Almost too long

Here's a rather lengthy post:

I just ran across your blog today and it was a relief to learn more about this disease. I am fairly new at this. I have only been married to my diabetic husband for 7 years and he has only been diagnosed for about 4 years. We should have seen it coming because his mom, dad, and maternal grandmother had diabetes. We do not check his sugar very often, but it is always very high. I have read that over time a diabetic that has high blood sugar will eventually start going from high to low and begin that cycle. I have always contributed his anger to his diabetes, but I see on your site that your husband's episodes are when his sugar is low. Can this happen if it is high? We use natural remedies for all of our illnesses and this is the biggest medical thing that has happened to us. He does not want to go on meds (I don't want him to either, because they cause more problems)but he hasn't been the best at doing the cinnamon, garlic, dandelion, and other herbs plus the vitamin supplements. His job keeps him from being able to exercise regularly and, being a former Marine, he misses that discipline. He drives a truck and has to be certified every so often and that's when he takes a prescription so he can get the signature and then he gets off the meds.

Being young and inexperienced with this condition, I am not as familiar with the many problems that your husband has. Of course I worry about our future and that is mostly because of our children. I am a homemaker and when we began our family we chose to homeschool. We sacrifice many luxuries so that we can afford to live on his income. We refuse to put our three children (and one on the way)in daycare or public school. The reason I can not call this "his disease" and not mine is that we are one. If he gets ill and can no longer work, then I would have to go to work and not be able to care for our children. If he dies I will have to find someone else to take us in and become a husband and father to us. I have reminded him of this often and at times I ask him who his choice for my future husband would be. This is my way of reminding him that he is our provider and that we need him to stay healthy.


I hope I can encourage you as much as you have educated me. Sometimes I sense a bitterness and a coldness in your attitude and at other times I can feel the love you have for your husband. I am married to a "command man" meaning that he is demanding, expects to be waited on, and determined not to be nagged or led by a woman. I don't expect to ever change him because that is how God made him and it is up to God to change him. I can not neg him into "compliance" any more than I can make the stars move in the sky. When I do try that approach it just makes things worse. It is hard on me at times, but I married him for better or worse. It is definitely worse when he is angry and blaming me for things that I have no control over. It would have been easier to marry a "steady man" but I did not know about these things then.

I do love my husband and for that reason I stand beside him. If he chooses to refuse treatment, if he becomes sick, if he get disabled because of this disease, I will treat him every day as if he were the man of my dreams. I will lift him up in prayer and pray for God to change him. I may even pray that God does "whatever it takes" to wakt him up and make him take charge of his disease. When he can't get a certificate to drive and loses his job I will pray for God's mercy and another job. When he dies I will mourn and then I will move on - for the sake of my children. He knows what he is doing and I will allow him to be a man. But I will not say to him that he is alone in his battle. I can not tell him that this is not my disease. He needs me to be his anchor and his support. I am his help meet (a helper suitable to him) and I will meet his needs. I will check his blood sugar whenever he wants it checked - he does not want to check his own. I will buy foods that are good for him and not buy sweets except for special occasions, even when he mentions every week that he wants me to bake a cake or pie. When he wants to pig out I will let him and not nag. But I will continue to tell his daughters to tell daddy, "We don't want you to die from diabetes." And I will occasionally say, "I wonder if so-and-so from high school has ever married?...."

I wish that you could bring yourself to feel this way. Perhaps he would be changed by your honor and respect and renewed concern. I can tell you are afraid to lose him, but I think you have built a wall that has allowed you not to feel that sometimes. It's easy to say "it's not my disease" when it doesn't affect you, but everything my husband does affects me.

I suppose you think I will grow older and wiser as a diabetic's wife and become bitter and hard-hearted over the years. I plan on fighting that attitude by becoming all that my husband needs me to be - until the end. I play on growing wiser in ways to help support and encourage my husband. I am not saying these things to disrespect you, but I just wish you could feel the joy involved in being such a helper to your husband. I am not saying that he deserves to get everything he wants, but you already know that it does no good to go against him. So why not let him destroy himself, endure a little disrespect, and enjoy the time you have left with your husband. I know you have needs - all wives do. But it is a glorious thing to put someone else's needs above your own. Although he may not say it he needs you now more than ever. Perhaps if you would act a little more vulnerable he would realize that you need him to stick around a little longer. You could do some research on natural remedies. It is proven (if you look in the right places) that drugs for diabetes cause heart problems. All man-made drugs lead to further complications and side effects. He is in a rut and can't get out. Maybe you can be his salvation.

There is a tea called "Dr. Cinnamon Tea" www.bulkherbstore.com) that is supposed to be good for diabetics. There is a great book on marriage call "Created To Be His Help Meet" that has shown me how to love and honor my husband-no matter how bad it gets. (www.nogreaterjoy.org) I can not control him, but I can control myself. I choose to be a blessing rather than a curse to my husband.

You may think I am trying to be mean and hurt your feelings. I really am not. I completely believe what you say you are going through and I can understand how it feels-to a smaller extent. I also think our husbands react a lot to our attitudes and that we can change a lot just by letting them lead. I guess I will stop now. I hope I didn't upset you. I truly do think you can change your husband's outlook.
-RD

I think you must be quite young and have much to learn about life and about living with this disease. Your husband has had diabetes for 4 years, mine has had it for 35 years. Huge difference in what the disease does to the body over time.

When my hubby goes high, he gets very nervous, like being on edge, maybe aggitated is a better word, so yes, he get's angry then as well. But it's a different kind of anger. Maybe "high" is an aggitated, nervous anger and "low" is a bad mood anger. I can't explain it, but it's different. Yet it can happen at both ends of the spectrum.

Do you understand that each of your children will have a good chance of inheriting this disease as well? Best thing you can do is start a family nutrition program now. And stick with it like a religion.

I understand what it means "that the 2 shall be 1". And of course, you will sense bitterness and coldness in my attitude - probably more often than not. After your husband has been incontinent for months and the mattress smells of urine....we'll see how your bitterness level is! :o) I think it comes with time. But yes, I do love him. Still.

I will have to disagree on "this is how God made him and it is up to God to change him". God did NOT make my husband like this....his non-compliance has made him like this! His refusal to exercise, monitor his blood levels, eat right...that's all that has made him like this. God created a perfectly healthy man, added diabetes and let the man decide how to handle it. I think "my man" failed misearably!

"I will pray to God to change him". Good luck!

Not sure it's such a good idea to have your daughter get in the middle of all this by having her tell her daddy she doesn't want him to die. I may be manipulative, but I don't think I'd ever do that! And I certainly never "threaten" my husband that I might marry someone else when he dies. He knows well that if I leave it will be because he refuses to take care of himself.

You may not ever get bitter and hard-hearted. I don't think I am that at all. I tend to think I'm realistic. I know he is not going to change, so I don't pray for that. I know that he is not going to take better care of himself. Part of that comes with age. If he hasn't made changes in the past 35 years.....it's not going to happen now. Maybe that's realizm and that wins out over optimism and hope over the years.

Hmmmm....and explain to me the joy in assisting him when I clean up soiled matresses? Nope...I just don't see that! It must be your youth! LOL!!!

As far as a wife that has needs, my dear, you need to understand that when the nerve endings die.....that includes those which make sexual relations possible. If the drugs don't put an end to that.....the neuropathy will. Not even viagra will help that after a few years. I fear you have much to learn. But I think it's really good that you are getting involved now so you will know what is going to happen and you can go forward with no surprises.

