Wednesday, March 24, 2010

Long Drives...

There is a young man whom I have cared for who has ALS (Lou Gehrig's disease). It has come about that he has been living with this horrible illness for the last two years. Since that time he has continued to work until five months ago when his weakness confined him to home.
He worked as a maintenance man at the hospital, and he is a very popular and loved man, always laughing and making light of his illness.
As a result of this, his friends gather around him both at home and wherever he goes.
He is never alone.
His wife is a loving and strong woman who has faced the rapid decline in this young strong man whom she loves with grace and dignity, and I wish I could have met her before I did to see a smile on her face. As it is I met her when we consulted on him at this last admission... when the work of breathing became almost too much and he required a BiPaP machine and a PEG to maintain.
He is a proud man and is refusing intubation and the like, yet his demands to pull the last drop out of life are exhausting, to himself and his wife.
As I said, he is never alone, which means she is never alone either.
On consult we discussed hospice and how appropriate it would be for them to go home on hospice and he can be comfortable at home. They agreed and he was sent home for what we thought would be the last time.
The crowd of friends and family were there until the man and his wife were alone at home... when the lack of air (both literally and figuratively) that they felt drove them both to panic and call 911 for the return trip from home to the hospital.
She aged 10 years in that one night. The brave facade of the strong enduring wife replaced by the exhausted expression of a woman whose world has collapsed and she knows now... really, that she faces the end.
Upon our visit today, amidst the crowds of friends and family, she came to us from in back of the room and we discussed going to the in-patient hospice facility nearby.
She was tense as she thought things through until I looked out the window then at here and said... "It's a beautiful sunny day, why don't you take a ride out there to check it out... just you?"
At that she smiled and took the brochure and left the room, permitted to just be her, not "the wife", but just her.
At least for a little while.

Sunday, March 21, 2010

A Cup of Comfort...

No new revelations on this post.
I do want to announce that I am featured as the lead story in the anthology "A Cup of Comfort for Fathers", a book that has collected many stories (both poignant and funny) about fathers and their effect on the lives of their families. My Story "A few Minutes in the Shade" was written 10 years ago and details an encounter with my then 5 year old son and how wisdom does not always come from age or experience... but rather in the simple observations of a child.
This book is available on Barnes and is edited by Colleen Sell ( a wonderful and gentle soul) and is published by Adams Media.

Tuesday, March 16, 2010

A Phase in the Life: Changes... Fugues... Obsessions... Awareness... and Re-Integration

I've been away for a while.
Well, not really away like on a trip to the amazon or a stay at a monastery or something like that, but rather away from this blog and in essence away from introspection and observation of what is happening around me.
I think this happened for a few reasons that I outlined in the title.
Firstly, there have been some significant changes in my professional life (some that are ongoing as you'll see in the next few months) that go to the core of my professional identity. I work now for the most part for Catholic Health System of Long Island as Regional Director of Palliative Care.
This is a good thing.
However, it shakes my perception of myself as the rugged individualist who has a big practice on his own... an island unto himself so to speak.
This "sea change" in my professional career caused what I call a professional "Fugue State" in which for the last six to seven months I have gone about my day seeing patients and functioning, but feeling like a hamster in a wheel... running running and running and going nowhere. Granted I have been helping people all along and making those observations, but not truly thinking about anything other than keeping my nose to the grindstone and staying ahead of "the List".
Which brings me to obsessions... don't snicker, it isn't deep and dark (and by the way don't act like you all don't get them on occasion), yet I became in a minor way obsessed with a video game. An online diversion that took me, for the time I played it, away from feeling a part of the corporate machine and once again in control of myself in the form of my pixel self.
Where does awareness come from?
If I knew that I would set up a series of lectures and sell books on it... but I don't, I just know that to me awareness came as a thought in the night. I was awakened by the nurses on the Palliative unit and told that one of my long time Palliative outpatients was transitioning to the actively dying state. I handled it as he and I had agreed on and lay back to try and get to sleep. I then became aware of what I was doing... and why I was doing it. I became aware of all the patients who have trusted me to make their lives safer and more comfortable over the years... and of my own parents heading in that direction.
Suffice it to say, awareness has returned and now begins the process of re-integration... restoring "Me" to where I am... and how I care for my patients. Integrating my little obsessions into a healthy life, and most of all remembering to stop... look around... actually see what is in front of me... and enjoy the journey that I have the privilege of sharing with everyone in my life and with all of you.