Tuesday, October 16, 2012

Fossils and feelings.


Do you know where you're going to?
Do you like the things that life is showing you?
Where are you going to?
Do you know?

Do you get what you're hoping for?

When you look behind you
there's no open door
What are you hoping for?
Do you know?

Once we were standing still in time

Chasing the fantasies
That filled our minds

You know how I loved you

But my spirit was free
Laughing at the questions
That you once asked of me

Now looking back at all we've planned

We let so many dreams
Just slip through our hands

Why must we wait so long

Before we'll see
How sad the answers
To those questions can be?

~ from the Theme of Mahogany 

_____________________________________________

I saw this man the other day who was losing his memory. He was in that stage where he remembered enough to know that what he didn't remember was a problem. Showers running for hours because he forgot he'd turned it on. Locked out of the house because the front door closed behind him and he couldn't remember the garage door code.

"I lost my wallet last week," he told me while looking down at his hands. "All my ID and my social security card, too. It's getting bad."

"I'm sorry," I said. Because I was.

"I know it was some place just under my nose. But for the life of me I just couldn't figure out where I had put it. To anybody else, it wouldn't have been lost. For me, though, all it takes is a minute for me to lose the idea."

"I know that's super frustrating. Have you been taking the medications?"

"Yeah. I don't see that much difference but I do take them. My sister make sure that I do."

"Okay." I leaned onto the desk and waited to see what he wanted to talk about next. Mostly because I knew that even though his memory was shaky, his insight wasn't. He knew that developing premature onset Alzheimer's dementia was a crappy hand to have been dealt.

We both knew. There was no secret that, although there were medications and behavioral interventions that could potentially slow things down, that this thing could and would progress. We'd both heard of the research underway and the advances that scientists were fighting to make. But as of now? We knew. Both of us had seen it play out before--him with his own mother who slipped away right before his eyes and whose mind floated high into the air like a feather on top of a gust of wind. The kind that occasionally swirls close enough for you to grab but then--just like that--goes skyward and out of grasp.

I'd seen it, too. Once in a great aunt and many more times with my own patients. Vacant stares and disconnected thoughts interrupted by tiny flickers of who was once there. Here for a moment then--zoom--gone in a flash.

But this? This was different. I had never really witnessed this kind of dementia in evolution. Most of the time I showed up after the memories had long since gone. This patient was vacillating between everything and nothing. Something eerily similar to those times that you feel a dentist's tools because you weren't numbed enough. Then all you can do is brace yourself in fear of breaking through the novacaine again.

And a life filled with breakthrough pain and bracing yourself kind of sucks. So yeah. That's where he was. Exactly where he was.

I was glad to be seeing him for the third time with the resident doctor in clinic. He'd specifically asked to see "the lady doctor with the short hair cut that saw me last time" and, according to my resident, even pointed me out when I passed by the room.

"Can I ask you a question?" he finally asked.

"Sure, sir."

"Okay, so what does it mean if you can remember stuff from a long time ago but then you can't even remember whether or not you put some toast down in a toaster?"

I did my best to explain the difference between short term and long term memory. My resident chimed in and the patient nodded in acknowledgement that he understood. I think he did.

"I don't remember nothing. Unless it happened twenty plus years ago, I just don't remember nothing in no detail no matter how hard I try." He slumped his shoulders and went back to staring at his hands. "It took me a minute to get myself back on track as to why I was even here. See? I don't remember nothing."

I could tell that all of this was breaking his heart. Not even sixty years old and struggling with his memories in a way that was unusual for his age. All of the reversible causes had been explored and also ruled out. We were stuck with the diagnosis of exclusion: progressive dementia.

I wished I could do something to make him better. Or at least encourage him. Then something popped into my mind. He had remembered something.

Me.

"Sir? You know? You do remember some things. You do." I smiled at him and tried to get him to look up. "It's been five whole months since we saw you last. And you know what? You remembered me."

His eyes met mine and some part of them looked hopeful, somewhat lifted. Then they traced a jagged line over my shoulder and down to the lapel of my white coat where my badge was clipped. He mouthed my name and then said it aloud. "Kimberly Manning. Miss Kimberly Manning. I did remember you. But not your name. And I hate that 'cause when I just seen your ID tag and read the name your name . . . .didn't even ring a bell."

There was the most complex look on his face. This restrained wince connected to a pain so deep that exaggerated expressions of pain wouldn't suffice; it was hard to explain. Something about the complexity of it hurt me, too.

I reached out and touched his hand. My fingers and palm over his weathered knuckles, welcomed by his closing grasp. I tightened my own in response and in concert with my words. "But still. You remembered who I was and asked to see me. You did remember something. You did and that counts." His complicated wince now replaced by an antalgic smile. Now I could feel his hand shaking from squeezing mine so tightly. "So thank you for remembering me today. I'm so glad you did."

