Traumatized by an oil change

Things were going well. 

A few minor bobbles but we got through it. 
I was feeling empowered by my success
And I got cocky.

I know! I’ll make an oil change appointment,
And instead of waiting there, Bruce and I will wheel over to Marcos for lunch.
What could go wrong?

A gust of wind,
A toppled hat,
The bleat of a pneumatic impact wrench
Terror

I shield him with my arms and body, whispering calming words into his hair. 
His arms have the strength of flight, as his hands grip and clutch to fight
Eyes wild, body trembling yet frozen, incomprehensible babbling, both he and I.

A kind passerby approaches
Do you need some help?
My tears fall as my mind searches for an answer
I wouldn’t know what to ask for, what is this help of which you speak?

He’s having a panic attack, I say. And the kind stranger fades away.
I can’t move forward or back. I don’t know what to do besides wait for a break in the onslaught.

Another man approaches to inquire.
What can you do to help me? See that white car? It needs an oil change quickly or we will have to leave.
Would you like to come back at a better time?
There is no better time. There will never be a better time. Nothing will ever be better.

The distraction allows me to get Bruce back inside of the shop. 
I’m fighting tears. 
He looks at me. My kind and gentle Bruce looks at me,
And he scoffs.
He shakes his head and laughs at me.

Like a bully, he sees my pain and it fills him with derision. 
Is this what he really is? Or is this the disease.
Because if it is the disease, it is the devil.

I have a new medication to try. It is for just such an occasion.
I can’t get it under his tongue, so I just put it into his mouth.
He didn’t object, it dissolved instantly.
Now we wait.

The bones in my hands are aching from his grasp,
But slowly, gradually, his body releases the tension that has made his heart like stone.
I just want to go home. He just wants to go home. 

Oil change done, I apologize for the drama
No need to apologize, another kind person

I cry all the way home in the car, but Bruce has calmed and is looking disinterestedly out the window. 
Maybe this new medication is the answer I’ve been waiting for. Hope creeps in…

Home. He’s feeling dizzy. He acts a little drunk, but he’s happy and pleasant. 
I help him inside and up to bed. 
I bring food, he eats, and thankfully,
Sleeps

With the resiliance of an idiot, I bring him downstairs with me to make dinner.
He won’t stay alone. I must make food.

I get things going and he needs the toilet.
He is still tipsy and has no idea what to do, so I sit him down, 
I turn my back to shut off the air fryer, 
It was only a second…

A scream!
He’s falling backwards out of the bathroom.
The world slows down as I see his face hit the door frame,
His eye glasses burst apart and clatter to the floor
He lands on his butt and is yelling in pain and fright.

I drop by his side and see that the temple piece of his glasses 
has lodged into his flesh just above his right eye.
Macabre to see that thing bob as it sticks straight out from his face!

Automatically I grab it and yank. 
I feel a fleshy resistance as it come out and blood flows.
I am trapped there, holding a paper towel against his head to stop the blood.
My mind is split in two, one is hysterical, the other is the last vestiges of my brain working desperately to know what to do. 
It’s all a blur. 

I call his PCP, who is our neighbor, to see if he is at home. He is not. I hang up.
Siri, call Kim

OMG what do I do? We can not go back to that horrible ER.
I dump my first aid bag, gause and bandaids scatter 
Why can’t I find what I need? What do I need?

I see blood on the floor.
What else? His arm has a gouged flap that’s bleeding.
I paw through the rubble and find a bandage to slap on. 
I try to get a cushion beneath him but he yells when I try to move him. 
He keeps touching his back. I’m handling this all wrong.

I see the phone lying on the floor, with an open call to Kim
I had forgotten, I grab the phone and say something hysterical.
She’s calling the ambulance.
I give up.

I sit there beside him, a puddle really. 
I’m useless.
I’m incoherant.
My bones have melted
My brain is running out my nose.
All I can do is cry…

His doctor has come
I didn’t ask him to come.
He tells me that I took him away from scheduled minor surgical procedures…
WTAF
Yeah, that’s what I need.
You throw guilt on top of this dumpster fire. What a guy.
I did NOT ask you to come.

The ambulance is on the way.

He asks me questions. 
My mouth moved and sound came out.
Calm down, he says.
Fuck you, my mind responds.
I’m sorry for interrupting you, I didn’t mean for you to come.
It’s ok. 
It is not ok, it will never be ok

He tells the paramedics what I’ve told him (I guess)
They come in and look him over, then whisk him off into the ambulance.
I grab the hospital go bag and get in.

I cry and wail all the way to the ER. 
I don't want to go there.
The nurses are horrible.
They roll their eyes,
They don’t come when the machines need attention,
They don’t help
They are rough and dispassionate. 
Maybe a little lazy. 

Bruce now feels pretty good
He’s holding court there in the back of the ambulance
Entertaining the paramedic as he works
I’m frantic

Inside the ER, we wait.
I’m trying to act like an adult,
but I’m done with that really.
It gets me nowhere.

I tell them that we just want to go home,
We don’t want to BE here!
The nurses are rude, present company excepted (I say to the orderly/nurse standing in front of me)

He is kind.