Youth and innocence are such bliss! Read though all the past blogs and comments. You will see that a diabetic who is non-compliant is not about to take natural remedies either. And I'm not sure natural remedies are going to help while he continues to consume bags of candy and potato chips.

I don't know why you think I'm a curse to my husband, but I find that funny! I doubt he would think that at all. I am his best friend and he is mine. When he is having normal sugar levels, he is complete fun to be around. You haven't upset me at all. I just see this as the total distance between youth, naivity hope.......and age, experience and knowledge.

Good luck at changing your husband through prayer, support, whatever it takes. Print this out and read it in about 35 years. It might be fun!!!

Diabetics Anonymous? Who would attend?

Another comment:

Hi--with HIPPA laws, I wonder what kind of effect this could have, but is there any way you could contact your husband's diabetes doctor (I can't remember if he sees an endocrinologist or not) and tell them that you would like the doctor to have your husband consider doing a trial of a continuous glucose monitor? I've done 2 day trials in the past, and the results can be really eye opening. You could print out the results and then show your husband exactly where he is going low and exactly how it coincides with his behavior. If the doctor pooh-poohs the idea, explain exactly why you think it is needed (the family history with his daughters, your own experiences, etc.).

Also, I don't know where you are based, but some of the larger medical centers have therapists on site who have backgrounds in diabetes. Would it be worth contacting one to get coping tips for living with a noncompliant diabetic?(Maybe they'd do phone sessions if you're not local). I know you say it's not your disease, but it's like how Al-Anon is for relatives of alcoholics--it'd be to learn how to better deal with someone who has a particular disease.

We have insurance through separate companies, so I can only talk to my own insurance providors. If you read back through my blogs, you will see that I have been to diabetic counselors, nurses and nutritionists - educating myself as much as I can and coming up with a wide variety of ways to deal with life as a spouse of a non-compliant diabetic.

He does not see an endocrinologist - and I have asked him to do so on a number of occassions.

He would never consent to even a trial of a continuous glucose monitor. I have asked him in the past. We have done the manual testing with a grid and a scale comparing lows to moods. Under a nurse's supervision. It made him etremely angry. He knows the problem exists. He simply chosed to ignore it.

Interesting comparing being a spouse of a non-compliant diabetic to being the spouse of an alcoholic. I think we'd have to put that as an alcoholic on his last legs! My brother-in-law is an alcoholic and I would take that any day of the year over this. I know you are trying to be kind - maybe we could start a diabetics anonymous. I just don't see anyone attending.

In Alcoholics anonymous, the alcoholic admits they are an alcoholic. The apologize to others for what they have done to them. They attempt to quit drinking.

My husband is in total denial as to what diabetes is doing to him. He has never apologized to me for what he puts me through. And he's not about to quit this inch-by-inch suicide mission he is on. He ate a box of girl scout cookies 10 minutes ago.

Edona wrote:

I feel for you. I thank you. My DH would never blog, let alone read a blog, but he would completely understand the shoes you walk in. I've been Type 1 diabetic for 37 years. My DH and I have been married for 15+ years. I always, always thank him for marrying me, because I know it was probably one of the hardest things he's ever done. But, he's stood by me. He's picked me up when I've fallen (on floors, through shower doors, etc..) with a low blood sugar. He's learned to tone me out when I'm ranting with a high and he can set his clock to the minute when I come down the hallway after a shower and a pump change and my sentence starts with "Guess what...?" He and our two kids all shout in unison... "you hate diabetes!". Sorry about the stalker. They're out there! And, there do seem to be a lot of angry ones.

Thank you!!! It is amazingly wonderful to read from someone who knows what they put their spouse through. Thank you from all of us!!!

Lyrehca said...
I know your husband would probably never consider anything like this, but there *is* a warning system that gives you an alarm when you're heading low (or high): the Dexcom continuous glucose monitor.

It would be interesting for your husband to do a trial run of one for a week to see exactly where his blood sugar is all the time.

You know it! He's nt going to ever do anything like this......but I would love it if he would. He probably is not a good candidate for any type of continuous monitor as he would never clean it. How sad is that?

You know, I do sometimes wonder if there is an element of the fact that we are talking about men -- you know the Y chromosome.

I never thought of my husband as the macho type but he is a caretaker and he really does need to be in charge and he likes to be the car-driver and (ok, I'll stop, you get the idea)

Now that I spent the weekend on the internet looking for on-line opportunities to "chat" and seeing your response - I get it. first, some people are SO defensive - they don't understand that we aren't really saying these things so much as a criticism of them but as a place to go to share our feelings and get validation for what we feel. Of course, we think they are wrong -- because so much of what they do, well is wrong. But that's not the point of this space -- its really to share.

I looked on one website (I won't name it you probably know) and they are all about being "kind" to each other. Well that's all well and good but it really doesn't help when you are desperate and scared and think you are the only woman in the world who thinks that she is the most horrible being because she can't handle one more time when her husband hits bottom.

and we do appreciate you filtering out the screaming "jims" who want to make us feel bad. we are not bad, we are burdened and loving and caring and we try so hard to do the right thing.

we know its difficult for them that's why its so difficult for us. otherwise it would be easy for us to leave when they abuse us so terribly. who else would put up with the type of emotional garbage we get?

Now I'll stop and leave you alone.

You are terrific I wish you a wonderful trip. Tom's wife

Dear Tom's Wife. It's just not online....the diabetics I meet in person are completely defensive. Some of my art pals are starting to open up and talk to me about it. A couple have even acknowledged their denial. Most of them are women who don't "have the time" to eat right or test. I find that a bit humorous as I think we all still have 24 hours in a day!!!

I tend to call a spade a spade and just don't go in for that touchy-feely stuff. Doesn't seem to help me one iota when he slides of the chair into a coma on the floor. And as you said, when you are scared to death....no help in being kind and polite and politically correct at that moment either. I have often wondered what a non-compliant diabetic does when no one is around. And I know that is exactly why my hubby often comments that his worst fear in all of life is that he will die alone.

Thanks for your post. There really is comfort in knowing we are not a lone and in understanding the moment-by-moment battles we each face.

DW

My inacurate picture?

I just love this! Again, from my "angry" follower......

Actually, I am not angry about the disease - well diabetes is actually an autoimmune disorder but let's not split hairs.
What I am upset about is the inaccurate picture you portray on your blog.
I know you get more negative comments than just my own because I have talked to other people who have posted them.
Do you know what you are doing to the diabetes online community? You say you are on here to seek support other people, but that is not what you do. You just vent YOUR anger. Who does that really help other than you?

First, you need to be very careful what you write to me. Look up the word "disease". It INCLUDES "autoimmune diseases" and that, my dear, includes autoimmune disorders!!! So, therefore, I will stick by my words.....diabetes IS a DISEASE!!! I'll split hairs with you any day! LOL!!!

Second. Yep, you have no idea how many negative comments I get from ANGRY diabetics. And I think I'll start posting and commenting on all of them if that's what it's going to take to prove my point. Which is.....

Third. This is MY blog. It is about MY life - living with a diabetic. It's not about being a diabetic. It's not about you. It's not about diabetes as a whole. It's about the finite life of one woman dealing with her own individual life and what goes on here. So of course, I vent my anger. That's why I started this blog. Duh!!! A Nurse Practitioner in the diabetic clinic actually told me to start writing down my feelings!!! I never set out to help anyone else. I chose an online blog because I just knew I was not alone in what I was going through. I now KNOW for a fact that there are numerous other spouses who deal with the very same thing that I deal with and I'm learning that many, many, many of them are much worse than me. But when I started this blog....I really thought I was the only person in the world dealing with this.

