Saturday, January 28, 2012

And a letter from Paula to John

I am having a hard time keeping up with emails this week!!!  But I think each one is so important that they deserve their own blog.  Here's what Paula wrote:

Dear DW,
I'm at work and just kind of waiting for an assignment and came across your blog.  I don't know how these blogs work, but I'd love to comment briefly on the letter from John.
My husband has been diabetic for 50 years (he's 73 now) and we've been married for 41 years.  We've successfully raised two kids, meaning they are happy, healthy, well educated and employed.  Kind of a broad definition of "successful" but, I think if you asked them, they would say they are very close to their Dad. 
It's such a roller coaster being married to a diabetic.  The short answer is make sure you have a good family therapist on board.  That's what kept us going through all the ups and downs.  At one point, my husband was behaving really aggressively towards me and I insisted on a mental health exam and it turned out he was suffering from three different types of depression.
My best friend at this stage of the game is the glucagon kit.  I keep two on hand at all times, carry one in my purse if we are out and about.  My husband has lost two toes on his right foot and one toe on his left foot.  He's suffered two heart attacks, has five stents, four in the heart area and one in his left artery.  He had an arterial replacement on his right leg in 2005. 
I can only say that, when we married in 1971, being a diabetic was something "special."  Now it's not.  It's part of our culture and health care.  I treasure this "quiet" time starting in 2012 when we aren't battling blockages, necrotic toes, just normal aging stuff.  This is the bonus time when you can just kind of be two folks doing day to day stuff.  But, don't be shy about calling 911 when you need help and keep your glucagon kit on hand. 
Blessings to you and your family,

Now, while this is to John, I'm going to respond with a huge WOW!!!  I do not think I have ever met anyone who has had diabetes for 50 years.  That gives me some degree of hope.  He must be relatively compliant?  I don't see how he could have survived this long being completely non-compliant like my husband and John's wife is.

I agree with the part about a good family therapist.  It just can take quite some time to find a "good" one.  I have given up on trying to find a good one that understands diabetes.  I think that's too much to expect.

And while your best friend is the glucagon kit, I'm still refusing to carry one.  He can.  But that's where I do disagree with so many spouses.  I know it's what the professionals tell you to do. But this is not my disease, it's his.  It is not my job to take care of him.....when he does not take care of himself.  Now be sure to read that last sentence a hundred times!  LOL!!!  If my husband took care of himself, if he counted his carbs, laid off the sugar, exercised....I'd be the first person in line to do whatever I can to help him out.  But he doesn't.  So why should I carry anything in my purse (if I carried a purse which I don't) to assist him?  My cell is always in my pocket and I can call 911 from anywhere (I'm not the least bit shy about that!)  :o)

Your husband is very lucky to have you.  Everyone needs a wife like you.  But I'm a person who needs a hubby who is complaint, who follows the rules, who takes care of himself...and I didn't happen to get that lucky straw!  And perhaps therein is the difference.....if your hubby is non-compliant and has been for the last 50 years, I'd like to know his secret to staying alive!!!

I'm certain John will read this and if he replies, I'll post it in the comments below.  You have no idea how excited I am to know that someone has had diabetes for 50 years!  Your husband must be 1 in a million!!!


Another letter from John that really made me think......

He said,

"My kids are used to her testing and needles and know if mom is low they need to get surgar..."

I had never even considered how it must be to be a child and have a mom who you have to care for.  My mom always cared for me, not the other way around!  And how frightening it must be when mom passes out.  Geez!  I have such a needle phobia (and my own mom was a nurse) I simply can't imagine having needles all over the house.  I know it's not just John's's hundreds if not thousands of other kids who live with a diabetic parent that have to go through this.  Childhood should be a time to play and be a kid....not a time to care for a sick parent, that's for sure!

i keep thinking back to the move "Steel Magnolias" where the little 2 year old was sitting there crying his heart out when dad came home and found mom passed out.  As a parent, that has to be the last thing on earth that you want to happen.  So as a diabetic parent, how on earth could you be non-compliant?

Yet I understand that there are those spouses and parents who are non-compliant for their own reasons.  It's just so hard for me to understand why.

John said,

"But even for me after 10+ years of this, you just start to get worn out, That is when I searched for a support group for diabetic spouses and just found information on how to support the diabetic.... Your blog was the only source that I could find were someone anyone can relate in someway anyway..."

I think all of us have been so disappointed in support groups.  They really do just tell us how to support the diabetic.  And I have to agree.....I'm beyond exhausted from this disease....and I'm extremely healthy.  The last 3 years have been beyond stressful here with hubby's heart attack in 2009, triple bypass in 2010 and double spinal fusion surgeries in 2011 with 8 dialysis treatments to get his kidneys functioning again.  No one should have to go through that much care-giving on top of the normal everyday diabetes caregiving.  And I wake up some days thinking that I can't move....I'm just that tired.  

