A practical guide for life's last journey, my Mom

As I began running down career/work-wise I wrote a book for lay people taking care of a loved one at the end of life. It was not published, so I posted much of it on my Baylor faculty site. 

The idea is, within the process of dying, to create a space for healing – a space free of pain, where communication is true, where hearts are open, where the time is now. The link below is to a practical guide for life’s last journey. By practical, I mean there are answers, in concrete terms, to common questions in this process: what to do about pain, nausea, shortness of breath, depression, anger, etc.; what questions to ask; how to get help and deal with the health care system; and the universal question, how will I know when she or he is dying? And more. Taking care of physical and other problems increases the potential for healing experiences for all concerned. Click here for A Practical Guide to End of Life Care  

David and his Grandmother in front of Little Gus' on Lower Greenville.
This was about two years before she died.
She had been a model in couture at Neiman Marcus.

Scattered through the site are brief accounts of the time when my wife, son, and I took care of my mother when she was dying of lung cancer. I pulled some of those out and am posting them here.  

My Mother died in the middle of the night. In the early evening, she was having some difficulty breathing because of fluid in her lungs; and the secretions were coming up in her mouth. My four-year old son stayed with her along with the rest of us. He would wipe his Grandmother's lips with a damp washcloth or Kleenex. He also brought her water. Before he went to bed, he drew and colored a picture for her and propped it on the table beside her bed.

Time and time again I am reminded of the seriousness of this work. I don't have the words to express the enormity and gravity of the end of life - and what this reality means to the person who is dying and her or his family. I believe that there is a psychological mechanism that most of the time protects us from realizing this reality. So we interact with the reality cognitively and from behind our defenses, until that terrible day when I am the one or someone I love is the one. Then we learn the true meaning of dread and anguish and so much else. And, as the process unfolds, we (hopefully everyone involved in the situation) learn about love, ourselves, strength, even nobility – and tiredness, grief, sadness - and being fully human, of fulfilling something ancient and very important.

Early in the course of the illness she received chemotherapy, which caused her hair to begin to fall out. I remember looking out of our bathroom window to see my Mother sitting in a chair on her patio and Leslie behind her cutting all her hair off so it wouldn’t look patchy or whatever. They were both crying and so was I. I’ve always thought that what Leslie was doing for my Mother then was very deep and symbolic – and in me, at least, it’s lasted a long time.

David and his Grandmother at her house. Her hair was
growing back in after chemotherapy

There were times when, for no apparent reason, she would be angry and critical toward everyone around her. If she couldn't find anything to be angry or critical about in the present, she would either recall something from the past or goad someone into saying something negative, and then focus on the negative statement as evidence of how "nobody understands," and then get upset about that. Even with the realization that this is not unusual behavior, it was still hard for us to work so hard and then be criticized.

One thing that helped was when her friend borrowed a hymnal from a church and brought it to her. She read it a lot, in part at least, to select music for her funeral. But I know that it helped to read and remember those old-fashioned Baptist hymns, The Old Rugged Cross, In The Garden, I Know that My Redeemer Liveth.

Once when she was feeling lonely and bad, kind of moping around, I got irritated and said, "Well just quit suffering so much." It was not very helpful, except that I was able to see myself as where I was - tired and irritable. And maybe she saw herself as spending a lot of time suffering.

One day, about a month before she died, we were at her house talking. She had been sad for most of the week and on that day she was especially unhappy. I asked her several times what was wrong and each time she answered, nothing; but at the same time she was sending unmistakable messages that something was wrong; a typical way of communicating for her. Late in that long afternoon she started crying and told me that she kept seeing herself lying alone and naked at the bottom of deep hole. She said she was skinny and ugly and there were cigarette butts on her and all around her and she was alone. We held hands and I told her that I was committed - along with Leslie and David - to stay with her and she would never be alone. It seemed to help.

Caring for loved ones in sickness and health is an ancient and vital duty of life. Like the soldier who goes trembling into battle, we would rather this not be happening; but we choose to do our duty. Sacrifices are made; some willingly, some unwillingly. In a sense, we really may be "happy to do this." But it seems to me that it is more and deeper than happiness. I wonder why we have so much trouble believing we have duties or saying (and accepting when another says), "I'm choosing to do this because I care for you."