Fourth. Who does this blog help? Well, probably not the diabetic, that's for sure. But I imagine it does help other spouses. From the comments I've received, I believe that it does. There is comfort in finding out that you are not alone. There is peace in realizing that it is not you going crazy.....it is the diabetic having highs and lows, not remembering, that is the problem.

Fifth. I don't for one second believe I portray an inacurate picture. In fact, if you really read all the way through my past posts, I think if anything, some of them have been way too acurate! My husband's loss of bowel function for instance....brought on by neuropathy of the nerves in his intestines....couldn't get much more accurate than that!!!

Here's what I think. That the medical community wants to cover this up. After all, what kind of press would it be that a diabetic who has a normal A1c could possibly still be going high and low 24/7? Wow! Let that one leak out!!! And of course, they want their meds to cure it all, so the diabetic couldn't possibly be doing anything negative to the family, right?

And then you have the diabetic who can't remember what awful things they did to their family when they were "out of it". My adult step-chldren believe that they grew up with an abusive father. I have lived with him for 10 years. The only abuse I have seen out of him is when he is in a low. He was horrified when I read to him something his daughter had written about her memories of her childhood.....because he doesn't remember treating her that way at all.

So, all this leads me to believe that you (the writer of this comment,not the entire diabetic community) are in complete and total denial about what you do to those who surround you. I think most of the spouses would agree with me on that one. After all - when you drop into a low, you most often don't remember a thing you said or did while in that low, so how on earth would you know the impact you have on any of us?

It takes an incredibly strong spouse to stand up to a diabetic. The worry alone that you go through when he goes into a low is draining. The constant mopping....LOL!!! I could go on forever. I'm just not sure there is a diabetic out there who actually understands what a spouse goes through. I don't think it's possible because of the problem with memory loss during lows (and highs).

Denial is just a beautiful thing - as long as you are the person doing it. This blog is for those of us who continue to stay with our spouses, assist them, take care of them, love them.....while we watch them destroy their bodies and their lives one ounce at a time.

Go ahead, make another annonymous coumment for all the good it does - you seem to just be proving what I am writing about beyond a shadow of a doubt!!!

What I want the diabetic community to agree to is that this is YOUR disease, not mine. It is Your body, not mine.

I am here simply because I love my hubby. But in no way does that obligate me to put up with, endure, absorb, take in, deal with......anything related to HIS disease. I do it because I love him, not because some set of "rules" out there tells me that I have to. And once a spouse realizes that.....and realizes that they can change their mind at any moment and walk away from all this - that provides us with the freedom to continue on doing what we are doing.

This blog is also for anyone who has left a diabetic spouse. We undestand completely and totally - you did it to keep your sanity, you did it to survive.

I see my future in this post

Anonymous, I read your post with great sadness:

Geez, I don't know where to start... First of all, I do NOT ride in the car with my husband, I do all the driving. Diabetes effects the vision big time. When his numbers are off (all the time) his vision changes ... scary stuff. My husband eats whatever he wants, does take a ton of meds, is on dialysis. Kidney failure can happen almost overnight. As far as monitoring meds, you have to monitor meds, food, exercise and overall common sense. If you think it is bad now, what until dialysis. You can only have 32 oz. of liquids a day (includes all liquids)... It is a nightmare!!!!!!!!!! I clean my floor all the time. Pills that he doesn't see that he drops, just dropping things because he can't feel his hands. It is terrible. when you go on dialysis, dialysis only removes so much poison, it does not remove phosphorus, potassium or calcium, so you take so many extra pills. And of course, if you are "non-compliant" like my hubby, you end up with complications that are unbelievable. My hubby has been in a cast, "crow walkers" and now "special shoes" because both his feet and ankles have collapsed. So there is no party going on in my house... but he still eats chocolate, lunchmeat, and all kinds of sugared drinks. That's what I call non-compliance!!!!! If I can say anything to all that just think this disease will just "go away" ... it doesn't! Take your blood count, don't eat or drink what you are not supposed to have, exercise and just take care of yourself. It is a living hell for you family if you don't. We have 5 kids (including a child with special needs) and life has become so difficult. The sad thing is that it could be so much easier if only my hubby would leave the sugar and lunchmeat alone. Obviously, it has been a really challenging weekend at best. It does feel good to know that others can relate. I just wish that people with diabetes would wake up and understand what they are doing to the people who love them with all their hearts. When I look into my childrens eyes, the pain of what their father is doing to them is almost unbearable. Please look around at the ones that you love and stop and think ... Life is too precious ... Love us back as we love you!!!!!!!!!!!!!!!!

Thank you for this post. I think it should be an eye opener to every spouse out there. And I guess perhaps mopping the floor every day is just going to be in my future.

With my hubby at 20% kidney function, I know it is just a matter of time before he goes on dialysis.....since he's not doing anything to prevent it. I honestly don't think he has a clue how bad it is going to be. I don't think I have a clue.

I truly feel so sorry for you. And sad for your children. I don't see how he can do what he is doing to himself, to you and to your family. But I think there are so many, many, many others in this same situation.

But here's a question I've been pondering for some time now. Your last sentence hit it hard. Can they love us back? If you don't love yourself....how can you love anyone else. And certainly, they must not love themselves the way they treat themselves. It just doesn't make sense to me.

Here's wishing you the very best. My prayers are with you tonight.

DW

My hilarious diabetic stalker

Some people are just way toooooooo angry about having this disease!

If you move it to a forum that you couldn't moderate then people would find out all the angry comments you get from people who HAVE walked a mile in your HUSBAND's shoes - something YOU have never done. From people who actually UNDERSTAND diabetes.

You can continue to moderate my comments just as I can continue to comment anyway.

You just have to feel sorry for someone like this. Don't know if it's a man or a woman, but apparently someone who has diabetes because they "have" walked a mile in my husband's shoes.

A. My blog is about spouses. NOT about diabetics.

B. This is about living with someone who has diabetes. NOT about living with diabetes.

C. This is about walking a mile in a spouse's shoes....NOT a diabetic's shoes.

D. This is about actually and literally understanding what people who have diabetes do to those around them.

So dear anonymous....I just pray that one day you can get past your anger and figure out what the heck it is I am writing about! I'm not writing about you, the diabetic, I'm writing about my life, about what I deal with, about how it is to be married to a diabetic.

Why on earth do I want to post "all the angry comments" I get from diabetics? I understand you are angry. That's what makes being a spouse so difficult - we have to live with all your anger.

So there, I have posted your comment. Perhaps one day you will understand that this blog is NOT for those who have walked a mile in my husband's shoes. It for those who have walked a mile in the shoes of someone married to a diabetic. :o)

Before you send me another snooty comment....think about that for a bit. If you have really walked a mile in my husband's shoes....do you understand at all what I am going through? How could you? You need to be married to a diabetic before you can possilby understand what a diabetic puts their spouses through.

The fact that you still don't get that is what makes all this so hilarious.

DW

Jim wrote:

Is there a little inconsistency here? On the one hand, you complain about non-compliance, but then you say:

"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."

I have Type 2 diabetes, and my doctors call me noncompliant. I refuse to take any medications, because of severe side-effects that I have experienced. Instead, I am following a very rigorous (and unusual) diet, which seems to be working better than any medications.

I would distinguish between two types of non-compliance.

There is the non-compliance as the term is used by doctors, meaning that you don't follow their orders, given after a very brief exam. Those short exams followed by one-size-fits-all prescriptions are worthless at best, and life-threatening at worst.

