NOTES OF DOUGLAS SMITH'S LECTURE
October 10 Ramada Suites. 8-3:30. Sponsored by Hospice of the Red River Valley
“You have been calling them patients, I call them teachers.” – Buddhist Monk
We learn what love is all about. We learn what life really means. We get nourished from the people that we serve. We live our life for others.
Daughter Marin.
When death hits home, we forget all that we have ever learned.
Marin was born with neurofibromatosis.
When someone has a combination of nerve pain, with tumor pain, Marin died with an immense amount of pain.
Dad, the other children point at me and call me names. Dad let go of my hand and walk behind me and don’t say anything, just listen. Watched daughter walk through gauntlet head hanging down. Knew that she would face those difficulties with an immense amount of difficulties. She did not go to a single child’s home after school.
If there was not someone who would be a recipient of her love, she contracted with a man to get her pregnant.
Children will love their mothers, even if they have large tumors. She had a vocation but she needed to make a living.
She bought her own home across from the school, successful in telemarketing. People did not see that terrible disease, a single mom, that other people labeled her for, but they did see her.
She wanted to have another child, and contracted with another man and the boy had neurofibromatosis. Marin had the loss of a leg and confined to a wheelchair.
Doug invited Marin and her new child with them. She lost more than a quarter of her skull. Marin interviewed perspective parents for her children. Her last night of consciousness was spent in a Hospice house, made to feel like a home. Last night of consciousness, she spent with her brother Joshua.
“Let's sing a song: “Angels we have heard on high” “Lift high the cross” Marin ended her life with courage as she had lived it. When death hits home we need to relearn some things. The importance of focusing on the strengths of the care recipient, rather than on our strengths as caregivers.
For Marin taking care of Trey was taking care of herself. Even Trey knew that. Trey would guide Marin’s hands as she changed the daughter. Wait until Marin was able to pour the cereal into the bowl.
Three strengths that I have as a caregiver:
Focus on person.
Variety of interests
Enjoy other people
You’re the one with the problems. I am the one with the solutions.
The problems we addressed on Tuesday are out of date on Wednesday.
Another problem is relationship dominance.
All of us have been going through little deaths, and through that we have been developing strength.
What strengths do they have and what coping style do they use.
The best that I can discover is where I need to go, from a problem assessment.
With a strength assessment, I have a map in which to get there. So that the person can have a familiarity with coping with this new problem as he had in the past.
Your strengths are certainly more valuable to me than mine are.
If humor is strength, capitalized on this strength.
If I am focusing on my strength, I can take away strength of theirs.
How come we are always feeding our strength instead of theirs.
The goal is to make the other person strong.
We are continuing reminding people of things that they are well aware of.
Many of things that we have listed as problems, not sure I they are problems at all.
Is it a problem to have lost a loved one and be depressed?
Is it a problem to be dying and be angry?
By problem assessment, we create problems.
Psychologists have had to bend or twist a problem in order to meet a DSMIII category.
I feel: empty, worthless, regretful, a burden, punished, life has been empty, dead inside, and nobody cares if I live or die.
Doug, we have been waiting for you. There was no other “we” in the room. I want to initiate you into the international brotherhood of magicians. Doug come closer. Closer Doug. Jack was looking through his eyes. Doug watch me disappear, and Jack died.
Allowed to experience a reality that is not my own.
Scott had Alzheimers. 40 in the unit. He was considered to be the most difficult of the 40. Smear his feces on the walls. This might be a strength in disguise. He can take shit and make art. Brought finger-paints, and did not reach in his diaper that day. Scott was an artist and just taking whatever he could find and worked with it.
Kira’s love was dance. Tamara would accomplish Kara on workshops. If you never dance again, you will lose two of your loves. Whenever you dance the dance of sadness, dance the dance of sadness you see in tomorrow, dance of joy.
Doug needs to process his healing through the death of Marin, and do so in workshops.
Teach himself while he trying to teach others.
*****
Anger as strength
“If you were doing your job I wouldn’t be in this bed”-To Nurse
“You are living in a world of illusion, would you grow up”-To Chaplain
Social worker wrote: My role is being yelled at.
If I take away her last way of asserting herself I have done a disservice to her.
This is the way that she has always been. This is how she copes. It somehow makes her feel strong.
The role of this work is not to make me feel comfortable; it is to make her feel strong.
Misconception of Kubler-Ross’ book. Kubler-Ross is not to move people towards acceptance. You can’t be at A all of the time and Z all of the time and go back and forth.
If other people would just get to know our children…
We say later, we would be able to give our children the attention that they deserve.
Imagine something that we don’t love is trying to get our attention like death. Not now in many forms.
You qualify for Hospice at 6 months. The median is 17 days.
I cannot simultaneously focus on life and focus on death.
Don’t you dare tell me that I am not mature. I need to respect the choice: they don’t want to talk about it.
