Tuesday, January 05, 2010

A frightening post about the reality of this disease

Agnus wrote:
"I know I'm not ready for him to be paralyzed. But he seems to be in no mood to listen to my fears...."
My husband also has constant sciatic pain but his started after bypass surgery in 1999. He had one of the last open heart surgeries on a steel guerney - after which they changed to a padded platform. His cardio said they added padding to prevent damage to weight-bearing areas that are drained of blood during the surgery. Given that HBS interferes with delivery of blood-borne nutrients, the cellular reasons for the pain could be similar.
My DH takes tramadol and occasional xtra-strength tylenol in addition to 2 types of insulin injections 4 times daily, plus 10 other Rxs for heart, kidneys, BP, depression, anxiety, allergies, sleep disorders - and he has Hep C, cirrhosis and hepatic encephalopathy which causes unpredictable bouts of mental confusion.
And, of course, he is in total denial. I prepare 3 very healthy meals for us both daily, virtually free of carbs because I am a recovering compulsive eater (maintaining 50 lb weight loss 12 years!). But despite this, he snacks like a madman: candy, cake, pie, chips, dips, popcorn, ice cream, peanut butter. He thinks he's being healthy because his bread is 100% whole wheat and his ice cream is No Sugar Added!
His liver specialist told us Dec. 8that his liver will fail in 1-3 years so he should use that time to get his diabetes and weight under control so he can survive a transplant. She was nicely saying, "If you don't get your diabetes and weight under control, we won't waste a liver on you."
His response? He went to bed for three weeks, and ate like a madman. Wild swings, usually from the high 200's to the low 60s but this holiday has been brutal: 565 last Saturday morning, diabetic coma/delerium Monday morning. I stuck a straw in his mouth and he stopped screaming long enough to suck down 4 oz of apple juice but it only increased his terrors. He was seeing monsters and demons, trying to hide under the covers and screaming, screaming. It was awful. It took 4 medics to hold him down for a finger stick (35) and IV.
He spent the next 2 days in awful pain from the convulsions. We went to the doctor Wednesday for guidance on home health support - I have to travel for work sometimes and this is the 3rd time since April that he has confused his Lantus and his Novalog.
Would you believe, he tried to smuggle three lollipops from the nurse's desk on the way out?!
Yesterday he decided to wash his car (he has been mostly bed-ridden since December 8). Of course in 45 minutes he was so low he almost passed out. Then we went to his son's house and he ate all five of HIS food groups: sugar, flour, salt, fat and grease.
Your blog shares remind me this is his disease, not mine. Alanon is also helpful (most families have at least one alcoholic in the family tree to qualify them!). They remind me that I didn't cause it, I can't control it, and I can't cure it.
Because my DH has liver-related mental problems, I have adopted this bottom line for my role in his diabetic care: Don't die today!
This helps me let go of his poor food choices (longer term death risk), while accepting some caregiving responsibility to cover his back on the insulin that, if mismanaged, might kill him today.
Thanks for listening and for sharing your blog. Hopefully my share can help someone else too.

Agnus, THANK YOU for posting! I see my future here. I have been asking those who have a spouse worse than mine to post....so I can prepare. Try to prepare. Or maybe just brace myself for what is to come.

I had not heard about the convulstions, liver-related mental problems, or "madman" episodes. How do you survive? How do you get through each day?

I know the basic tenants of Alanon are quite helpful as they do remind us of what I talk about so much here. My 3 "C's" to survival

1. Cause - it's not my fault that he won't take care of his disease
2. Control - he is the only person who can change him.
3. Cure- there's nothing I can do to fix him

You have certainly given me a lot to think about this morning.

Hubby has basically been bed-ridden for the last 3 weeks. He is back to "work" as of yesterday.....but from bed. We went to the grocery store yesterday morning. He couldn't even walk to the pharmacy section to get contact lens solution - he was hanging off the grocery cart. I did the rest of the shopping while he sat in the coffee area and waited for me. Came home and went right to bed.

I have to wonder how much longer before he is in a wheelchair with us in a 3 level house on 2/3 acre of lawn???

But I have a plan!!! I have a huge art event the end of this month that I am working towards. But starting February, I am going to be busy on ebay and craigslist.....selling everything. We are downsizing.....like it or not. I am going to sell absolutely everything that would not fit into a 2car garage - 3 bedroom - 1 level house. No basement. No attic. It has to go in that space, or we are getting rid of it. His collector car. The ATV. The truck and trailer. Huge changes!!! Because I teach art in my home studio.....I have tons to unload.

I realize that if I don't do it now, I will still have to do it at some point in time....and I am not getting any younger. If he ends up in a wheelchair, then I will be so busy as a caregiver, I won't have the time. I am just hoping that he can stay physical enough to do stairs throughout the end of this year.....give me 10 months or so to sell everything and then next spring, we will put this house on the market and look for a handicapped accessible place to retire to.

Now, whether or not the plan works out....at least I have a plan. And I have come to realize that if you are the spouse of a diabetic....you need a plan. It gives you something besides their disease to focus on!


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