Then there is the non-compliance when you don't do what you know to be right, based on your own knowledge of your body. I am very compliant with my own sense of what I need to do, which is very different from what the drug-pushing doctors say.

Well, then, there's another kind of non-compliant. He takes all his pills regularly. That is the reason why he can eat whatever he wants (in his mind) and the reason why he doesn't have to exercise or test his blood......all those pills take care of him. As long as he takes his meds....he just doesn't need to do anything else. He can eat anything he wants, including that bag of chocolate followed by a bag of potato chips! He can deny that he ever has a low or a high....because he is taking those pills!

What he doesn't seem to "get" is that with a kidney function of 20% - those pills are hard on him. He could do so much just by testing, eating healthy, exercising just a little....but he's not going to change.

For me, being compliant would mean that you do everything in your own personal power (diet, exercise, test) and then you take the meds that your doctor prescribes based on your compliant behavior.

But I think when meds are prescribed because you fail to take care of yourself, then you are non-compliant.

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Another post:

geez, I just want to smack him. (not really that's just an expression) And while I understand, I hate that you go through that whole thing of thinking through why he is says what he says. I wish that you could just have the peace of mind to think, "oh well, his disease is causing this, I'd better get out of the way."

but of course, so much easier said than done. I still get in the car with mine -- and realize 10 minutes into the trip that his sugar is so low he shouldn't be behind the wheel. Last night was a perfect example. 7 pm, going into the city for dinner, having a nice conversation, I mentioned that turning at the next corner might help considering the way traffic looked ahead. He ignored me and then was confused about how to get to the restaurant. It took me several minutes to realize the issue. (I know you are thinking after all these years, I should know the signs by now, but stupidly I continue to trust him!)

Anyway, I get very calm and just try to have him pull over so I can drive. But its not easy because he likes to drive in the left lane so much. But once again we made it out safe. his glucose reading was 51. but since nothing bad happened, his assessment is that I'm overblowing the situation by being angry. or when he realized the futility of that he lied and said he tested before we left the house and his glucose read at 90 something.

there just is no winning these arguments.

and we go on......

Tom's wife

by the way, I have a question for you, have you considered moving this to a site where everyone can just chat with each other as they wish? or do you know of one? clearly there are lots of people who are responding to you on this topic. but I haven't found a site that offers such a chat. it seems like you bear a burden of having to be the keeper of all of these responses. would it be easier for you if there was a more open 'forum'. if that's the right word? I'm not a very good web person, just asking. thanks.

First, I laughed about the driving incident. It is amazing to me how fast blood sugars can drop. And how stupid I can be and not recognize it. I just wonder if anyone has ever timed it? Like can they be 90 and go to 40 in 2 minutes? I swear they can! But then, getting him to test would be impossible. Driving with a low is totally scarey. I am doing more and more of the driving...because if I'm not driving, I'm praying like heck! LOL!!!

I wish there was some early warning system - a bell that went off - something that would alert me to the fact that he is heading down. I'm paying more attention to mood vs eating - how long has it been since he last ate when he starts to get grumpy. But I swear, I don't even think about it half the time. Sigh.

As for another forum....someone started one once, but it just didn't get any response. I think the problem is that you get angry "compliants" who rant and rave. Notice, I don't allow their posts here. Oh yeah, they still send me nasty little emails and I just ignore them. My philosophy is that if you haven't walked a mile in my shoes....don't try to give me advice!!!

I had an artist pal here the other day and she is diabetic. She said my descriptions of life with my hubby were interesting and she agreed that she did not always know when she was going into a low....nor could she remember what she said while in a low. That was encouraging to me.....someone who has diabetes and is open enough to admit they don't remember what happened when they went low. For the most part, the diabetics who write to me deny having lows, and get angry because I use the word "diabetics". If you haven't noticed, I sort of call a spade a spade! :o)

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My "rant" for the day. He's been home 3 days and I've mopped the floor 3 times because he spills stuff all the time. And you think that's not related to his diabetes? Of course it is!!! He has neuropathy in his hands so bad that he can't close his fingers any more than about 2" apart. He can't pick up a fork any more. And half of what he tries to pick up slips right through his fingers and onto the floor. So I mop. But it sure was nice to have 3 weeks off from the daily grind. I feel like I've re-entered "maid" status.....cleaning up the mess. Don't even bother to suggest that he mop the floor after himself! Not going to happen in this lifetime!

One more week and I'm gone traveling and teaching art for 3 weeks. I can survive anything. :o)

DW

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!!!

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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

It's in his ballpark

I know that many people do not go back and read prior post's comments and that's why I like to bring them forward - to make sure the world understands that this is a very common thing for spouses of non-compliant diabetics. Here's a post from yesterday:

I too, have a diabetic husband (type 1). He's been diagnosed since he was 19, and is now 62. His overall health is good..no neuropathy, eye, or kidney problems. He watches closely what he eats, and tests several times a day. I am thankful for this, however despite all he does, he still has insulin reactions several times a week that leave me drained and anxious. He hates my suggestions, and interventions. Like many of you say, he doesn't remember how he behaves during a reaction. When I suggest looking into an insulin pump or going to a "real" diabetes Dr., he gets angry, and this usually ends up as an argument, where I am the bad wife, and all is on my shoulders. I had no idea I was not alone in this battle! Whining doesn't help, but knowing that there are other spouses out there that might be able to help each other with solutions, moral support, and just an "I know what you're going through" is wonderful! It is very hard to feel as though you sometimes hold your mates life in your hands. I have decided dto explore every avenue I can to help him, then, when I've done that...I'll try my best to let go, and it's in his ball park.

Trust me, you are NOT alone!!! I should have kept a log of all the comments over the years just to this blog alone! We are "alone" only in the fact that the medical world does not acknowledge that this disease has a HUGE impact on the entire family. It affects how children are raised. It affects divorce rates. (I have to wonder how many spouses simply walk away quietly - my husband's ex did).

And I honestly, really do know what you are going through. No, whining won't help. Being argumentative doesn't help. OK, not really much of anything "helps". LOL! But it is sure nice to know we are not alone. It's nice to hear how other's cope and survive. It's heart breaking to hear when the spouse dies. Or becomes abusive.

My wish in all this is that the medical world would wake up, start to listen, and somehow offer help. I think I had my best period when the doctor/nurse asked my husband to track and write down his blood levels 8 times a day and then she actually took the time to chart out his highs and lows. He was conscious of the impact on his mood as I was tracking them at the same time.

And I wish someone in the medical arena would actually start to acknowledge the memory loss that occurs as blood sugar levels drop or go sky high.

All that being said, If my husband was not going to a "real" diabetes doctor, I would be beyond livid. There is simply no excuse for that. So are we back to the question here.....is he in denial? Because if he is not seeking proper medical attention, then he must be in denial on some level. And if he is, then all we can do is acknowledge that is where he is and understand that yes, it really is in his ballpark.

Letting go is impossible to do because as women, we want to nurture and heal. As men, I think the general concensus is that we want to fix and make it all well. Same thing. We all love our spouses and want them to be well, or at least be on a smooth level of care with no highs and lows. Research and information do help. But bottom line, it's their disease.....not ours....it's their ballpark, their ballgame. We can pitch the ball.....but they have to decide whether to hit a home run, bat out, bat it foul....or just drop the ball altoghere. Not much any of us can do about that!

