grrrr.....hssss.......

he got home late last night after being gone 2 1/2 weeks. He drove this trip. As I am helping him unload his car at 11:45 pm....he says to me, "by the way, what did you do to break the seatbelt on the passenger's side?" I said, "what?" He said, "well, you must have done something when you were helping me load the car because it's broken."

I stood there in complete utter disbelief, not quite sure how to respond, but finally said, "Let's see, we loaded the car while it was still IN the garage.....the passenger door would have been up against the wall, so I distinctly remember putting stuff in through the driver's side of the car. I don't recall anyone opening the passenger door as you were backing out of the driveway, so I don't see how you think I did anything at all on that side of the car!"

He said, "oh".

I merely wanted to smack him from here to China but instead, had a little conversation in my head that went something like this (not a word uttered outloud)

He just drove 13 hours to get home in a single day. I'm sure he only ate at McDonald's as he drove through and sped down the road. I'm sure he didn't take his evening insulin yet. I'm sure his blood sugars are low because his last stop to eat and get gas was 4 hours ago. So just write off his stupid comments. It's not made to make you feel bad, or dumb, or stupid. He is the one who doesn't have the capacity to use logic and reasoning at the moment. I'm sure if his sugars were normal, he would not have made such an idiotic comment. Just get him inside the house and offer him something to eat. Maybe a few crackers would do the trick tonight.

Now what I do worry about is the process of aging and when I start to mutter these little conversations outloud and the person who hears them will think I've gone completely mad!

And then you all just email me and remind me it is him and his disease that really made me go mad! LOLOL!!!

________

This comment was made:

Bittersweet to report that I too see so much of my own life in this post. I no longer prioritize the marriage and feel my job now is to "endure" and do so for the sake of the children, as they say. I am very sympathetic to my DH and especially the disdain with which so many physicians treat non-compliant diabetics - as if it is EASY to stay on track - but I have my own anger as well. It is unpleasant to live with an ogre. I see that through this non-compliance and depression, my DH chooses to hate life and see the worst in it. I feel I need to send the opposite message to our children. That live is not without challenges but is worth living and loving. A support community online does help. Please do help spread the message of hope and positive energy. Even if it ends up being untrue, it is better to believe in good.

I think it is good to let the children know that life has it's ups and downs but still worth living and loving. I think it's good to point out to them (if you can) when dad is in a low and when dad is "normal".

I'm not so sure about spreading a message of hope and positive energy. I'd rather think we spread a message or reality checks and decision points. That we make concious choices every day to stay with a non-compliant diabetic. While it's good to believe in "good" - I think it's best to believe in realistic outcomes. With my husband's kidney function hovering around 20% - I can't expect miracles. I can hope for a good day once a week! If I get more than that, life is wonderful!!!

Don't think I posted this comment:

With type 1 diabetes, you can be extremely compliant but due to both beta and alpha cells destroyed by the autoimmune process, the person with diabetes experiences a virtual roller coaster of blood sugar highs and lows...many of which come out of nowhere

I have had midnight lows in which 4 juice boxes weren't enough to bring me above 40

I test my blood sugar 12 times a day, unless it is a sick day in which I test more often...and still these nasty lows can sneak up on you

Good for you for being compliant and testing so often. Like I've said before, my hubby hasn't renewed his test strips since 2001 - that should tell you just how often he tests! But I agree, it just makes sense, as neuropathy sets in and nerve endings throughout the entire body start to die, we have to remember, it's not just the nerve endings in the hands and feet that die. That's what they feel and notice first. But it's the nerve endings in the intestines, brain, heart that also die off. I read somewhere that so many diabetics die from heart failure...from nerves that don't work any more and the cause of death is heart attack or something related and never a mention of the cause of death as being diabetes. So sad that all those statistics go uncounted for. So I'm sure the autoimmune system is being destroyed as well.

But here's the kicker. Because you can go high during the night and low during the day....that can average out to a very normal A1c. What doctor ever goes anywhere when a patient has a normal A1c? Oh! They just pat you on the back and tell you you are doing terrific!!!

Soooooooo STUPID!!!

And another comment to the post "denial"

Your words do give great perspective - and I do love the diagram of the entire community in denial. The fact is that we are dealing with a suicidal person here - it's just suicide in slow motion. Denial, escape, repression, delusional attitude about some miracle solution - they are all coping mechanisms - but would be good to know if anyone has found anything that breaks the cycle. Oh, feel a low coming on in the next room - off to get the groceries! Sound familiar?

Truly, truly.....sounds all to familiar!

I have always explained to my friends that I am watching him kill himself one step (piece) at a time. It truly is the saddest thing ever and I think suicide would be much easier for me to handle. But every bag of potato chips, every bag of Dove chocolate, every big thick juicy steak coated in layers of grease, gravy....ok...enough to make me want to throw up! But for me, the worst thing is the 800+ pills that he takes 4 times a day. Ok, I am exaggerating, but you get the point! Each and every one of them puts a stain on his kidney function and is weakening what little he has left to use. And he just doesn't get that. Because they were prescribed by a doctor. Oh duh! Don't get me started down that road this morning!

