Anybody out there a spouse of Type 1?

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1

Hi. My husband, Eric, has Type 1 diabetes. He was diagnosed nine years ago, six months after we started dating. We've been learning to live with his condition ever since. We're still learning.

Things haven't been going so well, lately. The hardest part for me, right now, is having no one who understands to talk to about it. I'd be really interested in hearing from other spouses, but input from other family members or people who have Type 1 themselves is also welcomed.

For the past two weeks, night time has been a problem. This morning he was down to at least 40 when I caught it. Getting him to drink juice was also a bit of a struggle. About two weeks ago I called the paramedics. I'm pretty sure he was on the verge of a seizure. He wasn't able to talk or sit up. He was down to at least 30, probably lower. He was able to lift his head and swallow and he did drink some juice. I almost gave him glucagon.

Since then, I've been making him check himself every morning when I wake up. He's been doing okay, either high, more or less normal, and one day down to 60. The mistake I made this morning was letting us sleep in for an hour. He's been trying to adjust his Lantus and he has an appointment with his specialist in about a month. I want him to get an insulin pump.

I'm struggling with a lot of issues related to his diabetes right now. The big one is just plain, simple, worry. Not only am I worried about his immediate health and safety, but I'm also starting to think about the big picture, long term stuff, like his life expectancy and how that's going to affect me and our future. I'm also having trouble with my boss, who seems incapable of understanding that my husband has an incurable, life threatening disease and that it is not totally under our control, and that I'm not going to be able to work sometimes if I need to take care of him. I'm also having a hard time getting him to understand the seriousness of his condition when he gets extremely low, because he either has amnesia or is too confused when it happens to have a grasp on it.

So, if anyone has any words of advice, comfort, or commiseration, I'd be glad to hear them! Thanks, Emily

2

My husband has T1. He was diagnosed when he was 10 year old and he's 26 now. It is often a struggle. He sometimes wakes up very low and extremely disoriented. I've had to call paramedics before because he became hostile and violent when I tried to wake him up for work one day. Turns out he was 41. They gave him a glucose injection and he "came to" and had no idea what had happened. I've had to inject him with glucagon about half a dozen times when he would not wake up or woke up so confused/irrational/crazy/etc that it he wouldn't drink juice. He is not the best at managing his diabetes, but he does the best he can. Lows are very hard.

I worry about him all the time...I worry he will forget to bring some glucose tabs or a soda on the train with him in the morning and I'll get a call that he was acting "drunk" on the train and he's under arrest. I'm afraid he'll go low one day when I'm not around and scare/endanger our 9 month old daughter, whom he adores. I'm afraid he won't wake up one day or will pass out and not be able to be revived. I'm worried about the complications of the disease and the toll it takes physically and emotionally. I just plain worry.

But it will get better. Hang in there. It's the hardest thing to watch someone you love deal with an incurable, chronic illness. I don't really have any advice other than to support healthy habits and remind him to check his sugar often. Good luck and feel free to email me with any questions!

-Rebecca

3

It's me who has T1, not my hubby. But. I just wanted to let you know, I know how you feel! It's so stressful to worry about short AND long term health with this disease.

It's definitely possible (even though it's a lot of work) to live with this disease without such dangerous lows. After giving birth, I had some VERY scary lows because I was nursing the baby. I ended up going back on the dexcom continuous glucose monitor which alerts me when I hit 80 or lower. But, I also just had to start being more careful with my testing, insulin, etc.

Unfortunately, unless the person with the disease takes the control, it's really hard for an outside person to "fix" the problem. Maybe joining Juvenation would help him too? (Unless you want to complain without him seeing -- totally understandable too!)

Hang in there!

4

Emily, I was diagnosed in 1945 and have been type 1 for 65 years. I have been married for 46 years and my wife has brought me out of bad hypos and some seizures many times.  Most of those problems occurred in the earlier years, when not so much was known about diabetes control. If your husband counts his carbs to determine his proper insulin dosages before meals and snacks, that will help very much. Eating a high protein snack before bedtime can help with preventing lows during the night. My wife used to set the alarm and have me test at 1 AM and 4 AM every night. That kept me from having as many problems while sleeping. I have not needed any of her help since July, 2007, because I started using an insulin pump that year. Pumping keeps my sugar levels very steady at night and I no longer have lows then. Maybe your husband can be approved for a pump. Try and convince him to talk to us here. We will answer his questions.