Denial

A comment I received:

I too am in denial about the suffering we are all subject too when an angry, out-of-control diabetic person is at the center of the drama (and needs to be). I keep telling myself that he is not really like this - it is the disease that makes him this way, but after a while...what's the difference? Your thoughts and actions come to define you. I am now finding that I have to develop a shell and become and uncaring to cope. And that makes me hard on my children and myself. So here we are. If I am to apply the same idea, well them I have become just as difficult to live with as a result. Sad and incompetent is how I feel. Thank you for sharing your experience. It does help.

This is just my opinion, but I think denial can last forever. I think it is a coping mechanism. But it's not just the spouse/family of a non-compliant or out-of-control diabetic - it's everyone around them.

Think about it. Their doctor has to be in denial. They don't make them chart their sugar 8 times a day. They don't ask to see the "log". They don't tell them they have put on way too much weight since the last visit. All they seem to want to do is get the patient out of the office as fast as they can.

Their boss must be in denial. I'm sure the same ranting and raving goes on at work that goes on here. He's never been disciplined. It's just called "his mood".

The sad fact is that he is exactly like this. Whether brought on by sugar levels, or his own personality - it is who he is. Yes, the disease started it. Maybe the disease continues it. But it is who they are. "the center of the drama" - oh my, what a perfect description! LOL!!!

They do like to make everyone around them feel totally inept and incompetent, huh? Haven't quite figured that one out.

Put on a shell? Well, that's one way to put it. I prefer to say that every time he tries to put his monkey on my back, I fling it right back to him. LOL! This is his disease. This is his problem. I've said this before and I'll put it here again.....I have learned to simply tell him that he does not have permission to yell at me. He does not have permission to blame me. And when his mood gets really bad, then I run to Walmart, or the grocery or somewhere....just leave for a couple of hours. Because usually when I come home - he's past that mood.

Of course I'm copinq quite well right now because he's gone! LOL! Just read my past blogs and see how many, many times I have not coped. That's when I come here to vent.

I guess I need to write one more thing here. For the past 2 months, he has been making joking comments that he is going to quit his job and go live under a bridge. He will say that he has picked out his spot, that he's found one that has a power outlet. I want to think that he is joking, so I simply tell him he can go whenever he wants, but don't think I'll be there with you! But I wonder what is going through his mind that he has started this line of joking. He is now morbidly obese, his kidneys are at 20%.....I just wonder how long he has left and if in his mind this is his way of coping.

Yep, denial. It really is a safe place to be when things get bad.

I also know that there are 5 stages of grief and we, as spouses, need to grieve the loss of our normal life, the normalness of our spouses, etc. And I also know that we can get to step 4, fall back to 1, progress to 3, fall back to 2.....that it can take years to process the grief of loss. And that's what we are doing, so denial is a natural part of that process. We just need to work to get ourselves out of denial and on to the next step.

DW

she wrote, "I can't go on like this".....

on a comment on my last post and I will write, "yes you can!" We all stay in a diabetic relationship for some reason or other. And as long as we continue to make the choice to stay....then we have to go on like this. There isn't another option because you can't change another person - you can't change him, you can't fix him, you can't make it right....you can only change yourself.

So I have learned that until I make the decision to walk away from this, I can go on....even when I think I can't. How? We do it by finding something to occupy our time - a job, a hobby, volunteer somewhere. We do it by surrounding ourselves with a family of friends and a support system. For some of us, we blog - we write down the things that upset us, we vent, we rant, we throw a temper tantrum via the keyboard. For each of us, we simply do it one step at a time.

But I would never ever think bad of anyone who made the choice to leave. Being with a non-compliant diabetic is just about the most difficult thing on the face of the earth. My hubby is still gone, so I am getting a reprieve and this is what we do - he goes to his family, I go teach art - we give each other a break from the every day life of diabetes.

It has been 12 days since his grandmother died and she is still in the morgue. No creamation or burial yet. I am just not sure what is going on but think that probably no one can make a decision. His mother was in a car wreck today. She is 76 and probably has no need to be behind the wheel of a car. His work is laying off more people. So I am sure the stress he is enduring at the moment is the "adrenaline" that is keeping him pumped up. Which means that if he is in a constant high the whole time he is gone, he will have major crashes when he gets back home.

I will be leaving in 3 weeks for a 3 week teaching trip - so I know I can survive whatever happens when he gets home - I have an "out"!

A few good things to report: I have purged this house of anything sweet, chips, crackers, etc. All the soda is gone. It's been a very good 2 weeks here!!!

DW

Surviving 101

Send the diabetic spouse to his parents. Have him take the pets. Listen to the silence. Start to remember what it is like to be able to spend a whole entire day without living in a world of diabetes. No blood stains from shots. No flopping in bed. No noise from a CPap machine. Listen again to the silence. Renew the spirit. Revive the soul.

I have decided that I could fall in love with silence.

I am healing. I am finding new strenght. Perhaps when he comes back, I just need to go away a little more often so I can remember who I am without being the wife of a diabetic.

So much for promises.

He STILL has NOT been to see his doctor about his heart. Sigh. I need to give up. He is not going to go. He even commented the other day that all it was was a burning sensation like heartburn!

How soon he has forgotten just how scared he was, that he could barely breathe, that he could not function, that the pain was seering in his chest......

And then his grandmother died this past weekend. He is leaving tomorrow to drive 1000 miles to be with his parents. I am not going because I have business commitments here that prevent me from going.

He has no business going. Especially since he has not been to see his doctor. Every single visit to his parents results in multiple layers of drama and he certainly does not need that right now.

Nothing I can do.

My sister was here this weekend. She commented that he looks horrible and has gained so much weight. I know. And it doesn't help to have what you already know confirmed by someone who hasn't seen him in months.

Good question a reader asked recently....do the good days still outweigh the bad? Should I stay or should I leave? I just don't know.

Same old game

We have been back a full week and he has not been to see the doctor regarding the Angina attack he had. Even thought he PROMISED me that he would go. Same old game.

He is feeling better, not in pain, so he's not going to go see the doctor.

So much for a promise!

DW

Catching up

Lots of notes to post.

5/25. We were on vacation in Mexico. He had a severe angina attack while walking (in heat) along a river bottom. He could not get any air in. The next 48 hours was severe vomiting and diarrhea attacks. He promised to contact his physician when we got home. Said he probably needed bypass or stints put in.

I honestly thought he was having a heart attack. Rather frightening.

Spent several days 100% isolated in our hotel room at the resort because he did not feel like getting out of bed, getting dressed to go to dinner, or walking to an on-site restaurant. Just glad it was an all inclusive resort that included room service.

5/29. During our flight home, had a stopover in Mexico City and he could not walk. Had to stop every few feet, get his breath. Sit down and rest. Horrible pain in his back, hip and knee. He said he is at his all time highest weight.

5/31. Late lunch with friends. He could not made it from the table, back to the car and said that he might actually have to start using a wheelchair.

6/1. He emailed his doctor. Did not call, just sent an email. No message back. He has pretty much just been sitting on the sofa or laying in bed since we got home. Hip, back and knee pain still intense. He has mentioned 3 times now that he thinks he will need a bypass, so that tells me he is worse off than he is letting on. He has never mentioned heart problems before.

I asked if his back/hip pain could be from his kidneys and he said no.

Even with all that, we did have a nice 2 week vacation.

Hand infection

I've been traveling and teaching art for the past couple of weeks. Flew home today and he has a horrible infection in his right hand. Just all swollen and tender. I feel so bad for him. His doctors have told him when this happens all he can do it start in on anti-inflammatories and he said he has done that.

