Toady I will visit a wonderful, 64 year old woman that has been my hospice patient for over a year now. It is not the norm to be on hospice care for this length of time but ALS can be a torturously long disease, slowly causing paralysis and muscle atrophy. Over the years I have had numerous patients that have touched my life in so many ways. They have taught me much more about living, then dying. They have lived with grace and dignity as they lost their hair, endured their pain and watched their bodies deteriorate before them.
This particular woman is paralyzed from the neck down with very limited use of her facial muscles. She is non-verbal, yet speaks volumes with her eyes. She cannot do the, blink for yes/or no. She cannot move her head left or right. She can only use tears or that sparkling smile to communicate how the day is going. Most days it's the sparkling gleam with a very slight raised left eyebrow. I love those days.
Her husband is devoted and takes her out for rides in a specially equipped van. He may take her to the grocery store or even to restaurants that are truly handicap friendly with easy access and comfort. She cannot eat now. She's on a feeding tube. He still takes her to her favorite restaurants and talks to her while he has a quick bite to eat. Since she is declining and the winter is coming, this will most likely be their last Thanksgiving out. They are going to "the kids' house. It will take him hours to get her ready and more energy then he really has to get her into and out of the van. But it will happen and he will be proud. He loves to tell stories of how vibrant and funny she was, and how he remembers that she smiled easily and laughed often. He never complains about his loss and how his life has changed forever.
When I assess her today I will be looking for the usual signs. Will she be smiling with those big brown eyes or will there be tears. Her only way of letting me know how she is feeling. Oh yes, she is able to make a very soft but genuinely contagious laugh. Again, you have to be listening and looking.
Brian Andreas (http://www.storypeople.com/storypeople/Home.do) is a writer/artist who has a collection of books and prints called:
"Story people" In my house are his books and one favorite print on the wall:
He sketches with bright colors and kooky looking characters. Below is my favorite quote (without sketch) titled: "Watching for Signs"
I used to wait for a sign, she said, before I did anything. Then one night I had a dream & an angel in black tights came to me & said, you can start any time now, & then I asked is this a sign? & the angel started laughing & I woke up. Now, I think the whole world is filled with signs, but if there's no laughter, I know they're not for me.
Thanks to everyone that brings laughter and even tears to my life.