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.

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