Sarah Howard
Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.
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How much do you think your immediate family members know about T1D? Select all of the statements that you think are true for you. Cancel reply
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Many know the general terms and conditions of the diabetic contract; but few really understand the Medusa nest of challenges that may dangle down in front of your face at any moment. 〰️♾️
My wife was excellent with my diabetes care 1964-2019, but she now has Alzheimer’s and she has forgotten so much. We still have a wonderful marriage, but my diabetes management is all my responsibility now.
Sorry to hear about your wife. My dad had Alzheimers and my sister is in the last stages.
When my mother’s father became absent-minded, he was diagnosed as having “hardening of the arteries.” When my mother slowly became less aware, it was called incorrectly “Alzheimer’s.” But Alzheimer’s could only be diagnosed accurately by autopsy. I found great comfort and guilt-abatement joining an “Alzheimer’s” support group, despite realizing “dementia,” and “progressive memory loss” were more accurate. The support group: friends and relatives of “Alzheimer’s” patients, and a woman and her husband; he knew he was slowly losing memory. The couple wanted to emotionally and practically prepare. An official from the Stste Alzheimer’s Society
My father had T1D before me so my immediate family has had two generations to get used to learn about it.
I answered “I don’t know.” I am one of seven siblings. My wife has a fairly good understanding. She knows what a low blood sugar is, and how to treat it. I don’t spend large amounts of time with my brothers and sisters. I don’t believe most of them understand the difference between taking insulin versus eating food when needed. I imagine it varies from person to person. But, if they don’t live with it, they don’t know the disease or it’s treatments.
I wish more if my family was interested in understanding what T1D is but alas they are not. After almost 30 years I have resigned myself to go it alone and to make sure I never have a low blood sugar around anyone as they would probably kill me.
This made me chuckle, though we both know it isn’t funny. I’ve had T1 for 53 years. I once had a low bg at work that was so bad that I was wandering around and no one would help me, even though they all knew I had diabetes. Finally, someone from another department realized what was happening and gave me a piece of candy. After that, I printed out a page of instructions so that if it was to ever happen again, they’d know what to do. They all looked at me as if to say, “whatever, that’s YOU’RE problem.” I knew I was on my own after that.
I was 30 years old when Dx’d with T1D, so most of the mgt etc has been my job alone. My older brother was aware of it, and how serious it is – I was found in a coma from DKA when I got the correct Dx, and my parents were visiting his family when they got the call from the neighbor who found me. Eventually my brother learned more – his son’s partner has T1D and they spend lots of time together. Overall, they know the basics, they know what my devices do etc. But I still get the blame game when a “rogue number” causes problems. Then they are as clueless as (sadly) too many health care providers. You know, “what did you eat?” “Did you forget to eat?” those sorts of acusations.
I remember being blown away at the understanding, reading my then 12-year-old sister’s diary page from 1955, 50 years later, to see that she had written that I was in the hospital to get my insulin dosages calibrated to my diet. The page had been dug out to send to Joslin as proof of my then 50 (now almost 68) years of diabetes.
But my current balancing acts, trying to keep in range, really intimidates my husband, even though he understands the basic principles. He’s really hoping to never actually have to be responsible for it.
My 86 year old husband has mild dementia. He was never any help before, but I am now the caretaker for everything including his meds. My daughter lives nearby, but I would never ask for rescue help, I’m in my own . I’m extremely careful, but I have been sick for the last week, which has played havoc with my BGs. She is on vacation 2,000 miles away. I’m getting better, but very slowly.
Best of luck Natalie, you’ve got a lot to deal with!
Hoping the new year brings improvements for you.
I am dealing with that as well and am fearful as a T1D with another invisible “Challenge” as well, what the future may challenges will be??? 🙁
I was diagnosed after I left home to go to college. I had never heard of diabetes before that. But now, my siblings and kids all know all about diabetes and diabetes devices. All but one of them has worked with medical devices in their work. (One is a doctor, one ran a medical company, one does biomedical device research and one is in computer programming.) My husband only knows all about it because he has known me since 6 months after I was diagnosed 53 years ago, and has been with me through the evolution of insulin, injections, pumps and CGM’s.
I had a similar goal yet schooling escaped. I did thesis work on a glucometer that would be solar powered in the 1980s.
My husband and adult son are both very well informed, and instantly understand when I need to take some kind of action, usually eating. Equally valuable to me is the fact that they do not nag or attempt to manage me.
I was diagnosed at 10 and was lucky enough to have a mother who was a RN. My parents felt that I was old enough to be the primary actor in my care from the very beginning. When I finally was seen by an endocrinologist, he ere encouraged them to encourage me to do normal kid things. That made it necessary to have as much self-management as possible, so that I could go camping, swimming, etc and be confident of recognizing and treating a low. Truly, I never had any problems. I think my parents informed parents of my friends of my situation and reassured them that everything was under control. As I said, I was very lucky.
To be fair, management in the 1960s was much simpler than now. I took my single dose of NPH in the morning, followed my ADA exchange list, and carried supplies of snacks. we all understood that the urine tests were not to be trusted.
My spouse knows basics about T1D and my daughter, but she lives far away. The actual details of pump and CGM use are all mine to deal with.
Diagnosed as an adult and live on my own so it’s up to the three of us to figure things out – me, myself and I!
There is only one member of my immediate family that does not have some kind of diabetes, and I live with her. So, we’re pretty much in the know.
Cynthia Jaw And I share much the same story. My Aunt was the RN in mine. For me my husband has become more involved in my care in the last five years, and we are working through how he helps. Both adult sons are aware of the basics and how to treat a low.
Last line of Reply to Richard should be, “An official from State Chapter Alzheimer’s Society facilitated the group.”
I answered the question at the time my parents and brother were alive and I had been diagnosed. I got their loving support.
I marked most on each subject (What T-1D is, insulin lowers glucose, and knowledge of my devices). However, would they say Type-1 is an autoimmune disease? I doubt it. And they know one of my devices gives insulin and one of them measures the glucose level. But I think they would not know that the CGM measures glucose in the interstitial fluid and not actually blood glucose. I think the only one subject they would all really know is that insulin lowers blood sugar.
Being single made a lifestyle of self care but… I have a younger brother (in moderate good control) TYPE 1 and one TYPE 2. I’m in my “retirement home,” (an apartment off my brother’s garage), he’s the TYPE 2, kind of knowledgeable. Still living alone basically but I’ve bragged on the “closed loop” system, and they see me brag on my meals (thanks to text messages between brothers).
I’m about 90% certain this question has been asked before.
Another concern is my partner does not understand that our brains are fogged or our minds are not complete with a low or a high. I may not be able to get to the sugar or read a lebel or know how much of that it is ncessary. The logic is a bit at a time…not to wolf sugar down. We do not want spike????
The pump effects/affects management things too!!!
The most fundamental aspects they grasp. The nuances, subtleties they are not aware because they are not type 1s themselves. The rote basics are sufficient to concern them enough. More will terrify them, with good cause ime
My immediate family is very small(no siblings) so they know enough to assist with highs and lows.