their care to someone less familiar than I am!” I get that. But if you burn yourself out, won’t that also put your child’s health at risk?
That’s why it’s important to involve other people you can trust with the responsibilities of your child’s care. If you remember, there are things that you had to learn, too. Maybe you followed instructions from your child’s medical team, practiced, and maybe you even made a mistake or two as you were learning. But the fact that you learned means that other people can learn, as well, perhaps a babysitter, neighbor, mother-in-law, or sibling?
I spent the three weeks prior to our vacation having one of my son’s caregivers do most of the regular equipment changes and insulin doses so she would be more comfortable and have more practice. We still worried, and we relied on technology to monitor from afar and keep in touch, but we did it!
Here are some of the things I learned along the way:
Find people you trust and train them. They love your child and want to provide the best care possible when they have the opportunity.
Allow for and expect that your caregivers won’t do things EXACTLY the way you do them. Make sure they know the really critical parts and where a little variation in a routine or procedure is not likely to be a problem. If something does have to be done exactly right, make sure you communicate that.
Use technology to your advantage. When my 84-year-old mother struggled with my son’s insulin pump, we had her take a picture and send it to us so that we could help troubleshoot. We also had an app that allowed us to monitor our son’s blood sugars over the phone so that if something critical was happening we could call or text caregivers or an emergency team right away. Video monitoring, Facetime, and other strategies might help to reassure you (be sure to let caregivers know that the cameras are on!) but this is supposed to be time AWAY so try not to depend too much on technologies that make it easy to seem like you never left.
Baby Steps. Even if you can’t marshal the resources to take a long vacation, try to find smaller ways to nurture yourself and your relationships. Do a quick local overnight at a nearby Bed & Breakfast, go to the movies or the salon, take a hike in a local park, go to a museum, or just find a place to watch the sunset. Recharge your battery so that you can continue to provide the care that you need to for your child. When we do better, so do our children.
Joanna Jaeger is the mother of two young adults, one with autism, both with Type 1 diabetes. All along her journey, Joanna has found ways to connect with other families both seeking and providing support. She has been a long-time volunteer with Parents Helping Parents in Santa Clara, CA (www.php.org) providing help to families of children with a wide range of special needs as a mentor parent, advocate, fundraiser and Board member. She is passionate about food, travel, and baseball.