I often sing to myself the lines, “Take good care of yourself, you belong to me.” The one thing we as caregivers need to make sure we do is take care of ourselves.
I’ve spoken to many parents over the years, and time and time again the subject of caregiver burnout and stress comes up. It is so important that we take time for ourselves. It isn’t selfish. It is a necessity. A person who is stressed out and sleep-deprived is more prone to making mistakes. And with our loved ones, it could mean life or death.
I know many of you are afraid to leave your child for any period of time. The most important thing is to find someone you trust, whether it’s a spouse, best friend, nurse, or sibling. I find that the people I trust with our daughter turn out to be way more careful and vigilant than even I am. They are so worried about doing something wrong that they are almost hyperaware. Even if you let someone take over long enough for you to get out and take a long walk, it will do you wonders.
The person you’re caring for needs to see you in healthy relationships. They need to see you take time for yourself. It is a necessary step towards teaching them independence and to make them comfortable being cared for by someone else. They also may start feeling guilty because you are giving all your time to them and not taking care of yourself.
Don’t be afraid to ask for help. It might surprise you how much help people are willing to give. Nurture your friendships. It is so important to keep in contact with your friends and family. I realize that it’s hard, but it is vital to your own health. If you push people out, don’t allow them to help you, don’t make time for others in your life, you will be left alone. That is not only sad for you, but also for the person you are taking care of.
One thing I make sure I do is have breakfast with my girlfriends at least once a month. I’m also in a monthly wine club. The first time I went was 2 days after diagnosis and 10 years later these onetime strangers are some of my closest confidants. I also have friends that pop over for coffee or a glass of wine. I do work part time, which guarantees I get out of the house for at least a few hours. I know that is not an option for some of us, but even volunteering a few hours a week will not only get you in contact with the outside world, but will also make you feel great about yourself and help your community.
The love for the people we care for knows no boundaries. The guilty feeling of doing something for you must be overridden. You are not a bad person for taking time for yourself. There are others around you that are willing to help if you just open up and ask. Our church has people always willing to help. Other parents at school are always offering to “learn” how to take care of our daughter so that she can be with her friends for play dates, sleepovers, movies, and other common activities for children. The plus side is that when she is with them, I get time to myself. I’ve even had a friend build a ramp so that their house would be accessible. You never know what people are willing to do if you aren’t willing to relinquish a little bit of control every now and then.
Set small goals for yourself. Get out of the house once every week to take a walk. Get coffee with a friend. Go to a bookstore. Get your nails done. For dads, go have a beer with the guys. Go to a ball game. Anything that is fun and enjoyable for you. If at first you are afraid to leave home, have your friends come to you, but have your alternate caregiver be in charge of overseeing care.
You owe it to yourself and the person you are caring for to take care of yourself. Like the song says, “Take good care of yourself, you belong to me.” If you don’t take care of yourself, you won’t be here to care for them.
People will talk about kids. Little kids will ask them questions. Adults will ask them question. Some will just point and stare. Cute little kids in wheelchairs are hard to resist. Teaching your child how to handle these interactions with strangers will make these interactions a lot less stressful, and even fun.
It is hard. I cannot lie. It is hard dealing with SMA. It is hard not knowing at all what your child is going through. It is hard “not getting it” over and over again. We are so committed to our kids, but we cannot always help them ourselves.