Annoyed at my diabetic educator

Rox000

Well-Known Member
Messages
61
Hey everyone
Im rarely one to stand up and have a say but today i think i need to...let me know if you agree...
Well im a mum of a 19yr old with autism and both of us have been newly brought into the t1 world with her diagnosis 3mths ago. My daughter is non verbal with an intellectual disabilty.
I.was told it would be beneficial to use the novomix 30/70regime twice daily...given minor carb info(the rest i sought for myself in other literature )and we head home heads down bum up to work at this new regime.
Well i did...i worked **** hard i cut carbs reduced carbs altered carbs for 3 months checked sugars rechecked sugars stayed up for 3 whole months to ensure sugars werent dropping in the night which they did sometimes quite drastically and i caught many a hypo occuring doing this each night.
Spoke to my diabetes educator each day she reassured me i was a trooper doin one hell of a job...Btw im not chasing accolades from anyone but just want to do whats right for my daughter...as would any loving parent right?
So on Sunday i stare at my daughter who diligently adheres to my every instruction eats when required...does everything possible to help me in the process...and i think ..what am i doing?
I am bursting at the seams to do everything possible for her but no ones happy ....i have to change this i thought. it doesnt feel right to me...a phone call to the diabetic educator is in order.
I ring ...i explain my concerns ...guess what she replies ? I couldnt have stuck.to this regime for 4 weeks and you stuck it out for 3months ...i was wondering when you were going to break...
i was ready to cry tbh...pardon me this isnt a test i thought to myself its my daughters life. Why did she continue to.advise me coax me along knowing full well it was awfully hard to keep up?
Im.certainly no diabetic guru but it hurt being told this...i felt like i had wasted 3 months of excessive modifications that were literally killing me mentally and physically and restricting my daughters lifestyle and happiness.
I read read and read more i dont like to be mis informed..i dont know how others that are not capable of finding out things cope...its scary to think about.
Trust is imperative...in your diabetic team...i dont think ive got it anymore.
Another learning curve i guess...a big learning curve ...
thanks for giving me an opportunity to have my say...
 

Rachox

Oracle
Retired Moderator
Messages
15,808
Type of diabetes
I reversed my Type 2
Treatment type
Tablets (oral)
Oh no, you have been doing a fantastic job. I’ve read your other posts and you shine out as a brilliant Mum and your efforts are belittled in a short phone call. I’m so sorry she wasn’t more sympathetic. Did she actually come up with any solutions to improve life for you and your daughter?
 

Rox000

Well-Known Member
Messages
61
hi rachox no.. i did...lol i asked for a new regime basal bolus to see if that would provide us both with a little reprieve and my daughter a little bit more food variety.
Read read read until my eyes are boggled...lol
i sort of demanded an appt tomorrow as a bit of pay back for her attitude..i won that one..
let us see where the basal bolus route leads us....ill keep ya posted....thanks for your reply x
 

leahkian

Well-Known Member
Messages
302
The way you and your daughter have been treated is awful and i would complain as these people are there to help you not to make life more difficult. Is this your local hospital or is it a large hospital, when i was having problems with my diabetes i was at my local hospital in Durham but went on the laptop and seen what was offered at Newcastle after going to my GP's and asking could i see someone at Newcastle. The difference in care information and of course there was a lot more money at this hospital, i was seen by a consultant who gave me hope which i had not had in years. It takes about 30 mins extra drive but that is nothing when you come out knowing that they are trying their best for you. You and your daughter have enough to deal without someone making it harder i hope you get the support that you need and good luck to you both.
 

phdiabetic

Well-Known Member
Messages
880
Type of diabetes
Type 1
Treatment type
Insulin
If you are feeling burnt out or distressed, consider getting professional mental health help. Take care of yourself! Caregiver's fatigue is a real thing, and it's totally normal to feel annoyed, frustrated, useless, hopeless, and many other negative feelings. Remember, an important part of being a caregiver is taking care of yourself first, so that you can be your best possible self when you need to help others.

