I have been evicted...

photo credit http://philip.greenspun.com

We recently had a very dear patient at the Hospice House. One of those old men you look at and still see the charm of his boyhood, twinkling eyes and affection right there on the surface.
He had been an artist, but as he became more ill he was no longer able to hold his pens and lost one of his great joys. In his last month, he wrote this poem:

I Have been Evicted

   Evicted from My House

The House of Life

The House I Loved so much

For so long and forever will.

Lately it has been going down

  The Shell is breaking

The Structure is cracking

   showing its Age!

I Have been Evicted

  From My House of Life!

The landlord sent me Notice

Friendly but Unmistakable

   Time has been set.

Bring Your House in Order.

   You have to Leave.

Take your Memory with you

   And take Solace

It has been a lovely comfortable House

   But time is Up.

See you all at the new Place

  "The Heavenly Chit Chat"

-JB 5/29/2011

By the time I met him, his house was quite decrepit and plans to move out were well underway. He was still there, though, that boyish twinkle. And so very kind and sweet and always trying to lighten the mood and elicit a laugh. He found comfort in having someone just sit with him and hold his hand. Often he would bring the guest's hand to his lips for a gentle kiss.
From what I was able to learn about him from his friends and his medical records, he had every reason not to be sweet and kind. He had reasons to be bitter, angry, dysfunctional. Instead of choosing to rail against the world that had done him wrong, though, he chose to find beauty and joy in it. Even in the small details of flowers on his table, or birds and squirrels in his yard.
The room he was in will always be his room in my mind, the room where the final eviction occurred, and he set off to "The Heavenly Chit Chat."

One lucky man!

Have you ever wondered what it would be like to be married to a physician? Or, more specifically, to a palliative care physician? Okay, so probably not.
For a moment just try and imagine what it would be like to live with someone who deals with end of life and/or death just about every single day.
"Depressing" might be what you first imagine.
"Weird goth-type person" is what you also might imagine.
I like to think I am neither of those.
I am actually quite certain I am not goth. Although, I am pale...
But I digress.
In general, I would say that the palliative care providers that I know are a generally happy lot. Most seem to have a special sort of joie de vive (yes, I'm busting some french here, tres chic) that may come from seeing daily how fragile and short life is, and that we must enjoy it every chance we have; or maybe its because of this outlook on life that palliative care was an attractive field. Which was the chicken and which the egg, I don't feel qualified to say.  So, overall, I don't think living with me is very depressing. For the most part.
Until, while sitting on our front porch, enjoying a late afternoon cocktail while our children nap, I say to you, "So, let's say you were in a horrible wreck and I had to make decisions about what kind of treatment to pursue or not pursue. What are your feelings about what you want form life?"

And the light hearted afternoon comes to a screeching halt.

Why do I feel compelled to break out this line of questioning on a lovely Saturday afternoon, on Father's Day weekend nonetheless? Maybe because over this past year I have seen far too many young people with young families, young spouses experience a tragedy. Either a freak accident or a horrific illness or even if something they brought upon themselves - young people not far in age or life circumstances from myself who ended up hanging by a thread, and with that thread rapidly fraying. I have seen how quickly life can go from perfect to nightmarish. Husbands and wives now making decisions with immense consequences. Left scrambling to figure out what their partner would want.
Honestly, before Saturday, I thought I had a good sense of what my husband would want. Of what kind of quality of life he would find acceptable and what kind he would find intolerable. Of what his values are and what he finds to be worth living for.
Thank goodness we had our talk, though.
While I don't feel compelled to share the details or outcome of this conversation, what I will say is that I am so happy that we had the chance to share our feelings and wishes with each other. Not only do I feel like I would be able to do right by him if her were seriously ill or injured, but I feel like I have a whole new understanding of him and, frankly,  new depth of love for him that I didn't know was possible.
So, hard as it may be, and depressing as it may sound to do, if you are in a relationship and haven't had "the talk," I'd encourage you to do so. Yes, it is so sad to even try and imagine my husband incapacitated and me having to speak for him - but, by having this talk with each other I can truly say that we have enhanced our life together.
And, at the end of the day, that's what matters most.

So Long, Farewell.

Leaving work at the end of the day can be a very strange experience when you work with the dying. You never know if you are saying a casual, friendly "goodbye" or THE "goodbye." The one that means forever. It can put a lot of pressure on what is usually a pretty simple part of daily conversation.
Usually, when there is a chance the patient won't still be alive in the morning,  they aren't in a state to really seem to care if I am in their room at the end of the workday, much less what I say to them as I leave it. If the patient is able to tell me goodbye, chances are, I'll see him in the morning.  Then one day a patient told me goodbye, and I was pretty sure there was a good chance that he actually wouldn't  still be my patient the next day.
I had this feeling because, as I left his room, telling him I hoped his night went better than last night (he'd been anxious and had trouble sleeping and became fairly confused as the night went on by the time of my visit, his thinking was quite clear). He glanced toward me, where I was standing by his door, and stated, plainly, "Oh, I think it will be better. I'm probably going to die tonight, so I doubt I'll see you in the morning."
He didn't say it with drama, or as if he were waiting for some kind of "oh, don't be silly, you're going to be fine" response. He said it as if it were fact. Simple, known, fact.
The sky is blue.
I will die tonight.
You will not see me tomorrow.
It caught me off guard, and made me smile toward this sweet, gently man, who had often said things like, "this isn't living, this is existing" and "I never thought it would end this way for me."
He had become so sad by the fact that he couldn't just will himself to die and that it actually was taking his physical body so long to shut down and release him, that I truly hoped he was right. It was as if this were his last remaining wish, to simply die. To die before he could feel himself growing any weaker, any less vital, less mentally sharp.
The perfect ending to this story would be that I walked into work the next day and was told that the patient had died. That he had fallen asleep peacefully, with his wife at his bedside sleeping on the pull out bed in the room, and that, as they held hands, he had calmly and peacefully taken is last breath.
I'd almost convinced myself that this would be the actual ending.
So when I walked into work the next day, and saw that he was still alive, I felt sad. I wanted the perfect ending, the poetic outcome.
Instead, there were six more days and nights that this man existed through (he definitely wouldn't have liked it to be called "living"). He hardly had the energy to speak, and for his final few days was in a state of being unresponsive to his family. His lovely wife, to whom he had been married for over 50 years, was there with him the whole time. The morning before he died, I walked into his room and she was sitting next to him, holding his hand, crying quietly. His time was clearly drawing close, as was their life together.
Finally, later that afternoon, he did die. His wife and son were there with him. It wasn't the perfect ending he'd wanted, but he was comfortable and peaceful and surrounded by love. And I was happy for him to finally get what he'd wanted.