The recent episode with the workshop and Daughter’s diabetes management has caused both of us to experience some flashbacks to a year ago. Contact with birth mom led to Daughter becoming psychotic and being committed to the psych unit (never mind that we wanted a voluntary admittance, once they heard her plans to kill me it was determined she was dangerous). Her psychiatrist had died a few months prior to all of this, and while we had an appointment set up for a new psychiatrist, she had not yet seen her. So, we went to the local psych unit.
To say it was a disaster would be an understatement. They put her on the geriatric unit because the adult unit wasn’t equipped to handle her diabetes. On the geriatric unit they repeatedly messed up her diet and insulin. One day they gave Daughter twice as much insulin as she needed for a snack, over her protests. When I visited and Daughter told me what had happened, I informed them that at some point she would begin dropping and would not respond to treatment right away. My prediction came true at bedtime. Daughter was upset, and they let her call me. “Mom, I’m afraid to go to sleep. I’m afraid I’ll drop low again and I won’t wake up.” The nurses checked her every hour that night at my insistence.
To say it was a disaster would be an understatement. They put her on the geriatric unit because the adult unit wasn’t equipped to handle her diabetes. On the geriatric unit they repeatedly messed up her diet and insulin. One day they gave Daughter twice as much insulin as she needed for a snack, over her protests. When I visited and Daughter told me what had happened, I informed them that at some point she would begin dropping and would not respond to treatment right away. My prediction came true at bedtime. Daughter was upset, and they let her call me. “Mom, I’m afraid to go to sleep. I’m afraid I’ll drop low again and I won’t wake up.” The nurses checked her every hour that night at my insistence.
The last night she was there, she awoke at 3:00 a.m. to find another patient stroking and kissing her arm. He came into her room repeatedly during the night. He thought she was his daughter. For someone who had been sexually molested at night as a 2 year old, this was a disaster. She came home and was unable to sleep at night. Prior to the nocturnal visit, she had been sleeping through blood sugar checks because of a new drug the psychiatrist had prescribed.
Within a week of her discharge I was on the phone to my insurance company. They helped me find a different psych unit 60 miles from here, and then called to make sure we arrived safely. During that hospitalization, they were giving her the wrong insulin. They were giving insulin that needs to be given at least 30 minutes before a meal 30 minutes after a meal. When I found out I was horrified, and informed them that at some point all the insulin they had been giving to chase highs would kick in and she would bottom out. Once again, I was right. That was when Daughter was first introduced to Mama Bear. She saw me take on the nurses.
There was one more hospitalization before she was finally stable enough to succeed at home. The one positive that came out of all of this was that we found a wonderful psychiatrist who has totally changed her meds and found a wonderful balance for her.
The hardest part of those hospitalizations is that both Daughter and I now have a very difficult time trusting anyone to manage her diabetes. Last summer we learned that even health care professionals can’t be trusted to fully understand Daughter’s disease and the unique needs she has because of it. Family and friends encourage me to think about supported or group living for Daughter at some point. The reality is, I think it would be more stressful to trust someone else to care for her diabetes than it is to continue to have her here at home. When I look at the trouble that RN’s had following the orders, how can I expect group home staff with very limited training to manage her diabetes?
The diabetic educator at the clinic told me about a patient they have in a group home. One of the staff called because he was becoming agitated. She wondered if he could have some variety in his diet. It seems that they were feeding him the exact same meals and snacks every day because it was easier than trying to figure things out for new meals and snacks.
Daughter was diagnosed with diabetes 8 years ago this week. One day in the hospital she said to me, “Mom, this is just one more thing that makes me different.” My thought was, “A self-destructive child has been handed a loaded gun.” There have been times when she has manipulated food and insulin in the hope of killing herself.
My hope is that at some point there will be a closed loop system of continuous glucose monitor and insulin pump that will function as an artificial pancreas. That is the only hope I have for her diabetes management becoming easier.
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