Any parents of adult T1D out there?

Parents
1

I see that most, if not all of the posts are for parents with younger kids.  Wish this site had been around when our son was diagnosed 21 years ago.

Our son is currently 32 and although he intellectually knows how destructive high glucose readings are, he seems to be unable to get down to normal limits.  Even though he denies it, we feel that much of this is related to depression and would like to find a therapist or counselor who is familiar with T1D who could counsel him.  He is currently living with us, is unemployed and does not have insurance. He has been in counseling twice previously, but did not connect with the counselors, saying that they don't understand T1D. 

We'd appreciate any suggestions for finding a knowledgeable T1D counselor. We've scoured the internet, have spoken with our doctor and diabetes department at our local hospital, but no one seems to have any answers.

 

2

I hope some parents respond.  In the meantime, wanted to give my thoughts as from the diabetic point of view.  

High blood sugars and depression are linked.  It can become a vicious circle.  Keep encouraging him to get treatment for his depression.  

www.diabetes.org/.../depression.html

Let your son know he's not a time bomb.  Diabetes does not guarantee complications and early death.  There are research studies on people who've lived well with diabetes for 50+ years.  

www.joslin.org/.../6268.html

I had an A1c of 14+ for decades.  At some point I got tired of it and started doing better.  It's like any other change... you have to do it for yourself, not out of obligation or cajoling.  As my diabetes control has improved in the last decades my diabetes also doesn't feel like such a burden.  Despite the years of bad blood sugars I am complicaton-free.  But I also have learned that when my blood sugars are more normal I feel better and have energy to do everything I want to.  

Counseling didn't help me.  But sites like this have been priceless.  Maybe you could encourage your son to reach out on sites like this.  He's not the only person who has struggled.  But a lot of us have survived our struggle and made peace with diabetes.  

My faith is also invaluable to me since I became a Christian in my late 20's.  I'm not sure what your son's religious beliefs are, but if he's a Christian you might encourage him to pray for help and to make a 30 day commitment to daily prayer and Bible study. Counseling felt like the blind leading the blind.  God gives me hope and peace even in difficult situations.

If you're set on finding a counselor I would probably only use one who has type 1 diabetes as well.  I don't know if anyone else could understand.  I will pray for your son and for you too.

Finally, don't ask him about his blood sugars.  If he shares, don't be judgemental.  Managing diabetes, especially if he's using injections instead of an insulin pump, can be incredibly difficult.  Don't give lectures about the harmful effects of hyperglycemia.  He already knows.  Talk to him and ask if there's anything you can do to help.  You may also have to tough love him (like insisting that he get at least a part-time job or check into education benefits available for unemployed workers) so he doesn't get too isolated.  Everyone needs a purpose.  

3

Thanks so much for your response.  It really helps to know that you had an A1c of 14+ for years and that you remain complication-free.  I was feeling so depressed about his prior high blood sugars because all the literature concerning future complications made me feel hopeless, even though I would absolutely never share that with him.  I also know that this may not apply to his past history and future, but at least it gives me hope. : )

I also appreciated your suggestions about basically staying out of it, other than attempting to find a counselor or someone he could talk to about his depression. I have to say that it is a mother's nature to try to step in and help their child, but I also realize that he's definitely no longer a child, even if he is, in my opinion, making some seriously  wrong decisions.  

Although he has worked on and off for the past couple of years, the jobs never seem to pan out and the cycle continues.  At one point when we felt he was refusing to work, we did use tough love and gave him a date by which he had to get a job--any job--or he'd have to move out.  He moved out, living with friends, but still didn't get a job.  Eventually he had an extreme low. He called me one morning and didn't know where he was.  He had gone out the night before with some friends, and after they left, evidently had been wandering the streets of our town.  By the grace of God, he was able to tell me some of the landmarks he saw, so we were able to locate him.  He was missing one shoe and his cap.  After that, my husband and I agreed that despite our reservations, we needed to be there for him.  It certainly hasn't been easy, but he is still alive.

So thank you again, for your words of encouragement.  I keep praying that he'll get the help he needs.  Btw, I did share the TypeOneNation site with him by text message last night, as he is not open to discussing this, so hopefully he'll take a look at it.  I'm hoping that he'll find this site as priceless as you have.

4

You sound like a good mom Gail.  It's a tough situation.  I've heard from other parents of type 1's on this site who've had similar struggles when their child needs medication or a place to live.  It's easy to talk about tough love but having a child with a health concern adds a lot of stress to the issue.  

If you haven't done so, you might look for some books on co-depency.  That dynamic can happen when you have a child with a serious health issue they aren't managing, just like it does when you have a child struggling with alcohol or drug addiction.  

