Sunday, August 21, 2011

Mother Theresa

Mother Theresa went to be there for people dying on the streets of Calcutta. She picked them up and took them to her home with other nuns so they could die with dignity.
We can do that in our own special way. Let us visit together and learn how we can comfort in the face of insurmountable odds. To bring comfort when there is hopelessness and isolation.
A cab driver in NYC asked what I did for a living and when I told him, he was amazed, "In my country when people are ill we stay with them until they are well, and if they are dying we do the same thing, we would never leave anyone who is ill or dying. And if they die we stay with the body until it is buried. He was from a country in Africa. I was told similar things from people of Mexico. What are your thoughts?

What to do?

Knock gently on the door, come easy to  edge of the bed, lean near, address by first name, share yours and  why you are there. If you are not known tell how you happen to come. 
I often say, "I am a little afraid to be here, but I wanted to be here no matter what". 
Be there with great respect of the person you know to be there inside.  Look around the room, are there flowers to be freshened, comfortable lighting vs a glaring over head light?. Is there a chair you can easily move to be adjacent to the bedside? If not perhaps request one from the staff. It is important you be comfortable to have a comfortable "conversation".  
Sometimes I sit on the arm rest to be just about the right height to be in a relatively normal position for interchange
  • Look for subtle clues of body language to judge how the person is responding to your touch or words, such as change in breathing rate, a sigh, slight wincing of a small muscle, adjustment of fingers, fluttering of eye lashes, squeezing lids of eyes. They may give clue on how you are doing. 
  • Get comfortable in chair, if you wish to just be near.  Be ready to move chair if nurse comes in and needs access to bed.
  • Share approximately how long you will be there. 
  • You may want to hum or sing. Be close and with great dearness and sensitivity.
  • Play an instrument
Even though this person before you does not look like themselves, know that your parent, child, friend is there inside but perhaps too ill to respond but they will be feel cared about, relieved, feel loved and reassured. Or they feel a need for silence and just a loving silent presence. Elisabeth Kuebler-Ross, MD, the wonderful doctor of the heart on the frontier of changing how we are with the dying, said the greatest gift you can give, is just to be there with the gift of yourself. 
If you want to tidy the room or change things, such as moving a chair, changing the water in the vase of flowers or leaving the room, tell the person, "Your beautiful yellow roses are looking a little droopy, I will add  some fresh water."
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Monday, August 8, 2011

"Listening" to the message of the situation.

In the story, "Breakfast in Bed"of this blog,  I had said on seeing such beauty and order in the room, that the room was filled with life. Jean corrected me and said, "This is love, this room is filled with love, Cassandra". This firm statement told me Jean's goal for her husband and that care should about love, dignity and respect of him and what he wished,  and that she had accepted that Ray was dying and nothing could be done to "save" him. At some level I heard the message under the words so when he wanted breakfast after being semiconscious for days, I should let go of my nurse self that feared he would choke to death and die. And be there in support of what she knew of her husband and in support of her in wanting to grant him this wish as the "man of the house".

This is a big risk on our part as caregivers. Every thing in our world is to respond to someone in dire distress with a "do something" response. It is a natural  to fear we might cause irretrievable harm. But I think we must rethink this through. His wife, Jean, guided me and reassured me. She made it clear all action in that room was to be guided by love.

Being there in the last hours of life is an act of great love, courage, yielding. We never know what to do in such a hopeless situation, ever, but I have found the situation tells me what to do. And even then I worry I may be wrong. But in the moment we will know we going in the right direction. Or years later we will look back and be encouraged we not only did the best we could, but what we gave helped to create a gentle, even beautiful passing. And what we learned will help us again to reach out to another.

What do I mean by the situation will tell me what to do. I will not know what to do when I open the door to be there for another. But if I knock and go in and feel the helplessness, wanting to run, not wanting to be there and stay and just note what do I feel, see or even know from the past that will help me to know, just be there, nothing to do, nothing to say, just the gift of myself. Then at some point I will do something that feels right. Perhaps it is just quietly bringing  a chair close or leaning near and saying who I am and why I want to be there.

