Thanks(for)giving !!!

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.
HAPPY THANKSGIVING...

November is National Hospice month

With all the wedding plans successfully fulfilled and the honeymoon couple happily back in Colorado, it seems that life really does go on. We all go back to work and carry on our normal routines. I understand that most people don't consider my kind of work routine. As a Hospice nurse I attempt to embrace my work with a balance of compassion and healthy separation, yet on a daily basis these emotions are often not equally balanced. Understanding that ebb and flow is really the key.

Yesterday was one of those early November gifts in New England. It was a sunny, warm Sunday. The kind of day in late fall that gently introduces winter. We did some yard work, walked to the beach and came home to watch football by a crackling fire. I was on-call from 2pm to 8pm and expected it to be a quiet evening. Shortly after 2pm my first call came in. It was an elderly husband concerned that his wife was having trouble breathing. I knew I could not triage that call over the phone so off I went. Upon arrival, it was evident that the patient was in congestive heart failure and if she lasted the night it would be a difficult one. As I was explaining the medication schedule to the family, the patient, a devoted mother of three grown children and adored wife of 63 years, died. I always get a feeling that the patient knows... has a sense it was going to be a long night for her family.

Her husband cried and called her baby. He kept asking if I was sure she was gone. Imagine spending 63 years married to one woman? Imagine still loving her and now losing her? What does it feel like to know you will be alone now, without her ? That balance of compassion and healthy separation hits hard. I definitely can't help the tears. I'm handed some tissues, but there is a lot to do.

I have to call the funeral home, destroy the medications, fill out a pronouncement, notify the doctor. I have to have the exact time of death, correct date, and cause of death all accurate. Have to call the medical supply company, the home health aide department and put a voice mail on the report line. Have to chart a note in the computer. Have to make sure the family is supported and coping before I leave. So much to do.

It will be time to make dinner when I get home. It's OK. It really is. My kind of work does not need to be brought home in full each day. I simply appreciate the intimate privilege I have been given. The spiritual gift of knowing that I helped someone pass from this world to another. A grateful reminder that my family and loved ones are healthy and happy. The comfort and satisfaction of knowing that tomorrow will be another day of good work.