Over the last year of her life our relationship grew deeper and stronger. I know that had she not become ill we would have gone on as before. With the illness though we both knew that there would be far fewer tomorrows than we had planned. It was the hardest year of my life, and I'm grateful for it.

Of course I knew it would be painful after she died, but I was surprised at how deeply it hurt. I remember telling a friend that I didn't think I would ever be okay again. My wise friend just nodded in acknowledgment of what I said. Eventually I was okay again, but it was a long sad time.

This is the picture David made for his Grandmother Mary
on the night she died. It shows his awareness that she was dying 
and a wonderful positiveness, along with deep sadness.

About a month before my mother died I dreamed that I was at my Grandmother's home (she had died 35 years before) in Cleburne, Texas. At first I was in the front yard, and then I felt compelled to walk down her old gravel driveway. When I got to the back of the house I looked into the back yard where her garden was and there was the most beautiful gold light filling the yard and then all that I could see. I burst into tears. I was still crying when I awakened, but I felt better than I had for quite awhile.

After she died, my brother and I straightened her body. Then I went across the yard to my house and awakened my wife. She knew why I was there and we went back to my Mom's house together. We called my other brother and my mother's sister. Then we called the medical examiner and explained what had happened. About ten minutes later the police, emergency medical service, and a fire truck arrived. The police were respectful and we appreciated their presence. The paramedics and firemen, on the other hand, were intrusive, bureaucratic, and unhelpful.

It was about four in the morning by then. We went back to our house and awakened David and held him and told him his Grandmother had died. He cried - I'll never forget how desolate he sounded.

Then we all went back to my mother's house. David patted her some, but mostly he sat in my lap in the chair by the bed. We didn't talk much. Through the morning people came in and out of the room. Finally around 10 am we called the medical school to come and transport her. Before she left, David pinned a photograph of himself (holding a plastic sword) to her gown. I've always thought that it would be good if the picture was still there when her body got to the medical student who would use her to learn anatomy. He or she would know that this was a woman who had a grandson who loved her.

My old home page, two girls, Jonathan's Place

I googled my name and discovered my old Baylor site is still up. I had no idea. Here is a pretty good summary of what I did and who I was in a recent incarnation of my life – refugees, hospice, teaching, writing, and so on. https://bearspace.baylor.edu/Charles_Kemp/www/

Karen child in triage/intake

Some years ago my students and I found two girls (16 and 14) living in an empty apartment in a rundown building (1604 Annex). They had some blankets over in the corner of the room and that was it. They had run away from a terribly abusive home and were clear that they were not going back. We got them some furniture, clothes, food, whatnot; and now and again over the years lent a hand out in the community and in the clinic… and for their children too, a few years down the road.

Leslie and I were in a store yesterday and a woman came up to us. It was one of the girls, now in her 30s, and now the manager of a section of the store. She told us her sister manages a section in another store. It’s not that we were a deciding factor in these extraordinary lives; just that we were there, over time, a friend you can trust. It’s beautiful to know people like them. 

Outreach

(Note from 2003) We started this week doing physical exams on children just removed from their family(s) because of abuse. Case workers from the residential facility where the children will live (Jonathan's Place) bring new children to Agape for their intake physical. There were 13 this week, but I expect fewer next week. It's strong. Because in Texas, it takes a lot of abuse for a child to be removed from a home, what with all our "family values" and other lies.

Waiting to get into the waiting room

He was a child soldier in Cambodia.
Here in the US he tried to be a good father. 

What follows is from an email I sent to my son after the first day: So when I was writing to ______ I was thinking I wanted to tell you... The people that were with the children were all young (of course): Katy has been at it for three years and is very intense and real; Keisha started two months ago, pretty, shy, nice; Ashley came in late – she feels really solid. Sometimes I wonder, what did I do to deserve this – to be around people like this. Not to lay religious on you, but it can't be anything but grace. And isn't that a beautiful idea. End of email.

The second day there were eight more children. This time Chris, a young man, intense, sweet-natured, solid. And Ashley again. High compliment to say, I'd take her on patrol. Reality is they're taking me on patrol – lucky for me they're short patrols. Students and I trying to get up to speed on abuse-focused pedi exams, learning what we don't want to learn; the students are doing a good job.

