Saturday, June 28, 2008

Writing about my experiences

MS.b wrote:

I have some friends who are widows of diabetics but they refuse to talk about their experiences. They will just shrug my questions off and say, oh, that seems like a long time ago. It is like they do not want to remember their beloved dh's health decline. Always remember that there are other wives' out in the world how look to your blog for information and support. There is not a lot of information out there about dealing with these issues.

Here's my thoughts: It is extremly difficult to live with a non-compliant diabetic. It is personally so painful for me. Do I let him have a candy bar when I know it could put him into a coma? How much do I argue with him about diet? Fight to make him eat right? Do I just give up, give in and let him do whatever he wants?

And then when he dies, do I live with the guilt? Do I blame myself? Do I wish I had tried harder, yelled more, been more demanding that he take better care of himself?

I can only imagine their personal pain. I can understand that they want to forget about it, not remember the pain and grief, and get on with life - move as far away from the pain of this as they possibly can.

I know, because I swear, I will never have anything to do with diabetes the rest of my life, once this is over.

I have so many days where I want to hit the delete key and just delete this entire blog. When I read back over what I have written, it only serves to remind me of my personal pain in this journey.

But then I remember the very reason why I started this blog. There is so very little written from the view of a spouse of a non-compliant diabetes. There is no help. No support. And prior to this blog, I just felt completely alone in this. I felt like no one understood at all. And now, I do know differently.

It is extremely hard and painful to write what I write. There are so many hateful comments, people who say I don't love him, people who claim it is all about me, people who tell me to leave him. But there are also those who write a simple "I understand" and I know they do and I know I'm not alone in this.

Very few people write about their feelings when they lose their child to death in a car accident. Fewer write about their pain when a child is murdered. I imagine this is similar. It is hard to find the words to express the pain, the loss, the grief. I write about him killing himself one cell at a time. I write so that his children might one day read and know that he did this to himself. I write so that when he dies, I will reread this and hopefully understand and remember that there was not a single thing I could have done to help him, that these are his choices and that I cannot change him. I write so that I will not blame myself, that I will remember that I cannot blame him, that his disease has progressed to the point where there is no one to blame, it is just what it is and we live one day at a time.

I write so that others who are seeking answers can know that there isn't much out there on this topic written from the perspective of someone actually living this on a day-to-day basis.

And I write most hopefully so other diabetics will read this and take care of themselves so that their spouses do not endure this most horrible pain of watching the person they so desperately love, die, one cell at a time.

Tonight, I am on the second night of a 2 day break away from home. Taking care of the caregiver, giving myself a mini respite at my sisters. One of my most important lessons. Take care of me so that when I get home, I can smile at whatever faces me.



Ms. B said...

Hi DW,
I understand all that you are going through all too well. My dh is a non compliant too. Sometimes when we are together I get this overwhelming sense of sadness. It's not like depression but a feeling of grief in my heart. My heart feels heavy sometimes. It is difficult to explain. Thank you so much for posting your inner thoughts and feelings.

Fran said...

My experience living with a non compliant diabetic has been shear hell. I finally got tired of waiting 2 weeks for the "fantasy moving truck" to show up and got my family once again to help me move out of state. When I got there, I showed up unannounced, he was very surprised to see me and made it clear that I had messed up his plans for the day. He neither offerd to help move anything and did not offered my kids gas money or even say thank you. He decided to return with my sonin-law and spent a week at the house were are moving out of. He cut the grass??? filled up the F150 truck and called me on Friday to ask where I was because he wanted me to pick up his daughter and drive her 249 miles to where he was so that she could drive the F150 back to NC. When I told him I was back in V he hung up. Today I will be going back to the house to get my other vehicle and see what hhe has done at the old house. While he was at the old house he did not take his insulin or his meds and called a friend to take him out to dinner and had a insulin reaction. She freaked out. I will be going back to NC today to claim my spot in the house but it will be painful. I don't want to be in NC now that he has turned against me, but I signed a lease along with him. Any ideas on how to break a lease? I have however made up my mind to see an attorney to see what my rights are since he now has surrounded himself around his kids. Still no information from him concerning his dialysis or his decision on our staying together. Do they push you away when they are losing the battle? I am staying at my daughters for a couple of days to try an regroup. It's not working, I can't sleep nor eat. My mind and my stomach are constantly in turmoil. What do I do? What can I do? This is the most painful time in my life. I do pray, my patience needs work, good thing God knows that. Well I am off for the 249 mile drive to the apartment where he has already been for 2 days. I pray I gget it together before I arrive. Bless you. Fran

Diabeteswife said...

