Feeling helpless and hopeless after 18 years with Type 1 spouse

[ReachingOut]

Hello. I'm new to this website, and I'm looking for support and suggestions from spouses of adults with Type 1 diabetes. My husband is 45 yrs old, and was diagnosed with T1 diabetes when he was 20. I met him when he was 26 yrs old, and we married two years later. I love my husband so much, but our marriage is in serious trouble, and I believe one of our biggest issues is my feeling of helplessness and hopelessness at being the wife of a diabetic. Early in our relationships, I learned the basics of diabetes, and became quite skilled in noticing the signs of an insulin reaction & responding to them. I researched diabetes management, and tried to share my "discoveries" with my husband, but I soon learned that he felt this was "his disease." He didn't want me trying to manage him or his diabetes so I reluctantly backed off.

About 6 years ago, I decided I couldn't be passive any longer, and I insisted on going to dr. appts with him. For a while it helped me and us that I had become more involved, but over the past few years we've grown further apart as the complications of Type 1 worsen. We've been in weekly counseling since January, but I feel like I need to connect with others in my situation. If you've been there, I'm open to any suggestions. I really need help learning on how to love him without completely losing him or myself in the process.

I'd also appreciate it if anyone knows of support groups that exist for spouses of adults with diabetes. I live in WA state, but I'd be open to on-line support groups as well. Thank you.

[rickst29]

If he's having complications in only his mid-40s, I imagine three alternatives:

(1) Continue doing the same stuff which HASN'T WORKED; or

(2) Psychological treatment for dealing with the increasingly desperate and depressing situation; or

(3) Get better tools. The Dexcom CGMS has been a life-saver for me, and the similar Minimed R/T system has been great for many others. Why not try one?

(If you do #3, which avoids #1, you might not even need #2 because the situation may change DRAMATICALLY FOR THE BETTER and no longer be depressing and aggravating.)

[ReachingOut]

The Dexcom CGMS has been a life-saver for me, Why not try one?

Thank you rickst29 for your suggestions. I'm really pleased to hear your Dexcom CGMS is working for you. I just ordered one for my DH in January, based on the advice of his dr. We hope this will help him get better control.

Unfortunately, the monitor is still in the box, because he's been too busy to make a dr. appointment... and therein lies one of my biggest frustrations -- My husband is a respected and successful executive at a major corporation, but his success has definitely been at a cost to his health. I see firsthand that he's trying to manage his diabetes, but because of the onset of complications (e.g. neuropathy, foot ulcers and eye problems), there is still more that needs to be done. On top of that our counselor is fairly certain my husband is dealing with depression, which likely explains why he isn't more attentive to his health. My husband acknowledges he probably is struggling with depression, but he's trying to will his way out of it, feeling he doesn't have time to deal with one more thing.

This is why I'm reaching out and seeking help from others in my situation. I feel like I've become the wife of an alcoholic, enabling him to function enough to get by daily, but also causing him to resent my help and expectations. Of course, unlike an alchoholic, he didn't choose to have Type I diabetes. I believe he's doing the best he can right now, but I really fear he won't live to the age of 60, if he doesn't make some changes. I'm not ready to let go and make peace with our situation. I want to find answers and I'm willing to do the work for his health and mine. I know at some level my husband wants to be healthier, or he wouldn't have agreed to marriage counseling (although I did have to threaten to divorce him unless we sought help).

Thank you again for your reply and ideas.

[EmmasMom]

I just wanted to say that I'm very sorry about your situation. It is scary and frustrating to have a spouse that won't do what is necessary to stay healthy.
My husband was dx'd at 26 and, luckily, has done a good job in managing his diabetes, but he definitely goes through times where D takes a back seat in his life, and I feel frustrated about the choices he makes. I feel that it is his absolute responsibility to manage his D well, for him, for me and for our children's future. It's not something that can be put aside, ever, and I know that's hard when you lead a busy life, but it's not a choice if you want to live a long healthy life.
I lost my father to D complications when I was a child, so my fears about my husbands health have felt overwhelming at times, and I know that can come across to him as being a nag or trying to mother him but it's really just my own need for security. I need to know that he's going to be OK, and I need to know that he's going to be there for our children. It can definitely add a huge layer of stress to a marriage!
When our baby was dx'd last year the D related stress in our lives was almost too much for both of us, (mostly me really), and we started going to counseling. I think it was beneficial for him to understand why I stay on him about his diabetes, it's not because I want to be his "mother", it's because I want to continue to be his wife for many years.