Maybe someday I’ll write about the children, but I doubt it.

A Couple of Days

Saturday I went to a friend’s retirement party, a happy occasion except that shortly before he retired his wife was diagnosed with cancer.

Community garden where my students and I did outreach to refugees

At the party my friend Mike was telling about working the gun buy-back at our church earlier that day. A pro-assault weapons/high capacity magazine group rented space across the street from the buy-back and was offering to auction or buy people’s guns at better prices than the church was giving. I think the alternative guys with all their signs turned about 20 guns and the church about 50.

Sunday school was good. I guess we’re one of the older classes now. I was mostly focused on preparing for Wednesday morning Bible study, which I’m scheduled to lead this week. The topic is why do innocents suffer? I think it's the wrong question. The question is, what will we/I do about suffering?

Likkie, from Incredible String Band

Sunday evening I went to a meeting of a group I’m associated with to plan a couple of psytrance forest gatherings. I was the oldest person there. So nice to hear what people were saying about their intentions and goals (being present, gratitude, grounding, flowing, integrating, and more). Spencer Pershkin: “I’m a wave upon the ocean; I’m a little ripple on the sea.”

Today (Monday) was my turn-it-up day at the gym. Groan.

__________

And then we watched part of President Obama’s Inauguration (falling perfectly on Martin Luther King Day). I was deeply affected by Myrlie Ever-William’s invocation, delivered 50 years after her husband, Medgar Evers, was gunned down at their home by segregationists. I saw the VP sworn in by Justice Sonia Sotomayor. I heard the President say (and I think he meant it):  

Our journey is not complete until our gay brothers and sisters are treated like anyone else under the law - for if we are truly created equal, then surely the love we commit to one another must be equal as well.  Our journey is not complete until no citizen is forced to wait for hours to exercise the right to vote.  Our journey is not complete until we find a better way to welcome the striving, hopeful immigrants who still see America as a land of opportunity; until bright young students and engineers are enlisted in our workforce rather than expelled from our country.  Our journey is not complete until all our children, from the streets of Detroit to the hills of Appalachia to the quiet lanes of Newtown, know that they are cared for, and cherished, and always safe from harm. 

Some of my associates and me - on Annex Street
(but not who I'm writing about in this post)

__________

Later that same day we were at the same store (right where the crime was committed) and a young woman came up and put her arms around me. I used to help her mom and dad. They (two parents, two daughters) lived in a tiny, dark, one-bedroom apartment on Annex Street. Her mother had tuberculosis and was addicted to alcohol. It was a seriously grim existence, but the daughter was so bright – I was always so glad to see her; I felt like she had a light shining out of her. She said her mother died a week ago. It’s not good news that this young woman – still pretty, still bright – is still in the neighborhood.

__________

MY WIFE, XENA! Oh Hell Yes! (written 6 days ago)

Yesterday, as Xena (Leslie) and I were walking into a store, a man and woman were walking out and as they passed us, the woman started sprinting and thrust her arm through the shoulder strap and took off with Leslie's purse. I chased them for about a quarter mile, through several apartment complexes and into an alley where I gave out. At one point I was within a few steps of them, but couldn’t keep up the pace.

So, we’re unsettled, Leslie has a few bruises, dealing with credit card and related issues, re-keying the locks, getting new chips in the car keys, and so on. 

I was worried about the effects of this on Leslie. Today I got a clue. She wanted to go to the store. There were other, closer options, but she wanted to go back to the store where it happened. Parked in the same spot and walked in the same door. Shopped. Left.

Leslie on the bus in Burma, 2006 and waiting for the bus in Nepal, 1978

(But it’s not all fun and games being married to a Warrior Princess).  

__________

I feel like I’ve peaked and now it’s integration time. It is that time, regardless of my consciousness of it; but it is interesting to be conscious of it.

Life goes on

The flag at Castro and Market from Noe and Market

Long time, no post. October into November I was caught up in the presidential election. The prospect of a corporate raider for president was horrible to me. What a relief when President Obama was re-elected. 