Besides....we need to go out to an early lunch as he's been grousing and angry all morning - I don't think he had near enough for breakfast!

Comments

Tonight, I had 3 comments on previous posts and I thought I would post them all here. Why? Because I think it's really important to share what other spouses of non-compliant diabetics write.

Look at what I just found!!!!!!!! Thank you, so much, for starting this blog and, to each poster for sharing!!!!! I have been married to my Type 1 diabetic, who was diagnosed at the age of 19, for nearly 25 years. The marriage has had it's times of hell - that is for sure. The anger; the noncompliance; refusing to even talk basics about the disease, hiding everything he could; the affect it has had on the entire family - all very tough! Thankfully, he is more compliant than he was for the first 20 years of our marriage. What does that mean? That means that now he will test his blood when I ask him to, without being an idiot about it. Translated, he still wants to put the responsibility of following a schedule on me when he doesn't feel like doing it. A far cry from what he use to do. There use to be tons of highs and lows. We even had the department of family services involved in our life for a year or so, because he had a low while at a local fast-food chain, with our son, who was 4 at the time. The emergency room doctor was so angry with seeing him all the time, called the State on him, hoping to wake him up. It didn't; just put even more stress on me. What turned him around, for the most part? I had to have a biopsy, which frightened him significantly. The results were negative, to our relief (thank God for that!)! It gave me the opportunity to point out to him that I felt the way he had, concerning my biopsy, every time he had a low. I am thankful that he now will test his blood, when I ask, without being a jerk about it (when he chooses to sleep instead of keeping to a schedule). Of course, this means that I have to include getting up at midnight/1:00AM to get him to test his blood. I still don't always catch them, especially weekend mornings when he doesn't feel like following his regular schedule (we had one this morning). Unfortunately, he's not as pleasant with his children (who are now teenagers/early twenties) when they try to get him to test on schedule. I've had to teach them to ignore his meanness during those times - to stick with what he needs to do (basically teaching them to disrespect him - to make sure he does what he needs to do to care of himself). He's not a happy man; yelling frequently; lazy; eating whatever he wants, even with high blood pressure and cholesterol and some sort of nerve issue that appears to be affecting the left side of his body. Yep, I know he's depressed. He goes to the doctor only when he needs a prescription refill. I've had the medical community behave as though my concerns were of no value: it is my responsibility to make sure he takes care of himself; my concerns are not legitimate, etc. I've rambled enough. It is good to have a place to share with others who walk the walk.

I, too am so grateful for each post that is shared here. I don't feel so alone. I know there are others going through exactly the same thing. I agree, my hubby is more compliant now than he has ever been. I think it is a necessity. They have to be. Probably because of the pain and if they don't tell the doctors what they are/are not doing, they won't get those prescriptions refilled!

I think my husband is terribly afraid of being alone when he dies. Well, in the moments when he remembers what is going on in his body. Like when we were in the river bottom and he had that angina attack. But how soon he forgot and yes, he still has not been to see the doctor over that one.

I felt like you were describing my husband while I was reading you post and it grieves me that there is another woman suffering the same thing - yet at the same time I find comfort in it. How sad is that?

I've been married to a type 1 diabetic for nearly 30 years. Tonight he had a very bad insulin reaction I couldn't pull him out of. I had to call the paramedics. Not the first time, but usually I can take care of it myself.
It's been 30 years of hell for both of us - endless low blood sugars, poor sleep from checking on him throughout the night, not to mention the rigid life that comes with it. It's not his fault. I know that. He does work hard to maintain his blood sugar. He hates putting me in this position.
But tonight, I could take it no more. I broke down and cried for 15 minutes. I consider myself a strong person, but I don't have much strength left. I feel so guilty that I have these feelings. What do you other spouses of diabetics do?

First, is he ok? It's interesting to read that your husband seems to be compliant, yet still has the same problems. You know, crying for 15 minutes is just fine. You deserve it. It is our body's natural way of relieving itself from stress....and any time you have to call a paramedic - there's stress involved. Don't feel guilty for a second! It is perfectl natural to cry.

What do other spouses do to relieve stress? I'd venture to guess that most of us cry at some point. I lose myself in my art. I used to walk for an hour or two - however long it took for me to get rid of the stress. There was a period where I cried at the drop of a pin - I was so stressed out all of the time. We probably all find different ways at different times. But again, don't feel guilty. The body has to get rid of the stress. If you let it build up inside, then your immune system will lower itself and you are more likely to get sick.

So, we women, it is so hard for us to love people when the setting is not the way we learned it to be. I'm having trouble putting this into words, but I'll try. Most of us learned that its hard to tell your children no sometimes when they look at you with tear-stained eyes, but we do it anyway - because it is the right thing to do.

