The lessons we learn

This past week I was sitting with a patient who has approximately three months to live. I often think what my own reaction would be to that prognosis, but that's another story. A year or so ago, this man was a tall, strong, athletic 80 year old playing golf every day. He now shuffles his feet, can only walk across the room and his rounded shoulders make it hard to believe he really is 6 feet tall. He loves to talk about golf or watch it on television but sadly he has no other interests. He and his wife have a lovely in-law suite in his daughter's house. His daughter has two teenagers so the house is always lively. We have asked him if he would like some videos or books on tape. He politely refused. I asked if he like the History Channel or Animal Planet or game shows. "Not really" he replied. No doubt he is depressed as he spends most of the day just sitting or sleeping. It is painful for his family to watch him this way.

Another gentleman I see each week has the same prognosis, maybe three months. He lives alone in a studio apartment that reminds me of a college dorm room. It has a computer up and running at all times, a ham radio, a flat screen television and books galore. He talks about how full his life is and how wonderful his family is. They visit daily, but most of the day he is alone. He can't walk at all, but does have one of those electric wheelchairs that take him out into the hall, per chance to meet a neighbor. Each week he shows me something on the computer, usually an email from one of his pen pals in Canada or Norway. He gives me the local police and fire updates as they come in. The phrases "not enough hours in the day" or "life is too short" take on a whole new meaning when I leave there.

I'm not sure why I love this kind of work so much. Friends think it strange that I do. Maybe it does have to do with the fact that my dad died at age 36 from cancer. He died in the hospital, not at home with his family. He was on the fourth floor. I remember it was the fourth floor because children were not allowed to visit so my mom would bring us out on the lawn and we could wave up to him. I was only six years old. As I got older I realized that my grieving was not so much for my loss but for his. What was he thinking when looking down at his three daughters and knowing he would never go home again? So, coincidentally, I help terminally ill folks die at home. They all have their own personal journey. I'm just privileged to be a small part of it.

Year End Review

Last week my 88 year old patient asked me if I was married or divorced. He's a frisky, sometimes angry, frustrated guy. Being bed bound will do that to you. He has long white hair and a scruffy beard. He tells me stories of racing cars, and sailing 40 foot yachts.
I told him that I was divorced but living with a wonderful, kind man. He threw his head back, grinning and locking eyes with me in a sort of "Rosemary's baby" effect and said, " OH shacking up are you?" I sputtered some denials and respectable explanations only to be interrupted with, " that's the only way to go, I remember when......."
So, this is the one year anniversary of full time living together. It seems easy. We just melded without any blips. We laugh about how fighting or arguing is so yesterday and if this is living in sin then maybe at our age it's venial sin.

Conor and Sarah are here this week from Colorado. It's almost their two year anniversary and the impetus of this blog. They inspire us. GO CELTICS !!!!

Post Holidays

From the time my son was six years old he quickly learned that he could make me and his two sisters laugh hysterically with childish antics. Over the years he developed rehearsed routines, such as flinging himself down a flight of stairs (carpeted) with a crashing thump at the end. He would then jump up, as soon as he hit the floor, shouting "I'm OK, ..I'm OK !

I have not posted an entry on my blog since the holidays began. December is a hard month for my patients. Losing someone you love or being diagnosed with a terminal illness over the holidays is traumatic to say the least. So I often feel as though I have fallen down the stairs and jumped back up around the second week in January. I'm OK..I'm OK !

As the New Year begins I take inventory on my life. Count the blessings, curse the misfortunes. Then register the misfortunes as minor, two fender benders, a broken dryer, and a dead goldfish. I feel OK about the tally.

I was reading Nelson Mandela's inspirational speech "Our Deepest Fear" which led me to some of the poems and essays of "The essential Rumi" and then Marianne Williamson's book "A Return to Love."

This new year finds me taking the full plunge, bag and baggage, back into love. Being a clinician of the emotional and physical sciences can be a detriment. Too much introspective research. But being a romantic and eternal optimist often balances things out. I just finished deleting a whole paragraph on the studies of social involvements and intimacy. The physiological results of connectedness, attachment and isolation, from actually a very interesting book, "Intimate Terrorism" Thank me later for the deletion.

From the more positive and definitely more mature perspective please enjoy a few verses from "The Invitation" taken from Marianne Williamson's book.

