Trails End --

I started writing this story in 2008.  My plan was to keep everybody updated on what was going on with Marty.  Many of her friends, our friends, were not aware of what was happening so I thought I would keep everyone informed.

Like so many things the blog evolved and became my guide and a way for me to get my own head around what was happening in our life, what was happening to us.

I wanted a record of our journey for me, for our kids and for our grand-kids.  It sort of kept me sane as I was able to process the joys and heartbreak of caring for my bride after the strokes.  Writing became a catharsis and a way for me to understand myself as Marty and I walked this rather bizarre trail.

The lessons I have learned doing this are endless and all of the things Marty taught me, some without me even knowing it (sneaky woman), are an ingrained part of my soul and I will always carry those lessons with me and I hope they have made me a better human being

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As I let this blog thing (though I prefer journal, it somehow sounds more sophisticated and God knows I’m at the apex of sophistication) die a natural death there are a couple of very basic learnings I want to leave with you. 

 

We all need to get our head around the idea that we will all of us will ultimately be care givers or care receivers in this life.  It is inevitable.  Society has developed so many ways to keep people alive that it is a near certainty we will all somehow experience the pain and joy of taking care of or being taken care of, it’s simply truth.  

Please know, you can and will do it.  It’s not heroic, it’s not amazing, it’s not selfless, it’s inevitable.  Humans have a remarkable way of evolving and adapting, history exists because humans adapted.  You can do it when the time comes, you will figure it out when the time comes, you will make the changes when the time comes and, trust me on this, you will find overwhelming anxiety and pain, and you will find amazing joy and grace.  It is just part of life and baby, somewhere in your inner self, you will find a way to make it work.  That’s what humans do.

I have always loved my bride.  There were times, before and after the strokes, I didn’t like her very much, but in my head and in my heart, I knew, I always loved Marty.  She really was one of my most interesting people, she really was one of the smartest people I knew.  She was, to quote our daughter, fierce.  

She was passionate, she was spontaneous, she had a fiery temper, and she loved like no other.  She respected neither rules nor boundaries, well maybe she sometimes respected them, mostly she simply disregarded them.  She would get in your business and be running it within 30 minutes of knowing you and the disturbing thing  was often she knew better than you how to run things.

She was one of kind, just like we all are, blessed with the grace of a loving God, we are all but children of a God who, regardless of what we do or where we go or what we believe, God’s grace will always embrace us.  That is what my friend Bob Moon taught me a long time ago in a very different life.

 

So, (so is kind a lazy way to start a sentence, oh well.) So, I found myself sitting on the next to the top step of our deck overlooking Richland Chambers Reservoir.  I sat there so I could lean my old back up against a step and really relax.  It was about 6:30 p.m. and the sun was bright and leaking through the oak trees, I could feel the warmth on the left side of my face. 

 

It wasn’t too hot as there was a light breeze gently coming off the lake with just a small tinge of cool. The lake was flat, it was quiet except for the airplane 30,000 feet above going to Houston.  I watched Sharon walking around the yard (Sharon is a dog by the way).  She eventually got tired of sniffing and made her over to sit beside me.  I closed my eyes, felt the Texas sun and the gentle breeze and listened to the quiet as I reached my hand and rested it on Sharon. 

If you need me, I think that’s where I’ll be.

Stripping Down

Two weeks ago I went to Dallas to see number one Grandson play soccer and then I took him to Toys R Us to shop for his birthday.  Marty didn’t go, Marty couldn’t go, it was a fast trip and there was really no way to get her wheelchair to the soccer field.  I don’t know if she really wanted to go, but I went alone wondering if I should have found a way to accommodate her.

Last week we took furniture to our daughter in Dallas in Marty’s new van.  I was amazed at how much stuff we got in the van.  Marty and I were having dinner and I asked her if she wanted to go and she said yes.  I then talked about trying to get all of that stuff in the van and how tight it would be.  Marty looked at me and said, “Do you have room for me?”