Anyhow, I can sympathize with your frustration. What kind of insulin regimen is he on? Pumping is an amazing way for someone with a very busy lifestyle to live normally and still manage their diabetes. It allows a free schedule, and a huge amount a flexibility in eating while still maintaining good control. The CGMS is also an amazing tool, but it definitely requires a bit of patience to get started. If he's willing to invest a small amount of time now it will change his life.
I agree with Rick that if he can gain better control and feel better his depression may resolve on it's own, especially if he sees how happy it makes you.:cwds: It's a win win for everyone, so hopefully you can help him see that in a positive way during your counseling sessions.

I'm sorry for your situation! I don't know of any support groups on line, but maybe someone else will chime in!

Best of Luck!

[ReachingOut]

[QUOTE=EmmasMom;32962] we started going to counseling. I think it was beneficial for him to understand why I stay on him about his diabetes, it's not because I want to be his "mother", it's because I want to continue to be his wife for many years.[QUOTE]

Amy,

Thank you so much for your kind and supportive words. I'm so glad to hear the counseling was helpful, especially in communicating your desire to be a wife rather than a "mother." We've been going to counseling now for 5 weeks, and I think it's becoming clearer to him and to myself how much my fear of losing him to diabetes is affecting us.

My husband began using the pump with Novolog in 2005, and for awhile it looked like this was the answer. His frequent and sudden lows all but disappeared, and his attention to carb counting seemed to help as well. He even begn testing his sugars more often, as directed by his dr. Unfortunately, his busy work schedule has given way to not testing as much, and as a result he's begun to experience the intense lows again.

I realize frequent testing must be so much easier said than done when he's at work, but I believe it's key to his health. That's why I'm hoping the continous glucose monitor will help. As I understand it, the monitor will alarm him if he begins to rise above or drop below a preset target range. That would satisfy both our needs since I tend to want him to error on the side of staying high (120 - 140) and he wants to error on the low side (60 - 80). What kind of range do you use with your daughter's monitor? How did you determine the best range to use?

Thank you again for support and insights.

[lilituc]

Hi, sorry to hear about your situation. Have you looked into diabetes-specific counseling? I know it's an emerging field and might not be available in your area, but it can really help. I would also recommend some books - "Psyching Out Diabetes" by Richard Rubin and especially "Diabetes Burnout" by William Polonsky. I am in a mildly similar situation to yours and those books really helped me - and I mean me, not the other person involved. It could help them, but it has to be their idea to read them, I guess.

The problem is that sometimes you just really have to let go. I know how hard it is and I do struggle with it myself, but the more you try to help sometimes, the worse they do. So it ends up having the opposite effect. That's why diabetes-specific counseling might be helpful - they are used to the reasons why this can happen with diabetics.

I hope things work out for you.

[ReachingOut]

Hi, sorry to hear about your situation. Have you looked into diabetes-specific counseling? I know it's an emerging field and might not be available in your area, but it can really help.

lilituc I noticed you live in the Seattle area, and so do I. I'd appreciate knowing more about who you are seeing and other local resources you'd recommend. I realize the best thing I can do is seek help for myself, and that was one of my main goals when I joined this forum. The contributors to this thread have been both informative and supportive, and I feel like I've found the hope and help I'm seeking.

Thanks also for the books you recommended. I'll look into them both. By the way, my DH receives his care through the UW Diabetes Care Center. He didn't start going there until late 2004, but has had a good experience with them.