We’ve been easing ever-deeper into retirement… productive mornings, taking it easy into the afternoons and evenings… 

Leslie and I are in San Francisco at the moment. We’re staying at David’s and Charles’ house for the Christmas holidays, as we did for Thanksgiving. We had several days together, then David and Charles left for a several days to visit Charles’ family in Tennessee. They’ll return the day after Christmas and we’ll be together again through the New Year holiday. The night before they left I read the Night Before Christmas for the 26^th year in a row.

At the corner of Castro and Market

A few weeks ago I was lying on the bed in late afternoon and Leslie came in and bent over me to kiss me and like a starburst I saw her true beauty. We fell in love more than 50 years ago and I've always seen her beauty, but this was so intense and sparkling. I made a re-commitment to her then (which I told her about last night). It's a deeper understanding of "til death do us part" - I feel like I'm in a new stage of life.

Wren (named Wregan the Vegan) on feeder at our bedroom window 

So here we are riding buses and streetcars and walking all over San Francisco. Yesterday we were on Stockton Street, the Chinese part of Chinatown, checking out the markets, the people, and having lunch (duck and pork on rice, what else) at the New Moon Café, where if you go upstairs and look back just past the restroom you can see into a room with big fans and whole pigs hanging, air drying… and the menu includes sesame oil with stomach, pork skin and pork blood, and, well, you get the point. It’s a lot like being in Asia.

Ferry Building, choir

We took the F-Line down Market to the Ferry Building Saturday market – Golden Gate Bridge not far away, vendors outside and in, tons of people, beautiful vegetables, breads, cheeses, mushrooms, olive oils, chocolates, and of course, Blue Bottle coffee. There was a choir singing in the gallery above that runs above the ground floor where all the vendors and people are. Magic!

Hummingbird near Noe and Market.
Thanks for the camera David and Charles!

Yesterday on the streetcar back toward home a woman left her scarf on her seat and a guy chased her out to give it back and the driver waited. Later a young woman with long curling hair was getting off and she turned to us and said, “You two are adorable.” Then when we got off a man stopped us to give me the umbrella I’d left behind.

We were in Café Trieste, communing with the ghosts of Jack Kerouac and Allen Ginsberg and having the usual double espresso and there was a well-dressed older man, muttering and talking, and then shouting and cursing, standing right next to Leslie, threatening someone, shaking his cane, and Leslie is sitting there, cool as can be… Someone finally escorted him out. As we were leaving, we saw a woman, escorting him back in. Haha, we wondered what the people inside thought about that?  

Inside Italian streetcar (1920s) on the F-Line

Little by little the buses and streetcars are giving up their secrets to us. Into the Tenderloin and the 38 stop near Shalimar where people go to score and sometimes smoke crack (a desperate scene; it's tolerable, though, as long as you don't do something stupid like carry a purse); and the wonderful loop from Union Square through Japantown (nice mall, clean restrooms), on to Fillmore (coffee at Peet’s), Pacific Heights, through the Marina (walking around Chestnut Street), looping back up through North Beach, Chinatown, hop off at edge of Union Square and walk back to our hotel in Chinatown.    

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Even with all the magic, it’s a somber Christmas. The Newtown Connecticut killings of so many children have shaken Leslie and me. What now?

Gun laws should be improved/strengthened of course. I say this as an experienced gunfighter who owns guns. I’m not a hunter though.

We should commit to being better parents, and partners and neighbors. It all starts at home, loving, supporting, teaching, and protecting. It continues into community, with engaging, supporting, and lifting up others.

We should train ourselves and our loved ones to maintain situational awareness. This isn’t being fearful or paranoid; it’s a basic life skill and is in opposition to walking around like a numbnuts.

We should make a commitment to acting effectively when action is needed. In a crisis/dangerous situation most people freeze and do nothing; a few people panic; a few people act effectively. For example, if someone starts shooting, what should you do? Go sideways of course, preferably to the left, and leave or flank the shooter and take him down.

I just finished reading Carl Jung’s autobiography, Memories, Dreams, Reflections, wherein he says evil has been loosed upon the world as a “determinant reality” and “how we can learn to live with it without terrible consequences cannot for the present be conceived.” And I’ve been reading the Book of Job, the book that asks, “Why do the righteous suffer?” Someone suggested St. Francis had a response, but not an answer to this (heretical) question. I’ll take this as a response to Newtown and as part of the answer to the question of, “What now?”