I hover and flutter over Bruce, 
He gets cold so easily,
I have to keep him covered
I heave with emotion and he tells me that I look terrible.

In the nicest kind of way.

I mean, he said it as plain as day, 
as if he could speak at will.
His face was loving and compassionate
He rubbed my arm, petted my hair, hugged me
He told me that he was fine and that I didn’t need to worry.
He is the only person in this world who is allowed to tell me
TO CALM DOWN!

Why is MY Bruce only here when I’m distraught? 
Does it bring him to the surface?
Is there some part of him that is still able to come to my rescue?
How I wish he could stay…

Our reunion was interrupted by a very nice doctor. 
He listened.
He responded correctly.
He was agreeable
He was validating 
He was reassuring
I calmed

He probed Bruce’s laceration
I showed him the offending temple piece
He confirmed a hole of corresponding shape, and suggested stitches.
No foreign body, maybe we’ll glue it.

Kim arrived, and my hysterics dried up completely.
She showed up for me. Again. And it gave me a base to work from.
Steady

All this time, Bruce has needed to pee. 
The urine that began this little tableau was still reluctant to show.
They gave me a bottle and pulled the curtain. 
Bruce was shaky, impatient, growing angry
He began to spiral, oh no, here it comes!

I tried taking him to the toilet. He yelled and clenched his fists
He tried to hit me.
He would not use the toilet.

Back in the cubicle,
Struggling to get Bruce into the bed,
Our white knight arrived and lifted Bruce bodily and plunked him down on the bed.
So there!

Blood draw, 
Bruce is beginning to fade
CT of the head and abdomen
No problem lying still, he’s practically comatose now.
All of the fight has left him.

We wait
Bruce dozed
He was in and out, but no longer violent.
Kim listened as I poured it all out. 

We are not staying overnight.
I have no idea how much time has passed
The doctor arrives with the discharge papers,
I load Bruce onto the wheelchair and we get outta Dodge.

Home
We eat sandwiches
We go to bed. 
I just needed an oil change.

Worst Day Yet

This morning has been a shocking first, and the worst so far. Bruce had a bad night, waking all hours, worried about everything. Usually I can tell him stories and he calms, but it did not seem to be working. It seemed like any mention of his family made him sad. At about 6:30 am, he saw a picture of his siblings on the photo frame by his bed. It was the one with all the siblings together while on a family outing to a small airport.

He flew into a howling rage. Bruce has only barely raised his voice in the years I've known him. I tried talking softly and telling him I love him, but he looked at me with an expression I’ve never seen before other than on a snarling guard dog as it leapt at the fence. He clenched his hands into fists and shook them, gritting his teeth, saying something about family.

He walked around our room, searching for something. He mumbled that he didn’t know where I put it, but couldn’t tell me what it was. He kept saying the F word and walking around, waving his arms at all the things in our room. He asked about the photos on our bedroom walls. He didn’t know where he was, and just kept telling me to get away from him.

More than once during this episode, fear flickered through my mind. I have never before considered that he would harm me. I took several steps back when he turned those hard eyes on me. I could totally imagine him now, sweeping everything off a countertop, or backhanding me. But he did not. He held it inside and trembled with rage.

I have no idea how I held it together, but I just kept searching in my mind for advice I’ve read for what to do in this situation.

Meet him where he is.

I gave him space. I tried to interest him in vow renewal videos. Didn't work, tried a couple of other happy memories, gave up. Pictures of his family enraged him anew. He clenched so hard, then looked like he was crying in anguish. I couldn’t reach him, and the look of derision in his eyes nearly broke me.

Bruce has lost his three older brothers in the past couple of years. He never flinched at the news of their deaths. He never really acknowledged it. Maybe his mind has just allowed that realization, and all the anguish that losing his older siblings was supposed to have caused, is now coming crashing down on him.

Trying for a diversion, I opened the shades. He came closer and looked outside. I asked if he wanted to put on pants and go outside. He took the pants, but struggled with them. I offered help and he spat “Don’t touch me!”.

He was blaming me for something, but I could not understand what it was, so I just apologized. I told him that I was so sorry, and that I didn’t mean to do it, and to please tell me how I could make it up to him. He just shook his head and scoffed. Every time I told him I love him, he shook his head like it was BS.

He finally allowed me to help with the pants, and I started walking toward the stairs. He paced the bedroom some more, snarling F*%k! I waited. He shuffled toward the stairs, but would not take my hand for support. About halfway down, he grudgingly accepted my hand. He found his shoes and put them on. I gave him a hat, and took his walker out the back door. He followed.

He stood on the sidewalk looking around at the courtyard as if seeing it for the first time. He accepted the walker handles and I helped guide him along the sidewalk. I could see that his anger was beginning to thaw. We stopped in the clubhouse to look out at the Caribbean, but he wasn’t ready to sit down like we usually do. He was still struggling with something, but his glances at me were now more full of resignation than anger.

I followed his lead as we went back out into the courtyard, this time in the shade, with a slight breeze. It is truly a beautiful day. We approached the path to our condo and he seemed to know where to go. He was ready to go back inside.