Outside of that, all seems well and we are planning a vacation together soon....to a beach...where we can just rest and enjoy each other's company.

DW

Angry diabetics in denial

sending me nasty posts that I just continue to reject. Yet you continue to prove to me that diabetics are exactly that....angry and in denial. It just amazes me!!!

I have to wonder if you do not understand the cycle that we spouses so clearly see? You do not take care of yourself. OK, you think you do, but you don't. Your sugar drops, you hit a low, and look out - the venom just spews forth from your mouth. There are even times when it becomes physical.

And you think this is a "little" problem? Well of course you do because you don't remember anything you say or do when you are in a low!!!

Because I refuse to take care of you does not make me anything other than a totally smart person. Your disease. Not mine. In fact, when I married you (when most of us married you) you were not in the condition you are in today. If you were, why on earth would we have gone on another date once you hit that first low with us? Nope, back then, you were actually pretty healthy. Little did we know the progression of this disease or that you would do so little to take care of yourself!

Oh, and the other thing I'd like for you to learn to do is to READ! HE is going on the vacation with me! LMBO! I'm not taking a vacation alone....HE is going, too! So you must have really been in a low when you wrote to me because you obviously can't even read!

Yep, just keep sending me your nasty little notes. I will reject them and write my rebuttals here so everyone else can say yep, must have been a non-compliant diabetic who is in denial writing something like that. I have proof. Just read back through all the comments that other spouses have written. I know I'm not alone in any of this. It's not me. It's you!!! After all, you are the one who has this disease.

Now....do something to make yourself a little bit healthier rather than sending me your nasty little notes! :o)

DW

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Dw Smith (Diabetes Wife Smith) - it wouldn't let me enter myself as just Diabetes Wife....so I'll be DW Smith over there. :o)

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DW

Dear wife of a diabetic....

In this post, I am writing as the wife of a diabetic to all of the other wives of diabetics.

Life is short. My mom had a stroke about 10 days ago. She is doing just fine....but it was a true wakeup call for me. I am spending a week with her, helping her with her therapy, making sure she can continue to live alone. And I wanted to share a few things with you.

1. She lives in a tiny apartment in a retirement center. She does not want to go live with any of her children. She wants to remain independent. She lost 100% of the use of her right hand with this stroke. She has PT & OT coming in twice a day. She sits in her chair and exercises her hand and arm almost non-stop. She repeats every exercise they give her. She does typing exercises on the computer. 10 days now and she has regained 99% of the use of her hand. She is determined to make herself healthier than she was before the stroke. Diabetics take note....you CAN repair what your body has lost! Wives take note....if the diabetic really wants to make a change, to get better, to get well, they will.

2. Mom is not doing this alone. PT & OT and her daughters, her neighbors, her friends. We are all doing everything we can to help her make changes in her eating, her diet, her exercise...in her daily life. We are here supporting her 100%. And she is allowing us to assist her.

3. Mom could have taken the route of self-pity, of depression, or sorrow. Nope, she is a true role model. And she is so patient with everyone. She listens carefully. She repeats her tasks. She doesn't hesitate to rest, but the moment she is rested, she is back at it again. She just doesn't stop.

I sit here and look at her and watch her example and am stunned that this woman who is almost 80 years old has more energy than my diabetic spouse. She is more willing to take on new exercises, new ways of eating, new ways of doing things than he will ever be. She has a will to live. Or perhaps I should say, she has a will to live the best life that she possibly can as long as she can.

The brain is an amazing thing. It can remap nerves. It can rewire internal systems. I have just witnessed it. From a right hand that would not move to a hand that is back to painting, typing, fixing meals and more. She has made an incredible recovery. Proof to me that if a diabetic wants to regain what they have lost...they can...if they are willing to make the necesssary changes!!!

FRAN!!! I am thrilled to have you back and so happy you posted a comment. I have been thinking about joining facebook and wondering if anyone would care to go there as we could all post with each other....not just me making comments on my blog. I will look into that next and post here if I can set something up.

Diabetes is so difficult for the spouse because it constantly pounds down our self-esteem. We get sucked into the negativeness of it all. Fran, I hope you will see that. You need to do what is best for you.

And to anonymous.....I have learned that we do what we can with what we have. So no regrets about staying with him. Don't do the "what-if's" about how you raised your kids. Yes, perhaps it would have been better had we left....but we absolutely can only do what we can with what we have at the moment.....and it is a true waste of our time, energy and strength to look back and wonder "what if". What we have to do is look at the present moment and determine if we are doing the best thing for us right now.

Is it best for me to stay with him? Is it best for me to leave him? This is not about him at all. It is about us. It is about me. Now, I don't advocate jumping ship right now. I firmly believe that any time you make a decision, you need to mull it over for a couple of weeks to make sure it's not a knee-jerk reaction to an event. But truly.....if I thought for a moment that I should leave him, I would. And I would not look back for a nano second!!!! I am worth that much to me. I deserve self-respect. I deserve to be treated like a woman. I deserve validity in my life.

If you have been with me during this journey, you will remember a few months back I was pondering whether I should leave my husband. But I am glad for now that I stayed. The doctor's have done amazing things with drugs and he is in a much better place. He has also come to realize that he cannot treat me like a rag, he cannot blame me for whatever, he cannot yell at me and while I still have to remind him of MY rules....he is doing ever so much better and we are in a better place in our relationship.

So, what are my rules?

These are the rules for the wife of a NONCOMPLIANT diabetic who has no desire to become complaint:

1. You cannot abuse me. Physical or verbal.

2. You cannot blame me for something I did not do. I will not listen to it. I will walk out of this house every time you start to blame me for something.

3. I will not allow you to try to convince me that I was wrong. If I was, you simply have to live with it. But you may not tell me that I was wrong....or that I am not right.

4. I have a right to my own opinons, my own beliefs, my own thoughts and you may not say anything negative about them. If you want to start that line of conversation, I will go shopping. I will be gone for a minimum of 2 hours. And when I come home, I expect that conversation to be over.

5. If I am going to share a bed with you, that bed will be quiet. There will be no snoring or bouncing, no restless leg syndrome. If you cannot work with our physicians to ensure me that I will have a solid nights sleep, then I will be in my own bed and you will not join me there.

6. I will not remind you when to take your meds. I will not assist you in taking your meds.

7. This is your disease. It is not mine.

8. If I tell you that you need to eat something, you will. If you refuse to eat, I will walk out for a couple of hours. I will only do this when I feel you are dropping into a low. If you go into a coma while I am gone (because you refused to eat) I will not be responsible for what happens after that.

9. You will not raise your voice in anger against me at any time. We can discuss anything you like in a rational, calm voice, but I will not listen to you get angry with me.

10. I am not your mother. She lives in another state. Do not expect to treat me or talk to me like you do your mother. I am your wife. If you want to stay married to me, these are my rules. I will be happy to call 911 whenever you pass out. I will not give you juice or put something under your tongue. This is your disease and you need to stay in close contact with your physicians. You need to tell them about the changes in your behavior, your eating patterns, your activity levels. You need to monitor your own blood sugar at least 8 times a day and chart what you eat. I will be here thru thick and thin....but this is not my disease and since you really don't seem to want to take care of yourself, I'm not going to do it either.

Feeding diabetes

someone commented:

I am a type 1 diabetic, and suffer from anger when my levels are low, although my anger isn't as bad as your husbands.

My diabetes is reasonably well controlled and it still happens to me a few times a year, and I'm rarely aware of it happening before its too late.

