IN THE TWILIGHT ZONE ON BORROWED TIME

The day before yesterday in the late afternoon Titien had a breathing rate of 35 breaths per minute while lying down. According to Wikipedia, 12-18 is normal for adults. It became better in a sitting position. She wanted me to stay with her and not get on my road bike on the balcony to pedal on the bike trainer for an hour.

Maybe she already suspected what I didn’t know: this was our last afternoon together with her in full consciousness.

Titien wanted her medication for the night earlier than usual: I use an egg cup and wine bottle saver as mortar and pestle to turn the antibiotics to powder to get it down the feeding tube. Diazepam for cramp relief, muscle relaxation and to be able to sleep better. Novalgin to prevent pain from coming through in the first place. Pregabalin to treat nerve pain and to prevent possible epileptic muscle contractions. Laxoberal to support the peristalsis of the intestines.

Mix all ingredients in a glass, add water to taste, suck it up a 100 ml syringe and put it into the PEG (Percutaneous Endoscopic Gastrostomy, vulgo stomach tube).

Then, at her request, move the patient from the nursing bed to our double bed. Despite the height-adjustable headboard, Titien immediately begins to gasp for air in the supine position. I help her sit back up; her breathing normalizes. I slowly let her slide back onto the pillow – gasping breathing begins.

Back in upright position and sit behind her to support her. My shoulders, body, arms, legs and hands are bigger and wider than hers. I embrace her completely and try to give her security. Her breathing normalizes. I prepare myself for a long night.

Titien is not well. I convince her to take morphine to relax her breathing. As the evening progresses, I need to lean her back less and less for her to start to have faltering breath. I am worried that we will not make it through the night. I call the emergencies shortly after midnight.

A doctor and three nurses are standing in our apartment. My general power of attorney, her living will, the medication plan and the most recent doctor’s letter are read and checked. I also repeat verbally that we do not want her to be brought to the hospital and be intubated there.

Titien’s pulse and oxygen saturation gets measured with a portable device and I get some advice on the correct positioning of the patient before – somewhat anticlimactically – the further procedure is announced: please place one Tavor 1 mg melting tablet in the cheek pouch and continue in sitting position, now back in the nursing bed.

I will give her 10 mg morphine later that night and sit with her until the morning and hold her. Her breathing remains shallow, her eyes closed. At some point I lie down in bed and sleep for an hour, too.

I wake up at seven, her breathing remains shallow. She does not respond to me addressing her, even the fingers of her right hand, which she had used the day before for communication, do not move anymore.

I lift her head and her eyes open. I ask if she is sitting comfortably. She blinks once with tired eyes. That means yes and that is the last answer I get from her.

Now she’s asleep. I sit next to her and hold her warm hand. I tell her the story of our lives. She can still hear me.

After the long night
You now breathe again
Only when you’re lying like that,
Teetering on the edge.

Your eyes are closed
But there’s still a crack
From below I can see
That you’re already looking further.

Will you be taken away?
Or will you go quietly by yourself?
Your breath will tell

After the twilight,
At the end of the borrowed time
I’ll stay here alone.

27 Replies to “IN THE TWILIGHT ZONE ON BORROWED TIME”

  1. Dearest Tobias, Praying for God’s merciful and loving arms to embrace and comfort you and Titien. My heart aches.

  2. Tobias, my thoughts, prayers and love are with you and Titien. The journey you’re on is not an easy one. All I can tell you is that the memories and moments will help guide you through. My love left many years ago. We had our lives planned out but his death meant that I needed to find a new way to go on. My heart is with you my friend ❤️

  3. Prayers for strength and comfort during this most tragic time. May you both feel God’s comfort as Titen prepares to see her beloved Lord and Savior 🙏. Tobias you are such an inspiration of what love truly means. So sorry that you have to go through this. May God sustain you as you continue to care for her.

