Taking inspiration where I can find it

Today is better.  I'm glad my mother is here.  We had some seriously awful fights when I was growing up, but we've managed to become friends in my adulthood and I'm so grateful for that.  We will always have our disagreements--because we're too similar in some ways and too different in others, but we both try to listen--that's the difference.

Anyhoo, I was reading some other caregiver blogs/article and I found one that struck a chord.  She writes about caring for her husband and managing the storm of emotions that entails:

"But sometimes, a fog of black resentment fills my room and I cannot breathe. It usually comes when I least expect it. It comes when a neighbor, whose most serious and risky challenge in life is which dress to wear to which party, calls to ask that I keep her pool plants over the winter in my greenhouse. I listen to her nonsensical blabbering about the cost to keep the pool pretty and I tell myself that I will not shout out my resentment at her request. I will not tell her about the challenges of a caregiver or that there is no time in my schedule of responsibilities to water her plants. Can’t she see that? I will not tell her that I must tell Tony that it is no longer safe for him to negotiate the stairs to his television room. I will not explain to her that it must be done in a way which will not strip away his independence and self worth. I will not tell her of the little battles that I fight nor of the multi-faceted totality of my being, the anger, the pride, the frustration, the admiration, that is who I am today.

And I ask myself would I trade places with the shallow woman who becomes horrified at an uneven summer tan. I think not. And I let it go."

And also this part:

"Helen Keller, who had great reason for self pity said, “Self pity is our worst enemy and if we yield to it, we can never do anything wise in this world.” She was not content to be frozen in a soundless world of darkness and self pity. Neither am I. Like Keller, there will be days when I want to sit down and quit, days when the road is too rocky, days when the enormity of the task is too much for me, days when I would be content to add my self pity to the pity of others observing my plight. I will tell myself that I must drag myself to my feet and go on as best I can without self pity.

Self pity cannot exist without self doubt. Our negative emotions are not harmful to others, only to ourselves. We must let go. I will remember Nelson Mandela who described how he forgave, without self pity, those who had imprisoned him for 27 years, “I had to let it go. They took the best years of my life…they destroyed my marriage. They abused me physically and mentally. They could take everything except my heart and mind. Those things I would have to give away and I decided not to give them away.”

It's a good read and it really resonated with me --in some of the fears I have and the anger about the selfishness of other people.  Sometimes I just want to scream "My husband is dying and you come to me with this petty bullshit!"

But I can't blame them because they don't know.  So many of the people at my job (at least in upper level management are so cutthroat.  I'm like "You work for a bus company, not the UN! Get OVER yourself, you paper pushing arrogant bastards."  That's obviously my internal monologue otherwise I would have been fired years ago.   I don't feel particularly compelled to tell anyone.  There are a few people there I trust who know, but I've never put my personal business out there for all to see---I'm not going to start doing that now.

My family and friends that I consider family already know and have been so supportive.  I feel so lucky to have them.  I really do.  I was speaking with my stepmom today and she said something that made me stop and think.  So far I have been handling this far worse than my husband--who is actually afflicted with the disease, probably because he's had more time to process and accept it (most of his adult life-he's 39).  But my step mom pointed out how close and supportive Harry's family is and will continue to be, she said you should be thankful that he was raised in and surrounded by love.  

And that's so true, when I think of the sheer number of people out there who don't have anyone or they may have a ton of money but no one who truly cares for them---it makes me feel better that my husband has people to rally around him.  He has a ton of friends and family who love him.  At least he's led a good life up to this point.

I try to be grateful for the small positive things, because the big negative one is so omnipresent in our lives that it's easy to lose sight of the good.  And there is good here.  He's in the early stages and still able to get around.  The cognitive stuff is rearing its ugly head, but he's still himself.  And By God I'm grateful for just a little more time before it all goes to crap.