I do not need to know the reason, but I do need to respect the choice.
Doug we know that Tom is doing but we don’t know if he can handle it.
All as I leave this room, and go one at a time and express how you would feel if you were in this bed. If after that discussion, I will honor what you have decided, but first put yourself in that bed.
Families often want to talk about it, but they don’t know how.
Often we have Physicians in denial. “If I knew that Tom wanted to talk to you about this, would you want me to tell you?” Do you think that Tom wants to talk about it? I am not sure but maybe you should ask Tom.
*****
Giving your current capabilities, how would you want to spend your time?
****
Something is very wrong about our current care plans.
We treat people merely as a set of problems.
If I can make my care plan for the patient, the same as my care plan for myself.
Even if it is unrealistic, it is still their care plan.
If I can’t get her to Hawaii, I need to bring a little Hawaii to her.
Whenever I enter her room I am going to say Aloha.
Sit around the campfire and tell his last story and sip a beer. Set a date and called relatives, built a fire in the fireplace, brother brought a beer and a straw, sipped this beer.
Where are your measurable outcomes and where is your quality improvement.
You take whatever they say and divide it into 5 measurable outcomes
Everything we are asked to do we can do a slight shift, instead of having unconditional positive regard for the commission we have it for the patient, and bend it for the patient, because they don’t fit forms. We are closer to meeting them, and less likely to be cited.
W start out with what we believe to be a good care plan. “You don’t have this” SO we add another page, and then they site us for inconsistencies.
You cannot find a single example in the Joint Commission manual around problems. We are supposed to be measuring, NEEDS CONCERNS EXPECTATIONS AND PRIORITIES. And even this individuals.
Each institution sees thee as problems. We are claiming to deliver something that we can never deliver.
Were people not sharing their needs, concerns, expectations and priorities?
GRIEVING
Given our relationship, ex Chaplain, what is the best thing that can come from that relationship? However a person answers that question is there care plan.
FANTASY: I need Michael, my brother who died back. I need to go on a canoe trip, I am a workaholic. The counselor said lets try. The counselor said I don’t care what it takes, but somehow take off two months.
First month build a canoe entirely from scratch, and on each side put the name Michael, take that canoe up to Ely MN. Each evening write a letter to your son and two you plan on relining your priories from now on. Sometimes we might have to be quite creative, address it and measure our effectiveness.
FANTASY DATES
Marin decided that she wanted to go to Target.
1. Have you even noticed that nobody looks out of place? Some people are wearing pajamas, and other people dressed to the hilt, I think that I might be able to blend in at Target.
2. It is an ideal place for a mother to go. Clothes for me, for Tray, for Videos
3. Maren wanted to feel normal. What is more normal than going to Target?
Guidelines for guided imagery.
Anything that is powerful can go in to directions, positive or negative.
1. Always give the client an overview of where you are planning on going.
2. For some people even closing their eyes may not be a good thing.
3. Use multiple senses whenever possible.
4. Use gender neutral words
5. Focusing on the client’s resources rather than mine. If I want to relax me and imaging myself on a beach with palm trees swaying in the wind. And imagine my breathing to gentle waves coming in and going out, Mildred has a lot of anxiety, imagine yourself on this beach and march your breath, didn’t now Mildred, didn’t know that she didn’t’ know how to swim. Hardly relieving her anxiety. Early on in her relationship. Mildred is there a day that you might remember when you felt relaxed and at peace. I remember the day that the last child went home. Went to a bed and breakfast and read a book that she has been wanting to read for months. One page after another, one page after another. Mildred can go back to her bed and breathe whenever she likes.
We need plenty of time to process where she wanted to go. Doesn’t work as well in a group setting.
Image of God Imagery
People know the answers to their own questions.
What is my purpose now?
This doctor does not know how to cure anything, but knows how to answer any question.
Coming into that space is this person, and now you are going to ask your question
In your space ask the question and the doctor says. They are able to reject from someone who is not able to be overloaded.
In your past, when you have had a special need, is there anyone who has had the answer. This time ask your mom. If the mom does not have the answer don’t give up. Wait a minute, maybe they both had the answer, and the answer is there is no answer. No matter what happens I have something to work with.
Releasing your loved one.
How can I let go? Guided imagery has three people, you will be one, your wife another, and this loving person that you can ever imagine will come to you Coming over the horizon is this loving person, behind is a line of people disappearing over the horizon into a warm light. I want you to look into the eyes of the loving person. Arms are stretched out toward you. And in your arms carrying someone who has died Recall the memories. Look up at the loving person, and the arms are not for you but hey are for the friend that you are carrying, put your arms into. Loving person takes your friend and places in the line of people and passes it into the light, and the loving person says thank you, and you feel nice and safe and it is ok to go on
Maren said Nurse is using guided imagery from a book that you wrote!