Saturday, July 16, 2011

A story to teach us

Breakfast In Bed
by Cassandra Christenson

I get out of the car, grab my blood pressure cuff and sack lunch and head for the door. There is a moment I want to run home, puff up my pillow and go to sleep. But the door opens quicker than my resistance.

“I’m Patrick, Come on in.”

He has a Rock Hudson smile. Looks like he should be wearing a Letterman sweater and chunky class ring.

I leave fear at the door, step into my nurse role and follow to Ray’s room. It is not a bedroom, probably never was, but a room off the kitchen, open to the California sun and bird song in the garden. In my minds eye I could see an older couple, though neither would have thought themselves so, sharing morning coffee and the New York Times, then later Scrabble and intimate talk into the night.

Now it is a hospital bed exactly in the middle of the room looking out to the private garden. Ray does not open his eyes to the tiny lights glittering about the garden wall with ferns curling in moist dark air and fountain lifting up and falling back like water pebbles into a marble dish. The summer night is warm with the double glass doors open to the fragrance of night bloomers and hillside sage.

Ray’s wife leans heavy into a chair that had once been elegant, spring green and velvety. The chair and the woman’s shoulders sag ever so slightly. Her body tells me she has little time or interest to eat. The bed rail is down, the chair tight against the iron bed enabling her to be close with her husband.

The lighting is soft on Ray’s world, an afghan folded at the end of the bed and a small curly dog sleeping on the smooth sheet. In the far corner there is a crystal vase of sunshine yellow roses mixed with sprigs of baby’s breath.

“There is so much life in this room,” I breathe out quickly.

Ray does not stir.

Mrs. Levine corrects me, “That is love, Cassandra, it is love.”

She tells me to call her Jean.

My eyes follow her arm on the narrow bed, Jean’s palm down on the bedding as she supports her husband’s hand on the back of hers. A gentle way for him to know she is there and feel her love. I feel a quivery flutter in my chest seeing this woman of the heart helping to shoulder her husband’s burden. Jean holds the light, gentles his spirit and helps ready him for his leaving. I can almost see the land of the stars above.

I lean near and note Ray’s heart taps blood close to the surface of the sunken part of his temple, the hard edge of bone at the boundary. A bag hangs under the bed. Not enough red clear liquid to measure. A hand knitted cashmere cap slips a little too loose to his eye brows.

There is none of usual hospital equipment, syringes, bottles of saline or ripped open plastic wrappings. Mounds of linen gone, both clean and folded, and the dirty.

Patrick takes Jean’s place and we go to the room across the front of the house, brocade drawn over windows, a couch of icy blue velvet, chairs, stripped silk. There are no pillows. I have a feeling even the paintings are dust free.

Jean sits erect, barely supported by the stout chair. I am grateful to sit down. She tells me of her husband’s Washington days, 6am to near midnight. She talks but her mouth is protective, the sound and breath of her speech barely escaping.

“With my husband’s desperate diagnosis we had to return home. ”

She continues about the years in DC and of his friend.

“Ray’s best friend was the Minority Whip in the House.”

I know who she speaks of, died a couple of weeks ago, a long time survivor of politics and powerful presence in Congress. The death shocked Washington.

Jean looks to the bare floor surrounding the oriental rug, then with a certain kind of brightness,

“Such a sudden death. I had a quick thought he had gone on ahead, to help Ray in his passing. ”

There is much she has to say but the inevitability of sleep presses into the conversation. But she continues on about the team she’s organized. There is the cook, housekeeper and we, nurses. Patrick oversees everything, is a listening ear and occasionally sleeps. Sleep is not a part of any ones’ life here. Except for Ray who has not stirred for several days.