Lord, make me an instrument of your peace.

Where there is hatred, let me sow love.

Where there is injury, pardon.

Where there is doubt, faith.

Where there is despair, hope.

Where there is darkness, light.

Where there is sadness, joy.

O Divine Master,

grant that I may not so much seek to be consoled, as to console;

to be understood, as to understand;

to be loved, as to love.

For it is in giving that we receive.

It is in pardoning that we are pardoned,

and it is in dying that we are born to Eternal Life.

Amen.      

As anyone who knows me would know, I’ve got a way to go on this one, but nevertheless, Onward, into "the unrepeatable gift of each precious day."

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When we got back to DFW Airport from Thanksgiving in SF there was a note on my car, saying “A Purple Heart (referring to the license plates), Marine (window decal), Obama supporter (bumper sticker) – I dig it! Thank you for your service and happy Thanksgiving!” Inside the note there was a gift. Nice.

Chocolate pecan pie

I’m a pie-making dynamo. Starting at Thanksgiving I’ve baked at least one… pecan pie, chocolate pecan pie, chocolate walnut pie, cherry pie, apple pie, coconut pie, beef pot pie, and chocolate torte.

There have been challenges this year (the hailstorm, mostly), but it’s been a good year for us. And I’m committed to continue to work toward real-izing St. Francis’ prayer.

Subsonic love-making

We were both sick (GI – nevermind the details) and Leslie was much sicker than I. After a few days we were able to get out of bed to somewhere other than the bathroom… after we could move around there were many hours that we still lay in bed together, one or the other dozing, awake, not talking, holding hands, and even though neither of us felt well, it was a sweet time, together.

Last Friday I went to a huge luncheon at the Anatole (long gone the days of big room bad food). The theme of the event was Each Moment Matters and it was all related to Grace Presbyterian Hospice. I was blown totally away, tears in my eyes blown away by the announcement that there is 30 million dollars in the bank toward a goal of 45 million to build (Dallas’ first) inpatient hospice. An inpatient hospice has been a dream since 1978 when we started the first hospice in Texas!

Main stage at Art Outside

From the luncheon I was on the road to near Austin where I went to something called Art Outside. I camped with the Atrium Obscurum crew, hung out at the campsite, spent some brilliant time with Asa of Hyperdimensional Space Exploration Foundation, danced and danced and danced…

And went home to Leslie early Sunday afternoon. The perfect ending to an epic several days.

Sometimes at night, when you’re asleep I whisper things to you, like, “Leslie, I adore you… My beautiful Leslie… Forever and ever... I love you…” Adore - a perfect word for all of this. Subsonic love-making.

These are the days.

Preserves

This post is dedicated to Henning Wessel, a friend who recently died – a good guy who helped a lot of people passing through Phnom Penh and along the Mekong. Henning loved food and I think he would have enjoyed this post. Brokedown Palace (going home)

The hailstorm repairs are allllmost done, summer heat is finished, and it’s time to bake again. Over the past few weeks I’ve made pear preserves, strawberry preserves, triple chocolate cookies, bun cha, lahp, a country French boule, and a country French cheese (pepper jack) boule. For breakfast this morning I had bread, preserves, and almond butter – all homemade.  

Here are three good preserves recipes:

Strawberry on left, pear on right

Strawberry Preserves 

Recipe from Martha Stewart, with increased sugar

Super-sweet berries are not necessary. The main thing is good flavor. The sugar takes care of the sweetness.

2 pounds strawberries, hulled

1 tablespoon plus 1/2 teaspoon, freshly squeezed lemon juice

2 cups sugar

Directions

Put strawberries and lemon juice in a large saucepan. Cook, stirring occasionally, over low heat until juices are released, about 40 minutes. Stir in sugar.

Can take berries out, put in jars, then cook the syrup down and pour over berries. This will result in firmer berries.

Bring to a boil over medium heat. Cook, stirring occasionally, until mixture registers 210 degrees.on a candy thermometer, about 15 minutes. Original recipe says “Let cool completely; skim foam from surface with a spoon. Preserves can be refrigerated in an airtight container, up to 2 months.” I pour them up hot, jars in boiling water for 15 minutes. 