Take care of yourself and I will pray for your son and your family.  -Jenna

www.amazon.com/.../ref=zg_bs_282909_1

www.amazon.com/.../ref=zg_bs_282909_14  

5

Thanks again for your encouragement and the links  : )

6

Gail, please feel free to reach me directly.  I'm happy to share some additional information, resources and personal insight.  Sincerely,

Andy

t1d 19 years

JDRF Public Information Coord.

212-859-7802

7

I am a parent of a 23 year old and understand on many levels what you are going through.  It is very difficult and so challenging.  As a nurse and diabetes educator, I have been trained in Motivational Interviewing and found that how we communicate with our young adults makes a big difference.  Not only do I find that I have a better relationship with clients, but I also have a better relationship with my son.  It is a coaching style and helps to put the other person in the driver's seat.  But I need to be self aware...it is challenging not to put my opinions out there because I am too personally connected.  I can't be objective with my own children.  So, having someone who can be objective is important.  Therapists and counselors are often using coaching styles, but they don't always have the diabetes knowledge or empathy.  There are such things as diabetes coaches.  For example, I am a nurse coach, but there are other "coaches" out there.  Coaching can be done in person, online through skype, email, phone or text. There are a lot of options and I'd be happy to talk with you to help know what to look for and what might be another path worth exploring.  Many thoughts and prayers for you and your family!!

8

I have a 27 year old son that was diagnosed at 16.  I have a hard time talking to him about his diabetes because early on he would get so angry with me.  It is very difficult and heartbreaking not knowing how to handle this situation.  I wish he would just open up...  If anyone has any suggestions I would appreciate :)

9

I certainly will, Andy, although it will likely be in a few days.  I'm a teacher and start back to school tomorrow, so I know from experience that I won't have an opportunity to call.  Could I possibly call over the weekend?  If not, I'll find time next week. : )

Thanks so much!

Gail

10

So, how do we connect to talk about the other options?  I'm VERY interested : ). I'm kind of new to this kind of communication, so I don't know how we go about doing this.

Gail

11

Gail-

If you click on the person's name (it's in blue, above the response the person wrote on this page) it will take you to a link where you can add that person as a Friend.  Then you can send him or her a personal message.  I'll send you one so you can see.

I've added you as a Friend, so at the top of the screen you can click on your name to open your account, you can go to the Friends table and add me, then you can have a conversation.  Once you've added someone you can have a "conversation" which is private so it won't post on the page everyone can see.

-Jenna

12

Hi, I am Phil, live In Georgia USA ( i dont know if this group is international )... i am 47 diagnosed in 75'... your story hits home.. your son is " me " in another skin.. i can only be honest but i had to hit rock bottom , near death experience type of situation before i became " alive ". then i wanted to seek counseling and therapy and really really want help to live, otherwise i knew the alternative and wanted it , i am being a therapist myself now with you and shouldnt be, you asked  for counselors.. when i got out of the hospital after a near death i sought a Psychiatrist and he helped with meds, so my issue was a chemical imbalance issue ,  brought on by type 1 ? perhaps..  depression is in my history as my dad suffers from it,  

i suffered depression because i always considered myself a failure,  because:

                                 first  . i couldnt meet my dads expectations ( which i thought he had ) , and i coouldnt                                                                          follow in his footsteps,

     second- i didnt meet my own goals no matter how hard i tried

   third-- knowing it was my fault for not meeting goals

        fourth   using drugs and alcohol to hide myself from the failures

        5th---knowing it was drugs and alcohol that assisted in failures

        6th--- knowing i would still be at risk of failure just being  diabetic

                                      i had so many lows  at jobs , and some of them

                                     911 had to be called,, i became a liability so loss

                                       of job,, ( i didnt sue or seek  justice because i

                                                   i told myself if a company doesnt want me

                                                   why should i want to work there ? )

            7th using drugs and alcohol because i thought i was a victim and

                       deserved too, knowing i had tried and tried to be a productive

                        member of society , work, pay my taxes, pay bills, friends and

                          family ,

              8th- loss of home, car, wife, job,  yet again

again and again

being like a nondiabetic or a perfect diabetic is , for me , impossible,

I still have highs and lows, everytime i see a HI number on my machine it is

depressing, i guess i should end my Rant here....

i had a brain hemorage in 04'

there are two ways to have a stroke-- clot or hemorage.. mine was a hemorage

not related to diabetes, it was very depressing more so than the type 1, because it hurt so bad

, that was my near death experience

i still live my parents

13

philngat1 @ aol.com  .. im happy to talk to anyone, it helps me

14

: ) enjoyed this comment very much and is exactly how i feel

15

Next week is good, Gail.  Thanks!  Have a nice wknd