I am about your daughter's age, I take care of my diabetes on my own but my parents still help with things like sitting with me if my blood sugar is dropping, watching my numbers on the cgm, carrying hypo treatment etc. Even if your daughter isn't able to communicate it with you, I am sure she is grateful for your care. I was very lucky that my mum knew the symptoms of T1D, and was able to help me get treatment. A knowledgeable parent is a real life saver! Keep it up!!
 

Rox000

Well-Known Member
Messages
61
You see i admire people like yourself phdiabetic...people like you and many others on here give people strength and hope...I was a nurse for 15years and now i am a vice principal at a secondary school here in Australia...nursing teaching and being a mum are great attributes to have behind you but challenges still come to test me...I appreciate your post as i do leahkians and anyone else who takes the time to read them ...xxx
 

Rox000

Well-Known Member
Messages
61
leahkian im always scouring and reading and checking stuff out . I totally understand your point. Its the largest tertiary hospital in my state...well resourced but with flaws...im soldiering steadily...trying to jump each hoop without tripping and breaking my leg lol.....x
 
  • Like
Reactions: donnellysdogs

sweetbloodsher

Well-Known Member
Messages
87
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
cilantro, liver, rudeness, cruelty, impatience, prejudice, hatred. kale
Hello. Take a deep breath. You're only three months in. T1 is a long distance run, not a sprint. I totally understand, and was in panic mode after my own diagnosis. Spent a lot of time trying to learn how to be the perfect diabetic. You have been mothering your autistic daughter for 19 years, not an easy life, I'm sure. T1 has made it even more challenging, but I believe you will master this, too. You sound like a wonderful mother who is still initially in shock. I would try to find a T1 parents' support group. They may not understand your situation totally, but they can help with suggestions on how they have coped. Sometimes they have better advice than the so-called "experts". And I totally agree with the previous comment--you need to be sure to take care of yourself during this, both physically and emotionally. I'm convinced it will get better for you.
 

Apricot

Active Member
Messages
30
Type of diabetes
Type 2
Treatment type
Non-insulin injectable medication (incretin mimetics)
Hey everyone
Im rarely one to stand up and have a say but today i think i need to...let me know if you agree...
Well im a mum of a 19yr old with autism and both of us have been newly brought into the t1 world with her diagnosis 3mths ago. My daughter is non verbal with an intellectual disabilty.
I.was told it would be beneficial to use the novomix 30/70regime twice daily...given minor carb info(the rest i sought for myself in other literature )and we head home heads down bum up to work at this new regime.
Well i did...i worked **** hard i cut carbs reduced carbs altered carbs for 3 months checked sugars rechecked sugars stayed up for 3 whole months to ensure sugars werent dropping in the night which they did sometimes quite drastically and i caught many a hypo occuring doing this each night.
Spoke to my diabetes educator each day she reassured me i was a trooper doin one hell of a job...Btw im not chasing accolades from anyone but just want to do whats right for my daughter...as would any loving parent right?
So on Sunday i stare at my daughter who diligently adheres to my every instruction eats when required...does everything possible to help me in the process...and i think ..what am i doing?
I am bursting at the seams to do everything possible for her but no ones happy ....i have to change this i thought. it doesnt feel right to me...a phone call to the diabetic educator is in order.
I ring ...i explain my concerns ...guess what she replies ? I couldnt have stuck.to this regime for 4 weeks and you stuck it out for 3months ...i was wondering when you were going to break...
i was ready to cry tbh...pardon me this isnt a test i thought to myself its my daughters life. Why did she continue to.advise me coax me along knowing full well it was awfully hard to keep up?
Im.certainly no diabetic guru but it hurt being told this...i felt like i had wasted 3 months of excessive modifications that were literally killing me mentally and physically and restricting my daughters lifestyle and happiness.
I read read and read more i dont like to be mis informed..i dont know how others that are not capable of finding out things cope...its scary to think about.
Trust is imperative...in your diabetic team...i dont think ive got it anymore.
Another learning curve i guess...a big learning curve ...
thanks for giving me an opportunity to have my say...
 

