Hi everyone, thanks for all the warm welcomes. I am here for my son who is 24 diagnosed with t! 5 years ago. He is having a difficult time and has been for about 2 years. He has developed sever anxiety for the fear of his sugar dropping low so he keeps it on the high side which has caused other problems. The dr's keep trying to get him to keep it in range but he has such a mental block, he just wont budge. I have made appts with counselors, other doctors, etc. but he always manages to find an excuse not to go. He has lost tons of weight, has become a recluse and very depressed as he feels there is no hope to get this under control. I would welcom any support, suggestions , etc from anyone who may have some. Thanks for listening. Laura (Kevins mom)
Laura,
You have such a warm personality. You must be heartbroken. Hugs, hugs, and more hugs.
Does Kevin work? Does he know any other T1s? Are his boss/other employees concerned for him? Does his level of anxiety impinge on his work/other people's well being? Is he still in school?
It sounds as if his anxiety and depression as a psych problem, must be dealt with first. Sometimes next of kin (is he married?) must consult with a nearby lawyer and then a psychiatrist to get things in place for adequate care.
It is hard, when reading about the problem, not to say that he needs someone else to take ahold, enact a power of attorney on his behalf. Hospitalization has many advantages if in the right place.
In real life, that may be impossible. The first thing, however, is ensuring you have more than you alone working to get the psychological problems attacked. Is that a possibility? Did I get off on an absolutely impossible tangent?
Holding out hope after treating for anxiety and depression can be one way to go.
I am so sorry. That must be devastating.
Here is a story you might want to share. I am a Type 1 diabetic and passed the 50 year mark last December. I am on a pump and have a CGM. About 3 years ago, I got really down about my illness. Not to the level of your son, but I was looking for help everywhere. A CDE at the local hospital gave me the name of a woman psychologist who only treats people with chronic illnesses. So, I went to see her.
Talking to someone is the key, especially when they understand. I was lucky, as she was also T1 and on the same kind of pump, so she really did get it. I had never met another type 1, seriously. Just realizing that I wasn't alone was key. Then I found these boards (her idea) and I don't feel like I am struggling anymore, and I am definately not alone.
Depending on how bad it is, if you need the help Leo2 suggested, don't delay. If a little more push from you is needed--put him in that car and take him--make sure he goes and stays for the whole conversation.
I would also look for some pump groups. Some hospitals have a group that meets once amonth. They have a speaker, sometimes vendors come by with the latest and greatest, but the best part is meeting other diabetics. Boards are also great. I have learned a lot on this board, and they have helped me solve a lot of my insulin problems over the years.
Also, a CGM (Continuous Glucose Monitor) might help with his fear. It alerts when you drop below a chosen level or above. It checks the BG every three minutes.
I wish you the best of luck.
Oh Laura... how I feel your pain! I have walked in your shoes and know it is the most lonely, frustrating, helpless feeling in the world to watch Kevin losing his grip. My 2 grown sons both have T1 and are as different as night and day. Mark takes it seriously and takes good care of himself, and Steven goes the way of Kevin. My heart went out to S because he was dxd at 12. It's a cruel way to start adolescence. I know others have excellent advice for you in this discussion. I just want to say that I have a unique perspective to offer due a quirky twist of fate. After I "raised" my sons, I myself developed T1!!! Now I know how it feels to be the mother of T1s AND how it feels to actually BE a T1.
Please message me if my particular experience would be helpful. I would love to chat.
Empathetically,
Cindy
Thank you :) Kevin quit his job 2 years ago, he stopped driving, he is not married and does not have a girlfriend. He doesnt know any other T1s which I believe is a big part of the problem. he feels "alone" in all this. I have made several attempts to convince him to seek counseling but he always cancels the appt. He has no motivation whatsoever. He is such a gentle, kind and generous kid. He doesnt drink alcohol, he doesnt even go out with friends. I think he needs to be "hospitalized" long enough to realize its okay for his sugar to go low. He has a fear of diabetic comas. His sugar is averaging 300 daily. When it gets to 150 or so he starts getting very anxious and eats something to make it go higher. We dont have support groups in our area, they are about an hour away. I would like to start one myself in the area but not sure where to start. A counselor who specializes in diabetes would be the best choice but I can't seem to find one in our area. We live near Niagara Falls about 40 mins from Buffalo.
No, you did not go off on a tangent, you hit the nail on the head actually. I appreciate your feedback. Thank you.
I'm sorry about your difficulties and can't imagine how you feel as a mom.
I agree with the others that counseling and/or contact with other type 1's would be ideal. I actually did start a very successful type 1 support group in my area and did so with the support of the JDRF, so I suggest you contact the local office. You might have to plan on it being in Buffalo to find enough people interested but I'm sure it will work, though it takes time to get started. Also, has he himself come on here? Sometimes doing something online can be less threatening cause you can lurk for awhile and just read and get input that way.
