Wednesday, February 27, 2013

She Can't Stand the Stupid

Marty and I were sitting in the living room killing time, waiting to head to the movies.  We were going to see Side Effects (a good film).

As we were chilling, visiting, and watching Mythbusters our once every two week house keeper, Robin, started unloading the cleaning paraphernalia from her car.  

Marty says, “Robin is here.”

This is really pretty good because sometimes Marty can’t get names right, even Robin’s who has been coming to our house for about 15 years.  She doesn’t remember a lot of names; they aren’t high on her list of things to remember and she only has some much cognitive bandwidth.

I looked out and Marty added, “She’s walking up the uh, the drivewalk.  No that’s not right, it’s the …..”

She paused, eyes intent, watching, thinking, I waited, probably not long enough, “Sidewalk,” I said.  

“Yeah, that’s what I meant.”

“That’s excellent,” I said.  “It doesn’t matter what you call it.”

She said nothing, just silence. 

I always thought Marty was the smartest, sharpest, quickest witted person in the room.  I was both in love with that thought and intimidated by it.

I think Marty always thought she was the sharpest, quickest wit in any room.  She probably thought in her heart of hearts she was the smartest person in the room too but she didn’t ever say it, in those exact words.

She hates to struggle with the words, with the thoughts, with the statements.  I really think struggling with her words is harder for her than the not walking or the incontinence or the general loss of independence.  She can take indignity; it’s the feeling of stupid she can’t stand.

I know she isn’t stupid, I think she knows she’s not stupid, she just feels, less than, deep in her soul so many times during the day when she can’t easily access the right word or phrase.  She has enough of her mind to know how quick and easy and fluid her chatter used to be, she remembers what a marvelous tool her brain was.  She is well aware she is no longer the wittiest person in the room and it hurts her.

There are so many times I see her struggling to find the word, the phrase, the retort, the rejoinder.  I see her thinking and then she turns quiet, she says nothing, or says something like, “I don’t know”, when you ask her a question.  She shuts down because she is afraid she might say the wrong word, she might say “drivewalk” instead of sidewalk, she might feel stupid, she might be embarrassed…..she might be reminded of what once was.

She is probably least cautious with me; she knows I know who she was and who she is now, she knows I accept her today, just as she is.  I have told her time and time again how far we have come on our journey and how proud I am of her struggle.   I don’t care if she says the wrong word I just want her to say words; that’s why I’m here to help her with her struggle to find the words and interpret the thoughts.  

I know how far we have come.  I remember when she first came home and she was crying to express herself, she was constantly perseverating, and we often resorted to rudimentary sign language to communicate, to get her to respond.   I know how much better we are today, for Marty that’s small consolation. 

The improvement is accepted but ultimately, to Marty, it doesn’t make up for the loss.  She feels self-conscious, mentally slow, and inarticulate.  Ultimately, she feels stupid and we never did stupid at our house, we unfortunately, never really tolerated slow to the lip.  We did sharp, verbal diarrhea at our house.  

Life changes, events in our lives change us cataclysmically and irrevocably.  Marty has lived it.  Accepting the change, embracing the new normal is almost impossible; it’s even more difficult when you feel like you have lost the best part of yourself, that part of your essence that made you strong and confident.  

If you get a chance, talk to her, draw her out and watch.  If you watch her you will see her thinking, you will see her struggle, you will see that her mind, while not as sharp or quick is still there, calculating, trying to find a way out of the stroke clouded brain.  

Marty’s broken brain does not make her stupid; it makes her different from what she was.  It’s all part of our evolving.

Saturday, February 16, 2013

Marty's People

Marty has brought so many new people into our lives.  It’s a natural consequence of major illness.  You need help; you need help from people you might never have met otherwise.  Marty’s new life has shown us so much and so many new people.

She came to us about seven years ago this month, a new caregiver, the diminutive sister of another of Marty’s caregivers.  She drove up in an old, white, beat up mini-van.  We knew nothing of her or her life, she knew little of ours.  It’s been seven years since she started making a difference in our lives and we in hers.  Our life got better the day she parked in front of our house.

Marty and I struggled in those first months after the 2nd stroke.  We struggled those first years to find the right caregivers, the kind of people who would really care for and care about Marty, the people who were honest, the people who would come to work, the kind of people you could invite to share all parts of your life.  We kissed a lot of frogs and sent them on their way, we found a few princesses but too often they moved on to other castles.  

