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.