[kukana]

My husband is a Type 1 diabetic, has been for 25 years. When I meet him 15 years ago I was aware that he was a diabetic and was willing to help him with this condition.
He had a bad experience with a endo, that had him on a study program, and the dr insisted that he take his study meds with a full 8 oz of oj every morning. ( this quack wanted him to have extreme high sugars so that the program would get grant money from his condition with "uncontrollable high sugar" )After I got involve in this, I told my husband that he needed to find a new endo to treat his diabetes. He refused. The best I could do is get him to a GP to help manage his bg. I could not get him to go to another endo, or diabetic education( I got him enrolled in the education, he walk out in the middle of 2 of the 3 classes that we went to. And just left me there to explain why he walked out) The dietition wanted to change his diet, but he will not listen. He is a very picky eater. He doesn't like vegetable at all. The only vegetables I can get him to eat is raw carrots and corn(which is high in sugar). He prefer to eat things that are not good for him. I don't mean deserts or things like that. I mean chips, pasta, pizza, rice.
He was on Humalin Regular and NPH. His sugar have never been consistent. Mainly in the 200's. He would not go to a endo, only a GP because of the bad experience that he had with the endo. Now, it is real crazy. they switch to Lantus and Humalog. About 2 months ago, when the GP and I convince him to go to a endo. They started him at 40 units and then increase him to 50units, it was high. Then he started to have low sugars, so they decrease slowly to 36 units and now for unknown reasons, he is running high sugars again.
His sugars were for the last 3 days are Monday -262, 221, 159, 137, 212, 126. Tuesday 240,248, 160, 194, 200, Wednesday 288,316, 259.
He doesn't understand what he needs to do to fix this. He can barely fiquare out how much to take at meals. He relies on me to tell him what to do. When he is high before a snack I tell him he needs to take a couple of units of Humalog to bring it down plus the carbs in his snack and refuses until I get mad.
He doesn't like the the new endo, so he refuses to go back to that doctor. Made me find a new one. You would think someone that has diabetes for 25 years would understand how to control his sugars. But he is completely dumbfounded on what to do.
When I try to talk to him, he either ignores me, get mad or walks away. I have tryed to talk to Educators and they have no suggestions for me.
It has been suggested he needs to go on a pump and a continuous monitor, because he has no warning of a low sugar.
But we can not afford it. Our cost is $1200 for the pump and over $1000 for the monitor.
I don't know what to do.

[stevem0939]

I don’t know what to say. I feel for you and your husband but it sounds like he may not want help. I have never had to try to get someone to accept the help of a doctor. Granted you have to keep an open mind when it comes to a doctor’s treatment but flat out refusing to go has to be hard to deal with. I guess being a pump user and have been for 9 years I would say he needs the pump but if he will not accept that treatment what can you do. As far as the costs of the pump and supplies I don’t know. Most insurance companies will cover the costs and supplies minus a small amount but I don’t know your insurance. I guess all you can do is keep trying with him and hoping that he will listen to the doctors. As far as food to eat. I am not trying to tell you or him what to eat but I eat whatever I want to and I am a big chocolate lover. I just do more insulin.

Steve

[Gordonm]

The pump is not a miracle cure. It takes work just like MDI. For me it has been a blessing but I took control of my diabetes a long time ago and do all my own changes. Mt endo is now just an adviser. I tell him what I am doing. Your husband needs to accept the fact that he has diabetes and it is hard work. Harder than any job I have ever had. It is a 24/7 job that gets no easier. He has to want to get control. Until he starts checking and logging his results and trying to get it under control no one else is going to tell him what to do. I applaud you for trying to help and don't give up. Tell him you want him to live a long healthy life, if he continues on this path that will not happen. It sounds like he needs to change his lifestyle some. It is not easy to do. Keep at it and I wish you luck.

[lorilei]

Kakuna, it sounds like you have been wonderfully supportive of your husband in the past, however, i am thinking that perhaps it is time that he takes the reigns himself. It seems that he needs to become responsible for the management of his diabetes...almost like he needs to be re-educted (and so much has changed in 25 years). Would he consider reading one of the books so often recommended by our fellow forum friends? He may be much more willing to get involved if he understood things better....my fav is Think like a Pancreas (Scheiner) b/c it's so easy to follow and facilitates managing your own doses and problem solving..i'm sure others will follow with the names of books from which they have benefitted.

[kukana]

As for the pump, the $1200 is what the insurance won't cover. We have to pay 20% of the total cost. But they won't change him to the pump until he is control under Lantus and Humalog.
As for him eating what he wants that is fine, if he would take the insulin counteract the carbs that he is taking in.
As for the endo, basically that is all the endo are now, they are just advisors now days. He wants someone to tell what to do. You would think after 25 years he would know what to do. He is a positive case of "His diabetes controls him, him not controlling his diabetes".

