Being a parent and caregiver of a medically complex child can be very rewarding and positively impact caregivers’ lives. However, the feeling of isolation can often overshadow the rewards making the days seem long and the nights endless. Being a caregiver can be emotionally, mentally, and even physically draining. Recognizing those isolating feelings is essential, and knowing how to break through them will help improve the quality of life for parents and caregivers.
Parents and caregivers spend so much time advocating for their child’s needs that they often forget or don’t take the time to advocate for their own needs. At ChildrenFirst, we strive to provide helpful tips and resources for parents and caregivers of children with medically complex needs, including the caregivers themselves.
Sometimes when parents and caregivers are in the thick of things, it can seem like the difficult moments will never end. Feelings of isolation are real, and all parents and caregivers experience isolation. It is so important to know and remind yourself that you are not in this alone. It might not make the task at hand any easier, but knowing you are not alone will help open your world and allow you to breathe.
Every parent and caregiver struggles differently. Each is presented with different challenges, and each child has unique needs. But it’s important to know that others experience the same feelings and emotional tolls as well.
Parents and caregivers of medically complex children sacrifice their time to provide their child the best support. Days spent in waiting rooms, bathing, changing ports, planning meals, and sorting medications take a caregiver’s time. It can become exhausting. It isn’t easy to put effort into finding time for yourself aside from being a full-time caregiver. But it is crucial! Not only is it essential for you but your child as well. When you take the time to care for yourself, you will have more energy and mental space to care for your child. Everyone needs time to recharge their batteries. Look for resources for respite care in your area. Respite care can be life-changing for families. Finding time for yourself can be as big or as small as you’d like, and can make it. Here are some tips to help refresh your mind and yourself.
If you can take 10-15 to have some quiet time away, do it! Every day is the goal but if that isn’t realistic, try to aim for a few times a week. It can be anywhere. Bedroom, kitchen, front yard, sitting in the car. It doesn’t take much planning or prepping. Just a simple step away from the day-to-day to quiet your mind and escape into something bigger than yourself. Play music or listen to a relaxing and uplifting podcast. Close your eyes, focus on breathing, and separate yourself from the world around you for a moment or two. Your mind and body will thank you!
We don’t mean another informational text about diagnosis, therapies, or medical studies. Take some time to escape to your favorite fictional world. One page or a whole chapter is fine as long as you’re resting your mind and allowing yourself to escape your reality for just a moment or two.
It’s incredible what writing a thought or two down will do for your state of mind. There are so many ways to journal. It doesn’t have to be complicated or extensive. You can write a few sentences about your day or how you feel. Or you could go into detail about what you ate, who you saw, how you felt, and your highs and lows for the day. It’s essential to focus on the good parts of the day. It’s also gratifying to look back and see how far you and your child have come from previous journal entries.
Preferably alone or with a close friend. Leave the kids at home if you’re able (safely and supervised). Turn your mind off and enjoy what nature has to offer you.
There is nothing like closing your eyes and soaking in a nice warm bath with soft music.
This one requires a little more planning ahead of time. Massages can really help with any physical stress and allow the mind to relax. Treating yourself to a manicure or pedicure is a great way to invest in yourself.
This one will take a lot of planning and isn’t always doable. If you can escape for a few days, seize the opportunity and do it! If not, you can always take a mini staycation for an evening or night.
There are so many things in the world of the medically complex that you cannot control. You want what is best for your child and your family, and some days it may seem like there are so many hills to climb and obstacles in the way. It would help if you remembered to focus on the things you CAN control. In every difficult situation, so many things can be accomplished within your control. Do what you can when you are able and when it is needed. Focus on the day’s success. Talk to a friend who understands and can help you get through your situation.
Finding a support group or creating one in your area for parents and caregivers of medically complex children is a great way to feel connected to your unique community. This alone can break the feelings of isolation tremendously. If there isn’t a group to join in your area, it’s never too late to start one! Reach out to other parents you often see in hospital waiting rooms, doctor’s offices, and therapy waiting rooms. Get involved with other parents and caregivers at your child’s school. Together we are stronger. The old phrase “it takes a village” rings true, especially within our particular community. Talking with others about you and your child’s unique journey and daily highs and lows will help you to connect with others in similar situations. Within a “typical” society, it can often seem like your everyday “normal” is far from the average person’s every day. But when you have a group of people who share similar daily highs and lows, your “normal” seems to become much more manageable. Cultivate healthy friendships, and you will begin to watch your community grow and thrive together. It will benefit you, and your child will get to know and become friends with children in similar situations, which makes their friendships more fulfilling and creates a sense of belonging and understanding.
When comfortable, share your experiences! You never know who else might need to hear it. So many parents and caregivers of children with medically complex needs are looking for connections. Give tips and advice when appropriate. Share your funny stories to brighten someone’s day. Saying what you have done or experienced aloud helps you to let it go. It will sometimes allow you to view a difficult situation differently.
Our medically complex community is a community built of strong children, parents, and caregivers. When we come together to share our experiences and build each other up, it breaks the walls of isolation and helps one another cope with situations that seem too much to manage. Continue to be excellent and reach out to others in your community. It will make a world of difference!