One thing I want to share with you is when I started my Type 1 (Women's) group, there were women of all ages and lengths of diagnosis. In the women who had been diagnosed as children or teens, and were now in their 20s, 30s or 40s, there were many who spoke about having a "rebellious" or "difficult" phase during which they didn't manage their D well or at all. So perhaps he is going through that now and you can hope he will come through it.
Best of luck to you both.
Thank you Zoe! I will try to contact JDRF again, I did earlier and disnt receive much help but will try again. yes, Kevin is online quite often. he belongs to many support groups online but its just not the same as one on one, face to face I guess. He does have a few online buddies he keeps contact with regarding T1 but I think they are in the UK. I am hoping this is a "phase" but it's been going on for quite some time, I am afraid it may be too deep now, if that makes sense. Thank you for your input. Im on my way to the JDRF page after work today. Ill keep you posted. Laura
Wow, I am really sorry to hear this. However, as T1 myself, I can relate. It's a hard disease to manage and his fears are not unwarranted. At all. First, does he use a CGM and/or pump? For me, using a pump has given me much greater control over my BGs. Basal insulin can be really difficult to use in some folks; for me, just sticking to the fast-acting stuff works better. It allows me to be more active without constantly worrying about my BG dropping to dangerously low levels.
While I don't use a CGM at the moment, they can be helpful for many, as it can notify you if you're dropping. He may find that this technology alone helps to alleviate some of his anxiety.
Is he willing to use this forum? I hope he just knows that there are plenty of us who deal with this every day and many of us find ways to overcome it. It's hard, but doable.
Hi, thanks for responding. Kevin still uses needles. He tried the pump, and didnt like it. He doesnt like the feeling of being connected all the time (so he says). He thinks the CGM is similiar to the pump so isnt very thrilled about using it. His dr. tried to convince him to get the CGM last visit and he told the dr ok until we were on our way home and he said he changed his mind. Stubborn? Yes, very. Petrified? Yes, very. I have tried everything, even tough love as hard as that is for me. That blew up in my face, he pretty much told me he would move out if I wanted him to. I just dont know what to do anymore. I honeslty feel like I am losing my son right before my eyes and theres nothing I can do about it!
Laura,
It sounds like your son and I have a pretty similar story. I was diagnosed when I was 18 with T1. I did the whole injections for 1 year, then when on an insulin pump. I was VERY non-compliant up until I was 25. It wasn't until I started to see what the complication of having uncontrolled diabetes can do to a persons body before I started paying close attention. I started working as an EMT and really got to see first hand what was waiting for me down the road if I didn't do something about it. I always tell people now, that if I had to choose an illness to have, at least diabetes I have the opportunity to live a normal and productive life, with a little work.
I understand this is something that HE has to WANT to do, but I would try and get him to read some of the posts in here. Even to just get him signed up, might help him realize their are others out their that are willing to help. I would even be willing to talk with him if he is interested. Let me know... I am new to the group as well and have felt very welcome. This is a wonderful site!
John W.
A hypo is a terrifying thing. It is easy to see how you can become anxious and fear hypos. But you can also get to the point where you become unable to make rational decisions. Your son sounds like he is having a really hard time.
I think it would really help for your son to visit a diabetes support group and meet others. Below I've listed a bunch of Buffalo, NY hospitals and centers many of which hopefully have groups. I'd like to suggest that you see if he will go with you to meet some others.
There are therapies that will help your son overcome his anxiety, but he needs to believe that it is possible and he needs to decide that he wants to do it. Unless he sees others who are successful controlling their blood sugar and living their lives, this can be a hard thing to believe.
I know a counselor in the Washington, DC area who specializes in people with diabetes. While this is not in your area, she might be able to refer you to someone in the ara that can help.
And of course, if your son could be convinced to come talk to us, we would love to try to help.
Here are some places to look for support groups.
Univera Healthcare
William E. Mosher Health Center
899 Main Street
Buffalo, NY, 14203
716-504-5581
Catholic Health System
Buffalo Mercy Hospital
565 Abbott Road
Buffalo, NY, 14220
716-828-2821
Univera Healthcare
Diabetes Self-Management Education Program
205 Park Club Lane
Buffalo, NY, 14221
716-504-5581
Kaleida Health
Millard Fillmore Hospital
3 Gates Circle
Buffalo, NY, 14209
716-887-4869
Catholic Health System
Sisters of Charity Hospital
2157 Main Street
Buffalo, NY, 14214
716-862-1338
VA Western New York Health Care System
Diabetes Self-Management Education Program
3495 Bailey Avenue
Buffalo, NY, 14215
716-862-8844
I forgot to include something else in my post, Laura. When a parent is dealing with a difficult situation it can affect them as severely (or more so!) as the child. There are groups for family members of people with mental illness and for those with substance abuse. When you contact JDRF you can also ask them if they have a group for parents available. Just as it helps to come on here and talk, it can help even more to meet others in person who are experiencing the same things as you. Your well-being is also important! Part of the "tough love" idea is to learn how to detach with love, not an easy skill to come by. If you are unable to connect with other parents of Type 1's, a second choice might be to actually attend a meeting of Alanon, for family members of alcoholics. Though the problems are of course very different, the pain of feeling helpless and all the other emotions are very similar.