The following night Jean dozes in the chair, sometimes she puts her head down next his. His breath now heavier, rhythmic. Around 3 he stirs. I raise the head of his bed a little more to relieve his back and enable breath to come easier. Patrick hears us and comes out. Ray jolts awake, looks to me, then to Jean and in a not so sound asleep voice says,

“I want breakfast.”

This non responsive man who hasn’t even moaned for 2 days, has been without food or water for a longer time, now with eyes wide open he repeats,

“I want breakfast.”

Patrick is firm but with tenderness,

“It is not safe for him to eat, he might choke.”

They look to me, the new nurse on the night shift. They wait. I am here as an “expert”. A Registered Nurse who does not respond. Within the quiet place of myself, I have a private conversation within myself, “Patrick is right but it is not a bad way to go with eggs and bacon and happiness with the taste and smell of toast and jam.” “Heaven forbid that I say such a thing. And as a professional, responsible.”

I quick glance at the fountain in the garden splashing in the marble bowl.

The thoughts continue to flash in micro seconds about the realities of this time of life, “The body does not need food or even water. It is shutting down. Not able to process food, water or even ice chips. ” I muse how families worry but it is the way of the body when it can no longer can support life.

The words hang out in my brain with memories along with conflicting considerations, when Jean says with the same force she had used the night before about the room being full of love,

“If the man of the house wants breakfast he shall have it.”
The cook is awakened, frying pan brought to the fire, eggs cracked, bacon fried to crispy edges, orange juice poured and sweet butter spread down into warm toast and cut into triangles. Small amounts of each are arranged on a dessert plate of bone china. The cook pours several swallows of very hot coffee into a translucent tea cup. I think of sweet tenderness as Jean places the breakfast on a silver tray, adds a pressed linen napkin and a rose bud and takes it to her husband. She puts it on the lap table before him. He looks down then up to Jean, his eyes spark blue, the twinkle she has always loved. With a small spoon, roses on the handle, she takes several bits of crumpled bacon, mashes it into the scant portion of scrambled eggs, puts it to his waiting mouth, and almost like a baby bird he takes it in, closes his mouth and chews, or rather mouths it for what seems like a very long time. We three stand close and beam like happy bird mothers. When he is finished a linen cloth is offered. He lets it go into the napkin and leans deeper into the pillow, looks up to Jean and smiles.

NOTE to you: This experience of Jean and Ray is a powerful experience that taught me about love and beauty, weariness and support, and how one woman redefined what could be done at the close of life. I invite you to think about them and let us come back together to "talk" about it. What moved you, helped you, gave you ideas? How did the writer let you know death was very near? What has been your experience that can teach us about how to be there? Sincerely and in support of you, Cassandra Christenson

Tuesday, June 7, 2011

My history and goal for this work

I started my work in early 80s after asking (demanding) God give me a mission. In a few months I met Carlene with home care (in days when insurance paid for round the clock RN's in home). She asked me when "time comes will you talk me through it?" I didn't know what would be helpful or if I could be there as I lived an hour away. But when she die I was there and it very special time for all of us, her family, I and Carlene.
After she died I saw how important to be there with suppport and to help for so they have ideas what can be done to help when I seems hopeless. I went on to develop educational materials for families, giving ideas on what to say and do so people not be abandoned in last hours. Later I expanded my concept of what is "family"  to include all loved ones. Husbands and lovers of gay men living and, at the time, dying with AIDS, taught me a great deal about love and being at the bedside with tenderness and care.

The next step in this journey, I literally ran into Mother Theresa in the Miami Airport. She instructed me to open my heart and serve those who were alone and loosing the fight against AIDS.

In late 80s, Marianne Williamson took me under her wing, gave me a way to begin to serve in developing program for men and women living with AIDS . She supported us in so many ways, including bringing wonderful people to help. Volunteers learned what to do, then went to the bedside 24 hours a day to be there with love and support.

