Go fast, no wait don’t go.

For three weeks I have been away from my everyday life — as a single person, I have had the freedom to move to California without thinking of another person, go on a hike when I want to, make coffee or go out for it, cook dinner or order in, drive to the coast, buy a ticket to Colorado, go on a walk…you get the idea.

I have had the freedom to do just what I wanted to do and when I wanted to do it.

And then I bought a one way ticket to Texas at the beginning of May, the day my dad decided not to do a feeding tube, a week after his swallowing quit working, he wants to die a natural death. “Don’t let me linger” he once said to me.

 

So we are all here, waiting for him to die from malnutrition. And if you want to send me a text and ask “How are you?”

I’ll tell you i’m awful.

I’m not afraid of feeling terrible, I have had a numb lump in my heart for three weeks. My dad’s routine consists of ice chips twelve times a day, we blend cubes into snow and feed them to him slowly. I am sure my mom will have to retire her fancy blender for awhile after this, not because it will be ruined with ice, but the sound will be a painful reminder of my dad’s last days.

He also cannot move a muscle without help, so every hour or so we readjust him; on his right side, left side, sit up, cough, get the phlegm out, move his hips, hold his neck, watch his knees, set the pillows, wipe his eyes, wash his hands, brush his teeth, kiss his forehead to remind myself he is precious and not annoying.

I have made the choice for his dignity (and mine) not to help with bathroom duties. Which is why every night my mom and I both sleep in her bed together, my responsibility is to get out of bed when my mom taps my shoulder and help my dad turn over and adjust all the above mentioned body parts.  And my mom’s job it bathroom duty, but she usually ends up doing it all, because I am an asshole and cannot wake up four times a night without being told. She just does it.

During the day, my mom and I fight about God and fried eggs vs. poached eggs, but at night when she crawls into bed I cling to her like I am seven. What’s funny is she never let me do that when I was little, my parents wanted me to sleep in my own bed, to be independent and strong.

But now, at twenty-eight I will curl against her for as long as she will let me, just to feel comfort in the grief of both of us. Mostly it is me who needs comforting, but occasionally she will cry and I will hold her and tell her how brave she is — all the while my dad will be ten feet away listening quietly to our struggle, wishing to be comfortable, but also to comfort.

I want to speed up my dad’s dying for him, but also for me. It’s cruel to watch someone who once weighed eighty pounds now weigh even less, shedding life but still surviving because despite his muscle deteriorating disease he is pretty healthy. His heart is beating and his mind is sharp.

Which makes us wonder, as we sit together as a family, are we assisting suicide? This decision not to have a feeding tube is killing him, but are we accomplices in a stubborn mans choice not to try?

What’s the difference between death by choice and by natural cause when you cannot swallow but there is medicine to keep you alive?

My family pondered this last night as we sipped decaf coffee and tried to calculate how much longer my dad could live on ice chips. And how much longer could we go without much sleep and on the emotional roller coaster of a lifetime.

“Families and health care providers may be uncomfortable when someone refuses artificial food and fluids, as this seems like basic nurturing. Yet, legally and ethically artificial nutrition and hydration is considered health care treatment, just like surgery, dialysis or other medical interventions. People have the right to decline medical treatments, and others must respect this decision.” — Canada Virtual Hospice

I read this article to my family, and for once the internet didn’t leave us more worried about a medical condition. It gave us peace.

My dad has the right to make the decision to die, just as I had to make the decision to stay and watch him. I could have left, no one would have faulted me for wanting to go back to a new job, to start my life in California. Like I said, I am used to walking away when I want to.

For once, I am not doing what I want to do, but what I need to do. My family would survive without me here, my dad would die without me here. But I need to hold my mom at night and I need her to hold me.

I need to practice telling my twenty-five year old sister how special she is and convince my twenty year old sister to go to the beach with her friends. I need to see how sacrificial my sister-in-law is and how much she loves my brother. I need to see my brother love his boys.

“There is no way to predict when someone’s condition may change suddenly. Therefore, it’s important to address any issues that need attention before the patient becomes too weak to do so. Things that need to be done or said should happen sooner rather than later.”

I wish I was better at saying every important thing to my dad each time I adjust his bed or feed him ice, but I cannot think of what to say, so I say almost nothing but “I love you.”

He tells me, in the labored way of someone who cannot swallow that our time is precious to him.

We do not know the day he will leave us, so I cannot plan much ahead of the present. My dad has always been slow and calculated. My mom and I keep laughing about how he will die at the same pace he does everything else. (We laugh because laughter is another form of grief, in case you are worried). We cannot speed his death up, and I know at the core of it I don’t want too. Even if we only sleep for two hours at a time, are drinking twenty cups of coffee a day and crying is my only workout in three weeks.

I love my dad, and I can wait.

31 comments on “Please Go, Please Stay

  1. Such poignant words full of grief and hope. Thank you for posting and in some way, allowing us to be a part from afar. You all and your dad have endured (and are enduring) much still. My heart goes out to you in this time of waiting. Prayers for you all.
    Trish

  2. I don’t know you. I’m a college friend of Trish Smith. I felt led to read your posting First of all, GOD is LOVE and you and your family are showing true unconditional Love. I commend you for your Loyalty and Devotion to your Dad. Thank you for sharing a life struggle we all will eventually face as individuals or with a loved one. I will pray earnestly for your Dad and family. GOD is giving you strength to carry out your care-giving and HE will Never put on you more than you can handle. What I gained from this is True Devotion. Bless You All??✝️??