But, we never, in our wildest dreams, expected that we would be put in a position of having to show the same type of "tough love" to an adult man, whom we married, expecting it to be a sort of an "equal" relationship. And not just tough love about taking out the garbage or changing diapers. But about his life or his health.

Here is my life-changing story. A number of years back, I was getting ready for work one morning, and I received a phone call from the state police asking if I knew where my car was (not my husband - my car). It had been involved in a hit and run accident, going the wrong way on an interstate highway entrance ramp, hit a few cars, and then was driven away. Everyone assumed the driver was drunk. And they were angry! There was a pregnant woman in one of the cars. No one was hurt, but they were looking for the car and the driver -which had to be my husband at 6:30 in the morning!

You can imagine my horror! I explained that Tom is diabetic, was probably low, not drunk, and hopefully he would stop and call me. (this was in the days before cell phones!)

I'll cut to the end -- He did not lose his license nor did he go to jail, but he did lose his insurance and the accident in total cost us about $5,000 plus having to buy a new car. Together we lost about two weeks of work between court dates and doctors appointments.

To top it all off, his mother blamed me for the accident, because I didn't make sure that he tested himself before leaving the house and I didn't force him to go to counseling.

I tell you this long story, because it was then that I finally learned that I am not his mother, and I truly have no control over his disease or his actions. No matter what he does or does not discuss with the doctor (or his mother) is completely out of my control.

If his sugar dips dangerously low and we are awake, I will suggest he take some juice, or a beer, or that he test himself (because he never believes me). and then I leave him alone. If it happens in the middle of the night (as it often is), I'll try to give him some of those glucose gel things. I never give him a shot. the one time I tried, he hit me so hard I had a black and blue mark on my arm for weeks.!

As you all know, nagging and whining don't work. If he gets worse, I'll offer again. But if I can't tolerate watching him decline, I'll leave the room or leave the house. He either takes care of himself, or gets so bad, he eventually will take some juice from me, or I call 911. The emergency people know me now. Its not that I call often, but I do what I have to do. Tom absolutely hates it when I call them, so I only do it as a last resort. But you know what? He is stronger than me, and I can't force him to do anything he doesn't want to do. Even save his life.

when these events happen, I do feel like I have to be tough. but I don't think its "not caring". He put me in this situation. I often cry. Those 5 or 6 minutes waiting for the ambulance to arrive at 2 am is horrible - I can't tell you how many times I pace like a crazy person. they show up and test his sugar and its down to 30! How can he do this to his own body? much less to me?

but of course, just ask him, its never his fault.

maybe you think I'm hard-hearted, and maybe I am. I don't think so, its just that after 25 years of living with this, I'm coping the best way I can. I have my own issue and try to deal with them with as little impact on others as possible. why can't he do that also?

Heavens! you are NOT hard-hearted!!! But other than that, I don't have the answers to your questions. I can only guess. Why does he let his sugar drop to 30? Laziness? Lack of self-respect? Secret desire to die? Those are the very thoughts I seem to have when my husband goes so low. Of course, those thoughts come after I panic, freak, call 911, pace, worry, have an anxiety attacki......LOL!!!

Why can't they deal with it in a quiet, non-intrusive way? Hmmm....I think that's impossible and I think I know why. When you go low, the body's needs adrenaline to increase insulin. So (probably subliminally) the diabetic has to create a situation that forces an adrenaline rush. I've often considered getting a hammer out and just smashing a couple of his fingers!!! Well, think about it - that would definitely create an adrenaline rush, get the glucose heading up again. I think they create drama, they yell, they get angry - often not really understanding it or able to control it- as an unconcious effort to increase sugar.

I've started just to allow the argument to build. The sooner he gets insulin flowing, the sooner he will come out of his low. So within reason - I will on occassion allow him to continue down that hostile path. But more often than not, I quietly tell him he doesn't have permission to yell at me, or talk to me like that.....and then I will leave and go shopping, go to a movie, do whatever it takes to get myself out of the house, away from his "mood". Like you said, we can't fix them, cure them, heal them, make them better, change them. And I have learned that there are times to just say, "I can't live with you right now" and then walk away for a few hours or even a few days.

My MIL would blame me, too.....but I have learned over the years that as his mother, she subconsciously created a dramatic moment in their lives whenever he was going into a low. My FIL is also diabetic and she is extremely skilled at creating dramatic moments exactly when he goes into a low. It is an interesting dance to watch. She has trigeminal neuralgia and will have horrible pain the moment he starts to go low. He panics, determined to help ease her pain and you can almost see him go from a low back to a normal within about an hour......which is precisely the lengty of one of her attacks. When he is gone, she will go a full day without an attack. I'm not even sure she is conscious of the "dance" they do!

While I refuse to become such a drama queen - I've definitely considered using that tactic if I need to!

While there is an element of comfort in knowing that I am not alone in this struggle.......my heart goes out to each one of you because I truly know and understand what you are going through. Do not allow him to take an ounce away from your self esteem! This is his disease - not yours!

DW