I am normally a very soft and gentle character but when my levels are low its like it just explodes from knowhere.
I hate myself after it happens and have even broken my hand punching the floor to vent it.
The best advise I can give is to make sure your husband always has breakfast asap, avoid confrontation and talk to him about his diabetes control in the evening and if he won't listen talk to his doctor/specialist.

and I want to thank you for the comments. But wow- hubby has never broken a bone in his anger - yet!

I do agree that eating seems to be the key to controlling the lows. He's been on a business trip and got up early today to fly home. Didn't eat. And his plane was delayed. So, of course, when he got here, he was cranky. I remained quiet til we got home and fed him immediately - and then he was fine.

Now - if I can figure that out, why can't he? LOL! You definitely have to "feed" the lows.

For the most part, things are moving along fairly calmly here. I believe that for right now, the docs have his meds sorted out and as long as he eats a little something several times a day, he seems to remain on a pretty even keel. And I'm quite happy with where we are - a far cry from a couple of years ago.

We have quite a bit of travel coming up, so we'll see how he does. His hip seems to have calmed down for right now. But then he was at sea level for the past week and I always think that helps him with his pain and comfort levels.

DW

Increase in pain

The pain in his hip is inceasing. He can barely walk. Today, he was sitting and said, "I have to work up the energy to face tha pain of standing up."

How sad is that. Still waiing for a return call from the doctor's office.

In the meantime, I'm sure the increased pain is having an impact on his sugar levels. He is sleeping tons. In bed almost all of the time. Fortunately, he can work from bed. :o)

DW

Hip replacement

For quite some time now, he's had severe hip pain. His doctors have told him he needs to have it replaced. He informed me today that he's calling them tomorrow to start talking about having it done.

I worry. They have said his kidney function is so low that he can't have anesthesia. Can they do a replacement with a spinal block? Will his kidneys handle that? It's just more drugs/meds that get into the system that have to be filtered somehow.

I realize the severe pain he is in. He's hobbling again. This time from the hip, not his feet.

Yet he still won't alter how he eats. Or test his sugar levels. Or do anything to help change the situation. He'd rather have a juicy fat steak (last night) and go through surgery than lose 100 pounds and relieve the pressure on his hips.

Sigh.

I asked him how long the recovery would be and he said 6 weeks. I asked if he planned to do it upstairs or downstairs and he said he would have to stay on the main level until he could do the stairs, but then he would be upstairs in the bedroom.

I assume there will be a lengthy pre-surgery process through the insurance company. So I don't think this will happen soon. I assume that I'll get my workout in going up and down the stairs 50 times a day like when he had his foot surgery.

I think I'm tired just thinking about it! LOL!!!

DW

6 am low

Just more notes about the "journey". He woke up at 6 am, got the peanut butter and crackers out of the closet and turned on the TV to Saturday morning cartoons! I sleepily asked him what he was doing and he said, "I'm having a low."

Well, I'm wondering where was the high he had to have had in order to balance the low so his A1c is normal? I have totally been missing his highs as he seems to be having more lows.

I've had a guest here for a week and he came out one day and it was about 10:30 am. He was in such a low and I knew it immediately. He was banging and slamming on the ice machine in the refrigerator. He yelled at me to see if I had called them to come fix it. I said, "you just need to replace the filter". He yells that the light is not on, it doesn't need to be replaced. Of course, my guest is here as well as another friend, so I very quietly said, "I think you've forgotten, the filter goes bad a few days before the light goes on". (We have a new refrig and you can't make ice if the filter isn't working.) So he wants to know where the filter is and I told him it was under the kitchen sink.

He proceeds to come into my studio where my friends and I are, brings the box over to me, sticks it like 3" under my nose and says, "Can't you read at all? It says you don't replace until the light comes on?" and in such a demeaning tone of voice.

So what do you do? Ignore him? That will just continue his litle tirade. I totally knew he was in a low as pissed off and irrational as he was acting. I also knew he would forget it completely when it was over. Yet I have 2 friends right there and I sensed how horribly uncomfortable they were. So I said in a very quiet voice, "well, why don't you try the filter anyway and if that doesn't work, I will call the repair guy?"

He stormed out of room and I looked at my friends and said ever so quietly, "now you know what a sugar low is like."

Of course, replacing the filter was all it took and the ice machine worked just fine. He got his ice, went upstairs, and my friends and I had a lengthly discussion about sugar highs and lows and the "real" nightmare of my life that I continue to cover up to the best of my ability.

If nothing else, I think my friends are better friends now as they know another aspect of my personal life. One I would have preferred to keep from them.

I just think it's so sad that he has chosen this route of non-compliance. These highs and lows cannot be good for him physically, yet he apparently doesn't get that. And I have to admit, for a man the age he is, he doesn't have very many close male friends and I imagine this is exactly why. No one else seems to really understand the emotional and social aspects of this disease. If he spoke to friends the way he did to me on that day, I doubt he would have them as friends. Women are a little different. My friends witnessed his verbal treatment of me, have sympathy for what I deal with, and are closer friends and will support me even more. Because I sat here and explained the situation to them and assured them that he most likely had no idea how he was treating me at that moment.

And most of my friends have witnessed how sweet and wonderful he can be when he is "normal". So they know that was not his usual behavior.

Back to today. It's now 7 am and I guess I'm awake for the rest of the day while I hear him upstairs snoring. And I wonder why I'm tired! LOL!!!

DW

Dear Deborah,

Deborah wrote:

I too am the wife of a diabetic. This morning he called me at work ranting about something that was out of my control. Thanks to your blog, I see that I am not alone. I have bookmarked you page and will visit it very often. What I wanted to tell you is I thought there was something wrong with me because I moved out of our bedroom too. I work and when we would go to bed, my husband would have to turn the radio on so loud I couldn't sleep. I hope you will keep your blog going as it has been good for me. We all need to know we are not alone. Thank you so much, Deborah

and I just want to reach out and give you a huge hug and assure you that you are not alone. There are so many of us. Most of us just suffer in silence. I know I did.

It took me 5 years to even start to figure out what the heck was going on. No one sat down and said to me, "he is acting like this because of his sugar levels." No one "educated" me. His doctors didn't bother to consult with me to see how I was doing - I had to figure this out all on my own.

So I started this blog to help others as well as a log, a journal, a story of the progress from now until the end.

Because I am ever so aware that there will be an "end" to this. Either because I leave him, he leaves me, or one of us dies.

We are having a pretty good run of things at the moment. The "new" bed has really helped. I am back sleeping in our bedroom and he seems to be happy about that. I'm happy because he's not flopping - well, he's still flopping, but it's not bouncing me off the bed. I put in ear plugs when I go to sleep and I don't hear a thing. I'm getting such good sleep at night and it really helps me deal with the stress during the day.

So my first piece of advice may well be to figure out how to get a good night's rest and if that means moving out of the bedroom - do it! Because with rest, you can build strength and energy to deal with the rest of this stuff.

Hubby's sugar levels have been pretty good. Even. Even is good for him. I can still tell he has a bit of a morning low....but it's not quite such a huge swing. While his kidney function is still at 22%, it's not moving....which is good.

In the meantime, I have an artist friend here visiting for a few days and am just having the best time of my life. Soooo theraupitic. So my second piece of advice would be to find something that you love, something that makes you happy, something that you can lose your heart and soul to....and find time for that every single day. It will help you deal with the stress of this as well. Even if it's just for 10 minutes! It really helps!