Michael Weinstein of AIDS HEALTH CARE FOUNDATION provided us an office, supplies and an opportunity to serve in the hospice. We formed non profit in early 90s, Project Nightlight, and continued our work. With the help of AIDS PROJECT LOS ANGELES, Danion Brinkley, author and speaker and Cherish Birch, Vice President of Paramount Studios, we were at the bedside, expanded to several areas around US and had an extensive website to teach and support. We called our organization Project Nightlight. Lucia Capacchione, Leslie Jordan and chaplain Michael Esalun joined our Board and guided our growth.

We no longer provide service but focus on inspiring, teaching and empowering others through educational materials, talks and workshops, and book simply written of ideas, hope and stories, called a Guidance Though Death.

We are working on getting a web site back on the Internet with an opportunity for conversations enabling people to share experiences, concerns and ideas. Would you like to be involved? I would love to have input on what I am writing. I would also like another book we all write together and share what can be done to care at this most important time of life. Would you like to help with your experiences and skills?

Friday, May 6, 2011

Silence

  • After you have greeted the person, just your silent presence can be greatly reassuring.
  • Being  there with great respect and love is all that is needed.
  • Any time, listening is such a gift to another without commenting or asking questions
  • Talking can sometimes be jarring for a person who is very ill or dying.
  • Talking can sometimes, not always, keep one who is very near the end from being able to go.The end is a little like going to sleep and talking  "wakes them up" when they may need quiet to release.
  • Leave the room 10  minutes out of every hour. Say where you are going and when you will be back. Even the one who is dying may need to be alone in the silence.
I personally find it difficult to be quiet no matter the situation. Most of us want to say or do something to help or reassure. This may be an opportunity to become comfortable with silence and just being there at the bedside and not have to do anything.  May we all learn this gentle way.

Tuesday, May 3, 2011

What Not To Say

I went to see a young woman at the request of friends. She was in Intensive Care Unit. I understood she was close to the end of  her life. She appeared to be unconscious. I spoke with her as I usually do as though she could hear me, introducing myself and telling her I would be there for a short visit. There was no indication she could hear me but I always talk as though I am heard.  I bent over the railing and after spending time with her, telling her she was safe, loved, and singing softly, I carefully told her, "It might be getting close, and it is OK to go." Many times people need to hear that as one can hold on to life for a long time if they feel at some level that they are letting family down by dying.
Several months later I was told by friends who knew us both that she was furious at my visit and what I said. Right, she had recovered and lived another couple of years. She felt and rightly so, I was being heart breakingly negative, making  assumptions and that it was not my place to say that even if it were true.
I had not talked with her family and did not know her that well to have such an intimate "conversation".
What I did could have been the right thing in many other situations. It was the wrong thing with this woman.
I saw her later, deeply apologized and it was not accepted. She had every right to be angry on a number of different levels. I am grateful for her recovery. She needed encouragement in her getting well.
What this teaches me and hopefully is helpful to you:
  • Let us not make assumptions
  • This is a time for intimacy, but we must be careful  how we are there. Some pray for guidance, ask others, check it out with ones own internal self or get in touch with ones intuitive self and common sense to guide us. Or just be very perceptive to the situation, noting fluttering of the eye lashes, slight pulling away, leaning into you, slight smile or grimace to let us know are we doing or saying thing that are most helpful. .
  • Risk, tentatively, as being there for the dying and for those critically ill is a risk. We are in a scarey time, but a time we can do great good. Go slow but with courage to reassure another, talk, touch or just be there. There is a good chance afterwards you will feel unsure about whether you did or did not do the right thing. But we must try so no one need be alone in this most difficult time.
  • Forgive yourself no matter what.
  • Be grateful to yourself for you willingness to go to the bedside and do the best you can.
  • Hearing can be acute even when one is too ill to respond.  
Please leave your feedback that we may all learn from each other. Click "comments" below. Thank you.