The Invitation

It doesn't interest me what you do for a living.
I want to know what you ache for,
And if you dare to dream of meeting your heart's longing.

It doesn't interest me what planets are squaring your moon.
I want to know if you have touched the center of your own sorrow.
If you have been opened by life's betrayals,
or have become shriveled and closed from fear of further pain.

I want to know if you can sit with pain,
mine or your own,
without moving to hide it or fade it or fix it.

I want to know if you can be with joy,
mine or your own.
If you can dance with wildness and let the ecstasy fill you
to the tips of your fingers and toes,
without cautioning us to be careful, be realistic, or to remember the
limitations of being human.

I want to know if you can live with failure
yours or mine
and still stand on the edge of a lake and shout to the silver of the full moon
"Yes!"

I want to know if you will stand
in the center of the fire with me
and not shrink back.

It doesn't interest me where or what or with whom you have studied.
I want to know what sustains you from the inside,
when all else falls away.

I want to know if you can be alone
with yourself
and if you truly like the company you keep
in the empty moments.

(Oriah Mountain Dreamer)

Tis the season to be Jolly ???

My typical workday consists of helping people die, and two evenings a week mediating divorces and child custody. Sounding jolly so far?? I became a Licensed Mental Health Counselor several years into already having a career as a Hospice RN. Initially that goal was to incorporate my passion for bereavement counseling, coping with illness, loss of loved one, etc. It seems that over the years my practice (bread and butter) grew into loss of relationship. Today I sat in the Marshalls parking lot, talking on the phone to one of my clients for almost an hour. My cell phone is used for making and breaking counseling appointments. It is rarely abused so I answer most calls when possible. In this case it was the aggrieved husband carping his case against the alleged, unfaithful wife. When you spend 30 minutes on the phone with one, you must inform the other .. . the rules of "couples counseling." So when this call ends I will have to make another.

It does not escape me that the Christmas music is playing off in the distance. Tree lights twinkle in my rear view mirror. Shoppers bustling in and out of cars around me. I glance at my watch feeling guilty that I need to end this call. I'm not in my office. I'm not going to bill for this time. I have to return that pretty silver/black skirt. Then, as he keeps talking I become more focused. His pain becomes more palpable. He is in his car outside his workplace, taking time off to get some perspective and hold his emotions together. He wants his family back. He wants to be just one of the many carefree shoppers. We talk a little more. I try to provide some support and we set up an appointment.

As I enter the mall, I wonder if I have paid my share of emotional dues over the years. Is that the twelve years of Catholic school making me take personal inventory? I run down the list; yes, significant, devastating pain with a divorce. Yes, debilitating pain with major reconstructive skin cancer surgeries. And of course, the worst, the phone call that comes telling you your child was hit by a car while riding her bike. A drunk driver who left 90 feet of skid marks before hitting her. She is not conscious. The ambulance is taking her to the hospital, I can meet them there. She is stabilized with one surgery and then transported to Boston for another. She now lives with seven pins and four plates in her jaw, but she is beautiful and healthy. I am happy, even joyous in this holiday season. I rationalize that maybe that is what gives me the strength and even desire to do this work. My heart goes out to those who are in pain, emotional or physical. The season does have added pressures to be jolly... or is it just a nudge to help us recognize and count some of our blessings?

Coastal Living

After the last post so many friends have expressed an interest in Newport Rhode Island for a mid-winter get away. It was fabulous. Just wish we could have stayed longer. Some of the smaller lobster and clam shacks are closed for the season but everything else is open and eager to have the winter tourists. The famous Cliff Walk below.



The downtown waterfront is lively and festive, offering many cozy pubs with music, as well as, sumptuous meals in upscale restaurants like "The Moorings"

Below is Thames St. with limitless shopping. Many benches and coffee shops along the way for those who can't keep up !!!

WATERBOY ????

Newport in December

December 2nd in Newport Rhode Island was not cold enough to deter numerous surfers. Christmas decorations were beautifully displayed from the quaint boutiques downtown to the magnificent, historic mansions and Belcourt Castle. Santa arrived on the waterfront with a luminous flotilla of boats parading brightly colored lights. Even Frosty the snowman worked the wharf. Truly a winter wonderland. I just worry that I didn't get close enough to Santa to ask him to "define good" !!!

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...