Why Give A Crap What I Say? It's JUST me.

Why should you give a crap about me? I have no idea... BUT....I want to thank you for joining me on my journey of a super shitty - averagely happy - drama filled - absolutely hilariously funny life.
I clearly feel the need to spill my guts about what is happening in my life to people I don't know. The funniest most off color TRUE stories you've ever heard - and when you least expect it, you'll cry like a baby.

The photo you are seeing is "my" yard in the summer. A home is not a place it is the inhabitants that make it a home.

With love, Alyce

January 3, 2012

There is actually a group called a 12 Step Program For Caregivers

Maybe it's not really a group, but it is an image on google.  So, I'm not the only one to think of this idea.  There isn't a trademark sign but I bet it is trademarked.  And, if it isn't it should be.  

Now, I'm not talking about "paid" in money caregivers.  I'm talking about caring for your family caregiver.  There's no pay per se, your patient is often short with you, says thank you as if you just met, "has visits" with non-caregivers, and relies totally on you for their well-being.

Well, that's a job that screams "apply for me" or you might just miss this opportunity.

I was warned about the CAREGIVER SYNDROME.  Thought it was an urban myth myself, but it I am here to tell you it is no myth.  I am living it.  Hire a caregiver you say.  Ha!  That is only for those who care not about their loved one.  That is like having a nanny when you are a stay at home mother.  Um, shit, I did do that.

So, why not hire someone 24/7 to help me out you ask?  Well, we don't have insurance for that kinda care.  Not like most of you 47 year olds who plan on needing long term care when you're still TWO decades away from Medicare.  But, it's not really the money.  We could pay for it if we wanted to.   For some reason "I" don't want to.

The running of my office called "home" has been transferred to willing friends and willing family.  The running of my younger daughter is being run by my mother...(although I got y sticky fingiz in that one), my older kids are being run my CLOSE FRIENDS AND CLOSE FAMILY.  This is all happening around me as I tend to my ill husband.  

My husband's parents are so fortunate.  Fortunate in the sense that their priority is to come to "visit" with their son.  And then they get to go back to their hotel where there is peace and quiet.  Their 6 or so house visits are filled with whispering conversations, eating together, some smiles, lots of rubbing of backs and hand holding.  I don't know what's being said cause, well I'd like you to know, but I don't really know.  Cause I'm not really invited.  Would you invite your Daughter in Law into your visits with your son whom is ill?  

The role of the caregiver is lonely - with a smidgen of frustration - a big dash of jealousy - and a wallop of holy shit my back hurts.  I recently received money from an anonymous donor.  It was $350 total.  I immediately gave $200.00 away.  I did spend $70.00 on a massage.  I had to have the masseuse come to our home with her table to rub my knots out of my body.  They went from head to feet.  It was probably the MOST painful massage of my life.  I have a follow-up appointment next Tuesday to continue work on my body that is being beaten by caring for my husband.

I don't have much to complain about.  Or a leg to stand on if I was to complain about something.  It is not my death I face, it is not my maker (I admit I don't have one),  I will meet sooner than later.  It is not my children that I will miss growing.  

Somehow knowing I am not physically dying in my head; doesn't give me the same smarts in my heart.  I didn't go to nursing school cause I don't wanna nurse.  Funny, I am now an un-paid nurse.  That's the second time I mention pay.  To be clear it's not monetary pay that caregivers look for - it's remembering that we are still wives, still mom's, still the people we were before we did all the nursing duties for you.

I don't have a 24/7 caregiver only because I don't want one.  I want to get, do, be.  I don't want someone else experiencing with my husband what is only one of the two things that must be done during your lifetime.  I will be here 24/7 to do, say, be whatever it is my husband needs me to be.  I just gotta say I wish he'd remember to sometimes just be "us" when we are together.  Unfortunately, we are hardly together - as visitors take the place of the nurse on duty.

With love,

Alyce


2 comments:

  1. Glad you got that massage and its true,caregivers are often forgotten in the heat of illness. A caregiver's job is two fold....the loved one and themselves. There are also support groups for caregivers as well in most big cities and towns. I personally am doing what you are doing and blogging about our ordeal,it helps to see on the screen what we are going through and makes me that much stronger for it.

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  2. Alyce, I know you don't need to hear it because you know exactly what you need and want to do to help someone you love with all your heart. Although you may have visitors that may exclude you in your home the time spent with your love is all you need to worry about. Those who are not the caregivers will not understand your position whatmore the neverending love you have. Stay strong and continue to even though hard on you the time you have left that your husband I believe he truely appreciates you. :)

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Thanks for taking the time to chat with me. Love - Alyce