[Jan B]

He sure would feel better, physically and emotionally, if he was better controlled. I wish I had a good answer, but I don't. He needs a serious kick in the butt. For some of us, that kick we needed turned out to be these forums.

Is your husband perceived as a healthy person?

[genie86333]

Originally Posted by kukana

You would think someone that has diabetes for 25 years would understand how to control his sugars. But he is completely dumbfounded on what to do.
When I try to talk to him, he either ignores me, get mad or walks away.

I hate to say it, and I may be wrong, but this sounds like he's not "dumbfounded" but rather not willing to try.

I agree with the poster above who suggested that he be the one to take control of his treatment.

Unfortunately, it may take something major to get him to do so. Maybe you giving him the "Think Like a Pancreas" book and telling him he needs to start doing it because he won't listen to you or gets mad at you will work. It may take something more drastic, such as asking him what he'd like his funeral to be like because if he isn't willing to take care of himself, this disease will kill him.

I hope you're able to come up with something!

[alura]

I am so sorry for the seriousness of the situation. You are to be commended for striving so hard to help your husband. You have certainly done your homework on diabetes. Are there other family members who you could enlist to sit down with you and your husband as an intervention? Maybe hearing concerns from others would make him more cooperative. Please keep us informed on any progress.

[mell1682]

I feel your frustrations in a different capacity: I have a type 1 diabetic friend who is married to my best friend and he has trouble keeping up with it and I've been a type 1 for nearly 22 years. As a long time diabetic, I can tell you that sometimes I think we just give up and don't do what we need to because it's much easier not to, especially when you're seeing no immediate improvement of blood sugars. It's incredible and admirable that you're so very interested in helping him. I've learned with my diabetic friend that the more we "nag" him, the less likely he is to care for it the right way. This forum has really helped me a lot because I know now that I'm not alone in this battle and I, personally, take better care of myself so that I actually have something to talk about on here and so that diabetes doesn't kill me. I know it's unfair for you and that it's hard to stay on his side but I do imagine that is one good thing he has in his life. I hope he figures out that having better control will make him feel better all around because it makes a world of difference. In my case, me getting my bloods under control really helped save my troubled marriage.

[kukana]

I went to the book store and bought the book "Think like a pancreas". And I want to make some comments. if I make the comment about the funeral posting. He is so scared of dying because of his diabetes, that would put he over the edge. You have to realize my husband was trained the old way, when the doctor issued the amount of insulin and only that issued the changes. He was taught to give shots with an oranges. And tested his sugar with urine strips. And he has all this in his head, and has a hard time with change. And maybe part of it is my fault, cause I never made him go to a new endo.
This idea of you have to manage it yourself without the doctors help has me frazzeled. In the last 24 hours,his sugar have got high in the 300's and when I talk to the endo office they told me to change Lantus by 1 unit and see us on the 2 of february. That just didn't set with me well at all. We have no knowledge of the new way that everything is done. Bosel and Basel and the carb counting, and I-C is all new to us. Because we have never done that before and we got a 15 minutes lecture on it and that is all.
And about the dumbfoundness and not willing to do it. In my own opinion, I think because of the extreme high sugars and extreme low sugars, I think it has affected his thought process. If you ask him what his sugar was an hour after he has taken it. He doesn't remember, he has to look it up.
Or ask him what he had for his snack, he doesn't remember that either.

[kukana]

Any other books that are good suggestions to read I would appreciate the titles of them. I am going to make sure he beats this. I am disabled with a back injury, if I can beat this, I can beat the diabetes problem.

[mccord89]