Apricot

Active Member
Messages
30
Type of diabetes
Type 2
Treatment type
Non-insulin injectable medication (incretin mimetics)
You have done a fab job. No doubt about it. Don't let ANYONE tell you differently.
 

Captain_Sensible

Active Member
Messages
33
Type of diabetes
Type 1
Hey everyone
Im rarely one to stand up and have a say but today i think i need to...let me know if you agree...
Well im a mum of a 19yr old with autism and both of us have been newly brought into the t1 world with her diagnosis 3mths ago. My daughter is non verbal with an intellectual disabilty.
I.was told it would be beneficial to use the novomix 30/70regime twice daily...given minor carb info(the rest i sought for myself in other literature )and we head home heads down bum up to work at this new regime.
Well i did...i worked **** hard i cut carbs reduced carbs altered carbs for 3 months checked sugars rechecked sugars stayed up for 3 whole months to ensure sugars werent dropping in the night which they did sometimes quite drastically and i caught many a hypo occuring doing this each night.
Spoke to my diabetes educator each day she reassured me i was a trooper doin one hell of a job...Btw im not chasing accolades from anyone but just want to do whats right for my daughter...as would any loving parent right?
So on Sunday i stare at my daughter who diligently adheres to my every instruction eats when required...does everything possible to help me in the process...and i think ..what am i doing?
I am bursting at the seams to do everything possible for her but no ones happy ....i have to change this i thought. it doesnt feel right to me...a phone call to the diabetic educator is in order.
I ring ...i explain my concerns ...guess what she replies ? I couldnt have stuck.to this regime for 4 weeks and you stuck it out for 3months ...i was wondering when you were going to break...
i was ready to cry tbh...pardon me this isnt a test i thought to myself its my daughters life. Why did she continue to.advise me coax me along knowing full well it was awfully hard to keep up?
Im.certainly no diabetic guru but it hurt being told this...i felt like i had wasted 3 months of excessive modifications that were literally killing me mentally and physically and restricting my daughters lifestyle and happiness.
I read read and read more i dont like to be mis informed..i dont know how others that are not capable of finding out things cope...its scary to think about.
Trust is imperative...in your diabetic team...i dont think ive got it anymore.
Another learning curve i guess...a big learning curve ...
thanks for giving me an opportunity to have my say...
You have done a fab job. No doubt about it. Don't let ANYONE tell you differently.
Hi There - Apricot is right- you have been doing a fantastic job with your daughter. You must do what is best for her but also what is best for you. It's no use having a worn out Carer.
 

Paul520785

Well-Known Member
Messages
95
Type of diabetes
Type 1
Treatment type
Insulin
Hi -
I have been T1 for 57 years
I also have had experience of the annoying and unhelpful and totally incorrect instructions.
You are doing the right thing by reading, getting information, and then you must make your own decision as to what will work for you and your daughter.
If you find anything difficult or that you feel should be easier - Stand up and say so.
Keep Going - you are doing brilliantly.
Best Wishes
Paul
 

AndyOD

Well-Known Member
Messages
114
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
eggs
Hi
I have had T1 for 46 years, I used to be on the mix like your daughter,
I went onto Basal Bolus in 2000 and it was much better for me.
The reason being I could finally properly experiment (which I believe is key) with my dosage.
So when I am high I can give myself more insulin before a meal to bring it down after - and live a more normal life.
It is unfortunate there is no magic to working things out it is trial and error unfortunately
The Basal dose is key though so in theory one could not eat and stay alive with the Basal, so it allows you to
manage the Blood Sugar Levels (BSL) by, ok, normally I have lets say 5 units of insulin before breakfast - I wake up and I am 15mmol/litre (normal range is 3-8 mmol/Litre) so I inject 6 or 7 and test 30,60, 90 and 120 mins, after to see what has happened
This is not fool-proof as there are exterior affects such as (if you get stressed (fight or flight response) or get a cold/ illness - BSL increases)
Unfortunately, as I say, there is no formula - Health care professionals have their limitation, they are not living with the condition 24/7 so I would think that when you discuss anything with them - they are giving their best 'current' knowledge which may be wrong for you as you (as all of us) are unique.
Hope this helps
All the best
Andy