 

Of course I will always make room for her, that’s exactly what I told her, but that's not always the simple truth.

Sometimes to survive you have to simplify, you have to find the bare essentials and strip life down to the basics.  That’s what we had to do in our lives to cope with Marty’s stroke, that’s where I took us, thinking, believing we needed to focus inward to survive.

With Marty, when we came home, it was all about survival, hers and mine. Simply staying alive and mentally stable took all of our energy and efforts and even then we sometimes came up short.

 Recovery from a stroke takes a tremendous amount of energy and focus.  Everything is hard and exhausting.  Thinking, talking, eating, and breathing, basic living skills all require enormous amounts of concentration, calories, and focus.  The extras in life like relationships, work and play are shoved to the back of the closet until you can move out of survival mode.  (See Maslow’s hierarchy of needs….we start with survival)

There are a lot of problems with this whole stripping down thing, like,  you get really tired of looking at yourself naked, you see way too many of your own flaws.  You end up pushing too much in the closet, you get too internal and too focused on just living and you forget that the world outside your sphere still exists and still matters. 

You know, or you think the stripping down is temporary, but it soon becomes an integral part of your life that seems permanent.  You know in the back of your brain that sooner or later you have to start adding elements of life back in and that can be scary, a little daunting.   Reincorporating yourself back into the ebb and flow of life is hard.

The truth is if you step out of the main stream, eventually you get left behind; other people evolve and move on without you.  It only makes sense because the stream, the river is still running, with or without you.  The boat really does leave you where you stepped off and you don’t get the benefit of gently floating down a creek and seeing the same sights as the rest of the world as a leveling experience, you have to get back on where everybody else already is and that is frightening.

And, bringing Marty up to speed adds a real level of complexity and difficulty.  I want her to be part of life, I want her to be able to re engage, but the truth is, on so many levels, she simply can’t, she doesn’t have the physical, mental or emotional bandwidth to do it and I find myself, too often, leaving her sitting on the bank and watching as I start putting my toes back in the water.

It makes me feel horribly guilty.

I will always have room for her, I will leave stuff on the side of the road to make room for her, I hate that she even asked the question, “Do you have room for me?” 

It’s one of those care giving issues.  It’s an issue of caring for yourself and making sure that the cared for are present, are literally cared for, are noticed and are part of the flow of life. 

That’s not always easy, in fact, it’s very rarely easy, but nobody said it would be.  They did say it would be worth it, for once they were right.

Poop or Chocolate?

There it was, poop, on my hand.  I reached for the first thing I could find, a tissue, at tissue on the cabinet, a used tissue, and without thinking wiped away the poop leaving a residue of snot on my hand. 

This is care giving my friends.

The best part about this, and truly, truly, there aren’t many best parts of stuff like this, it doesn’t really bother me anymore.  I no longer dry heave, I no longer shudder and recoil, I just wipe off the dirt with more dirt.  Its life and frankly with warm water and soap you can clean any part of your body. 

You can really tell you are settling into your role with all of this if you can stomach the nasty stuff, then tell the story and laugh about it.  As Marty sat in her chair and I told her, “I just cleaned my poopy hands with your snot,” she busted out laughing.

Caring for someone who is unable to care for themselves is going to be dirty.  People do stuff that is smelly and, at times, a little revolting, it’s just a fact of life when you are dealing with people.   If you haven’t had to get dirty with the person you love, if you haven’t gotten on the ground and smelled the sometimes acrid odor of life just wait, you will.  Caring for someone requires you smell the both the roses and the fertilizer.

Love is not easy.  We watch the rom-coms at the movies and it’s always the same formula, fall in love, things are great, go through an ugly event in life, come back together as the music swells.  In real life you occasionally have to pick up dirty underwear or shave in the company of someone sitting on the toilet.  It’s real life, we gotta do some stuff.