Laura, I guess my question would be, has he had really servere lows, where an intervention, EMT, 911 call, ER trip or glucagon shot was required? I'm wondering where this 'fear' comes from. We're all scared of lows..but they're more often then not, treatable with glucose - eating, testing and monitoring. Also, if he continues to run his numbers high, anything even close to a normal blood sugar is going to feel like a hypo (even though it's not) as the body has to adjust to 'normal blood sugars', so..maybe he can work on lowering his numbers little by little. Does he live with you, alone? If he lives alone, maybe he can stay with you or someone, to ease the fear of doing this alone, while he slowly lowers his numbers and adjusts to what that feels like. A CGM has no delivery of insulin, it's a tool to help manage blood sugars and would be beneficial to him as it alerts if one is trending too high or too low. Therapy may help but maybe if he had someone there with him, to go through a low with him, to show him he can manage them, that would be helpful? Best of luck to you. I would imagine, with his high blood sugars, he feels awful.
He lives at home with me, his dad and one sister and brother. Our house is usually full of people. One time and one time only he was at work and checked his sugar and it was 30. He had no warnings of this low. Since then he has gradually become more and more fearful. Just tonight he realized he was out of needles which never happens, he became very anxious because he was forced to use the pen. He will be nervous until he realizes later on tonight that he survived this little upset in his routine. He has never had an experience with EMTs, etc. however, he has been hospitalized 4 times with DKA. How true it is that when he goes lower than his norm he feels out of sorts. He has been told numerous times it will take time for him to get used to his sugar being in normal range. Yes, he does feel awful, he basically sleeps and eats and has no energy whatsoever.
Are funds available for a CGM (look it up online: Dexcom)? Do you have a fax for his physician that you can use to ask him in confidentiality (state so) to prescribe/talk to his patient about a CGM and tell him that in his present state of depression he may not be able to pull himself out by himself. A referral by him can be requested.
Ask him about a Dexcom & the Dexcom rep/teacher would do the instruction. Diabetes and depression often walk together. With the two, it takes a hospitalization. Nowdays, that can include the CGM, which often gives hope.
Thanks John, I just mentioned this to him so hopefully he will sign on. Thank you for an encouraging reply. He may contact you.
Laura I really feel for u and him too. My daughter is a Type 1 who took diabetes at 11. Me I took it at 10. OK I'm going to say this and probably upset u & everyone here...............It's honestly up to him to get some type of control there. I done the samething by running my bs's high for a few years scared of a low but now I don't do that.I've had some real scary lows there. EMT, ambulance, hospital and such. He's lucky to have u there with him. And yes when u fall low (30 & under usually under 21 for me) it's really scary that u don't feel it. I kinda know where he's coming from there. My husband catches me lots of times when I do that. I hopehe gets a mental control there if he don't he's letting the d rule HIS life not him ruling the d.
I fear lows also and I used to purposely run higher but here’s my secret that has gotten me over and threw this . I carry sugar with me every where I go I have a small zippered case that hooks to my keys and it fits to mini containers of glucose tablets . When I drive I put a bottle of coke in my cup holder that one bottle usually lasts me over a week cause usually I just need a couple of sips from it . It is very scary to go low when you are for instance on the highway going around 60 miles . So always be prepared and tell him that he needs to deal with this fear not run from it cause as long as we take insulin and seek good numbers we diabetics will go low . However the low does not have to be a scary experience . The only time I would consider a low to be scary would be if the diabetic were alone somewhere with know fast form of sugar !
Hi Leo, I’ve already done most of what you suggested except the part about requesting hospitalization. He is due for his next appt this month and I may ask him about this. Thank you. BTW, his dr had him all set up for the CGM, rep called him and all. Kevin pretty much ignored the calls telling me he was ready to do this on his own. Here we are 3 months later in the same boat.
For years I had a problem with running high sugars overnight, due to a fear of a severe low in the AM. Once I got out of the shower and passed out in the bathroom. I woke up later in bed, my tongue chewed apart and my poor parents by my side.
The CGM changed that entirely! I don't wear it all the time, because it's a nuisance and expensive (not covered by insurance in Canada), but when I find myself letting my sugars creep up at night, I wear it for a week just to remind myself that it's OK. Even better is that after that week, if my sugars are dropping overnight, I can make the necessary adjustments.
And I'm also going to try to encourage him to go on the pump. With long acting insulin, you know there are peaks which can make it hard to control and more susceptible to lows. With the pump, it only uses the short acting insulin so there are fewer unexpected lows. It will definitely be easier for him to predict and hopefully help him overcome that fear.
If he needs to talk to someone around his age (I'm 28) going through these same issues, please have him send me a message. I'd be happy to give it to him straight - the ups and downs of living with T1 in your twenties and my experiences on the pump.