There are a lot of articles that talk about diabetes caregiver burnout.
I’ve been managing my daughter’s type 1 diabetes (T1D) for over 29,208 hours now. More like 29,112 if you take out the days we spent in the hospital when she was diagnosed – give or take a few hours.
A lot has happened in those 29,112 hours. We moved from a syringe and vial to insulin pens. We moved from pens to a tubed pump. We cut the cord and went to a tubeless pump. We’ve used a continuous glucose monitor.
She’s been to sleep-away camp four times and sleepovers countless times.
Her pump failed one time and her blood sugar climbed to over 650.
I miscalculated how long it was going to take for me to make mashed potatoes and I had her bolus too soon and her blood sugar dropped to 26.
I’ve seen her blood sugar fall from over 160 to under 60 in less than 10 minutes.
She’s been incredibly independent and been able to self-manage and maintain her numbers within a range that I am comfortable with. She’s also asked me to do everything for her because she just doesn’t want to think about it.
We’ve changed the settings on her pump countless times.
I’ve sat up some nights just watching her. Sometimes I’ve only slept in increments of 15 minutes to an hour at a time because I can’t make her blood sugar stay over 70.
I’ve educated, advocated, corrected, encouraged, ignored, argued and smiled and nodded. I’ve been patient and sarcastic.
I receive alerts when her blood sugar gets too high or too low. I have alarms set during the day so I know when to check to see if she needs a blood sugar correction, when she needs to pre-bolus her lunch, before she goes to gym and before she gets on the bus.
About half way through 29,000+ hours, I had a significant health issue of my own. And then earlier this year, I had an injury that left me in the hospital for three or four days (I can’t remember how long, my memory of the hospital stay is really fuzzy). I pretty much slept the entire time I was in the hospital (which was really pretty awesome).
In those 29,000 hours, I also went from being in the best shape of my life to the worst.
I monitor her insulin needs and make changes on a regular basis. In the beginning, they only needed to be changed once or twice a month. Now they need to be adjusted more often.
Within the last 4,320 hours, we have engaged in a battle with T1D that I have not experienced before. We currently have four basal rates programmed on her pump that we pick from based on what she needs. The highest rate is 75% more insulin per day than the lowest rate.
The amount of insulin she has needed to cover the carbs in her food fluctuates where sometimes she needs twice as much as other days. And these changes are occurring rapidly and without a clear pattern.
Diabetes is a dynamic disease and right now, for my daughter, it is changing frequently and significantly. There are days that I feel equipped and other days that I am trying to pivot hard and fast to be able to keep pace. Some days we do well and other days we are just glad when we can say we survived the day (though I know that the day being over just means the night has just begun).
I am tired on a new level.
I know some people would say that I put too much in to this. That I shouldn’t have my alerts set where they are and I shouldn’t have so many times that I check her blood sugar.
There was a day when I used to try to justify or rationalize myself to those people, but I am just too tired to give a F right now about that. I’m not asking for opinions or guidance or suggestions right now.
(Insert deep breath right here.)
I am burnt out.
The reality is, I’m not willing to change on damn thing that I do for my daughter. I will get up when needed at night, I will gently nudge her blood sugar down when I am able. I will monitor, evaluate and change her programs as needed.
But there is something that I need to do.
I need to focus some of the same time and energy that I give to her on me. I need to manage my health – physical and emotional.
Physically, I am broken. I was in great shape when my daughter was diagnosed and continued on a path focused on strength. When she was diagnosed, my trainer told me that I needed to continue to take care of myself. I told him that I saw myself as the core of my family. I had to take care of the core in order to ensure the health of the body. My health issues in 2017 took me off track and when I was injured in 2018, I completely derailed. It’s been hard for me because I’ve lost so much strength and I get frustrated in not being able to do even a portion of what I used to. I even left my old gym because I was ashamed of my current state. I’ve joined a new one, but need to commit myself to getting there regularly. And I need to be okay with starting all over again. I know that if I don’t take care of myself physically, I am going to re-injure myself and the next time will be worse.
I need to take care of my mental and emotional health. I have long been guilty of compartmentalizing my grief and struggles and telling myself I’d deal with it later – even though I never really do. I constantly put other’s needs before my own.
My physical and mental health are interconnected. When one suffers, so does the other.
Being a caretaker is exhausting.
Living with a chronic disease is exhausting.
Burnout is going to happen.
What burnout looks like is going to vary from person to person.
How we each manage through it is going to be different.
I’ve been burnt out for a while now. I’ve acknowledged it, but now I need to start focusing on managing through it. I know what I need to do for myself right now.
I just need to get it done.