Yet, if I went to a counselor, they would just tell me that my role in life has changed and I'm now a "caregiver".  So yes, John, I truly understand - there isn't much (if any) support out there for those of us who's role has changed......against our wills....and in an untimely manner.  (I'm not ready to be this "old" when I'm still this "young".)

So, while John's life is much different than mine - I don't have kids, I don't work....and I do have time to write about this disease, he probably doesn't.  He has TWO full time jobs (work and home) and I'm surprised that he's had time to google and find my blog.    But I can relate to that as well.  When my hubby was so sick....I really had no time to blog. It was just short little bursts, not feelings, fears or thoughts.  When I go into times of 100% caregiving, there is just no time for anything else and I am truly grateful that I am retired because I know there are days when I could not go to work.

John, again, I just wish you the best.  I hope you will keep writing and sharing and that maybe others who read this blog can write in their suggestions.  I know it really helps to know you are not alone and that there are other spouses going through the very same emotions that you experience.



A letter from Geri

Geri wrote this to me as a comment on "A letter from John" - but I decided it needs it's own blog:

Dear DW,

I'm glad I found your blog. I used to be a non-compliant diabetic. I have had type 1 Diabetes for 10 years and no matter how high my sugar would go, I would deny that I was doing damage to myself and shortening my life span.I ate whatever I wanted, whenever I wanted, did not test my sugar levels, did not go to the doctor regularly. I am sure my sugar was in the 300's on a daily basis.

I take 4 shots of insulin a day and I am overweight. A year and a half ago, my husband of 13 years got angry with me and refused to support my lifestyle any more. He was my enabler, just like a drug addict has an enabler. But he had had it. He did not want to see me leading myself to an early grave. 

Thanks to him, and his 'hard' tactics I went to a good endocrinologist. My A1C was a 9.5 when I started seeing her. My last visit a month ago it was a 6.0. I test my sugar 3 times a day, I watch what I eat, but allow myself a day for carbs so that I don't go crazy. I have lost 45 pounds and I just feel so much better than the fatigued, lethargic mess that I was. 

I found that the healthier diet and no junk food, has brought my own stomach issues , high blood pressure, cholesterol problems, under control. 

Most of us diabetics are in some state of constant denial about our disease. I went to classes on how diabetics affects us, inside and out and it really opened my eyes. I wish you luck in your own struggle with living with a non-compliant diabetic. I hope he gets the help he needs to get his own diabetes under control. Trust me, he is the only one who can take control...when he wants it. 


Dear Geri,

You are so brave and so wide to be doing what you are doing.  I know from my own hubby that it is not easy to lose weight, eat healthy and do the things you need to do to be huge kudos coming your way from all of us!!!  Congratulations on getting your A1c down so far!  That is amazing!!!

It is nice to hear from a diabetic that you think most diabetics are in some state of constant denial about the disease.  I have been saying that for years now.  I don't see how my hubby can eat and live the way he does without being in a near constant state of complete denial.....let alone "some" state.  I'm the one who has had to learn that he has to take control.....I can't.  

You didn't mention - is your hubby still with you?  I do hope so.  And I wish you continued success with your "awakening"!!!


Wednesday, January 25, 2012

A letter from John

Dear DW,
I have read thru most of your blog here and ALOT of what is posted is so true. My wife is a type 1 who has had diabetes for the last 10 years. She does try to control her numbers because she is forced to but the side effects and the laziness/not exercising is just as bad as your husbands.

I feel your frustration of having no place to vent and always having to be supportive. It does not end ever, you never know when a (for me) low number is going to show up! I can relate to so much, the yelling and fights over the dumbest things and then once you figure out that they need to get out of a low they act as if nothing happened, just gets me so mad!

My wife never sees my anger or hatred. We have 2 young kids and I have to explain that mom is not mad at them but it is just part of diabetes. I try to absorb as much of this hatred and anger to me. She also tries to pass tests, for her A1C if she wakes up and her numbers and not in the normal range she will go and get the lab work done on a day when her numbers are good. It’s Like a denial, throw in the depression and I never know what kind of day that I am waking up to.
 I am also always phoning the house just to make sure she is alive. It's like I have 3 kids and the worrying never fully leaves you. And the sleeping on the couch! I am a really light sleeper and have lost track of the number of times that I would wake up and she would be in a low induced coma, the glucagon needle has saved us so much on ambulance costs! She would be low and with this sugar needle in 15 mins she is up and working normally, give her some food to stabilize her and she is fine. And I love how she is mad at me for waking her up in the middle of the night and can’t recall a damn thing.