"You are?"

"I am. I really, really am." 

He paused for a moment, loosening the vice on my hand. I could see him sifting through his mind for the right words. He found them. "Miss Manning? I remembered . . . I mostly remembered how you looked at me and talked to me."

I felt my breath hitch. Now I was the one holding his hand in a vice grip. And the one shaking.

He shrugged his shoulders. "That's something I always hold on to. How somebody treat me and how I feel when I deal with certain people. Good or bad, that part always stick. No matter what."

I was so, so glad for that moment. To be right there, right then with my hand on his hand listening to this good word. Damn, I was.

And that was pretty much how the visit ended. We refilled his medication and made sure he had an appointment in the Memory Clinic. And that was about it.

Yeah.

Honestly? I'm not really sure why I even felt the need to tell this story. But something about that last thing he told me made me take pause. I knew that I needed to stick that one on a mental post-it note for later. Something tells me that I'll need to return to those words again and again. And you know? I couldn't even tell Harry this entire story without crying. (I'm sure he cried, too--just on the inside.)

Seriously though. . . .cognitive impairment and memory loss sucks. Royally and unequivocally, it sucks. But how amazing is it that the way we treat people and how they feel when dealing with us happens to be one of the few things that fossilizes in their minds? How awesome is that?

Wait.

The way we treat people and how they feel when dealing with us happens to be one of the few things that fossilizes in their minds. . . .

Whoa.

***
Welcome to Tuesday, my friends. What are people remembering about you?

Now playing on my mental iPod. . . .from one of the first "grown up" movies I ever saw--Mahogany with Miss Diana Ross and Mr. Billy Dee "Colt 45" Williams himself. Love this song . . . I ask myself those questions all the time.

27 comments:

  1. This post is killing me. Cried again. I knew before he told you that part of why he remembered you was because it was YOU.

    Cried because my 55 year old cousin can't figure out the toaster, but remembers more from our childhoods than we do.

    Cried because it's such an awful, cruel way to go, especially that part before they're all the way gone and they know how terrible this is, how much worse it's going to get. Cried because Grandma popped in and out just like you described. Cried because we're not sure if it's Pick's or Alzheimer's. It's looking more like Pick's, which is what Grandma had, but both are shitty options to ponder.

    But you're right about the feelings fossilizing, and that made me smile through the tears.

    ReplyDelete
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    1. Guess what, Mel? I added that reaction button "> or = one tear" just for you. :)

      I appreciate you telling me about your family. This gives me another perspective and yet another reminder of why dementia and memory loss is cruel and painful to watch.

      Hugs to you.

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  2. I love how you are still so moved about your positive impact on patients. Especially the relatable moments that don't directly deal with medical part of things. It really speaks to what a good heart and spirit you have.

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    1. You know what, Stacy? I'm moved that you haven't gotten tired of reading about it. I am still moved. I'm in awe of what people live through and how resilient human beings can be. I am honored to sit at their feet and learn from them. They teach me so, so much.

      Thank you for reading and for your kind words. Hope the family is well.

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  3. Yes. I have seen this and it's awful. I always think of a very old electrical wire that mostly fails but for some reason, occasionally works and then a spark of memory occurs but then the connection is broken again.
    You are a strong place in that wire for this man.
    And isn't that something? Yes. It is.

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    1. Sister Moon, I love that idea. Thank you.

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  4. My grandma was like this in her early 60s. When she died at 66, she had no idea about anything. I mostly remember her confusion as I was very young when she died. My dad doesn't have the greatest memory. I know he's afraid that will also happen to him. We all are.

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    1. I think some part of all of us carry that fear, Jameil. It's some scary stuff.

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  5. This is very depressing. It makes me lonely just by reading it. Buts its something that makes us stronger and learn some important lessons.
    stables

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  6. Several years ago I went to lunch with five of my former fifth grade students who were then juniors in college. I discovered that the things they remembered fondly were the ordinary things that I did in class - how I made them laugh, how I stood up for someone, how I (secretly, I thought) paid for someone's field trip - those kinds of things, most of which I hardly remembered. I thought they would remember my lessons and the things I taught them, but I was surprised to learn differently that day. I think your last sentence speaks volumes. That's a good word there!

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    1. Ain't though, Tounces? I thought you'd appreciate that.

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  7. My Mom has Alzheimer's. Thanks for reminding me that she may not remember who I am, but she remembers how I treat her.

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    1. I'm sorry about your mom. I am comforted knowing that my patient's good word has traveled beyond that clinic room.

