Saturday, October 24, 2015

A very good comment

a reader posted this:

I know exactly how you feel. And this blog illustrates to me just how long a non-compliant diabetic's chronic decline can affect their loved one's lives. It seems endless, and with no hope for getting better. Only a promise of years to come with losses and horrible physical and mental problems to contend with.  Having your own life aside from that horror is key to maintaining your sanity and health through the duration of this event in your life. The option is to leave.  So if you decide to be there for your loved one, you must take care of yourself first. Even if it sounds selfish. Put your oxygen mask on first - THEN help your neighbor. - get it ?!That means find something to do in your life that you love. Do it every day if you need to. Protect your self. A friend put it this way: Don't let your life get stuck iin the axle of their illness. We are all separate to some degree, even when healthy and happy. Realize that. Don't feel guilty about it.

I liked the analysis of putting your oxygen mask on first....then helping those around you.  I think that's a very good thought.

But sometimes in a crisis, I forget to do that!  Something I am going to work on.

The good thing for me is that I have found a variety of things that I love to do.....and I do them as often as possible.

And yes, a non-compliant diabetic's chronic decline seems endless.  Absolutely no hope of getting better.  Just more and more things going wrong with the body, more medications, more side effects.  Maybe the hardest part is to watch the other person decline right in front of your eyes.

Or to notice the tiny little differences from one day to the next:

"why is the skin under your eyes so white today" (a symptom of kidney failure)

"why are you so quiet today?" (depression, pain, drug effects?)

it seems endless at times.  So I go garden.  I have strawberries blooming in October - a great reminder that there is hope, no matter what the season is.  :o)

More surgery or not?

I don't post unless there's something new or different.  There's still the roller coaster ride of highs and lows...but he is trying hard to contain them.  I appreciate that.  He has had significant back pain, so finally had X-rays done.  As predicted, his upper back now needs to be fused and he's been referred to a neurosurgeon.

If you remember back in 2011 when he had his spinal fusion surgery - it was a nightmare.  They wrote down the wrong insulin and cut his dose by 90%.  So he crashed on the operating table.  Afterwards, he had blockage in his intestines and had a stomach pump in for 2 weeks.  He also got c-dif - a horrible hospital infection....just so many things that went wrong, and he said he would never go back to a hospital.

But sometimes, pain can change your mind.  I have decided that we can at least talk to the surgeon.....but I wonder about more surgery.  Could he survive?  Would it solve the pain issue?  If he doesn't have the surgery, how long can he survive the's pretty severe.

A1c is still between 8 and 10.  No improvement in that.  How long can one survive with such high A1c?  He's been at this level consistently since 2008.

On another note, a reader posted this in the comments on an earlier post:
You asked How does your spouse deal with grief and sugar highs and lows. Mine has rage as his first outlet. But like you I have made some rules. He is aware that the option is that I can leave. I don't say it often, but he knows it.  My question to you is - Keeping your gardening, focusing on something that gives your life good moments - does that help you to alsoIt  be able to seee the good moments between you and your spouse? As those good moments become less and less, and he turns into someone almost completely different than he was? It's kind of like how an alcoholic dies; they get mean. They aren't at all who they used to be. The personality changes SO Much! So I have friends that I do my one activity I like with. Focusing on that activity while we're doing it, as if life were normal, is what keeps me going. They don't know my situation though. They are just activity buddies. And not talking about Diabetes is kind of a treat. It's as if that part of my life doesn't HAVE diabetes in it. But I'm having difficulty maintaining at home because it's so depressing there! It's showing up in my lack of attention to the house upkeep. It's as if the house is dying along with my husband. Nothing gets fixed unless it is imperative! So little by little through the years the disrepair builds. I guess the answer is I should just tackle it myself. It might me feel alot better and gradually the house will become mine. And I will gradually learn to be the boss of those kinds of decisions. Taking the reins where he used to be the boss while he is still physically here - is one of the hardest things for me. Mechanical things. Construction. Financial decisions. The fact that I have to not just make them, but override him (because his idea these days is to let it go. Or say he'll get to it but he never does) and THEN do these unfamiliar things. That is maybe a lesson I wil take from this event in our lives, that will make me stronger and more capable when I am actually alone.When this is over. If it ever will be over. I sometimes think that it will kill me first.

My response.  Gardening has been a huge help.  It occupies my time from April - October.   It creates good moments between hubby and me because he enjoys how wonderful the yard is.  He can sit on the back deck and watch me work, talk to me while I'm working.  It gets him outside a little more often.

There are many aspects of my life that are void of diabetes and I agree, that is mandatory.  I am an artist and have groups that I join, events I attend. Diabetes is never mentioned.

I agree, I have learned how to do so much on my own.  Mostly due to the 3 year separation.  Youtube has been a godsend!  I don't think there is anything I can't tackle.  And because of the gardens, the house has to look great, inside and out.  Now that he is back, I do run most decisions by him....but I already know the answer.  :o)

Overriding him is an issue.  I wait until I'm pretty sure the sugar is normal to even have a discussion.  He is getting more and more I am repeating myself more and more - holding my tongue, trying not to let him know how frustrating it can be.  Yesterday alone he asked me 4 times about my plans for today.

Some days, I'm pretty sure I will die first.  But for the most part, diabetes is HIS problem, not mine, and in my life I try hard to keep it on the back burner.  Which keeps me sane.  :)