Once inside, he was still restless, so I asked him if he wanted to go out the front door, and he agreed, actually showing interest. He stopped right outside the front door and raised his face to look around him, and he said

“I should be happy.”

We walked along on the sidewalk, more quickly than usual, and without the walker. We made it all the way to the gate before I suggested that it was beginning to be hot, so maybe we should walk in the shade. He asked me something, gesturing to the area around us. Having no idea what he was asking, I explained that this was our condo property, and next door there were others. I pointed back toward the beach and told him that way was the Sea, to which he replied “I know”.

He began to walk back along the sidewalk to our door. Once inside, he drifted while I made our breakfast. During that time, his anger seemed to melt away, and while he no longer seemed angry, confused or frightened, he was more mystified. He was once again dependent upon me for his every move.

The stairs confused him, but we made it back up to bed with our breakfast tray. He agreeably crawled into bed and seemed to enjoy the apple oatmeal we shared. He took his pills, and finished his water. I asked him if he needed to go to the toilet, and he agreed. But once there, he didn’t need to go. He was just agreeable to try if I suggested it.

Back in bed, he closed his eyes and dozed for about ten minutes. Now he is awake, and is calm and sweet like nothing ever happened. Today was the first time I have experienced any real doubt that I could handle this. Every moment of every day is an invitation to chaos. I have zero control, or advanced knowledge of what will happen in the next hour, or the the one after that. Nights alternate between sleeping one night, and the next he's awake and despondent while I try to ease his mind. I'm heartbroken. I'm scared. I'm so weary, yet desperately afraid that this signals the beginning of the end stages. Trying to be thankful for the support of some wonderful ladies I have met in a caregiver support group, and keeping my shit together are about all I can do.

Some Permanence In My Life

Our lives have become so small. Sometimes I wake and lay there quietly, because I'm just not ready to get up and go to work. I need just a few more minutes to think my own thoughts before I find out if we are having a good day or a not-so-good day. 

Yesterday at around 5:30 am, Bruce got up to use the bathroom. I noticed that his shuffling steps seemed heavier than usual, and his face wore an expression I have never seen. I asked him how he was feeling. He raised his eyes to me and mumbled “She’s dead”. Who is dead, I asked, and he dropped his eyes again as I heard him whisper... Tammy. 

Everything inside my body seemed to harden into stone in that moment. 

Sufferers of FTD lose their ability to feel empathy, but that does not mean that they can’t be sad. The profound sadness emanating from my sweet husband almost killed me in that moment, which would make him correct, I guess. 

Nothing can prepare a wife for this. 

I took him back to bed, and I held his face in my hands as I snuggled by his side, and I told him "I'm alive!" I am Tammy, and I love him, and will never leave him. I continued to reassure him, telling him about our wedding day, in great detail, until his breathing took on the even rhythm of sleep. 

Still snuggled at his side, I thought about our lives together, and how happy he has made me.  How am I going to make it through this roller coaster of emotion, loneliness and isolation. 

The relentless darkness attempts to overtake me and pull me under, 

threatening my promise to always be here for him. 

Maybe an hour later, he woke up showing no trace of his earlier sadness. Ok, good day it is!! We take a short walk to the Clubhouse and sit in chairs in the breezeway, watching the colors of the Caribbean change and shift. We spot a sailboat on the horizon, either heading for Jamaica, or perhaps coming into our Bay to escape the wind and waves for a night or two. 

I close my eyes and feel the breeze on my face. 

I breathe in the familiar scent of the sea, and my heart seizes up again. 

Memories threaten to break the carefully constructed dam I have built against them. 

Those days are gone, and I can’t contemplate them right now. 

Maybe someday. 

I long for some consistency in my life. Something permanent. Something that will forever be the same that my mind can hold onto when I need grounding. 

I almost got a tattoo once, many years ago. I am glad that I didn’t. I was going to get a hummingbird. I was into hummingbirds back then. I like them still, but not enough to have one on my… er, um… body forever. 

Bruce is my other half. He is my Libra scale-mate. I am one side, and he is the other, and we are balanced. Together, our individual talents combined, making it possible for us to achieve our dream. That’s why we chose the Libra Scales as the graphic for our cruising home. 

Dos Libras.  

We were strong, adventurous and resilient.

Now we drift through the days like ghosts, 

We are trapped between our past life, and what is to come.  

The scales begin to tip as I carry more of the weight of Us. 

I feel helpless, as I experience with him, 

The growing distortion of his wavering mind. 

We shift and slide like a reflection of what we once were, 

As we slowly dissipate into the waters of the Caribbean. 

I know he is still with me. I know that he will always be with me. He’s just different, as am I. We had a good run. We tossed off the dock lines, and lived the dream as so few ever do. We dropped anchor for the last time here in our Bay, and home is where you drop the anchor. But home is also where Bruce is. He is my heart’s anchor. 

He is my strength and my permanence. 

I know that the ripples will eventually  disappear, but 

We will always be Dos Libras. 

And this, I will wear on my skin. 

Forever.