Care Giving vs. Care Taking

My Mom, with Eves, at Disney World, undeniably her favorite place in the world.  My Mom loves this picture.

I've been thinking a lot about writing this post, because I kept pondering over whether or not I had the courage to write it, but in the end, I decided that it is best that I do, if for the very reason that I might connect with someone, who has experienced and felt the same way that I do.  In that vein, I am probably, for the first time, really revealing exactly the way that I feel without embellishing, or deflecting my feelings with humor or sarcasm....so here goes.

I spent the last week with my parents in Louisville, in the hospital with my ailing Mother.  I have alluded to the fact that she has kidney problems and is on dialysis, but I have never really, I think, gotten it, until now, how truly ill she is.

I arrived at the nursing home, which they now refer to, as "rehab facilities" on a Sunday.  I had been calling my Father to get regular updates on my Mom all week, as she was admitted to the hospital AGAIN, and she was just released to the rehab facility.

I was in no way prepared for what I discovered.  My mom was extremely lethargic, she could not walk, and she could barely hear or see, and evidently, she had not been eating for several months.  Therefore, she could not take the abundant medications that she is required to take, and she had reached "stroke level" in terms of her thyroid and kidney failure.

My Dad has just retired, and just prior to this state, she convinced him to go to not one, but two University of Kentucky games, the first in Atlanta, and the second, in New Orleans, as they were ascending to the Final Four.

Apparently, this did her in.

There is no need to elaborate on how insane these excursions were, given her excellent mental state, and her not so excellent physical one.  It is in the past, and now things are as they are, and there is no going back.

I spent the night with my Mom in the Rehab facility (hopefully the only one I will ever go to) and within twenty-four hours, a squad was called because her pulse shot up to 160, and she was experiencing heart arrythmias.

It was very emotional and scary and dramatic for all of us.  My Father was exhausted from care giving, and I was immediately thrown into this surreal situation, where my own family (meaning my husband and children) seemed very remote and dream-like.

From there, I spent everyday at the hospital, worrying about my mother's well-being, hanging on her every meal and pill taken, and what was regurgitated, and how often she slept, and what she would say out loud in her dreams, while simultaneously wondering what was going on in my old life.

I would be sitting there watching my Mom sleep, while the machines beeped away, as the clock turn 2:50, and imagining my children running out of school, as the bell rang to meet their walking group home.

These are the types of texts I would get from my children that week.

 Mills (late at night):  "Mom, there is a bee in my room.  I can hear it buzzing and I can't go to sleep.  Love you."

Me:  "Your Dad is there.  Go get HIM.  I, however, am in another STATE.  Good night.  I love you."




Me to Hallie: "Can U n the girls do pictures and letters for Nina (my Mom's grandma moniker)? Thanks.  Love you."

Seriously?

Hallie:  "We will try to after dinner.  How is every1?  BTW can I order an ugly doll above when you get home?"

Me:  "We'll talk about it when I get home.  Good night."

Hallie:  "Please.  It's only fifteen bux.  Here is the link."

She, then sends me the link on this stupid ugly doll she wants.  Classic.


I became very close with a nurse named Bill, who I am now convinced was at the very least a mirage, and at best, an angel, who would smile at my poor Mother who asked him to adjust her pillow or pull her up in bed for the one thousandth time that afternoon.

"Yes, Ma'am," he would drawl, with a wink, as she asked him if the dinner she was receiving that evening was on it's way.  He would then go down the hall, and prematurely extract her tray from the cart, (which is NOT in his job description, mind you) and deliver it, as if she were the only patient on his rounds, and we were paying him under the table.

I asked him in the hall one time if he thought she was going to die, and he told me, "No, NO she is not.  Not on my watch she is not."

My Mom's friends all came out.  I call them the Ya Ya's.  The players are Norletta, Tootie, Carol, (I do not have the imagination to come up with these names.) Betty, and Diane.  I have known these women my entire life, but in their presence, I always feel like a child.

I try to assert my adulthood by mentioning my children, or my life in Columbus, but in my eyes, they just see me as "Jody's daughter".  I love them all and they are loyal, like all Southern women are to the friends they have grown up with.   It is just unnerving to me at times because as we are discussing my Mom's health, or their grandchildren, I feel like they are just remembering the time they took me on Spring Break and I stayed out past my curfew and came home drunk.

I guess that is just the disconnection we have because I was basically RAISED by these women in one way or another, and I flew the coup, and the girl that they once knew every move she made (via my mother and the telephone) is now a grown up, and a very different person, yet, just exactly the same.

I watched my Dad dutifully attend to her every need, none too great or small, even if she lashed out at him, because she just happened to marry the most loyal person on the face of the Earth. 

I must admit, that when it came to bathroom breaks, I would make myself scarce in a hurry.  I could give her her dialysis treatments, feed her with a spoon, even rub lotion on her legs and offer to trim her toenails, but when it came to ass wipin' - lose my number.

Bill would laugh when I made convenient excuses to get coffee or pretended to make a phone call, when I was really out in the hall checking Facebook.  My care giving limits had been met, and I can only apologize for it, but it's not going to change anything.

