Family on Friday: Granny Efffie and End-of-Life Issues

My mom, Effie Johnson, is almost 85 years old and in the advanced stages of Alzheimer’s disease. Until a few weeks ago, she seemed content in her ever-shrinking world—paddling around in her wheelchair at Lakeland Nursing Home, smiling at everyone. And then she had another fall, which escalated to dehydration, a urinary tract infection and ecoli, and eventually pneumonia. So she’s been in the hospital for one week today.
The first five days in the hospital, Mom was pretty incoherent. Didn’t open her eyes much and was unresponsive to verbal commands and questions. But on Wednesday that changed. Maybe the IV fluids finally helped her wake up, and she began to respond verbally. Up until then, I was thinking this was going to be her swan song. She made it clear that she doesn’t want any “extreme measures” and has a DNR order. So, even something as mildly invasive as a peg (stomach feeding tube) seemed extreme to me.
But with her returned alertness, I was advised (by three physicians and two priests) that a peg would be a compassionate measure. That it would hopefully allow her to get enough nutrition that she could get off the IVs and return to the nursing home, where she could be mobile again. One friend, who is a RN, agreed, saying that long-term IVs can be painful. But one doctor told me he doesn’t think she will ever eat orally again, which makes the peg seem a bit more like an extreme measure. Like so many important issues in life—and especially end-of-life issues—nothing here is black and white. So I signed the papers for the peg tube. As I write these words, Mom is having the procedure done.

I’ve been here before—first with my father, in 1998. And then with my aunt. Next it was my brother, Mike Johnson, who died six years ago this month. And finally Urania Alissandratos, a dear friend in Memphis who also died in 2007. But each of these dear folks were in the final stages of cancer when we were facing those end-of-life issues. It was clear that they were dying, and why they were dying. With Mom, it’s not so clear. Without the peg, it’s possible she would starve to death, which doesn’t seem humane. But even with the peg, she could be bedridden for weeks, months or even years, which also doesn’t seem humane. When nothing else causes death, the Alzheimer’s patient’s system eventually just shuts down because her brain forgets how to run it. I pray for Mother’s comfort, and for wisdom in making decisions that are compassionate.

As I walk the halls of Baptist Hospital, I’m struck by the acrylic signs strategically placed on the walls. Each one contains a scripture verse. The one across from me in the waiting room right now says this:

“Those who trust in the Lord for help will find their strength renewed.”—Isaiah 40:31

I imagine those words are helpful to friends and family who are visiting loved ones in the hospital. But I don’t know if Mom can trust in the Lord in her diminished mental state. Sometimes when I visit her in the nursing home I sing old hymns, and she sings along on some of them. Other times I’ve recited the 23rd Psalm, and she joins me. So I know that these lifelong elements of her Presbyterian faith are etched on her psyche. Or somewhere. But now when I hold her hand and say a prayer, she just looks at me, through glazed-over eyes. I wonder what she hears. And I hope that God hears.

Mom doesn’t know who anyone is any more. Not even me—although she smiles when she sees me. And once, yesterday, she said, “I love you, too,” after I told her I loved her. Usually she just says, “thank you.” I brought a picture of Dad and her up to the hospital from her room at the nursing home and put it in her hands yesterday. (WordPress still won’t let me insert photos into my blog, but it shows up on Facebook for some reason.) She ran her fingers over the picture and said, “That looks like something important.” They were married for 49 years before cancer took my father at the young age of 68. He was the love of her life, so yes, Mom, this is definitely something important. And today I find myself asking, “What would Papaw do?” It’s too late to ask him whether or not to do the peg, since it’s already happening. But other hard decisions may be coming, so tomorrow I think I’ll drive out to his grave and sit on the nearby bench under that beautiful tree and have a chat with him. My brother is buried a few feet away. And my precious Goddaughter, Mary Allison Callaway another few feet away. I always feel like I’m surrounded by a great cloud of witnesses when I’m sitting on that bench. Each of them is a hero in one way or another. And I could sure use a hero right about now.

 

12 comments


  • jason

    We are there even though we are not.

    January 4, 2013
  • Shari Smith

    I love the exact nature of her comment about the photograph, that it looked important. I am sorry for your struggle, Susan, and hope that you know that you are doing the best you can, whatever you decide. You’ve done the best you could.

    January 4, 2013
    • Thanks, Shari. Of course I’m trying to write while I’m in her hospital room, but it’s hard to concentrate on a story….

      January 5, 2013
  • Susan, my heart goes out to you. We have faced so many unanswerable questions and decisions with my own mom, though the circumstances are different. It is gut-wrenching. I’ve been rading Ann Voskamp’s One Thousand Gifts, and this comes to mind: “Awakening to joy awakens pain. Joy and pain, they are but two arteries of the one heart that pumps through all those who don’t numb themselves to really living.”

    I’m sorry for the pain and thankful that you are really living from a heart that can also experience joy.

    God be with you.

    January 4, 2013
    • Shelia, your words mean to much to me right now. I know you understand. And I love the quote. I often try to numb the pain (usually with alcohol) but the older I get, it seems to be less effective. Maybe that’s a good thing. Thanks so much for reading and for leaving these wonderful words for me. Love you.

      January 4, 2013
  • The procedure was uneventful, and tonight they’ll start Mom on 100 milliliter feedings. If she tolerates them well, they’ll add a liquid/soft diet orally. One day at a time.

    January 4, 2013
  • My heart aches and my brain fogs up right with you. Years ago, I faced the same decision with my Uncle Morgan and I came to “yes” just as you did after a dear nurse friend explained to me that the feeding tube was a compassionate step. Uncle Morgan passed away before the procedure was done, but I’ve always been happy with that decision. Blessings to you and your mom. I hope you feel the strength of your friends’ prayers.

    Diana

    January 4, 2013
  • I forgot to tell you that my grandmother’s name was Effie Mae.

    January 4, 2013
    • Effie Mae! Wonderful. My mother is Effie Jeanne, and she has a cousin named Mae Carol. Love these old-fashioned names. And thanks for your words of encouragement, Diana.

      January 5, 2013
  • My God, Susan. I wish I could say some word of comfort to you, something that would take away this pain. But I think you’re going to have to pull from the love and strength of those who have gone before you, and the warmth of the Master’s hand you know so well.

    The circle will never be unbroken, my friend. Life is but a blip on the screen of eternity. Your post has stirred my heart and I want you to know, you and your family are in my thoughts and prayers.

    January 4, 2013
  • Amy Everett Stankus

    Hi, Susan – I wish I had words of wisdom. What you are going through is so hard. I am thinking about you and hope you are able to rest. I always enjoyed coming to your house to visit – your mom and dad were some of my favorite parents. I bought my first pair of running shoes at your Dad’s store. Sending prayers to you – Amy

    January 5, 2013
    • Thanks, Amy. I’ve got great memories of our times together back in the day:-)

      January 5, 2013

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