Saturday, December 24, 2011

Christmas with his grandkids

Today is our only holiday celebration. His kids and grandkids were here.  I had let him order all their gifts online - he used Amazon and they came already wrapped.

Well, there were mistakes. The oldest granddaughter got 2 Wappydogs, so the youngest grabbed one for herself.  The 2nd wappy was supposed to be something else, so basically, the oldest only got one gift, while the other 2 got several.

And you could see the disappointment in her eyes.

I pulled hubby aside and handed him a $50 giftcard that I was going to mail to my son and told him he had to give it to her.

He did....and she was thrilled!!!

But it hit me that I think the problems with cognitive skills may have started, so I need to start writing these down as well.  I checked his online orders and he had ordered 2 of the same thing and none of the order. Yet he has proclaimed over and over all afternoon that the toy store messed up.

We had gone to the grocery store this morning to pick up last minute things for lunch.  We were at the checkout and he was behind me and I said, "do you want to go ahead of me and give her your card?" meaning the discount card for that store.  He started digging in his pockets and asked me if I had my car keys.  I asked him why he needed my keys.  He said to go get the car.  So I realized he thought I had said "car" not "card".  So I said, "No, I didn't say you want to give her your grocery card?"  and he just stood there and stared at me.  It did not register to him what I was saying at all.  So I said, "You know, for the discount on what we are buying today?"  and he still just stared at me.  I started to ask him for his wallet and he blinked and said, "Oh - my grocery card!!!"

Now, we have been doing this 2 - 3 times a week since his last surgery - it's become almost a daily thing this past month.  At first I thought it was just the hubub of so much going on, but now I'm starting to wonder.

I've read as much as I can find about neuropathy of the brain and what to expect.  This really is a new kind of stress.  And it seems to be the simplest things.  Trying not to have any frustration in my voice is so hard....but so far, I'm doing ok.

What I'm learning more and more is that this really is not easy. There is no text book to prepare you or even help you.  There are no guidelines.  No rules.  you just fumble your way through it the best you can....knowing that it is only going to get worse.

Friday, December 23, 2011

He can't stop

Tonight he ate a 1 pound of box of specialty chocolates after lunch and dinner at restaurants.

All I can do is pray.

Thursday, December 22, 2011

He is so on edge

and I'm pretty sure it's from the constant high sugars.  Everything upsets him.  Yesterday, I didn't say "good morning", but started out my day by letting him know I was running to the post office.  He came completely unglued because I didn't say "good morning" first thing.  Not his typical behavior at all.

Today, he wanted to follow me around the grocery store.  He has not done that in 3 years.  He always sits in the chair and waits for me to finish.  Today, he bought everything in sight.  Literally.  I finally had to ask him to go sit and wait for me....and then I started putting thing back on the shelves!!!

The past couple of weeks have been like this.  Everything seems to upset him.  News.  Weather.  He just gets mad at the drop of a pin.  I've been very quiet, not saying much of anything.

But on the opposite end of the spectrum, he's been putting in movies that I like.  He never does that.  He hates chick flicks...but he's been asking me what I want to watch (not typical behavior either.)

I'm just making my observations.  The other weird thing is his body heat.  He has been hot this winter. He keeps turning the thermostat down and I turn it up.  He sleeps in his shorts with no blankets while I'm bundled up in jammies and a heavy blanket.  Completely different from past winters.

I feel like there's a time bomb ticking in him and it's going to explode any minute....but then it doesn't.  It's just that "feeling" is there all the time - he's that much on edge.


Monday, December 19, 2011

On her birthday - she writes to me - I hope we can help her.

From another wife:

I sit on the couch in the dark frustrated over the same life that you seem to describe in this blog. I have been a coach's wide for what will be twenty five years in July of 2012. My husband has been a diabetic since his early twenties and is now fifty. He almost died before my eyes twice since December of 2010. He had a stroke at 37 and miraculously had no deficits except numbness to slight numbness to left side. After his heart attack, he was put on ventilator and went to a rehab facility. I have had to stay in a icu waiting room praying he would live. He has been life back three times but still does not appreciate it as evidence of not adhering to a diet with blood sugars running over 600. He is on a large amount of insulin daily. Likewise, he has very bad mood swings. I have been told when I kindly commented to him to watch his carbs out if love and concern to only be told could he "just eat one time in peace". If I suggest or show concern then he just says he is tired and ready to go "home" which he means to heaven". He weighs 280 and is 5'9". His family history includes deceased parents, both of which died at age 59. His brother who I love like he was my brother has just been told has about five years to live because his heart is severely diseased. He will need a heart transplant. His son is nine and has been a juvenile diabetic since three. I get mad at him on the inside because I feel it it selfish of him not to want to manage his diabetes. Does he not love me? I am his primary caregiver. He is legally blind and requires assist with daily living activities. He walks very limited and has bad neuropathy in his lower extremities. I know this a long comment but I am lonely and depressed and today is my birthday. I wish I had more control of my life!!!!

You poor dear.  Happy birthday.  But how sad that you write to me on this day that should be all abou tyou!  All I can say is that you are not alone at all.  I have often asked myself if my husband loves me.  And I believe that he does.  Perhaps the issue is that he does not love himself?  I don't know.  Why does anyone who has a disease or medical condition of any kind decide to not take care of themselves?  Diabetes is a little harder because it is every day, all day long. It is controlling and limiting what you eat and when you eat, and dealing with so much loss of things you used to be able to do/eat.

I am so sorry that your husband is blind.  I know it is in the future for me and I don't know how I will be able to take care of him once he gets to that stage.  How do you do it?  Would you consider starting a blog to write about your experiences?  Tell us how he gets through a day, what you do and what you can't do to help him.  I'm sure there are plenty of blind people out there and their spouses probably write about it, but I think it's different when you know your husband brought this on himself because he didn't take care of his diabetes.  How do you not feel resentful towards him?

I do believe that you can get some element of control over your life.  While I struggled with that for such a long the moment I at least feel I have a bit of control.  I set goals and work towards them.  This winter I am working on finishing painting the inside of the house.  I've recently taught myself how to make candles.  I schedule time with my friends at least once a week and leave the house.  I have 1 day of shopping a week.  I hardly ever buy a thing....but I will walk a mall, go to a thrift store, go to an antique shop, just get out and look at things.    And I blog.  Not just this blog about diabetes, I have one about my art, one about my religious beliefs, and I'm going to start one next year writing reviews of local restaurants.  No, I do not get paid for a thing that I write...I do it just for fun.  Oh, I also am very involved in a huge genealogy project.

So I think having something to do, having goals, being with friends - those are the main things I've done to get control of my life.

And yes, when he crashes, is sick, needs surgery, has a heart attack, has an optical migraine headache where he loses his vision.....I stop what I'm doing and turn into his caregiver.  And I do have to push and struggle to get him to take charge the rest of the time.  Leaving him alone to go spend a week at my mom's or my sister's has been wonderful.  It gets me away and forces him to take over.

So, can you get homecare to come in so you can get a break?  Does he have family that will come in and give you a bit of respite?  Can you get counseling?  Find someone who can help you find ways to get a break from him because you have to keep yourself well, both mentally and physically, in order to care for him.