Originally Posted by kukana

My husband is a Type 1 diabetic, has been for 25 years. When I meet him 15 years ago I was aware that he was a diabetic and was willing to help him with this condition.
He had a bad experience with a endo, that had him on a study program, and the dr insisted that he take his study meds with a full 8 oz of oj every morning. ( this quack wanted him to have extreme high sugars so that the program would get grant money from his condition with "uncontrollable high sugar" )After I got involve in this, I told my husband that he needed to find a new endo to treat his diabetes. He refused. The best I could do is get him to a GP to help manage his bg. I could not get him to go to another endo, or diabetic education( I got him enrolled in the education, he walk out in the middle of 2 of the 3 classes that we went to. And just left me there to explain why he walked out) The dietition wanted to change his diet, but he will not listen. He is a very picky eater. He doesn't like vegetable at all. The only vegetables I can get him to eat is raw carrots and corn(which is high in sugar). He prefer to eat things that are not good for him. I don't mean deserts or things like that. I mean chips, pasta, pizza, rice.
He was on Humalin Regular and NPH. His sugar have never been consistent. Mainly in the 200's. He would not go to a endo, only a GP because of the bad experience that he had with the endo. Now, it is real crazy. they switch to Lantus and Humalog. About 2 months ago, when the GP and I convince him to go to a endo. They started him at 40 units and then increase him to 50units, it was high. Then he started to have low sugars, so they decrease slowly to 36 units and now for unknown reasons, he is running high sugars again.
His sugars were for the last 3 days are Monday -262, 221, 159, 137, 212, 126. Tuesday 240,248, 160, 194, 200, Wednesday 288,316, 259.
He doesn't understand what he needs to do to fix this. He can barely fiquare out how much to take at meals. He relies on me to tell him what to do. When he is high before a snack I tell him he needs to take a couple of units of Humalog to bring it down plus the carbs in his snack and refuses until I get mad.
He doesn't like the the new endo, so he refuses to go back to that doctor. Made me find a new one. You would think someone that has diabetes for 25 years would understand how to control his sugars. But he is completely dumbfounded on what to do.
When I try to talk to him, he either ignores me, get mad or walks away. I have tryed to talk to Educators and they have no suggestions for me.
It has been suggested he needs to go on a pump and a continuous monitor, because he has no warning of a low sugar.
But we can not afford it. Our cost is $1200 for the pump and over $1000 for the monitor.
I don't know what to do.

As far as all that goes, I used to do the same thing. If the 36units aren't working he needs to up it until he finds a dose that works. As far as listening to you goes, well I don't know what to say. Sounds to me like he's just being stubborn and is going to do what HE wants to do. He obviously needs some kind of help. Having diabetes this long and still not taking care of it, well he's just asking for something to wrong. I don't know what to tell you except, sit him down and tell him how much you care and your only looking out for him and don't want to see him go. Maybe that'll hit a spot and make him realize what he's doing to you.

[techgirl12]

Maybe you could show him information about what happens when you don't take care of diabetes and explain to him that you love him and don't want anything to happen to him. Hopefully if he sees that you are hurting and scared about what could happen to him - he'll try to work at it more.

Oh and by the way. I eat pizza, pasta, burgers, rice, etc. I just make sure to bolus for the carbs I eat and check my sugars often after I eat these things. I was told I didn't need to cut any of these foods out completely... but to only eat in moderation.

Good luck and please keep us updated!

[SuzySushi]

You deserve a medal for your stick-to-itness!

Forget getting explanations from the endo. They don't have the time! See if you can hook up with/hook your husband up with a good diabetes educator, who can go over his BG charts and calculate how many units of insulin to take for how many carbs (and a correction factor for highs and lows). You don't want a class -- what you want is a private appointment where the CDE can deal with your husband's needs.

Until he can calculate it in his sleep, you can write out a chart to post on the fridge and keep in his wallet.

My late husband had Type 1 diabetes for 25+ years and managed it himself (I only got involved for lows), but when our daughter developed diabetes, we went through education all over again and charted everything. I still calculate her insulin aloud, so I (and she) make sure we get the dosage correct.

No one ever said diabetes is easy.

[davef]

Kukana,

First of all I would like to say that you are an amazing person for all the knowledge you have gained and the support you have provided to your husband. Sure, he should be taking responsibility for himself but obviously that has not happened in 25 years and it's not something that will necessarily be easy to change, hopefully not impossible but I'm sure it won't be easy.

Your hubby certainly seems to be "old school" and what a Doctor says goes, there are so many people like that and sadly Doctors who encourage that concept. Perhaps, just maybe, that could be a tool you could use. If you could talk to his Doctor and explain that your husband really needs to be treated with a firm hand and to be told to listen to you as you know what you are about it might just give him a kick in the pants. The other thought I would suggest is perhaps talking to a counselor, it really sounds like your husband has not really moved past the denial stage after being diagnosed and maybe he needs some help to do that.

My hat is off to you, as anybody who can keep fighting this fight for another person is clearly very strong and very much in love. I think I would have been tempted to turn the tables and throw his supplies at him and storm off mad - not necessarily the right answer but I sure as heck would have been tempted.

There is a really great thread here on the forums: 62 Years Of Type 1 Diabetes, Chapters 1--20 (The End Of My Story) which I think has been a source of inspiration to us all. Perhaps if you were to print this for your husband he might see that progress is a good thing and he may find some of the inspiration the rest of us got from Richard.

Do keep us posted, do keep visiting here, while we may not have immediate solutions for you, we can offer you a place to come where people will understand your frustration and where you will receive support.