I would tell myself that I had givin' up ass wipin' when Eva was potty trained, but I think we all know that that is not true. 

It just got me to thinking about caregivers and caretakers and which roles each spouse plays in a marriage.  I suppose in a perfect one, each is both, but more than likely one spouse is more prone to play a particular role.

In a hospital setting, such as this, where you are there, for a long period of time, you are in this microcosm of health care limitations, and physician consultations, and endless prodding and testing, and then waiting for those test results.

I found myself shifting into high gear, trying to establish some sense out of it all, so that I could "set something up" for when my Mom was discharged, so that my Dad was not so alone.  I was met with ambiguity, and politics, and diffusion of responsibility, as I tried to secure a "more appropriate facility" for my Mom to go to upon discharge that could offer a  "higher level of treatment" should the need arise.

I was told by the liaison at the hospital that places patients in such settings, that she "could not predict the future" and then was told by the only game in town that offered said healthcare
that my Mother was "simply not ill enough."

I told her that this was "a first" for me to hear this, because all everyone who was consulting on her case said, was how ill she truly was.

My point, here, is that there is the hospital, and there are nursing homes, or "rehab facilities" and there is no in between, therefore, for someone in my Mom's condition, the ER becomes a revolving door, because rehab facilities are not equipped to handle "new issues" that arise in a patient.

So, for instance, if my Mom could not hold her food down, and therefore, was not ingesting her medications, then a squad would be called whenever the consequences of this reared it's ugly head.

In addition, according to Medicare standards, which pays for 100 days of Rehab ANNUALLY, if my Mom were too ill to attend occupational or physical therapy, THREE times, she would be discharged to her home, for my Father to take care of her, with at the very least, an in home caregiver, who would not be there during the night.  You must realize that this is a best case scenario of obtaining 5 days a week of in-home care, and it is all covered by insurance. 

Stop and think what that would be like.  After 100 days or three missed therapy sessions, every night, your caregiver is to spend every night "caring" for their spouse during non-waking hours, not to mention the round the clock care that is to be provided each and every weekend.

The alternative is to spend money out of pocket for a rehab facility, which is astronomical, or hire a private in-home caregiver out of pocket, on OFF days, just to keep a little bit of sanity.

For example, when Brad and I offered to give my Dad a respite from the hospital, my Dad literally JUMPED at the chance to have some time to himself.  It was then, that I realized how exhausting his role had become because the man has never taken a break in his life.  Up until this point, it was simply not in his nature to accept help.  He is the very definition of "rising to the occasion."

At my stage in life, we are not literally care giving or care taking, like the roles my parents' have assumed, but at least, metaphorically, we tend to pick our spouses up from the floor, from one time or another, due to strenuous life experiences, and not only is it imperative that we are capable of rescuing our partners, but it is also important to be aware of what type of patients we are, when we are at the receiving end.

I am fairly sure that at the ripe old age of TWENTY, when my Dad was reciting his vows to my Mother, he did NOT envision attending to her every psychological and biological need one week into his retirement.  This is a testament to love, and to commitment, and to loving someone so much that you are willing to endure an open-ended period of time, where someone else's needs are more important than your own.

It is funny.  I began this post with the intention of discussing the roles one assumes in a marriage when your life bottoms out, but instead this has become a declaration of what real love is - what blind love is. 

My recommendation today is to be cognisant of what role you have assumed in your relationship and then either be accepting, grateful, or if you are dissatisfied, then use it as an agent for change.  I believe that the older we get, the more established we get in our individual roles in a relationship.  In essence, as long as you are both equally committed to wiping each other's asses should the need arise, then you are OKAY.

It is important that you understand that this post is not a venue for you to express you condolences or whatever.  I am not trying to extract sympathy here.  I had my manager, Jen, read this before I posted it, because  I was so nervous to be so RAW, and she said, 

"It's a great post.  I think you should post it, but you realize that you are going to get a lot of people going, 'Oh, I'm so sorry to hear about your Mom and stuff.'" and then she goes, "I mean there is a lot of medical stuff in there, too."

LOVE HER.  That is why she is my manager, and not my EDITOR.  Kisses, Jen.  Hilarious.

The truth is that, this is strictly an act of catharsis, and I feel like I have been initiated into a club that I did not sign up for.  It is just one of those life experiences that you always hear about, and then it happens to you, and you feel completely alone.

The purpose of this post is to put into words what it feels like when you embark upon what I am currently experiencing.  I understand that probably most of my feelings and expressions are unique, because why the hell would you be reading this if they weren't, but the I would be willing to bet that the general consensus would agree that when one of your parents becomes very ill, and you are in the situation that I am in, then you will experience a huge awakening on several levels.

My Mom's condition has revealed a lot of emotional layers in me that I had not really pondered until now.  Family, caregiving, healthcare, friendship, health, marriage, and future are all things that were once an abstract notion, become very clear to you when you are faced with crisis.

I guess my real recommendation to you today is to value all of those things, and create memories, because you just never know how much time you have.

 

 

Mills and Nina.