  3. Krisi,
    Your words have painted a vivid and touching picture of the journey your family is on. I knew your parents many years ago (while I was with CRU) and observed depth in character and a broad passion for the world. Now I enjoy seeing the beautiful family they have created together.

    Wow, how you remind me of your mother in so many ways — strong and independent. Sending blessing and love to all the Johnsons! Kathy Rainey

  4. Krisi,

    Thank you for being real. Real upset, real concerned, real loving, and really trusting God.

    Our hearts are with your Dad and your Mom, and all of you. We pray for you daily. Our kids do too.
    Much Love,
    Nick and Lyd , LJFV

  5. Krisi –
    I am so sorry to hear of your Dad’s slow walk to heaven. I know them from decades ago with the Music ministry of Cru. Please tell your mom & dad I am joining the throngs of others praying. These are sacred, exhausting hours and days. The grief is real and deep. I’m glad you penned your thoughts – for your sake and the support of those who love you and your family. Remember – breathe in, breathe out. Sometimes that’s all we can do.

  6. You are proof of our creator. Only God could give someone the strength to go through what you are enduring. Stay strong.

  7. Krisi,

    I love you and I’m praying for you and your family. May your writing help you heal and may your loved ones hold you close.

  8. Thank you for sharing. I can only imagine how difficult this time is with your dad. My husband, Tim and I were on MAN staff with your parents years ago. What a great man your dad is! We enjoyed him and your mom and know the impact that they have had in so many lives. Our thoughts and prayers are with you and your family as you walk this journey. Give a hug to your mom from the Chastains!

  9. Thinking if you Krisi. Today would have been my my mom’s birthday, which somehow makes me feel your story even stronger. Xoxo

  10. Thinking of you Krisi and sending comfort. Today would have been my mom’s birthday, which somehow makes me feel your story stronger. Xoxo

  11. Beautiful words Krisi. Thanks for writing them. Love and respect your parents and the life they have lived and are living.

  12. Oh Kristi. Your words are so beautiful and heartbreaking and cut right to the heart of grief. Obviously I cannot capture your words with mine, but I’m so glad you’re writing all this down. Sending you hugs from an old friend.

  13. Krisi thank you for sharing your thoughts about your love for your family. We feel sad that a love one has to go and leave us but glad that one of these days dad Carl will see and be with His Creator. I have known your parents when they were missionaries here in the Philippines when they were still singles. Exactly 40 years ago when I met them. I feel so happy that I have met and known your parents, such wonderful people, especially your mom cause I worked for her until she got married to your dad Carl. I believe in God and He may grant you Peace in all your sacrifices for your love ones.

  14. I don’t know that I could have captured such a tender time so well. You are courageous to share. My thoughts and love are with you and your family, Krisi!

  15. Krisi, I’m sending big virtual hugs your way. What a powerful telling of your grief and struggle and feelings and beliefs. Taking the time to accompany your Dad on his journey is both hard work and an honor. Don’t forget to take care of yourself ?

  16. Krisi,
    I’m so very sorry for what your father is going through. I’m sorry that your mom, you, and your siblings are having to navigate such a painful experience. And I’m sorry I don’t have any words of wisdom to help ease any of your pain. I love you. (((hugs)))

  17. I think your dad has made a wise decision to forgo a feeding tube. Once it’s placed, there’s no going back and patients are kept alive for months with absolutely zero quality of life. I’ve witnessed it and it’s even more prolonged and painful than what you’re experiencing. That experience has profoundly changed my views on how I want to die. I have been fighting a rare cancer for five years, so I have prepared and expressed my wishes in my living will. No feeding tube, no respirator unless there’s hope of me improving and coming off it, etc. It’s something we all should do to allow our loved ones to know exactly what our final wishes are. My heart goes out to you and your entire family. The deep love you have for your parents is so evident in your words. May God bless.

    1. Thank you for sharing Terri, I can’t imagine what that must be like for you, but I appreciate your vulnerability.

  18. Krisi, I was your mom’s roommate her first year with Music Ministry; we traveled with World Thrust. I knew your dad well but for the life of me, I can’t remember from which city, what context — Music threw us all together pretty often, but I knew him better than just “in passing.” And because I know him, I am not surprised in the least that he has been given, and has made the choice to follow, a path which proves to us again that some people make the rest of us shrink in the view of their patience, strength, honor, and not caring in the least that anyone know what they are going through. It is shallow to say Carl is a special person, a special dad. But how can he be described? One in a million? Salt of the earth? A mixture of Will Rogers, Abe Lincoln, Billy Graham and Winston Churchill? Those of us who know him, and those of you who are his prodigy, are given a higher standard, and simultaneously, grace to not have to live that same standard. Take all that he has and is giving to you, and pass it on as best you can to the ones who come into your path. I am grateful he has left you and your siblings, so that the world will be influenced by your collective spirits as a representation of Carl. The world needs who he was.

  19. Summer came to my Son’s birthday the day of your Father’s memorial. I’m so sorry to hear (and read) what all has taken place in the past couple of weeks. I love your words and can feel your genuine heart breaking, and that feeling breaks mine as well. My prayer is for peace, rest, coffee, and happy memories. What a wonderful family he had the privilege of being the head of!

    1. Hi Katelyn,

      Thank you for your kind words. There has been much rest, happy memories and coffee! I’m glad to share my story if it helps others when their time comes to deal with death.

Leave a Reply

Your email address will not be published. Required fields are marked *