Showing posts with label caregivers. Show all posts
Showing posts with label caregivers. Show all posts

Saturday, June 21, 2014

Labelled



The man looked at Matt, our son, and asked, “What do you do?”

Matt gave his practiced answer.  I wish I remembered what it was; it was a really impressive answer and made me proud our son had such a great job description.  Marty and I made a good man…yes, it was all us, okay maybe Matt did part of it on his own but we loaned him DNA.

The guy looked at me and I knew he was about to ask me the same question.  I hate the question, I don’t have a real defining job or label and I don’t like any of my answers, they either seem trite, inaccurate or over involved. 

More than ten years ago, before the strokes, right before my corporate divorce from big business Marty had warned me, “Get an answer to the question, because people want to know what you do.”
She had been down sized, she had gone through the work identity struggle and while not having income from work is the worst, the second worst is that you lose part of your identity when your job goes away.

I’m prepared for the question, sort of.   Even before the man asks me what I do I am mentally sorting through my options:

“I’m a caregiver; I take care of my wife, she is a stroke survivor.  She had her first of two strokes almost ten years ago and that’s what I do now.  It takes a lot of time and there is a lot of anxiety involved and I’m not really a medical kind of guy but it is frankly the most decent thing I have ever done. “

This is not the answer I want to give.  It’s too long, too convoluted and the din and clang of the people and machines around me made a long answer too difficult, besides I don’t want to get the “aww, that’s too bad” response with the accompanying sad looks.

With this answer I also have to describe Marty’s life by providing her a label, a name, a reason for her existence.  She is not a stroke victim; Marty has never been a victim in her life.  In spite of the fact that Marty is my hero I have never been fond of the whole stroke hero thing.  Stroke survivor, yeah, not so much, stroke patient, not really…..I don’t know….I just call her my wife and she has had some strokes.  

Label, schmable…

The 2nd option is to say I’m retired.  This is mostly true but frankly I don’t like that answer because I am much too young and handsome to be old enough for retirement and I don’t feel retired most of the time.  I clean up dog poop from a 17 year old incontinent dachshund, my life is directed by four care givers and a wife, and I manage the intricacies of a Marty’s major illness. My life vacillates between boredom and high anxiety and the whole thing is demanding and simply saying retired does not feed necessary parts of me, my ego and my id.

The last option and one I choose most of the time is to simply say, “Nothing.”  I laugh a little and say, “I don’t do anything”.  It’s short and sweet and just self-deprecating enough to get a smile and generally shuts down the whole idea of having to explain my existence by the way I feed and clothe myself.

Marty gets it.  On one of our trips to Dalhart U.S.A. to see Marty’s mother, her mom, before she quit talking, asked me what I was doing now.  Before I could answer, Marty, the two stroke survivor, chimed in, her sarcasm meter on high, and I quote, “He sits on the couch and watches TV.”
Now that’s not true at least not in broad daylight.

Marty was right ten years ago, you need an answer, we all need an answer to help people understand us and to help us with our own identity.  I’m really pretty cool with my new one; I’m comfortable being a care giver, being the husband to Marty and the other women who direct my life.  I’m cool with being the father to Matt and Erin, the father-in-law to Lyle and Sarah and the son to Bettye and Larry.  It really is where I belong.  

I just need a short answer for the question, it does come up and people really want to know. 

Saturday, August 3, 2013

Caregving Upheaval



It was our first Christmas with our first born, Matthew.  We were in Dalhart Texas some 600 miles from our fairly new home in Paris Texas.  Matt was only 3 months old and Marty took the call from our new nanny in Paris.  The news was bad, catastrophic, as any new working parent can understand; the sitter wasn’t going to be able to keep Matt anymore due to some health issues.  Christmas was turned on its head as we tried to figure out child care for our new born baby.

We are going through a similar upheaval with our current caregivers, only this time I’m the one dealing with it.  I suppose its a little payback for that Christmas years ago when Marty took the brunt of the responsibility.

We have four caregivers.  Two, Renea and Nykkie, who are sisters, have been with us over seven years.  They have been with us from the start of this odyssey.  That’s really pretty remarkably in the care giving business.  We have two more, one, Erica, has been with us over three years and the last, another Renee, has been around almost two years.  

When you have to trust the life of your loved one to other people, when you have other people essentially living in your house with you, continuity and consistency are a God send. We have been lucky.

Renea recently finished her PhD in psychology and not so remarkably is going out in the world to ply her new trade for much better compensation.  Marty and I are very happy sad about this.  Renea came to our house when we were in turmoil trying to find our way in our new life.  I needed someone I could trust, I needed someone who I knew would be there to help me, we found Renea and she brought a sense of calm to my life.

 Nykkie has been with us for two stints but is the one who has been working all day most days for the last five years.  She loves Marty, she loves our family, she is a constant in our lives and is like our 2nd daughter.  Dr. Renea has inspired sister Nykkie to go back to school to get her RN.  She must now work nights only to go through a compressed and rigorous nursing program, more happy sad times for Marty and husband.  

It’s an upheaval.

I have always jealously guarded my personal space.  Its uncomfortable having someone in your home with you 24 hours a day, it makes it hard to run to the fridge in the middle of the night in your boxer briefs.  You have to learn when and how to do that, it takes time to acclimate yourself to the extra body.  Having someone there that you know, that sat in hospital rooms with you,  has held your wife’s hand as she went through difficult procedures, that has given you the confidence you are doing the right things is incalculably valuable.  

Changing all of this, changing the personalities, changing the guard is a big deal.

I don’t mean to intimate that it is the same as losing child care when you desperately need it.  I can cover with Marty, I don’t have to leave the house to work, I can do all of the things the caregivers do, I just can’t do it all of the time and have any ability to take care of the rest of life.  Caring for Marty is not a one person task…it just isn’t.  

Renea, Nykkie, Erica and Renee do more than just watch and bathe.  They are the buffer to my frustration with our life’s situation and keep me in check and they are the people who do the dirty work every day every hour work with Marty.  They spare me, they save Marty.

It’s a big deal when we have a defection.  We have kissed a lot of caregivers to find the four princesses we now have and I’m not sure I’m up to kissing that many new faces to find another keeper.

Fortunately, we have found a cousin to Erica, LaShonda, who just completed her first work week with us.  She came to work, she was cheerful, she was careful, she was on time and she didn’t scare Marty.  She appears to be a keeper.

All the same, it takes time, energy, effort and repetition for all of us to start to establish the kind of trust I(we) need for this to be truly successful.  It will take us days of being with La Shonda, it will take weeks of working with La Shonda and weeks of dealing with Nykkie’s new night schedule to get to a place of comfort and trust.  

Life moves on, people, people you love and cherish, come into your life move on and do different and better things.  We learned from Renea, we will continue to learn from Nykkie and Renee and Erica and now La Shonda.  

We will continue our life with this company of people, people who never would have been in our lives if not for Marty and her journey.  It’s funny how love for strangers can come to you.