Camp Courageous-Assistant Director, Steven and Jennifer is the dad of Maren’s children. They are able to get the invaluable education that others aren’t able to get.
One of the first things the new family would do is go to Disney world. In guided imagery Maren was able to look over their shoulders on the rides at Disney world.
ANEMNESIS
In remembering something from the past, in the present we make it present.
Sometimes this is used in the prayer of consecration, when the elements are transformed, we make it present. The doctrine of the Real Presence: “really, really, present.”
That is what love really means.
Something in your past that you are proud and which you experienced love.
Do in remembrance of me
Life review with these two words: Proud, Love
What one positive memory comes to mind when you were five or six years old.
Amanda could not erase but could get unstuck.
Linda, age 44, her illness had something to do with things that she had been carrying for a long time unrelated to anything that we are talking about, abused by male babysitter. Since then I have only shared with my husband.
Mother to children: I want you to do something in your minds that will end the cycle of child abuse.
We want to emphasis with people the positive. Is there anything in your past that has ahold of you right now that you would like to let go.
We can do life reviews through photographs. A sign under each photograph that says “Ask me.”
What was important about the 79’s and 89’s what was not important about the 60’s and 50’s. How come your brother is not there?
We can do life review with people that are non-responsive.
A book on Albert’s bedside table of someone who is non-responsive. ‘The history of black baseball. Albert’s eyes were not open, and Albert said Um. Albert raised his fingers 3 times. On page 33 was Albert nicknamed speedball. “Do you know Satchell Page”, Albert’s eyes opened.
Who are you are what makes you different from everyone else.
Labels. Where would you go to find peace?
Put a book, representing your beliefs or values.
How would you physically represent the glue that is holding you together?
Sometimes the language can be quite unusual.
“Stormies” is like a good church:
Wear what I want
Learn something about another, and they learn about me.
If you break a few rules, and if you break them, you get kicked out. Everyone pretends to follow the rules in church
Sufi tradition. Christian tradition, using the same words. Jump into the language and rock back and forth, arm and arm.
Love the other person for who they are.
They’ll know we are Christians by our love. Don’t tell me the words until you first tell me what they mean. When we live them, people will see it and they will ask.
Where do you get the strength? We get in trouble when we get into the issue without being invited yet.
Clinical Distance has been overdone. Kitchen Table Wisdom. Rachael Naomi Remmen. It is hard to touch someone with our vulnerability, unless we reveal our own.
We cannot understand what someone else is going through.
Using people for our own therapy.
Whenever we are sharing our wound, it is for our mutual benefit.
I do not change another person.
What we do as helpers to represent ourselves as real human beings. I don’t know your way, I can’t know your way.
You can use the old form in a new way. Let’s get as many problems on the form. Now let’s take this same information, but let’s put it into a different form, in the form of a resume.
All of a sudden using the problem assessment form to get at the strengths.
Doug, you are looking at your gift, go sell it. No matter how difficult things seem to you right now, there are strengths.
Touglen, with each in breath, I breathe in their pain and suffering
People who have gone through a similar loss.
Tonglen is the spiritual equivalent of a good spiritual exercise. We are spent but we are energized in the spending. View yourselves not as a receptacle but as a channel, if you are getting stuck.
A Shoshone technique. Nasasuqui. You reverse the process and your blow out the negative.
The difference between my world and the world of my grandparents, are that we are aware of the suffering that is going on in our planet.
Giving someone permission to die.
Only you will know if the timing is right for you.
Have we expressed our love?
Anything that is in the handouts feels free to use. There is no copyright.
Service of remembrance.
Offer not only a funeral service, but 3 months later, have a service of remembrance.
Compromise, according to the funeral director, the church, planned during a time of numbness and confusion. It was there family son and they didn’t sing it.
PEOPLE THAT WE CAN’T HELP – PEOPLE THAT DON’T WANT OR NEED US
Wilma, you may be good with other people, but you are not with me! Called up Doug, and you make sure that we will never see one another again because she does not listen. Wilma does not go back to that house.
Timothy – Paul as a feeling that he is not going to make it thought the winter. Timothy will you do your best to come before winter.
Messages of regret-I didn’t think that mom would go so quickly. There wasn’t a next visit.
Louis Bascolia: Things you wouldn’t do. Thought you would kill me ,but you didn’t. I thought you said that you would say I told you so. Remember when I flirted with all the guys to make you jealous and leave me but you didn’t.
Come before winter.
Clyde was very stoic. She seemed to alternate between times of staying to be alive, I t is Ok to let go. In recent years there had been a lot of distancing. Could there be something unfinished in your relationship. Said I love you, she took three breaths and dead. Clyde was convinced that those three breaths stood for three words for him.
I was in the room..
Come before Winter. It is in each one of our homes. Sometimes these opportunities that we have today, may not be here tomorrow.
We all know what we need to do and who we need to do it with.