Nothing is forever

I’m currently in New Orleans.  I hadn’t planned on being here but my little brother had surgery and things went sideways. This is the first time I’ve posted in more than a year and it just seems like things go through so many changes. I’ve always found it helpful to write.  Writing is a slow and steady process and it calms my thoughts. It takes time to write the words and it slows down all the turmoil churning in my head.

I love my little brother.  He’s a sweet, compassionate and gentle man.  His life has not been easy the last few years.  He lives in New Orleans and has a disabled child with Prader Willi Syndrome.  He’s 24 years old, and has the mentality of an 8 year old. He has severe temper outbursts and requires constant care for both his mental and physical disabilities. If you’re not familiar with that, and most people aren’t, it’s a severely limiting disability. My brother spent 30 years working very closely with Al Copeland, a multi-millionaire and founder of Popeye’s Fried Chicken, among other endeavors. Al paid him well and I really believe he was closer to Al than he ever was to our own father.  And, Al seemed to consider my brother, Dennis, more like a son than he did with some of his own children.  Al developed cancer and it spread very quickly.  He extracted a promise from his sons that they would take care of Dennis and make sure he had a job with them for the rest of his life.  Unfortunately, their jealousy got in the way and they booted Dennis out with a couple of months severance pay as soon as Al died.

Dennis has struggled the last few years.  His health has deteriorated and he got cancer of the esophagus and prostate.  He survived chemo and radiation and there was only one small tumor left that his doctor wanted to remove.  Of course, there are risks with any surgery.  Especially when one has just finished chemo and radiation and the body is weakened.

His surgery was 3 weeks ago and he has not regained consciousness.  He on a ventilator, blood thinners, and dialysis. After surgery, they put him on paralytics so he wouldn’t try to pull out the ventilator and he was heavily sedated.  As they began to wean him off the paralytics and sedation, we discovered that he is not responding.  What happened?  No one seems to know.  Did a blood clot go to his brain?  Did he have a stroke during surgery? No one seems to know.  He has a lot of movement in his hands, he blinks his eyes, he moves his feet.  But is he there?  He’s on a ventilator and they can’t do an MRI or CAT scan until he’s off the vent.

I go to the hospital every evening at 8:00 and stay until 6:00 a.m.  I talk to him at night and it’s absolutely heartbreaking.  He has tubes and machines everywhere.  And I keep watching him and wondering if his movements are just reflexive moves or if he’s struggling to try to communicate.  I tell him to squeeze my hand and then I wait.  And after a couple of minutes, his hand clenches.  And I can never be sure if he’s struggled for two minutes to be able to squeeze my hand or if it’s just another sporadic movement.

They keep telling us that his recovery will be tiny little baby steps.  I’ve been here a week and he does have more movement but I don’t know if that’s progress or just involuntary movements.  They put him on blood thinners and the dialysis works well but he’ll start having blood in his stool.  So they stop the blood thinners and his BP gets bad and his blood begins to clot in the dialysis lines and interfere with that.  It’s a horrible balancing act where adjusting one little thing cause a dozen other things to go wrong.

Is he there?  I want to believe he is but we won’t know anything until he’s stable enough for an MRI or CAT scan.  My sister and I have been alternating being here to stay with my brother at night and care for his son during the day so his wife can be at the hospital but we can’t stay forever. My sister will be back in New Orleans tonight and I will go home.  I will spend the night in his room tonight and agonize because it may be the last time I will see my brother and it’s so terrible to see him like this. I’m trusting God to care for him and I know we may be looking at taking him off life support in the near future so it makes it so painful for me to leave him now.

I am still with Carl.  I just want to run to him and let him take care of me but I can’t.  I don’t really think he would be much help anyway.  Carl isn’t very close to his family and he doesn’t seem to relate to the way I am bonded with my own family. It’s so hard to have a long distance relationship.  He’s 3 1/2 hours away from my home and it’s not like we can just get together for dinner.  It takes planning and I haven’t been home for days and days. I would love to leave here tomorrow and go to him but I can’t.  I need to go home and take care of my obligations on that front. I have to say I’m disappointed in the way he has reacted to the circumstances.  He says he loves me and I know he would like to get married but he just doesn’t seem to give me what I need.  I know Donnie is gone but I can’t help knowing that if he were here, he would move Heaven and Earth to be with me when I’m hurting so much.  Carl gives lip service to my grief but where is he when I need him?  Probably sitting in his store watching Netflix all day long and waiting for me to come and see him.  I don’t know how much longer I’m going to wait to see if he’s going to be able to step up to the plate.

I’m just so tired.  We’re prepared to lose grandparents and parents and aunt and uncles but it’s so painful when we get to the point where we’re losing spouses and siblings and grandchildren.  I’ve had so much pain in the last few years I just don’t know how much more I can take. Jesus, please, just take the wheel.

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