DW

"adjustable bed"

LOL! My how we have progressed as human beings. It's no longer a "hospital" bed - it's now an "adjustable" bed! A few months ago, I moved to the guest bedroom in order to sleep. The sofa just wasn't cutting it for me....and I couldn't sleep with him because of his restless leg syndrome and the fact he nearly bounced me out of bed at night.

But that didn't work as we have too much overnight company and he turned bedroom # 3 into a workout room (that never gets used) and everytime someone came to stay, I ended up in bed with him (no sleep) or on the sofa (back ache).

So I went looking for a single bed. Our bedroom is large enough that I could put a daybed in here. Browsing through craigslist, I saw an ad for an adjustable bed. Automatic. Serta mattress. Doesn't look like a hospital bed at all...but will raise and lower just like one. And only $200!!! So I bought it. Found bedding that makes it look like a daybed. It is perfect.

Problem resolved! He sleeps in the king bed and bounces all night long. I'm on the "daybed" in the corner of the room. Quiet, comfy, no bouncing! We are back in the same room and I think he is an ounce happier because of it.

When I first brought it home - he was a bit upset by it all. He said, "I hope you did not buy that for me - I am not going to sleep in it!" I said, "no, I have always thought I would like an adjustable bed for all the reading I do at night." He calmed down immediately and was content with it after that. And then I mentioned that mom might need it one of these days and I'd gladly give it to her when the time came. He was quite happy after that comment.

So, what is the stigma about a "hospital" bed that got his feathers in a ruffle? I mean, how fun to have a bed that you push a button and the head and feet will raise and lower for you? How cool to have a bed that you can adjust the positions to meet your needs? And when I told him that they retail for $1500.....well, then, and only then did he decide he was proud of my find!

Truth be told? You all KNOW I bought it with HIS future in mind!

Memory loss, sugar low, or both

An interesting problem has developed in the past few weeks. Well, it's not a "problem" - but it could be. This past weekend, hubby asked me to help him clean out his closet. Oh me....what a mess! But mission accomplished! He laid on the bed while I pulled things out and he had 3 choices: Goodwill, keep, or box. Simple process.

A few times there would be an empty box or package and he'd make a comment, "oh that goes to so and so that you borrowed." I just blew the comments off...not even paying attention. Until it came to an empty "compac" box (computer company). He said, "that is for the HP calculator of mine that you took." I simply stood there and said, "what HP calculator?" He said, "the one you use all the time." I pointed to the outside of the box and said, "this says COMPAC!!!" He said, "well, you took that one, too." To which I replied, "I have never used a compac calculator in my life. I bought the HP12C in graduate school.....FIFTEEN years before I met you!!" and he said, "No you didn't, I bought it - you took it from me!"

I was simply stunned into silence by my sheer utter disbelief in his statement. I mean, I just cannot comprehend what is happening to him. I understand memory loss. I understand sugar lows. But I don't understand how on earth he can possibly be to the point where he thinks that everything that is in this house is something that he purchased and I "took"!

And yes, a calculator is a very small item (even though when I purchased this one.....at that time....it cost $150 so it was a major purchase for someone in graduate school). But it's the concept behind the statements. First, that I would "take" something away from him that was "his". Second - that even though I have worked 33 years in my life....I never purchased anything - he bought it all.

Is delusion a part of memory loss? Is this what happens when nerve endings and brain cells start to die off? Just something else to keep my eye on as this disease continues to progress throughout his body.

Hip replacement

There are some days when you have to laugh in order to not cry. His doctors have hold him he needs to have his left hip replaced. Seriously, I feel that if he would just lose 80 pounds....his hip wouldn't hurt. And I have to wonder where this will lead - the other hip and both knees next? He doesn't move. He doesn't even try to move. He sits on the sofa and will move to the chair in his office. And that's about it.

So I am going to start blogging the progress of this part of his diabetes. But first, another question. I have noticed (and researched) that it takes 2 years for the nerve endings to die. During that time, the pain is almost unbearable. But once the nerve endings are all dead....the pain goes away. Could it be that the nerve endings in and around his hip are dying off and that is the major source of the pain? That if he can hold off a bit longer, perhaps he won't need the hip replaced?

Aside from that.....I was gone all of last week. Went to visit my mom and my sis. Actually my sis picked me up and then he was supposed to drive up to her house to pick me up. Come last Friday, his hip hurt too much for him to make the drive. So my prediction is that he will do less and less until he gets it replaced. Note - he was just fine until a doctor "told" him that he needed it replaced. Yes, he had hip pain off and on....but now it never ends. So I think much of it is subliminal - you tell him he needs surgery and he will just get worse until the surgery is performed.

And the there's the issue of anesthesia. His kidney doctor has told him that he cannot be put out because his kidney function is so low. How are they going to do hip replacement? With a local? A saddle block? OIY!!!

Then comes the other issues to consider. He will have to rent a hospital bed for the main floor as the bedrooms are all upstairs. That's not a problem. But there's no shower on the main floor. So bed baths? His comment - of course that's something "I" could do for him! I just had to laugh! Don't think so.....I didn't say that outloud...but I was sure thinking it! In fact, I was thinking hip surgery = another trip to mom's for me! LOL!

I honestly have no idea if/when he will have the surgery, but I do see his physical condition deterriorating as he now believes that he needs this surgery. I'll just post back as things develop. But for now, life is going pretty good in general.

DW

Changing my last post to say....

It's not so much that things are going too smooth - it's that I've become too complacent. It hit me yesterday that he is yelling at me about something every single day. I just ignore it. I don't let it get to me. I think I've become numb! Most days I can't even remember what it was because it's so stupid. I know one day he went ballistic because he couldn't find his laundry basket. Which was in the back of the closet loaded with snorkeling gear from our cruise last October. So he had not needed/wanted/used it in 3 months!

You sort of have to laugh. If you don't, you will cry.

There was the day he was screaming at me because I had ruined his wire clippers. I tried to tell him they were "my" wire clippers but to no avail and just walked away. Yesterday, I found his perfectly mint wire clippers in the upstairs closet in the exercise room where he had left them over a year ago when he was putting in the new wall-mount TV.

Sigh.

But I do know that these incidences still seem to be about 10:30 am - when he seems to go into a low - because he refuses to eat breakfast. So I just continue to ignore them. And totally forget them.

I also happen to realize that my headaches are returning with an increased frequency. Wonder if the 2 are related! LOL!!!

Positive Progress

Well, I have to confess that things have been going almost too smooth! It's been amazing. He went to the doctor's this week and no, he doesn't have the results of the lab work yet, but here is the progress thus far:

1. Feet have improved. No open sores. And he's wearing socks and shoes almost full time now.
2. They are increasing the meds that work to help control the shaking. OK, this is really not an improvement as his hands still tremble something terrible. But when we eat out, he simply orders finger food. Problem solved.
3. His bladder problem is coming under control and he is out of depends (really great news!)
4. They are going to prescribe something to help relieve his optical migrains.
5. Still having bursts of anger when he has a low....but I simply inform him that he does not have my permisson to yell at me...and that seems to calm him down for the moment.

The biggest difference that I see is his fear of being alone. So he is making changes in how he treats me. I used to promise that I would never leave him...but now when he asks I simply tell him that it all depends on how he treats me. It seems to be working for the moment.

I realize all this can change in a heartbeat...but I am really appreciating the reprieve in all of his diabetic related complications.

The other thing that has really helped is that his brother managed to get his parents to stop calling him with their every crisis....and he is not doing a panic reaction to their phone calls. I can't begin to explain how much that has helped.

DW