How I came to be interested in this time of life

 I desperately wanted to make my life count

My concern for those nearing the end of life began in early 1980s after asking (demanding) God give me a mission. In a few months I met Carlene when insurance paid for round the clock RN's in home. She asked me, "When the 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 died I was there and it very special time for all of us, her family, I and Carlene in her dying. We talked her through it as she asked. Held her, played music, sang. Let her know she was loved, safe, and she did a good job living her life. We told her when she was ready she could just let go. We would take care of things for her after she was gone. In an hour she was gone. It was with such sweetness and grace she "left".

After she died I saw how important to be there with support 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, gave me a way to begin to serve in developing program for men and women living with AIDS . She supported me 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.

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.

I wish to create a web site  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?

Silence

In silence be there with the gift of yourself.

• 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.

What Not To Say

 What Not To Say

• Let us not make assumptions that they are dying, or that it is their time to go. Or that they will get well. Let the situation guide you. Go slowly, sensitively.
• This is a time for intimacy, but we must be careful  how we are there. Some pray for inner guidance \or ask others, check it out with ones own internal self or get in touch with ones intuitive self and common sense to guide them. 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. 

My experience

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 is helpful to you in this story?

Please leave your feedback that we may all learn from each other. Click "comments" below. Thank you.

How to comfort at the edge of life

 The beginning

Who am I and what can you do through the last hours of life

These blogs come to you from my book, A Guidance Through Death. I am Cassandra Christenson, a retired Registered Nurse. I have worked for years doing hospital and home nursing learning what is needed when death is near. One of my patients, Carlene, asked me in the early 1980s, "When it gets close, will you be there and talk me through it?" Her family and I were there for her in that last hour. I learned what one woman needed in her dying and now I want to share that with you. My patients and my work continues to teach me what we all need to know when called to the bedside of a loved one.

Let us begin with the importance of your just being there, with nothing to do or say, just being close with the gift of yourself. Then you may find you wish do more. Here are some guidelines and ideas.

1. Trust your self, your open heart and intuition for what is needed and how to be there.
2. Talk even though the person's eyes do not open and seems too ill to hear or even understand. Share with him or her knowing that the life of the one ill hears. Perhaps this is true even if you do not get there in time. Spend time with the wonderful body (a wonderful body no matter how difficult it looks) that has held your loved one all those many years and talk knowing you are heard.
3. Speak with vulnerability, respect and a deep sensitivity to the person and the situation.
4. Keep sentences spare. Be close, your face in alignment with theirs. This is a time for intimacy.
5. Sometimes it is difficult leaning over a bed railing or peeking through the bars. So you may wish to talk with the staff about lowering the railing, giving the assurance you will not leave the bedside unattended with the person vulnerable for a fall. Have the call cord within your reach for when you need to leave or ask how raise and lock in the side rail for safety.
6. If the person is home most families do not keep railings in place.  They feel if there is no agitated movement and the person too ill to move on one's own then they would rather there be a more natural environment for being together. Then raise them into place when the person is alone. This allows loved ones to sit, put their head down or even lie down on the bed no matter how narrow the mattress. I have seen a mother get into bed, place her dying son's head on her heart, surround him with her arms, her legs at each side of his body so the unconscious man could feel safe leaning back into her arms her head against his cheek. Then all of us, about 10 or so, and I circled about the bed and sang, prayed and laughed with the joy of it all. You will find your own way to be there at such an important time of life.

Ideas of what to say

1. Introduce yourself.
2. Say a little about why you come to be there.
3.  Let the person know if there is something you want to do, such as draw a chair near, put the railing down, or "I will sit by the window, puff up my pillow and sleep near through the night." “I am leaving for a moment. Will be right back.” "I am leaving now and Jane will be here in an hour."
4. It is good to let the person know how long you plan to  be there, "I do not know for how long I will be here." or  "For an hour." "I will not leave without telling you."
5. If you you are fearful or unsure of yourself, share that, both the doubt, the gratitude and love,"I am a little afraid but I am so glad to be here with you.”  "This time with you is very important to me." “Forgive me if I am a little awkward".
6. There may be things you want to say before the moment is gone.
7. Think what would be helpful to say or do  if you think the person may also be fearful or confused.
8. Tell the important things going on or you think the person needs or would like  to know.  "Today is Monday, the middle of May. It is two in the afternoon. This is Saint John's hospital." or "You are here in the living room. We brought  in a hospital bed. It makes it easier for us. And we want you a part of what is happening."  "Robert sent yellow roses right here by you."  "Peter is coming in from Montana. He will be here tomorrow at midnight. He wants to be with you."  "Lilly's graduation is tomorrow. I will come and tell you all about it." " I am here so Marsha can get some sleep. She will be here tomorrow at ten. She loves you so much as do I."
9. Remember these are ideas, you want things simple and spare so not to overwhelm but reassure with knowing what is going on around the person and with the people important.
10. It is important not to assume there will be death. But having said that, I once told a person who had been unresponsive for days, "It looks like it is getting close, if there anything you need to say or do this is the time to do it." And within a few moments he opened his eyes,wanted to get up and go to his office which was the small room next door. His wife and I helped him to his desk where he sat for 15 minutes looking things over then died.

Closing thoughts for today

1. Know the importance of  touch, words or your quiet  presence.
2. Be brave to do what you want or need to do, but do only what is in keeping with who you are.
3. Reevaluate priorities. Look at "rules" and how things are "always done" to determine the relevancy in this situation.

 Leave a comment with your experiences, questions, ideas below. I love how we  learn from each other. If there is not a space for you below there should be a place by clicking  the word "comments" .