Amber Pear Preserves

Printed from COOKS.COM

□   4 c. under-ripe pears (I use 4#)
□   3 c. sugar (try a little less – with 4# pears, I used 4# sugar)
□   1 1/2 tbsp. lemon juice (3 T if increasing as above)

This recipe is about 75 years old. Peel and chop under-ripe pears. Let stand overnight with sugar and lemon juice. Stir then put on low fire and let simmer until pears have turned amber color, about 2 hours (BUT do not over-cook). Go by color. Stir to be sure it isn't sticking. Pour in prepared jars and seal. Use all juice. Boiling water bath for 15 minutes. You are really in for a treat.

Orange Marmalade

From About British Foods

Seville oranges are smaller and not as “pretty” as the usual oranges seen in stores. But they are the right (bitter) oranges for this recipe. Usually available December-February. Need ~12” square of muslin, large non-reactive stock pot with 4 liters water, sterilized jars.

5# Seville oranges

2 large or 3 small, unwaxed lemons

6# sugar (original recipe calls for a little more)

4 liters water in a large pot

Almond butter, strawberry preserves, country loaves (cheese on top)

Halve the oranges and lemons and juice them. Add juice to water. Put the pips and rubble onto muslin, tie it off, and put into the water. Pull the membranes out of the oranges (reserving the pith and peel) and discard. I think the membranes add a stronger bitterness. Cut orange and lemon peel into strips. If too thin will dissolve. Put into water. Bring to boil, then heat, and bring to boil. Boil for about 20 minutes, removing any scum – until setting point* is reached. When setting point reached, turn off heat and let sit for 20 minutes.

Pour into sterilized jars (I use a sterilized 1/3 cup measure). The original recipe doesn’t call for a 15 minute boiling water bath, but why not.

*Setting point is determined by putting a couple plates into the icebox for 15-20 minutes. Put a spoonful of marmalade onto a plate and back into icebox for 5 minutes. Then push the edge of marmalade with finger. Wrinkly = set.

Thoughts on writing

Someone (T) asked me about writing… I can tell you what worked for me, but first, T, I didn’t ask if you’ve thought about writing a book about your life. I asked, “Have you thought about writing about your life?” The point of writing about yourself is to understand more about yourself, how you got to where you are, where you might be headed, to tell your story, and maybe, if others read your work, to change people’s consciousness. (If you write truly you’ll certainly change your own consciousness!) I’m well aware that the first part of your life was extraordinarily difficult. I was seeing writing as a means of discovery and ultimately, healing. If a book results, well, great.

The way to become a writer is to write – several hours a day, five days a week if possible. Maintaining a blog is a good way to get started. I write about people I meet, things I do, my past, whatever. I’m writing a lot less these days. FB posts lead to nowhere in terms of writing.

Most people need coaching or editorial help, especially early in the process of becoming a writer. For many people, it isn’t easy to hear that their writing is lacking in grammar or style or whatever. But there is no avoiding correction if one is to be a serious writer. 

Related to editorial help is a constant effort to improve one’s writing. I always revise and correct my work several times over. One curiosity I discovered about my writing is that fairly often, the last sentence of a paragraph actually should be the first sentence.

Intentions are of little value. Actions matter.

The problem of “writer’s block” should be ignored. If you can’t write, work on the table of contents or clean your desk or change the oil in your car or something productive. Waiting for inspiration while staring at a blank screen or sheet of paper is a waste of time.

Read other people’s work. I’ve learned a lot from skilled writers like David Sedaris, Elmore Leonard, Harry Stack Sullivan, and countless others.

I carry a pocket notebook almost everywhere I go. I write down things I see. things people say, my thoughts, quotes from things I read, whatever. I use less than 20% of what I make notes of/on. I’m still waiting to use these quotes: “Onward, toward our noble deaths” (title of book by Misuki) and “He despised all cant and pretentions, and he never called himself an artist” (from the forward to the Aperture book on Robert Capa).

This is a lot of work, but if you do it for several years, you’ll be a writer.

I wrote because I had something to say and there was some degree of I wrote because I couldn't not write. Thanks to my coaches and editors: Joe Bob Briggs, Jennifer Donovan, Linda Garner, and the editors at Lippincott and Elsevier Science.