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.


Wednesday, June 25, 2008

How do you tell

if he's getting worse or not? It's like he bounces from one problem to another. This morning, I think he was having a high. Extremely sensitive. And to top it off his desktop monitor quit working and of course, he blamed it on me. Started yelling and I made up an excuse to run to Walmart to get out of the house. Came back an hour later, monitor working and he was just all happy to see me and started talking about renewing our wedding vows in 3 1/2 years at our 10 year anniversary. (While my brain is thinking - we'll be lucky if I'm here in 3 1/2 months! LOLOL!)

About 1:30, I saw him eating some smarties and asked if he was having a low and he said he was starting to crash. So there's today's high and low that average out to a normal A1c. Sigh.

He decided he wants all new office furniture - and just a year ago he threw a fit when I suggested he get new furniture. (More of the roller coaster ride).

His back is hurting him so much he can barely move. Lower back. He said he called the doctor and they scheduled him for an appointment in 3 weeks. I suggested we go to the ER. I mean - he can't move! So then he started moving. Well, you can tell that it hurts, but at least he is moving. I suppose if it gets real bad, he will call the doctor back. And of course, he could well be lying and never have called the doc at all.

It just seems like he is having more and more angry then happy spells, changing his mind on things, and loss of memory. I am trying my best to just roll with the punches, not take anything real serious, and take care of the caregiver - as much as I can. And pray. I do think prayer has become a much bigger part of my life. After all, it is a form of meditation and that helps.


Sunday, June 22, 2008

Dear Widow of Diabetic,

Where do I start with my questions? I must have thousands. How do you stay aware of the difference between changes in his personality that are directly related to diabetes and those that are just part of the aging process? When do they start dialysis? Do you share with anyone else that he is incontinent? How do you tell your own mother that you are doing great when she can read you like a book?

What are the things that happen to him physically before they diagnose him as ESRD?

I keep thinking nothing else can go wrong, but then it does.

How do they go blind? Overnight? Both eyes at the same time? or does the vision just progress until they can no longer see with correction? My DH has had cornea transplants, wears hard lense over soft lenses and readers. I just don't know how he sees a thing. He spends an absolute fortune on the latest in HD TV stuff. Movies are his life. What happens when he can no longer see them?

When do you say "no" to caring for him? To doing all the driving? To running up and down the stairs fetching whatever it is that he wants?

OK, those are just for start.

This week, he is still having wild, strange dreams all night long and is not getting any rest. The skin around his eyelids is looking very pink - compared to the rest of him looking gray/white. He has slept almost this entire weekend. It's 7:30 pm and he's gone to bed for the night.

I think I'm just tired. :o)