Caretaking is not for the weak...even when you feel that way.

I have been on a blogging hiatus.  Life has just been overwhelming and no matter how many times I tried to write something, I just couldn't find the right words.

I am a caretaker.  25 years ago when I was a child, I never dreamed that I would be taking care of a parent....much less that my parent would be single because we lost the other one years ago.  I never dreamed that my life would be on hold...that my marriage would end and I wouldn't have a family of my own.  I never dreamed that I wouldn't be able to continue my schooling or continue on to a career that I had dreamed about.  I never dreamed that I would have sleepless nights and long days with endless amounts of attention to medical appointments, medical bill, medical insurance, and a strict schedule for oodles of medication.

I certainly never dreamed that my parent would need my constant attention that would make me feel like the parent of a child that is failing.

I always dreamed of being a mother and watching my children grow and succeed.  I always dreamed that I would watch numerous accomplishments and a blossoming life. 

Instead I am watching a man that was always my superman fail in his mind and body.  I am watching him slowly die a painful death that cannot be stopped.  I am watching him slowly lose himself and he knows he is losing himself....which is scary and sad for both of us.


I spend countless nights dealing with medical stuff.  I pay the mounting bills and figure out what goes out when.  I go through meds, taking time to figure out what we have plenty of, what needs to be refilled, what needs to be dug out of the medication containers to replace empty or nearly empty bottles.  I go through blood sugar and blood pressure readings and try to figure out what was ate or what was done to cause high rises or low falls.  I go through the calendar to figure out appointments, which are now several a month.  I lie awake thinking about the past and worrying about the future...knowing our path and what his choices are.  I may not like them, but I support what he wants 100%.  I look for symptoms of the diseases progressing...I try to be fair.  Not blind like I want to be, but not completely crazy thinking every little thing is something horrible.  I make tons of lists to keep me sane in this horrible journey.  Sometimes I end up being a little insane and crazy.

Sometimes the world seems to be falling around me and nothing I do is helping.

I am not new to caretaking.  This is my life.  Not the one I envisioned, but one I wouldn't trade. It is hard being a caretaker.  It is difficult to take care of someone you love...the one person that has stuck beside you through everything...mistakes and all.  It is so suffocating watching that person die and knowing that short of a miracle, that death will be slow and full of suffering.  I don't wish that on anyone. 

I have been criticized because I am labeled lazy and a mooch.  That I am just waiting for the last living family member of mine in my immediate family to take his last breaths.

There is no money...much to other's beliefs. I gave up everything to be here, to keep him at home as long as possible.  I watch him fail daily. I face every morning with the fear that this will be our last day.  I go to bed every night with the fear that I will be awaken with a horror scene.  I see his memory fade.  I see his health make it where he can't do what he used to.  I have to step up and set limits...as mean and cruel as it may seem so it causes no harm to others.  I hate seeing his freedom fade.  He fought for our freedom and he is losing his.

It fucking sucks.

I have been accused of mistreating him and wanting to throw him into the nursing home.  I live with the fear that I will have to put him because I can no longer take care of him.  I neglect myself so he has his medications and appointments. Most of all...none of these people that are butting in pay the bills or take care of him when he is so confused.  They certainly don't spend the 5 times a day making sure he has his medications.  It angers me because I see none of them here when he is fragile and weak and needs care, but they think they have the right to tell me how to run this household and his care.

I would do anything to keep him healthy, but I can't. There is nothing I can do to fix this.  I weep silently daily knowing every moment I have with him is precious.  I weep for the fact that I am lucky to have this time with him. I weep for the future that I know will leave me alone.  I feel guilt when I pray that he doesn't suffer like most do in the final stages of his diseases.  I weep knowing that if he lives longer than we expect that his mind will be worse than his body....but I weep that he is dying a death that he doesn't deserve and there is very little that can be done about it.

I am not perfect.  I don't claim to be.  I am not the world's most patient caretaker.  I am not ready for this journey that we have been on and will continue until the end.  I am not ready to face the endless time in hospitals and decisions that will have to be made.  I am not ready to say good-bye like I have several times before when we thought we were losing him.

My heart hurts and my stomach is in knots.  Tears flow from my eyes while I desperately try to be strong and brave and not allow anyone to see it.  I am tired of losing people I love.  I am so tired of watching them suffer before they die.  I try to prepare myself for the pain and the uncertainty the future holds but I know with each passing day as it belts me like a ton of bricks that you simply can't prepare for someone to die, no matter how hard you try. Months and years ahead...such a long journey, I have no idea how to travel on this path and still keep my sanity.