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  8. We always remember the way people make us feel. That stays after everything else is gone. You and your patient are proof of it.

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  9. I just love you. Thanks for sharing this with us. You are a dear person.

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    1. Awww SB! You know I love this syrupy sweet side of you. You are a dear one to me, too. You know that, though.

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  10. WOW! I can't even imagine what it feels like to be THAT person. Thanks for painting such a clear picture for us. I have family members on my father's side of the family that have suffered from dementia and other forms of memory loss. Visiting with them before their death(s) has been hard but I am so grateful for the memories I have of my time with them. I am actually thinking about documenting them in a book to share with future generations.

    -Karen
    www.yourstylistkaren.com

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    1. Thanks so much for your words and for reading.

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  11. I am a seminary student, second career kind of gal. I work in a ministry that serves the homeless, unemployed and underemployed. Reading this blog reminded me that even on my days of feeling hopeless to help, perhaps just by caring for our clients made their lives just a little bit better. I can't solve all of the problems that they have, but I can listen and I can give them a sandwich and some water, so their tummies don't growl and a soft chair to sit in while we spin our tales. I refer all of our seminary chaplaincy interns to your blog because you are truly a minister of medicine and chaplains need to know that they aren't alone in the ministry when they are at our local hospitals. Blessings.

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    1. Wow, Jill. That's a HUGE compliment. And yes, I do see working at Grady Hospital as a ministry. Like all ministries you receive far more than you give. Wouldn't you agree?

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  12. I have been carrying this post around in my heart for days now. My father died five years ago from complications of dementia. He was this larger-than-life character all my life--a mountain climber who climbed Mt. McKinley twice,an incredible skier who enjoyed the sport well into his seventies, a voracious reader, a wonderful father to his four daughters and his son. The last four years of his life we lost him piece by piece.My heart broke a little more each time I went to visit them in Idaho at my brother's. My son, Ryan, was going to school out there so he helped whenever he could. One night when my brother was away on business my mom called me in Atlanta in tears because my dad would not do anything she said and she was exhausted and fed up. I was crying because there was nothing I could do. I called Ryan who was studying for exams and he drove over and that boy of mine, that sweet boy, got his grandfather undressed and into his pajamas and into bed.Daddy asked him to hold his hand while he fell asleep. Ryan laid down on the floor next to his bed and held Daddy's hand until he slept. I hope Daddy knew I was there with him, willing all of my broken-hearted love through Ryan and straight into his heart.
    Your tenderness with your patient is a testament to the heart you have for medicine and I give thanks for you...
    Love, Coach B

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    1. So glad I got to hug your neck last week. I miss you, my friend. Thank you for sharing this testimony with us. So beautiful.

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  13. Kindness isn't really that difficult to show.  A little effort.  A glance.  A smile.  Being friendly to someone who needs it - whether they know it or not.   A small drop in a vast ocean.  But with HUGE ripples.  It impacts the recipient.  And the giver.  It brings light and joy to their life and purpose and contentment and joy to yours.

    I stumbled on to your site quite by accident.  Looking for something else that I don't even remember now.  And I saw this article and it hit home. 

    I've always gone the route of kindness - many times by deliberate choice.  People have said they were drawn to me for that.  But it brought back to mind my grandmother the day she died.  She'd been sick for over a year.  We got the call to come over because it wouldn't be long. 

    I got there and she was breathing so shallowly and so few breaths a minute we weren't sure she was still alive.  Everyone was positive she wouldn't regain consciousness.  I stood there at her bedside while the rest of the family were talking in the kitchen.

    Suddenly she opened her eyes.  I saw fear. Pain. Mostly fear.  Until she saw me.  I spoke and smiled as best I could though tears streamed down my face.  I held her hand.  Her face lit up and she smiled and said my name.  I told her I loved her.  She replied the same.  She closed her eyes with that smile and thanked me for looking after her.  And she went to her final peaceful sleep.

    It hurt so bad seeing her go.  My heart felt like it was dropped into a blender and turned on frappe.  But it wasn't about me.  It was about her.  When she woke up for that moment she NEEDED to see a familiar friendly face.  She NEEDED someone holding her hand.  She NEEDED that smile of kindness to help her have peace. 

    I do not regret being there for her.  The knowledge that I helped her overshadows the pain even remembering that moment brings up for me.  It was worth it.  It was the right thing to do.  The consequences of kindness, no matter what else they may be, will never be regret.  Never.

    Your story reminded me of my story. The ripples of your kindness are still being felt even to strangers you've never met. Thank you.

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"Tell me something good. . . tell me that you like it, yeah." ~ Chaka Khan

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