I did some stuff with our kids, I cleaned up puke, I wiped noses and butts.   I don’t remember having to fish poop out of the bath but I’ve seen my son do it.  It’s not something anyone likes, it’s something you get to brag about later and something you get to laugh at your son about when his children make a mess in the tub. 

Here’s the thing (I actually say, “here’s the thing” in real life when I’m going to make a particularly keen point) caring for someone you love, caring for someone who is sick or broken in some way is hard and is messy.  Heck, the truth is loving someone, really loving someone, is hard and messy, it just is and don’t let anyone try to convince you otherwise.  Being in love, loving is hard dirty work.

It’s also incredibly rewarding and life sustaining.  I’ve said it more times than you care to read or hear but caring for Marty is purely and simply the best and most decent thing I have ever done in my 62 years.  I feel more important, more valuable, more loved by my love than ever and that my friend is the greatest reward there is.

I’m reminded of the scene in the movie Baby Momma where the veteran parent looks at the brown spot on her child, wipes it with her finger and asks her child, “Is this poop or chocolate?” as the mother to be looks on horrified that someone would so casually touch what is potentially poop.  The Mom then touches her fouled finger to her tongue and pronounces, “Chocolate.”  Cracked me up.

That’s the way it is, only sometimes it really is poop, which is okay because it washes off.

2016.....Looks Like We Made It

Ours is not an easy life.

It is a life full of anxiety, fear, isolation, loneliness, intrusion, boredom, exhaustion, anger, abject sadness and grief.  It is a life that is physically and emotionally draining that can suck the happiness and satisfaction out of your soul.  It is a faith breaking questioning experience.

I wouldn’t wish this existence on anyone.

I know how we make it; I don’t know how others do it.  People in other countries, people in other states, people in other cities have strokes.  I don’t know how they survive.

We survive, we thrive, we live life because of our support system.  We have a good life because of that support system.  I don’t know how people do this alone.

We have four remarkable women who care for Marty and I every day.  Nykkie, Erica, Renee and La Shonda are an omnipresent part of our life.  They are with us every day, every moment, high and low.  These women make our daily lives better; I don’t know how people do this alone.

Our care givers, our family, parents, children, grandchildren, siblings have been remarkable in their patience and love.  Our health care support has been remarkable in their care, availability and love.  When you add it up, and I did, weird guy that I am, there are well over 50 people, 50 loving, amazing people, 50 family, friends, clergy, doctors, nurses, administrators who care for Marty, who care for me, who support us in our daily lives.  

How many people get to say they have 50 care givers?

I don’t know how others do it; I don’t get how they make it without the help.  Without each and every one of those people who care for Marty, who care for me, who make me exercise, who feed Marty, who play golf, who listen to her breathe, who get us into see Great and Wise, who offer comfort, who offer wisdom, who offer love our hard life would not be a life at all.

Because we have people who draw blood who wipe chins who offer God’s blessings who watch over us who pray for us our life, our life is an actual living breathing miracle.

If you ever ask yourself the question, “How does this amazing Marty’sHusband do it?”  Well, first you have a warped sense of amazing and second it’s a matter of support, it is all of the people who do it, it’s the family, the friends, the care givers who do it, that’s how you make a life livable in difficult circumstances.

On this first day of a new year I want to say thank you.  I want to say thank you to Nykkie, Erica, Renee and La Shonda.  I want to say thank you to Matt, Erin, Lyle, Sarah, Noah, Lily, Emma and little Lucy.  I want to say thank you to Larry Sr. and Bettye Lou and Martha, Jeb, John, Liz, Ken, Kate, Lee, Will, Jerry, Luan, Kelly, Bill and Berkley.  I want to say thank you to Great and Wise, Melissa, Jessica, Angie, Annetta, Patsy, Pey, Maydee, Keith, Leslie, Ann, Steve, Dee Dee, Gretchen, Robbie, Skip, Pete, Dean, Sheryl, Tom,  Dick, Sue, Elizabeth, John, Andrew, Leah, David, Amanda, Jackie, Bob, Aemelia, Joe and the countless others who love us, who pray for us, who think of us and who in so many ways support us.

