Everything that a person with diabetes does requires thought. Every action requires planning. Getting up involves testing blood glucose levels to see if you can pee or if you need to have insulin or food before your first trip to the washroom.
Eating food requires a math lesson–how many carbohydrates are in whatever you/your loved one plans to eat. Now, how much of that is fiber? Okay, how much fat or protein is in the meal? What is the anticipated activity level for the next four hours? What was the blood glucose reading before sitting down to this meal? When was the last time that insulin was taken? Is there still some insulin floating around in the body that has to be taken into account? What time of day is it? How much insulin to you normally use at this time of day to cover a pre-established amount of carbohydrates? Is there any illness or stress that is impacting blood glucose levels at the moment? After all of these questions have been answered, the totals added, subtracted, and divided, an insulin dose may be given…and you pray you go this one right.
This procedure is repeated every time a person with diabetes wants to eat anything that has any nutritious value…every time.
Going for a long walk or working out is just as an intense of a process. A person with diabetes must make sure that they have their supplies handy. Do they have enough glucose if they feel themselves dropping? Have they taken just enough insulin to avoid a high but not enough to cause a low when physical? Have the changed their insulin delivery for the next ____ amount of time to deal with the post-exercise drop and the adrenaline during the event? Do they have enough test strips?
That brings us to simply walking out the door. People tease me about my purse. It’s a suitcase. Even though my son with diabetes no longer lives with me, I still tend to carry a massive purse. Once upon a time it had to carry glucose tablets, juice boxes, crackers, test strips, needles, alcohol swabs, hand sanitizer, and medical tape to name just a few items. No matter where my son goes, he has to bring his insulin pump, meter, test strips and glucose. His pockets are never empty.
Imagine the burden of having to remember all of this “stuff”. Imagine the burden of having to remember to test, to bolus or inject every time you want to eat or nibble at something. Imagine the stress of having to worry how a meal will impact your blood glucose levels. Imagine having to worry about how that exercise will impact your body while you sleep. Imagine having to worry about going low while you drive. Imagine having to worry about how that beer will impact your readings later on this evening. Imagine simply being afraid to go to sleep because you might not wake up.
Everything around diabetes requires thought. I worry about the toll that that can have on those living with diabetes like my son.
As a parent of a person with diabetes, how do I survive? It has its own challenges. When my son was small and for all of the years that he lived at home with me, I survived four hours at a time. I realized that I could only control four hours–the amount of time that his fast acting insulin was supposed to be working. If my son was in range from 7-11am, I would be happy. I would put the potential high at 2pm out of my mind. For that moment, I would bask in the glory of getting it right for 4 hours.
Later, I would move on to the next time slot. Four hours is a relatively small period of time but in the world of diabetes, it can be forever and celebrating getting it right is a wonderful thing.
My son doesn’t live with me at the moment. That has changed my role dramatically. At first I was stressed out completely. He doesn’t look after himself the same way that I do. Would he test at night? Would he stay up or set an alarm to re-test? How would he handle it when he needed to make changes? How would he manage going to appointments? How would he handle stress? How would he manage alcohol or girls? I was too far away to monitor and he quickly pushed me further to the fringes.
As I was pushed away, I learned that this was his disease. He had to find his way. I was there when he had a question. I was there to encourage. I am still there to remind him of what he does know. I am there to watch him learn from a distance. It is hard. It is also very freeing and that leads to a lot of guilt. I can now turn off diabetes in a way. I don’t think about it 24/7 but he can’t and I can’t change that.
I worry about him. He has been dealing with diabetes for his entire life. He has no memory of life before needles and testing. He is quiet. He doesn’t discuss diabetes with people. I fear he will burnout. When he is with me, I help with some of his care. I allow him to choose how much help he wants.
So how do you handle the mental side of diabetes? First, four hours at a time. Don’t overwhelm yourself with the entire day, just look at the next four hours.
Second, ask for help. Whether you are the primary caregiver or the person with diabetes, ask for help, accept help. You need a break. Life with diabetes is not natural. It is stressful and crazy. Take a break by handing the reins over to someone else if only for a task or two. They won’t mind and you will be able to breathe.
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