I welcome any other insights and suggestions. Thanks in advance to you all.

[EmmasMom]

What kind of range do you use with your daughter's monitor? How did you determine the best range to use?



On my daughter's monitor the high and low alarms are set at much higher levels than most adults would use. The high is around 250 and the low between 100-120 depending on our day. We try not to let her drop below 80, ever, so that gives me some time to reverse a drop before it gets bad. On a very fast drop you may see about 15 minutes lag time between the fluid these cgms' test and blood so, I like to have some warning.

For your husband a high of 160 and low of 80 might be a good start if he likes to run low. If he's never worn one of these before he may be surprised at how much his blood sugar fluctuates after meals or during sleep, and hearing all the alarms can be frustrating at first. The good news is you can really see where changes need to be made in insulin dosing, and when you need to test. Looking at the screen often throughout the day is very educational!

He will figure out a "best" range once he starts using it and can really see how much advanced warning he may need for lows and, how high he spikes after eating. These things vary quite a bit from one person to the next.

I hope it works really well for him!

[ReachingOut]

[QUOTE=EmmasMom;33168] If he's never worn one of these before he may be surprised at how much his blood sugar fluctuates after meals or during sleep, and hearing all the alarms can be frustrating at first. The good news is you can really see where changes need to be made in insulin dosing, and when you need to test. Looking at the screen often throughout the day is very educational! [QUOTE]


The monitor sounds like a godsend. Thanks for the info!

[lilituc]

lilituc I noticed you live in the Seattle area, and so do I. I'd appreciate knowing more about who you are seeing and other local resources you'd recommend. I realize the best thing I can do is seek help for myself, and that was one of my main goals when I joined this forum. The contributors to this thread have been both informative and supportive, and I feel like I've found the hope and help I'm seeking.

I just moved back here, actually, so I don't know a lot about local resources yet. Sorry I can't be of more help.

Thanks also for the books you recommended. I'll look into them both. By the way, my DH receives his care through the UW Diabetes Care Center. He didn't start going there until late 2004, but has had a good experience with them.

Glad to hear he's getting good help. I did try to get in there, but after sending in my application packet, I never heard back. Luckily I found an endo I like anyway.

[rickst29]

Thank you rickst29 for your suggestions. I'm really pleased to hear your Dexcom CGMS is working for you. I just ordered one for my DH in January, based on the advice of his dr. We hope this will help him get better control.

Unfortunately, the monitor is still in the box, because he's been too busy to make a dr. appointment... and therein lies one of my biggest frustrations -- My husband is a respected and successful executive at a major corporation, but his success has definitely been at a cost to his health. I see firsthand that he's trying to manage his diabetes, but because of the onset of complications (e.g. neuropathy, foot ulcers and eye problems), there is still more that needs to be done. On top of that our counselor is fairly certain my husband is dealing with depression, which likely explains why he isn't more attentive to his health.

Since he is apparently:
(1) successful;
(2) a decision maker;
(3) smart!

Let him know that another smart guy who uses one thinks that maybe he doesn't NEED to wait for a Dr's appt. to try out the machine and do a good job with it. The user's guide says just about everything he needs to know, EXCEPT that he should probably put the Sensor in one of his "love handles" on the side, straight down from the armpit and a couple inches above the belt, instead of putting it into his frontal abdomen (as Dexcom says he should).
- - - - -

I'm in your time zone. Maybe next weekend, if he wants to put one in with real-time coaching, we can talk on the phone? Send me a private message or email by Clicking my username at the top left of the post, "Rickst29".
- - - - -

Finally, I have some suggestions about depression: First, his depression has a cause, diabetic complications, and isn't any kind of "weakness". So a struggle to "overcome" the depression with will-power is probably DOOMED before it even begins; this is not merely a game.

Maybe he should spend just a very short amount of time with a therapist who can teach him about a self-directed, aggressive technique called "Cognitive Behavioral Therapy". BTW, it's *not cheating* to go and get a book about it first. But he will almost certainly make faster progress with an experienced therapist catching mistakes and redirecting his work.