Our life, at times, is full of really bad stuff.  I spend time afraid, unrelentingly anxious, isolated and angry. 

 My personal faith does not allow me to believe God put us here to test us, to make us feel this way, I don’t think God was leading us to this spot.  I do believe, my faith demands that we understand that God has put all of you in our lives to give us faith and show us love.

Our life at all times is full of love and I got news for you, love really does make all of that other stuff manageable.  

Thank you for making a difficult life better, thank you for caring for my bride, thank you for caring for me.

Naked in the Street

I was a basket case.  I knew I was, my kids knew I was, my family knew I was and the care givers knew I was.  I wasn’t going nuts; I was there, at the station, ringing the bell that says, “I’m NUTS”.

In June of 2006 I was walking a fine line between being a care giver and needing a care giver, or at least someone to keep me from running down the street naked with a blood pressure cuff. 

Those were the days of multiple illnesses, multiple hospitalizations and me learning how to live our new life.  I was obsessed with Marty and how she was feeling and if she was sick and if she was about to die, it never left my brain.  I would constantly take Marty’s blood pressure to see how low it was and then take mine to see how high it was.  Like I said, I was nuts.

I personally did nothing for it to get better except learn how to do my new job better.  Mostly it got better because Marty got better and we found some first class caregivers, you know the ones, the ones that kept me from running down the street naked with the blood pressure cuff.  I didn’t do that because I was afraid it would scare them off and freak out my neighbors.

Regaining some sanity didn’t happen overnight, there was never a road to Damascus kind of epiphany, it was more like a Darwinian evolution, it happened over a period of time and one day I saw myself in the mirror and I didn’t look quiet as crazy, I didn’t have the look of someone who would freak out the neighbors prancing naked in the street.

I learned to roll a little bit more with the punches, I learned to quit planning Marty’s funeral at every cough, I learned to trust our care givers and our doctors and mostly, Marty got better because she got stronger and we got better at providing quality care.  I keep saying that because it was the silver bullet, the number of infections was drastically reduced.  

All of this leads me to state unequivocally that we adapt, we learn, we change, we grow, we evolve.  I was not built for what I do today; Marty never ever had the potential of being a good patient.  

I do what I do, provide care for my bride, really well; it’s not something that was ever part of my native skill set.  I learned. Marty was head strong, always knew a better way and was a non-compliant rule-breaking patient; she was, in short, a patient that could try patience.  She is not that person today, she is accepting of her new normal, she is agreeable and likes a routine, she learned, she adapted.

Trust me on this; if I can make this kind of change, if Marty can make this kind of change, you can make this kind of change too.  You simply have to put your head down and take a step, the next step.  That’s exactly what I did several years ago instead of running down Sandalwood Drive naked.  I accepted, I adapted, I kept my clothes on, most of the time.

Let’s face it, people live longer, overcome more trauma, more life altering illness and spend more time recovering at home.  You will, if you are lucky, get to help care for someone at home or in the hospital or in a facility.  You will adapt, you will learn, you will figure it out and move forward and take care of that love one.  You will do it because that’s what we do for those we love.

 

When we left St. Catherine’s care facility nine years ago I was a basket case and worried about how I would learn to do what needed to be done.  I obsessed about taking care of Marty and told myself continuously I could not do it.  When one of the physical therapists was showing me how to move Marty to help bathe her I told her my secret, “I don’t know how to do this.”  She looked at me and said, “You will figure it out.”

She was right, it wasn’t easy, it still isn’t, I still, every now and then get the urge to abandon all decorum, drop my trousers and run screaming down the street.  And then I see myself in the mirror and realize I am well past the age when that made any good sense at all.