Taking Care of You
By Karen Hargrave-Nykaza
We all need people to lean on from time to time when we need a break or are under stress. If you or your child has diabetes, you need that even more. The challenges of raising a child with diabetes go beyond what most people will ever realize or understand. When we were first learning all the things we would need to do for Joel, I found myself at times wanting to list all of those things that need to be done every day to manage diabetes and take care of Joel. I needed other people to understand, and I guess I was even looking for someone to tell me how well I was doing with all the new challenges. Even more important than the recognition that you have learned all of these things to take care of your child’s diabetes and have integrated them into a “normal” daily life, is the fact that you will need a break from doing it all. We all know that diabetes is a 24/7 kind of thing. You don’t get to relax and be off duty at 8:00 or 9:00 at night when your children go to bed. You have at least one more time to test your child before you go to bed, and the ever present possibility of a site change needed, unexpected high or low blood sugar, needing to adjust his pump, give him a midnight snack, etc. It wears you down and without a break, you will become resentful of the disease and possibly even resentful of your child. None of us wants to let the difficult aspects of diabetes take away from our relationships with our children.
So what can we do to take care of ourselves to make sure that doesn’t happen? First, don’t think that you have to do everything all by yourself. You and your spouse should be sharing the diabetes responsibilities as equally as your work situations allow. You should also both have opportunities to get a break from diabetes, especially in the beginning when everything is so overwhelming. Take turns getting away from it until you have someone you can leave your child with and can get away from it together. There are also likely many other people around you who can help you. But for that to happen you have to let them know you need their help and allow them to give it. When your child is first diagnosed, your friends and family will most likely feel as overwhelmed as you do. But in time, like you they will become more used to the daily aspects of diabetes care. Don’t be shy about asking them to help if they don’t offer. They may not be offering because they aren’t sure you would be comfortable having them care for your child. Some of them may not be comfortable doing it, but you will never know until you ask. You can also reach out to other sources for support; parental support groups for parents of diabetic children (often held by other parents, Joslin Centers or local JDRF chapters), Diabetes Camps for your child, Diabetes Family Education programs in your area or surrounding areas. At these groups, you may meet your next most likely source for help getting a break for yourself: other parents who have children with diabetes. Who understands better than they the predicament you are in, the desperate need for a break, and most importantly the diabetes routine, lingo and emergency procedures needed to care for your child? Trading childcare with these parents is a great option.
It is understandable how difficult it is to entrust your diabetic child with anyone but you, especially in the days and weeks immediately following the diagnosis when it is still new to all of you. However, the alternative to eventually allowing others to help you is you doing it all by yourself indefinitely. This is not good for you or your child. It also sends the message to them that they are not safe unless you are the one caring for them. This is not what you want to teach them. We struggled with this at first, but quickly agreed that if we never left Joel with anyone but us, he was going to think he needed us to be kept safe. This seemed to be a sure way of setting him up for major anxiety. We wanted him to learn that he could keep himself safe because he is the one who has diabetes and eventually will care for it by himself. We taught my mother how to help him manage his diabetes so that over the course of two years my husband and I went on two different five-day trips a good distance across the country. We invited her to attend Family Diabetes Education weekends with us, but she learned mostly by being in our home following Joel’s routines with us.
Our close friends did the same thing for us. Our families spend a lot of time together so they have taken in Joel’s routines and learned by observing. My best friend also learned how to do a site change, and more recently she and her husband learned how to use glucagon. I also have a sister-in-law who is a school nurse now caring for two diabetic children and another friend who is a nurse. Both have helped us out with site changes when we needed to be away, or just checking in on Joel. Once you get the basics down, most of diabetes care is common sense. It is also common sense to recognize that you as parents need to care for yourselves too.
dLife's Daily Living columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team to find out what will work best for you.
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