If you have ever been on an airplane, you have undoubtedly heard the flight attendants instructing parents with children to secure their own oxygen masks first before putting the masks on their children. Parents natural first reaction is to protect their children; however if the parent loses the capacity to help from not having enough oxygen, the children are at greater risk.
This not-so-subtle metaphor is applicable to all parents of T1D children. You must find a way to take care of yourselves, too. Have a massage once a week, take a long bath once the kids are asleep, or dedicate one hour a day to something you enjoy. You will benefit from the relaxation and so will your children.
Parents
The Trifecta
Most parents of T1D children experience the trifecta: sleep deprivation, depression, and guilt. I remember the first time the diabetes educator said we would have to monitor blood sugars in the middle of the night as well as all day. My reaction was one of disbelief and I remember asking myself, "How do people live like this?" My sister once remarked that interrogators use sleep deprivation as a means of torture. And sometimes, I must admit, it does feel like torture. As it is, many of us sleep with one eye open because we are terrified of unexpected nighttime lows. Then there are the sleepless nights due to your child's highs caused by growth hormone, illness, stress, weather, etc. And then, because we have treated the high blood sugar, we have to check later to make sure a low doesn't occur from the correction. Unfortunately, for many of us, not getting enough sleep just comes with the territory and can lead to depression.
Although lack of sleep can lead to depression, many parents experience depression because of the T1D diagnosis itself and/or the stress of daily management. It is also worth noting that all your children can become depressed. Watch for the warning signs in both yourself and your children.
Symptoms of depression include:
- Persistent sad, anxious or "empty" feelings
- Feelings of hopelessness and/or pessimism
- Feelings of guilt, worthlessness and/or helplessness
- Irritability, restlessness
- Loss of interest in activities or hobbies once pleasurable, including sex
- Fatigue and decreased energy
- Difficulty concentrating, remembering details and making decisions
- Insomnia, early–morning wakefulness, or excessive sleeping
- Overeating, or appetite loss
- Thoughts of suicide, suicide attempts
- Persistent aches or pains, headaches, cramps or digestive problems that do not ease even with treatment
If you or your child is suffering from depression, seek professional help. Treatment may be as simple as joining a support group, exercising regularly, or taking up yoga. And for more severe cases, antidepressant medications may be prescribed. Either way, depression is fully treatable.
Note: Read about chronic sorrow in the Journal of Advanced Nursing. It may apply to you.
Since my son's diagnosis I have carried around the most profound feeling of guilt. Every medical professional in my son's life has tried to reassure me that there was nothing I did to cause this condition and there is nothing I could have done to prevent it. Yet every mother I know in my JDRF support group feels the same sense of relentless guilt. We all know our guilt is irrational, but that doesn't seem to help. One mother, with a 40-year old T1D daughter, said she still feels a sense of guilt even though she always did her best.
Another mother with a T1D child wrote about surviving this guilt. Follow the link to read her suggestions on coping with this constant companion.
Parenting
A working mom once remarked that parenting was the toughest job she ever had. Add T1D to the mix and parenting goes to a whole new and gut-wrenching level. I was told the "4 Be's" of parenting several years ago. I don't know where they came from originally, but they have stood the test of time. And best of all, they apply to every kid, T1D or not.
- Be fair
- Be firm
- Be loving
- Be consistent
Manipulation is a common behavior we parents face from T1D children. Whether the child is a tot or a teen, kids learn how to push your buttons and play on your sympathies. Our son, at the age of three, was faking severe lows. When he didn't like something I said, he'd wait a few minutes and then roll his eyes back and collapse to the floor. One family member who witnessed this performance said, "That is the meanest thing I've ever seen." We sought the help of a child psychologist who recommended that we simply walk over and test him all the while saying that he was a wonderful actor. This approach seemed to diffuse the situation. However, I was always tempted to use my mother's suggestion which was to throw cold water on him.
Teenagers, so I'm told, are very similar in that they aspire to be masters of manipulation. Parenting a teen is a big enough challenge what with all the rebellion, hormones, and driver training going on. Add the constant care and treatment of a life-threatening condition your teen must manage--and sometimes doesn't--and you have the recipe for a parental mental meltdown.
Here are some sources that will hopefully help you weather these years:
The Siblings
Or should we just refer to them as our kids left to their own devices? It is an unfortunate fact that the vast majority of our time and attention is granted by default to our T1D child. We are so caught up testing, bolusing, etc. that it is easy to lose sight that our other children need to know they are just as important to us. And beyond the resentment or hurt they feel because of our inattentiveness, many live with the fear that they too will be diagnosed. Some also believe they are relied upon too much in managing the condition. One sibling I know feels a great deal of stress and resentment because she cares more about her brother's blood sugar than he does. Her brother's unwillingness to manage his condition is ruining their relationship.
I, too, am guilty of asking my young daughter to tell me if her brother acts funny or goes unconscious while I take a shower. She has also been traumatized by witnessing severe lows. It wasn't that long ago that she climbed up on the counter to get the glucagon because I was holding her little brother as he started to seize. All these kids, T1D children and their siblings, must grow up faster than their peers. As parents we just want to "fix it." And the sooner our children realize we can't, the more heartbreaking for us.
The bottom line is to not forget the needs of our other child(ren). Carve out one day a month when you can spend time just with them. Schedule it and stick to it. Also, try to remember they are as much a part of this condition as anyone in the family. Don't expect too much of them and do try to be sensitive to their feelings. Others have suggested the following:
- Ensure that brothers and sisters know as much as they can about diabetes, and reassure them that they will not "catch" it.
- Answer all questions as truthfully as possible.
- Involve brothers and sisters in any hospital visits.
- Find a job for an interested brother or sister to do - for example to put on a 'show' if some distraction is needed for a blood test or injection.
- Share your feelings with your other children and encourage them to do the same.
- Encourage all members of the family to take blood tests as a show of support.
Source: http://www.associatedcontent.com/article/1595131/how_your_diabetes_childs_siblings_and.html?cat=25
One mother I know was so fatigued she accidentally injected Lantus into the non-T1D sibling. She said as soon as the plunger went down she realized her mistake and called 911. They told her to stop worrying about the sibling because he was fine and to go back to the kitchen and draw up another shot for the correct child. Needless to say, the sibling never trusted his mother again with a syringe in his vicinity.
