Tuesday, January 31, 2012

A letter from Tigo

Dear DW

Hello! Thank God I found your blog, you have no idea how I wish I could talk to someone who understands, not only understands but knows exactly how I feel. I have met this amazing handsome guy, he is 34 and I am 28. He is diabetic, diagnosed at the age of 19, applies 4 shots a day.  We have been going out for two months but we already feel very connected. At our age we talk about a future together. At first I was really excited at finding someone so special, but when my dad met him, he told me the consequences of being with a diabetic and how this could be inherited to my kids. It has kept me worried, and crying all the time, I wish I could ignore diabetes, but I can't, firstly, I am worried my kids might get it, and secondly, all of the things posted on your blog are shocking, I am reaaaally into him, but my doubts keep coming and coming....I just wanted to tell you how I feel, my relationship is bitter sweet, and I can't imagine what my married life would be...any words of wisdom or hope are helpful...I will pray for you and your significant others..thanks for the opportunity.

Dear Tigo,

I think you know the answer to your question, but since you asked, here's what I think.

You are both young.  But if he is taking 4 shots a day, his diabetes must be progressing at a pretty healthy rate.  Does he eat healthy?  Does he count carbs?  Does he keep to a regular schedule of eating and taking his shots?  Does he test before and after meals?  In other words, is he compliant?

When I was your age, I did not listen to my dad.  ha ha!  But I've since learned just how smart he was.  Your dad is correct in that there is a possibility your children could inherit diabetes.  My husband's father, grandfather and great grandfather all have/had diabetes.  But my husband's brother does not have it.  There is no way to tell who will and will not inherit it.  

No, you can't ignore diabetes.  You probably need to go with your gut instinct which I think is telling you to run.  You might want to get counseling and get as much education as you can on diabetes before you run or stay.  Education is always a good thing.  It has really helped me.  Counseling has been good.  You won't find a counselor who is a pro on diabetes (at least I haven't found one yet), but some of their suggestions are good and do work.  Some are rubbish, of course!  :o)  You have to decide what does and doesn't work for you, but that is the same with any issue you seek counseling on.

What you do need to be acutely aware of is the fact that your children could end up with diabetes.  And that you could have to carry insulin, needles, glucose tabs and more with you everywhere you go.  If your husband first acquired diabetes at age 19, I don't know if it is type 1 or 2.  If type 1, your children could get it at a much earlier age.  

The other issue is his progression.  If he is now at 4 shots per day, how long before he will go to the concentrated type insulin or to a pump?  And how long before neuropathy sets in.

Tough choices my dear.  Love IS blind, but I hope you will at least seek education and learn as much as you can before you move ahead either direction.  Most hospitals and health insurance plans offer free classes or you can google and find them locally.

Write back and keep us posted as to how you are doing.  Hugs,


a reply from batgirlnj

What I find so touching about your post and John's post is that you mention being a normal diabetes caregiver for your partners. Even when I was non-compliant my husband never allowed himself to be my 'caregiver'. As long as I am physically functioning and there are no other issues like you have had to deal with, then there is no reason for anyone other than myself to care..for myself. 

Other than complications, diabetes should not affect your lifestyle in many other ways. There is nothing that I depend on him to do for me. I should say that I am 44 years old, so that might make a difference, however I cannot imagine my husband needing to change even an iota of his lifestyle to take care of ANY of my diabetic needs. 

If I did not tell you that I was diabetic you would have no idea. Our relationship is one of married 'partners' and definitely not one of my dependence on him. He did go to the diabetes classes given at our local hospital so that he would understand the disease better, and what is going on in my body, my feelings, my actions, and what he can do in case once in a blue moon, I was incapacitated and he would need to administer a needle or something else. 

John mentioned that he has only found support groups out there and that's all that there should really be. In my opinion there shouldn't be groups for partners as caregivers, because most diabetics shouldn't ask their partners to be their 'caregivers'. But, I guess this all ties into the denial by the patient.

Dear batgirlnj

Are you saying that you don't depend on your husband to get you orange juice or a glucose tab when you go low? How do you manage that?  Or have you never slipped into a coma?

I think that's the problem.  When you have diabetes as long as my hubby has had it and have been non-compliant the whole time, there are bound to be other issues.  I'm not a caregiver for his normal diabetes. He handles that just fine.  But when he had a heart attack in 2009....for the next year, I ran up and down stairs, carried things, etc. He had his bypasses in 2010.....and because of the stenosis in his back and that surgery in 2011....I basically did lifting, driving, schlepping, laundry, cooking....everything for him for the last 3 years.  He still cannot lift more than 35 pounds and at my age, I can barely lift that.  

Very few people know that hubby had bypass surgery.  Just close friends and family.  But more know about his back surgery.  Primarily because of the way he walks.

So, while these other issues are not diabetes....they are brought on by neuropathy.  When nerve endings die, when you don't control what you eat and your cholesterol is sky high....all of hubby's problems are secondary to his diabetes.  And yes, he might have them even if he didn't have diabetes....but the chances that he has them at his age are higher because he does not control his diabetes.  

And now with neuropathy of the intestines.....I'm running around the house making sure all the plug in fresheners are full, that each room has a can of spray.....LOL!!!

He did not have any of these problems at age 44.  And if you develop any of them, I'm sure your hubby will have to increase his workload.  When your doc says that you cannot lift anything over 5 pounds, or that you cannot walk more than 20 feet, or that you cannot do stairs more than 1 time a day.....someone else is going to have to take care of those types of things that you are not allowed to do.  And that will probably fall on your husband.

I don't think diabetics ask their partner to take care of them.  I think it just happens.  There are support groups for caregivers.  Just not specific to diabetes.   But plenty of support groups for caregivers to people with cancer, altzheimers, elderly, etc.  And you may well be 1 in a million because I have received so many emails over the years from diabetics who tell me that it is my "job" to care for my husband, even to give him his insulin shots if he needs that done.  I think the spectrum of thought on this goes from one end of the earth to the other!

I think there should be support groups for diabetic caregivers.  OK, caregivers to non-compliant diabetics.  I could use fresh ideas on how to get him to call his doctor when he is vomiting for 3 days at a time and I know that his kidney meds need to be adjusted....but he won't agree.

I need new ideas on what to do with the horrid smells coming from the neuropathy in his stomach.

I need new thoughts on how to take a break to revive myself when my back is on fire from carrying all the heavy groceries into the house because he can't life.

I need to hear from other spouses and know that I am not alone.  And I think that is what John is looking for.

I do feel that my husband and I are a team.  I step in and do things when needed.  I try to let him do as much as he can.  But he is under so many different physicians and has so many different "orders" and is so limited as to what he can do physically - that I have to do things for him.  And because he is non-compliant, that increases the occasions when he goes low....and when he is low and non-functioning, I "have" to get him orange juice, glucose tabs, something to get him back into this world.  

One final thought.  Hubby has parkinsons brought on by neuropathy from his diabetes.  He shakes his hands so ad that a knife and fork will jump out of his hands.  He has taken to ordering sandwiches when we eat out so that he doesn't need utensils.  Every now and then, he just want's a good steak.  And I will happily cut it up for him.  Some people see that as love.  Others see it as an added workload.  To me it's part of being a married couple.  But in reality.....if you look at it literally.....he is depending on me to cut up his meat so he can eat. And he would not have this problem at this age if he controlled his glucose.

Again, your husband is very lucky that you can handle all this on your own.  Mine can't.