She is Non-compliant
She is non-compliant those were the words the nurse spoke of my mom’s new roommate to be. How is she non-compliant I asked? No answer of course, but this was 1979 and the nurses who knew mom well spoke in hushed tones about it and the young lady was candid when she talked (which was not often).
She was the daughter of divorced parents, who were themselves a power couple. Both remarried and he was still a very public and powerful man. Her mom, while more obscure did not fall out of the social realm when she remarried. Mom and dad were not really amicably split, and the daughter my mom’s new roommate was angry. You could see it on her face. This young lady was angry at her dad, angry at her mom, and really angry at the world. She was 17 and had diabetes for the 13 of those years. Being with power parents, she was sort shuffled, nannies, Washington, the city, divorce, remarriage, teen years, it was a source of her rebellion.
I was 22 and married and I hope my wife will not mind to much if I say she was very attractive. But also attractive in a way that let you know most men her age were clearly not on her pay grade. She had this sort of princess and a pea thing going on. Mom said she intensely disliked injections and complained often about food, the bed, the noise, the everything. She did not have many visitors or so my mom said. I saw her mother twice and her father once, but I was not there every day, so unlike my mom who had my dad bedside every evening, I really did not know who came in and out every day.
Mom learned she had the advantages, far away camps, diabetes camps, special doctors, nearly everything provided. Yet, she was non-compliant. As I understand it her specific issue was taking insulin. She did not like doing it and sometimes refused when the nurses brought it in. This long term diabetic was happier if someone else injected her, and often screamed when they did.
I realized I was a new comer compared to her but well I took insulin, and didn’t scream. Mom, who had a few years on her, took insulin and did not scream, so I figured her pain threshold must be pretty low or ours, moms and mine, must be pretty high. Honestly I thought then and now that the injection was not the problem. Trouble is they were not treating her for the problem. Sure they had these incredible doctors everywhere, but none were what I thought she really needed.
Mom was racked with issues. On this particular trip to the hospital they suggested for the first time that mom may have gastroparesis. A new word for us (dad and I) but one we would learn way too much about in a few short years. Mom was racked with infection and during that stay she had some difficult medical procedures performed to try to beat it back. Knowing mom, and mostly dad, were to ready to give a dose of pain meds at the drop of a hat, those were mostly out of the question. Her systems declined like usual and rallied like usual and once out of ICU we were traveling to this room where the young woman awaited.
The idea I believe was to show her what non-compliance can look like. It was ugly and anyone who looked at mom had to know that if this was the outcome, being non-compliant was not a good answer. But, well never mind mom was mostly complaint, she looked the part of on the rocks so it was decided to maybe let this young woman see her eventual outcomes. Besides mom was nice, laughed a lot with the nurses, and most to them wanted her when they were working in the new diabetic ward.
So why was she non-compliant? Well like I said she did not like needles and she refused to give insulin. This trip was her forth DKA in her young life. I forget the blood sugar she achieved but it was astronomical. Her parents, when I was there, pleaded with her to take her insulin. Mom was living proof what could happen when diabetes racks your body. Nurses tried to get her to inject herself. The tug of war went on for several days.
Eventually she became compliant enough that they let her out of the hospital. Mom got a new, this time more congenial older roommate, and in due course mom was patched up and went on her way. Mom passed in 1986 but always talked about that young woman. After moms passing Sheryl and I noticed in the local newspaper some years later that the young lady had also passed. She was in her early 40’s married, and her obit asked for donations to the ADA. After all it said, she had fought a courageous fight in long time battle with diabetes. It mentioned nothing of her long time fight with the other demon that haunts many children who have the disease, depression.
In this month’s Diabetes forecast, it says as many as 9-25% of children with diabetes also have significant and often untreated depression. I know I did and do. Often times we attack the ills of these young people with drugs, and equipment. Maybe, just maybe, we should learn to attack their issues with therapy as well? Sometimes an ounce of prevention can produce a lot more than a pound of cure.