This woman came and stayed.

We didn’t know her full story it at the time; we didn’t know she had lived in that beat up van for a few days prior to coming back to Waco from Austin.  We didn’t know her husband had bolted leaving her with three young kids, a new born, a mountain of debt and no place to be.  

It’s an all too common story.  She had her first baby when she was 15.  She is the living embodiment of why sex education is important.  She knew what she was doing, but she didn’t really understand the potential consequences of what she was doing.  She was a baby having a baby.

She got married to her baby’s father because it was what seemed right.   After they were married, after the birth of her son, for reasons I don’t really understand or need to understand, she had two more children before she was 20.  At 20 she was the mother of three, she was still just a young girl, a girl with a high school education, a strong work ethic, a wonderful mind and some dreams, a loving heart and a quirky life view.

She worked at McDonald’s to support her family, she eventually managed a shift at McDonald’s owing to her work ethic and smarts.  She went to school some and became a Certified Nursing Assistant and almost a nurse, she just didn’t finish.

The father of her children, her sort of husband, was not really someone she ever thought she would stay with and she didn’t and of course he didn’t take any responsibility for their children.  It was just her and the three loves of her life.  

Then in the process of caring for a dying older woman she met husband number two, a guy who was smart, educated and different.  She fell in love with the different and the smart not realizing he didn’t have substance.

The five of them moved to Austin, she worked, she got pregnant again and the smart and different guy turned out to be not that different after all and bailed right after their only child was born.  He ran up debt and financial commitments that she couldn’t keep and while she was still recovering from a poorly done Caesarian she had to leave their home.  She did the only thing she knew to do, she continued to work as a nursing assistant, living out of that beat up white mini-van.

It was shortly after that event that she came to Waco to work as a caregiver for an agency in Waco.  The man with the fancy education and no heart came back to her and they found a place to live together in Waco.  Her sister, one of the few caregivers we had found we liked was moving on to a better paying job and recommended the woman to us.  That’s when we met, she driving the sorry old white van, me looking for some way to control life with Marty.

She brought a sense of comfort to both Marty and me.  She came to work, she was smart, she was dependable, she had initiative, she worked extra and she clearly cared for Marty, it was easy to see, you could actually feel it.  She was confident in what she was doing and I finally found someone I could trust.  Finding her was the turning point in our new normal.

She came to work every day, working long hours, working extra hours when they were available to support her family.  She was the caregiver where I could express my anger, my frustration, my angst.  She absorbed it too much and only once or twice did she bark back because somehow she knew that my ability to be angry in front of her, with her, meant I trusted her completely.  

The father of her fourth child, the one who made her homeless, the one who begged his way back, left again, of course.  The upside was she finally understood and figured the guy out, he was gone for good.

Somewhere along the line this woman, with minimal help from government grants (today no help because of budget cuts), with no help from either of the father’s of her children, started back to school.  She pieced together on-line school to finish her bachelors and eventually was accepted into Baylor University’s doctoral program in Psychology.

She has married again, this time she has married a man even I approve of, like it matters.  Today, this woman who so easily could have been a statistic, a single woman of four who let her life’s circumstances drive her into perpetual poverty, cares for her kids, cares for Marty, cares for her new husband, excels at academia,  does her internship at the Veteran’s Administration and even, once in a while, takes care of me.  

We have seen this young woman move from the lowest parts of life to the precipice of triumph.  She has seen us through some of our darkest days and has brought a smile and a light to us at a time it didn’t seem possible. This May she will graduate, she will be the 2nd person from my house, the 2nd person from our family to earn her doctorate from Baylor, the 2nd psychologist to come from our home. 

 It’s bittersweet for Marty and me because soon she will go, she will finish the first part of her dream.  She will show her children, she will show the world that you can rise, that you can shine, that you can reach for dreams and sometimes those dreams start to come true. 

It makes me sad to know she will leave us, just as it made me sad when our son Matt left, just as it made me cry when our daughter Erin left the house.  It makes me proud that this woman, who has been a light in our life, will move on to something bigger and better and that she will be able to be more than what her circumstances might have dictated.

We will miss her, Marty will miss her care, I will miss her smile and her conversation.  We are so very proud to have been a part of her life.