5

My husband, Manny is a Type 1 diabetic.  He has had if for 18 years.  I also was recently diagnosed about a year and a half ago.  I have been through many low experiences with my husband.  We have been together for nearly 10 years and I remember in the beginning it was really scary because I didn't know what to do.  There was one time where I was trying to get him somewhat conscious so that he could drink the juice and he started to get violent and started swinging at me.  Once he came out of it and found out what happened he was extremely upset.  There was also one experience when I came home and found him passed out in our bed.  I tried everything I could to wake him up and he just wouldn't come to.  I kept trying to give him juice and he would either spit it up or choke on it.  I decided to try one more time and if he didn't drink it I was going to call the ambulance when he finally started drinking it.  I know how hard it can be on you.  I worry about my husband all the time.  Since I've been diagnosed I feel that my husband has started to take better care of himself.  I think it helps having someone close to him that totally completely understands what he is going through.  It's not that he didn't take care of himself before but he is definitely checking his sugar more often and staying on top of things much more.  Unfortunately, you can be there for your husband as much as possible but the responsibility mostly falls on him to check his sugar and make corrections as needed.  I don't think that there is anything that can be done about worrying about your husband.  But hopefully if he gets a pump that will help him gain better control and maybe help you worry less.  If you ever need to talk or vent feel free to message me.

6

I have type 1 and have had some trouble with waking up low in the past. My mom used to put gel icing on my gums in the morning if i was really low. Its much easier than trying to drink juice and a lot safer, no risk of choking. And much better than the glucagon pen because no vomiting afterwards. Not sure if this helps any but its something else you can try. You can buy the small tubes of gel icing in the baking isle at any grocery store.

7

my dear hubby is a real encouragement to me and my type 1 diabetes. he helps me with meal planning and enjoys the meals i make or he also cooks on the grill if i'm too tired or low or high to cook. he does not have diabetes or a family history of it but this is a new adventure for him because of me.

8

My wife was just diagnosed 2 months ago with T1.  We have two young children, and I share a lot of your same concerns.  She struggles with the dosage, she's never really too high, but fights to keep from getting too low, and when she does get too low she eats, and sleeps for a couple hours.  Thank God I'm in internet sales and work out of the house.  If I did have a regular 9-5, I would have already lost my job for missed time, and one hell of an ER bill.  I get frustrated at times, but I know it's not her fault and all I can do is be there and be supportive, but it is tough for all of us. 

9

I am the type 1 and had scary middle of the night lows.  My husband used cake frosting to bring me out of bad ones a couple times.   

The bad lows went away after I got an insulin pump.   With shots it's difficult to regulate blood sugar and over time the body doesn't release adreneline when blood sugar gets low, so there are no symptoms.   In the meantime your husband may need to get up in the middle of the night to check his blood sugar before the low goes too far.

10

Sounds like he needs to take a little bit more initiative... it's not fair to turn you into the "diabetes police", into his caretaker, and it's also not fair of him to pay not enough attention to his health. Because you want him to be around in 20, 30, 40 years! I don't know enough about your situation to know if I'm right (he could be working very hard and just be having a helluva time) but I know that at 27 I only recently started paying "enough" attention to diabetes.

So is this current bout of lows just a rough patch? Figuring out the correct basal doses is really hard (as our bodies change over time). I imagine he would benefit from an insulin pump (and the way it allows for more flexible basal doses). At the very least speaking with his endo will give him a chance to figure out how to improve things. My boyfriend  (of about 3 years) only recently started asking what my sugars are. And now he knows what the values mean. We're slowly figuring out how diabetes plays a role in our relationship. I think how diabetes fits in is different for each couple but... it does need to play a role. Managing diabetes with someone by your side is a lot easier and we T1s all really appreciate how educated and helpful y'all are. Thanks to all the Type 3s out there! Goodluck.

Also. Talking with a good CDE (certified diabetes educator) or joining a forum would probably help him a lot. I know those things have helped me get my butt in gear.

11

I’m married to a T1D and my father in law is also T1D. Both of them were diagnosed late 18-25. My husband is also a triathlete. His rigorous workout schedule has my anxiety level skyrocketing. I feel like I have PTSD. Every race I’m on pins and needles wondering if he’ll be low, if he’ll eat enough, and if he’ll make it through. He is more worried about highs than lows, probably because he doesn’t remember how he was when his sugar gets back up again. He gets so confused, or he falls asleep - which is worse, because it can be hard to wake him up. I had to use the glucagon on him one time when he had a nap after a workout (naps now send off alarm bells) but it didn’t work well because he had worked out so hard (I think he ran 20 miles) that he had no glycogen left. He ended up throwing up and having to go to the hospital for fluids. I’m afraid to leave him alone or let him travel alone for any length of time. It feels like I have another kid who needs a babysitter. We have two kids and I’m training them to recognize lows and treat them. They love to feed daddy fruit snacks when he’s low (he usually doesn’t refuse them like he will other things). Then later he doesn’t remember anything, and whatever happened while he was low/fell asleep is like it didn’t happen. I can’t even tell him what happened. He either doesn’t believe me, or simply has no concept of something he doesn’t remember. It’s hard to tell if this is because he was low, because he’s an independent man, or because he’s just being a jerk to me.