There are several drugs which might be helpful, too. If you and he feel 'bothered' by the idea of treating depression with drug therapy, I'd encourage you to think hard about WHY you feel that depression, a mental disorder, is so "different" than other life-threatening illnesses. It isn't!

[ReachingOut]

lilituc - It's just good to know that diabetes-specific counseling exists, even if you haven't yet found any in the Seattle area. I'll keep looking, and post on this forum if I find it.

rickst29 -WOW! Great suggestions and insights. I'll contact you directly so we can talk more about using the CGSM.

Thanks to you both.

[Jenn]

Hi ReachingOut-

I'm visiting from another board, but just wanted to give you my opinion.

1. Depression is terribly common in type 1's. It's usually pushed under the rug, but it's there. I would suspect that most people with complications are struggling with this. It's a disease just like the type 1. Perhaps he needs medication. Although you'll find getting most type 1's to talk about how they feel is like trying to pull teeth. We were always told not to complain and let it control us. Whatever.

2. Men have a very hard time asking for/seeking help. I have a husband who is not chronically-ill and he'll go to the doctor for a hangnail. In other words, he's mindful re his health. I talk to friends of mine who have husbands with all sorts of health maladies in the dna, but they won't get a physical, etc.

3. He's 45 years old. If he wants you in the doctor's office he'll ask you to join him. But most people (even the guys) are private and don't want their significant other with them. If he needs help getting there, then you have to go along. Otherwise, I wouldn't push it.

4. Hospitals have all kinds of support groups. I would look online or give them a call.

He's more than a trashed pancreas. Look at it from that perspective and you might see some things that will help your relationship. Good luck to you!


Hello. I'm new to this website, and I'm looking for support and suggestions from spouses of adults with Type 1 diabetes. My husband is 45 yrs old, and was diagnosed with T1 diabetes when he was 20. I met him when he was 26 yrs old, and we married two years later. I love my husband so much, but our marriage is in serious trouble, and I believe one of our biggest issues is my feeling of helplessness and hopelessness at being the wife of a diabetic. Early in our relationships, I learned the basics of diabetes, and became quite skilled in noticing the signs of an insulin reaction & responding to them. I researched diabetes management, and tried to share my "discoveries" with my husband, but I soon learned that he felt this was "his disease." He didn't want me trying to manage him or his diabetes so I reluctantly backed off.

About 6 years ago, I decided I couldn't be passive any longer, and I insisted on going to dr. appts with him. For a while it helped me and us that I had become more involved, but over the past few years we've grown further apart as the complications of Type 1 worsen. We've been in weekly counseling since January, but I feel like I need to connect with others in my situation. If you've been there, I'm open to any suggestions. I really need help learning on how to love him without completely losing him or myself in the process.

I'd also appreciate it if anyone knows of support groups that exist for spouses of adults with diabetes. I live in WA state, but I'd be open to on-line support groups as well. Thank you.

[BlessedIAm]

Reaching Out - I hope that things are going better at this point. I do think that our DH's think that diabetes is "thier" disease and therefore it has no effect on us but it definitely does. I am fearful of getting down the road in life and DH having complications b/c he didn't take care of himself for so many years. I used to harp on him about his career choice b/c I too felt that his career made it difficult for him to manage his diabetes responsibly.

Our DS was diagnosed with diabetes a little over a year ago and it served as the catalyst for DH wanting to get better control. He finally got a pump in December. I've tried for years to get him interested in a pump thinking that if he was going to insist on working the kind of hours and schedule that he does that at least a pump would suit his lifestyle better but to no avail. He fussed and moaned and groaned and complained about it right up until he got his CGM started. HE LOVES being able to check his sugars all day long and he thinks the pump is wonderful! His first A1C after he got the pump was the best that he'd ever had since we have been together (14 years). I hate that it took our son being diagnosed with diabetes to get his act together but I am just glad that he is taking better care of himself.