Sorry if I am going on and on and my thoughts are jumping all over the place but it has taken me a while to go thru your blog and I did not want to add comments all over the place. I am in my 30's and there are days I just want a normal life. Where did my 150lb working wife go? She is so over weight and the things she eats, just boxes of chocolate and candies, she always tells me that she is in control of her numbers but she is not. I hate to argue and fight! it is not in my personality! The times I have tried to reason with her have just ended up in disaster.

The hate tread that is directed to me! I work and do all everything, cleaning, cooking,  you can tell what rooms I have been to by if they are clean or not! and she just found out that she is getting kidney problems. I read where you are in your life and it is where I am going. I will keep working my butt off and taking care of my kids and wife but she is slowly starting to die.

There is no way she will hit 55 at this rate. I would never tell her any of this, I always have to be positive to her even with the screaming that I get. Again sorry if this is going on and on but it is the truth. It is amazing that we were able to have kids who are pretty healthy but there is NO support for the spouse's of diabetics. Every day she is getting bigger and with the depression you get laziness and sleeping in. Say the wrong thing in the morning and your day is shot. I find it very frustrating that she no longer gives signs of going low! No more sweating or her telling me. It’s just down to her yelling and or just little things only a spouse can pick up.
 I wish I had family that could help me so I could get 1 day off from this, But our family have no idea on how to handle the simple things , like use a meter! They call me for instructions. I love the kids that we have but on a personal basis. There is a point where I want to put myself first for once!

 My reward will be kids grown up and moved out, dead wife and I will enter my golden years without a spouse. I look forward to the break from the diabetes but the cost will be me on vacation by myself and  I will not want a companion (my love).
There are days I am so tired, tired of the yelling, fighting, depression, worrying, responsibility , work, no sleeping, It does not end. My personal drive of being forced to get stuff done because there is no one else some days are the only thing that keeps me going.

The brief moments of a normal life are so far and between, just enough to reminds you and tease you. Only a spouse of a longtime non-compliant diabetic will ever understand the rant that I just posted. Keep up with the blog, it is my future!
Best of luck, I fully understand and feel for you!!!!! - TYPE_1_DH

I wrote back and asked John if I could post his email here and he said I could.  Of course, I wrote back much more than that.  But I wanted to share his email here because I just think there are more and more of us spouses with no way to connect, no resources, no one listening to us, and John is just another example.

My heart goes out to him because he has young kids. And while his wife probably can't help here highs and lows if she's non-compliant....the end result is that the kids get the brunt of it.  We all know how our spouses get towards us - imagine a small child seeing mom in a high or low.  Just breaks my heart!

And John is just so young.  He is doing exactly what I do. He is venting here....and then being a loving, devoted, helpful, caring spouse in real life.  I think that's what all of us do.  But we need a place to vent, that's for sure!

When John replied back (I won't post all of what he wrote) he hit me in my heart when he said,

" I just want to yell at her " Is this not a team effort? do your share of the work around here and free up some of my time!" But if I even hint to that, she will get very depressed, bla bla bla and I can see her or some family memeber will pull out the diabetic card on me!" I would be such a evil person for being unsupportive. "

Isn't that the truth?  Diabetics pull out the "diabetic card" and make us, the spouses, feel like we are evil, unsupportive, uncaring.

To John, you and your kids are in all of our prayers.  Write back and let us know how you are.


Tuesday, January 24, 2012

Physical was today.....

and the GP said he needs to talk to the Endo and the Nephro.  But he did tell him that the problems he's having with his digestive system are related to his diabetes.  Told him that he needs to get his sugar levels down and lose weight.

Anyone want to take bets on this happening?  Sad, just so sad that he won't do what he needs to do to make his own life more comfortable.

Monday, January 23, 2012

New labs

A1c is 10.5.  It's continuing to climb upwards.
Triglycerides are climbing - up to 1451.

He has his annual physical tomorrow.  I'm not going.  I sure hope he talks to his doc about the gas he's been having.

My sis is here and we are having fun.  We are converting the exercise room into a studio/bedroom.  I am already sleeping so much better and I think he is too.  I think he wants me in the same room with him, but he is really understanding that at this point, we need separate rooms.  We have sort of converted the MBR into a man-cave and he likes it.  We are painting browns, blacks, creams and arranged the furniture so he has a big overstuffed recliner he can rest in as well as his bed.

I'm doing so much better now that I'm sleeping all night long.  I usually spend an hour or so watching TV with him before I head off to bed - that seems to keep him happy as well.

It also seems that when my sister is here, he is on his best behavior.  So life is good at the moment!