A story to teach us

Breakfast In Bed

A story to teach us how one might be there for another

I arrived to such beauty and order in the dining room here the tall, iron hospital bed stood with Ray barely raising the sheet. "This room is 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 be guided with love, dignity and respect of him and what he wished, as the "Man of the house.  She had accepted that Ray was dying and nothing could be done to "save" him.  I heard that under her 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.

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 are going in the right direction. 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.

Step by step

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."

You Are the Gift

Nothing special to do

There is nothing special you need to do or be. Simply be at the bedside in a way that feels most comfortable for you.

As you are there in the quietness you will begin to feel something you want to say or do. Or you will have a sense nothing is needed or wanted but your presence. Usually you will find your own shy way to be there. It may be active or not.

When I come into the room even when there may be little response I speak in low tones, bend near with my head in alignment with theirs and speak as though they hear everything I say. There is a good chance they do hear and understand. I go on that assumption and it helps me to feel I am reaching past the illness all the way inside to where they may be frightened and feel abandoned.

Suggestions

Be there
bringing the gift of ones self
Reassurance of gentle touch

Reevaluation of priorities,
what is normally correct thing
may change

Get and receive support
think of one’s ‘needs
have a list

There is no right  way
we may make errors
this is an intense time

Guiding words
respect, dignity, beauty

What to say and do to reassure and encourage

 Ideas on how to be at the bedside.

First and most important

Trust your heart and your feelings for what is needed

Say what you need to say

Know there is a good chance you are heard

Let the person know he or she is loved, you will be there and they are safe

Say what you think would help when there is fear or the other too ill to respond

Comfort with words and gentle touch

Suggestions of What to Say

Who you are

How you happened to come to visit

What you would like to do, such as draw a chair near, put the railing down with the nurse's permission, or "I will sit by the window, puff up my pillow and sleep here with you throughout the night." “I am leaving for a moment. Will be right back.”

When you will leave. "I do not know for how long I will be here." "For an hour." "I will not leave without telling you."

Your feelings ,"I am a little afraid but it means so much to be there with you.” “I am very happy to be here". “Forgive me if I am a little clumsy".

Key Guidelines:

Assume you are heard.

Speak with great sensitivity and respect.

With touch, words or just your presence, let them know they are loved and safe.

Push yourself to be brave, but do not do anything that is not in keeping with who you are.



Please share with me your experiences, your questions and your thoughts that would help you or inspire others.

How would you like to die?

Tell your doctor in a letter

 http://scopeblog.stanford.edu/2015/04/22/how-would-you-like-to-die-tell-your-doctor-in-a-letter/

Please cut and paste above link. Important information from Standford University. 

Once you have written your letter, I suggest the following. 

Perhaps the best way to help the MD know what you want is to make appt, tell the office manager you would like to speak with him/her privately, "What is the best time to make my appt so we have a little time to talk?". On conclusion of your visit hand him the letter. Ask him the best place to keep it so she will have it when the time comes. Every once in awhile you might wish to update it.

Make copies. Along with Durable Power of Attorney. When hospitalized talk with Social Worker, ask best place to keep it. At appropriate time have it taped to front of your chart. When you are home, have it on inside of front door or frig door. Have a friend, spouse on each hospitalization who kindly, "easy does it", goes through the same process of informing and guiding. 

If when you are critically ill or nearing the "end" have them diplomatically stay connected with staff so if things go the wrong way they can correct. It is a presence, legally backed up, that makes this work.

My experience in many years in hospitals and working with the dying, this needs to be an on going process. There will always be new interns, residents, social workers, hospice workers, agencies, etc etc that do not know what you want. And you must make sure your friend, spouse has notarized, authorized permission to be your legal "voice". Have the letter notarized. Have it scanned and in your chart, up front, with each hospitalization. 

I have been this through my ex husband's dying. Our grown daughter out of town. Your friend/spouse needs to be known, a friendly presence, with power to guide the people who will take over your care.

 

At the moment of death

Now precious, private time

Sometimes it is difficult to know when the actual death comes. It is OK to just be there with love. Easy. "No where to go, nothing to do," just there with the loss, the respect, your feelings which may not be all that clear to you.

At some point you will want to write down the time of death when it seemed the person you love is no longer in the body before you.

I feel this is now your time. It is precious. Please do not feel you must make any calls. Except to those you love who you wish to be there. Or dear friends of the one who has died.  Once you call professionals, hospice, mortuary, and such there will be many decisions, much to do, many questions. You may never be able to get back to this almost sacred time.

Now private. There maybe more you wish to say. Linger, share, tell stories as loved ones together, play music, sing, laugh, cry, touch, soothe, or wash the hand you know. Some wash the body, cover it with silk, linen, flowers.

Ask those who you wish to come, to come soon and bring food, flowers, music, and instruments. Perhaps with an object, photos for a sacred spot in the room, candles, and if you do not have them, low lights. Or just invite them to come.

Take all the time you all need. Be bold. Protect this private time. Then when your are ready call the agency, the doctor, hospice, those who will need to know. But not before you are ready.

Once you  leave the bedside, the room, there will be much to do. Sorrow and shock of others to be attended to. Planning.  Things asked of you.

Out of your control, the waiting world may press hard and you leave this time of the heart. And never quite be there again in this way.

This is how I come to the bedside

To comfort and care in last hours of life

 

I know exactly how to walk into the room when it is closed

when nurses say, “Nothing more to do, she is dying.

You might as well go home.”

I know how to come without knowing a thing

            Humble

            Simply, with so much love

Come into the room, into the sacred time.

Walk with soft feet, to the bedside, lean gently

to the form, barely raises the sheet 

            Your breath near.

Say, “I am here

so grateful to come to you,” as each word

is heard by one hungry for you to be close

but perhaps too ill to respond.

Words you share of who you are,

how long to be there, and to pull a chair

very close, intimate, in the utterances of

your heart.  

And smile because this simple time and

complex, sorrowful, dear time  profound

but just time waiting, wondering, and perhaps

            more waiting

            never really knowing.

But one need not be alone

but talked through it.

“I am here. May I touch your hand?

Put it under yours to let you know I care?”

“Your life made such a difference.”

Say the things you love, value, appreciate.

Sing or hum a gentle song.

            Read a loved poem.

As you are there to let the one

know he or she is safe.


Please let me know your thoughts