Fran, all I can suggest is that you follow through on seeing an attorney to see what your rights are and what you can do. I'm sure they can help you with the lease and so much more.

That's an awful lot of driving. Please stay safe. And take care of you.

Mary, it really does help to know there are others out there, doesn't it? I think I'll write about that tonight. Thanks!


Anonymous said...

First off, your husband seems very stubborn and there is absolutely no responsibility on your part for what happens to him.

Second, I think part of what's going on is that your husband is - by definition - a man. Men on a whole are very poor at communicating their feelings. Also, on the whole, they are very bad at being sick. That is, give them a concrete enemy and a concrete weapon with which to fight that enemy and they can handle it. Give them something abstract and ever-present like diabetes where you are given a complex and life-restricting regimen and basically told "run on this treadmill for the rest of your life and in ten years you will only have lost x amount of ground instead of x+10" and they generally rebel. And they won't talk about it.

I can say this since I am a woman type-two diabetic. I do everything I am supposed to do. I weighed 120 lbs. at diagnosis, ate well, and worked out, so type-two is not necessarily the patient's fault. I carefully diet and exercise, yet I constantly lose ground to this or that complication and am only told by doctors that I would lose more ground if I didn't follow my regimen. I feel bad for my husband who didn't sign up for this. I feel bad for myself. And I tend to lose myself in movies like your husband does in order to escape from a life which has become a nightmare devoid of any happiness or real hope for the future. Unless you want to think about a future that includes blindness, amputation, ESRD, etc. You know the drill.

I am telling you all of this because maybe this is how your husband feels but, being a typical man, he just doesn't talk about such things.

Finally, in some regards, your husband's ranting about "stupid doctors" may be somewhat on target. I can actually believe some of the dumb things he says he's been told. From my own experience, my PCP talked with great authority about this or that aspect of diabetes until I began to rattle back with informed questions about the latest research. When cornered, he finally stammered "you need to talk to an endocrinologist. I really don't know that much about this disease." Since your husband is probably glad to hear that his deteriorating feet are caused by "Scottish heritage" he probably doesn't push the MD's for details and walks merrily away loaded with bad and pedestrian advice.

That's why he doesn't want you to go to the doctor with him, and I'm sure the doctors are grateful too. They tend to like compliant unquestioning patients.

Stay well and sane diabetic wife. I feel for you.

Diabeteswife said...

Dear Anonymous. Thank you so much for writing. Sometimes I stuggle to find the words I want to say and you have said it all so well! I'm sure my husband's doctors are stupid, but he allows them to be. As long as they don't "make" him test 8 times a day, or eat what he should, or do anything he doesn't want to do, he is happy with them. That's the main reason why he had no clue his kidney function had dropped to 50% until his company switched health insurance providers and the new docs ran tests on him.

And it's why it dropped to 35% almost overnight - he was still on the same treatment path the previous set of docs had him on.

My current concern is that the new provider has not had him in to see and endocrinologist and he just will not push the issue. I'm sure because he's afraid of what that doc would tell him to do!

And yes, what doctor wants and educated wife in the office asking questions? I truly know that one! I raised 2 handicapped kids! Sigh.

We just continue to live one day at a time and ask for God's grace. :o)


Anonymous said...

I am so glad I found this blog! My DH isn't diabetic, but is having numerous symptoms of kidney disease, including a very low GFRt. He is "pre-diagnosis" because he does not tell the doctor all of his symptoms. Just today, he went to the Dr for a rash, and a shoulder problem, but failed to mention the bright red bloody urine he had last week. So, he got some cream and a prescription for ibuprofen, came home, had a cigarette, a rum and coke, and pretended all was well.

Thank you for your courage to post here.