Tuesday, March 25, 2008

from my heart

I went upstairs tonight to go to bed, and he had on a pair of depends. I wish I could write what is in my heart...but I'm not sure I can find the words to express myself. At first I thought it was due to bladder incontinence. But then I realized...it's bowel incontinence.

I've done quite a bit of research on this, trying to prepare myself mentally. One of the websites that has more information than most is the Joslin Diabetes Center

And his neuropathy is getting worse. So it does not surprise me. Yet it does. I guess I just wasn't ready to see my husband in depends at this point of our lives.

I can see the outward signs of this disease in his charcot's food, his gout, and his impaired vision. So I don't know why I continue to deny that the same types of things have to be going on inside his body.

Of the types of neuropathy listed on the website above, he has been diagnosed so far with:

sensory neuropathy
distal neuropathy
bladder neuropathy
postural hypotension
charcot joint

The nerve endings are dying. "It can take up to two years for the pain of neuropathy - which is caused by ongoing damage to the nerve - to be replaced by the numbness that occurs when the nerve cells are more severely damaged. " He has already lost feeling and sensation in most of his fingers and in his feet.

So as I look at him tonight, I do understand (yet fear) that the nerve endings inside of his body are dying. And perhaps that explains why he is in so much pain all of the time.

But what happens as more and more of his nerve endings die off? How long before dialysis. And what "real" value would a kidney transplant be? Just prolong his agony? A kidney will only process the waste in his system. It won't alter the fact that his pancreas no longer produces insulin. It could not reverse the loss that he has already suffered.

I know this sounds horribly selfish, but tonight, I am having a difficult time comprehending that he is now in depends. But at the same time, I am so grateful that he took the initiative to wear them on his own.

I just have to wonder, what next?


Note: He changed his mind on eating healthy. 5 days ago I posted that he had agreed to diet (translate - eat healthier) and then the next day he changed his mind. He probably had a pound of chocolate yesterday, Easter Sunday. And no, I did not buy any of it.


Anonymous said...

Oh dear :( My heart goes out to you. Today I am going with my husband for his doctors results, he has chosen to neglect his type 2for years. I'm only in my 30's, he in his 40's. His kidneys are failing, he is overweight and generally miserable to be around. This is such a tough disease for family members. I read your blog often but fear I may not be able to stay with my husband as you are.

Shannon said...

I don't think anything you can think or do can be considered selfish at this point.

You have endured more than anyone would allow themselves to endure.

I know you stay because you love him. Although it's been a while since I've read your posts and I don't know where he is as far as caring for himself, but it seems from this post he isn't.

I'm frustrated for your sake that he let himself go. He is one lucky man to have you stick by his side.

Diabeteswife said...

I tell myself I'm only here one day at a time right now. It's a sanity thing. But I do know I'm not going to leave him at this point. I just don't "tell" myself that! LOL!

Yes, I truly love him. He still has his moments when he is just pure fun to be around and through all of this, he can still make me laugh, at times. But if I were in my 30s I would have a much different opinion of all of this.

I'm taking a couple days off and going to drive 3 hours to visit mom. She is moving to a senior center and needs help packing. It will do me good to go talk to her. And I need the "alone" time in the car to just think.

Thank you shannon. Your words are comforting. Do men ever know how "lucky" they are? LOL! Sorry....but I have to chuckle at times!


Lilly said...

Okay, I think I just "lost" my response, so will try this again! First of all, thank you for the Joslin Diabetes Center link; I will check that out next. At a quick glance, I think my husband has all the problems you listed except the charcot foot.

I am so sorry for what you are going through! Diabetes is such a horrible disease. For me, each new negative change feels like a death, and I mourn what we've lost. I am watching him die a piece at a time.
I fear that Depends are not far
away in my husband's future, as he has had many episodes of prolonged diarrhea, and there have been several "accidents" in bed lately. At the moment, the bed doesn't even have a bottom sheet on it, as he has chosen to sleep on 2 often-laundered thick blankets instead.

How nice for both of you that your husband decided on his own to wear the Depends, although I can tell from your post that the reality of actually seeing him with them on is heart breaking. Nope, we sure didn't picture ourselves here at this age. I try not to think of these feelings as selfish, because the reality of this situation is if we don't watch out for our needs, then who will? We need to nurture ourselves emotionally as well as physically. If we don't, we won't be any good to ourselves or our husbands.

It's good (for you and your husband) that you can still get away on your own. I am planning a camping trip with some of my "girl friends" for this summer. It can't come soon enough! I am very much looking forward to this, as we will be tenting, kayaking, and hiking, which are things that are difficult to impossible for my hubby to do. Friends can be such an awesome resource. I have one friend that I can talk to about many things, but then there are other things that I can only mention here. Again, thanks for this blog! And hang in there, stay strong, and do whatever you need to maintain your sanity!

Anonymous said...

I know what you are going thru. I am a diabetic and so is my husband. Last July I had a bypass and so far lost about 85 lbs, which is great for me. I'm saving my kidneys, getting off of a lot of meds, and feeling good all around.

Before having this surgery, my husband had planned have it done, but before he had the approval he engered his back. So that put an end to his by pass. 2 yrs later still not done and he's still eating like no tomarrow. I have tried to teach him by cooking good foods, but he only eats what he wants.

Days go by and he gets upset with himself. He then said he's going to lose his weight. But it never ends he goes on eating his fat food.

I feel so frustrated and I know where you are coming from.

Now I'm just trying to take care of my self. I feel that if he realy wants my help he will make the effort himself. I really do love him, but you can't change things for others, until they want it. Also you can only lead a horse to water but you can't make them drink.

The best thing you can do is search your heart and do what is best for YOU. What what others think and say, just tell them to walk a mile in your shoes, before they give their advice.