  4. Tobias my thoughts and Prayers are with u both tell her we luv her in Missouri USA and know that even after Titien is no longer with us we still want to hear from you and let us know how you are with Gods blessings we pray for you to find comfort in knowing shes going to be fine you have been incredible thru her journey just continue to tell her u luv her and letting her know you are with her a person can still hear up to 10 mins after they pass according to my home health and hospice training

  5. As I wait each day for updates I think of Titien and I know that time now is precious and that you are keeping Titien comforted. Tonight I spoke with a friend of mine and I shared Titien’s journey and your beautiful love story. Tobias, I watched as my brother-in-law took care of my sister in her final days. It has to be one of the hardest things you will do but one of the most beautiful signs of your love for each other. Take care of yourself and know you and Titien are in our thoughts. Be at peace with your sweet Titien and tell her we love her and will always keep her in our hearts….💞 🌿🐦⚘🙏

  6. You are both Amazing souls and it hurts so much to see beautiful people to be separated… praying for miracle ❤️❤️❤️

  7. Our hearts are with you both.

    Such beautiful and courageous writings. The music in this post, sublime.

    Love you Titien. Love you Tobias.

    You are not alone.

    💔❤💛🕊

  8. Thank you for letting us know, Tobias. It takes a lot of strength and courage for you to post this. we pray that God alone will give His power and strength for both of you in this moment.

    Tobias, you are doing great! Thank you for showing us of true love. Take care of yourself. And, know that we are here for you.

  9. Thank you for sharing Tobias. I continue to pray for you and Titien each day. It was heartbreaking to read about the decline in her health. Although there are no right words of solace, I pray knowing that so many all over the world are thinking of you two gives comfort. Please read Titien her replies. Love and hugs from Virginia, USA.

  10. Dear Tobias,
    I m very saddened by this news . Mo words can heal Temporarily this Tremendous loss . I need to tell you : You are an extraordinary Man . I feel tremendously sorry For both of you . Please accept my condoleances to You and Your related Families . May Titien rest in peace. You Have been and Still are An example for many Of Us . Gianfranco

  11. I can’t imagine what you are going through Tobias and I pray that God will continue to comfort you and your beautiful wife! I will continue to pray for you guys and I want you to know what a selfless man you are and how lucky Titien is to have you and you her.

  12. Tobias, my heart is breaking that Titien at this point can’t tell you goodbye and say once more what you have meant to her. You are an amazing person and there is no question that you were meant for Titien.
    I pray that just before she surrenders to The loving arms of Jesus, she is able to acknowledge your always loving arms.

    I do have a question, perhaps I read this and do not now remember. Are there plans for your or Titien’s family or friendsor to be with you at all during this time? It is and has been forever clear that the biggest need is for you two to he together.
    All day, I Pray for a Healing in the way our Lord deems best. It is more than devastating that our preferred and selfish healing will likely not happen.
    Sending love and prayers of Heart strength for you both as well as physical strength for you as you hold Titien close enough to last you until she can smile with her beautiful smile and welcome you into her arms.
    As always, I have only Prayers.
    Sue Brewer
    Dallas, Tx, USA

  13. Tobias,
    There are no words that can ease this situation, but know that many people around the world are thinking of you and praying for you. You are a wonderful husband to Titien, and you two are a special couple. Peace, love and comfort to both of you. When the time comes, may Titien’s spirit fly high and free, she is such a beautiful soul. I’ll be praying for you Tobias, and for your continued strength.
    Prayers from Los Angeles. ❤️❤️✨✨

  14. The both have been on my mind many times over the last two days- I wondered if this was the situation there.. I worried it was.
    There are many people here thinking of you both, sending our strength and care.
    ❤️

  15. Tears obliterate my words. Little did I know when I first met you about 30 years ago what a wonderfully kind, compassionate, devoted and amazing human being you would be. I’m so pleased you met your soulmate and shared your brief time together. Your memories of the love you shared can be cherished for ever. Bless you both.

  16. Thank you for this Tobias. We love you and our heart breaks for you guys. Please tell Titien how much we love her and let her knoe we are praying for you guys every day. Please let us know if there is anything we can do for you. Hugs and kisses from us.

  17. I check on you and Titien daily through your blog to see how you’re both doing. She and you are incredibly beautiful souls and Titien has faced this journey with absolute beauty and peace. You both are amazing. May God bless you continuously and may Titien’s passing be filled with peace. I’m sending love to you both from New York. ❤️

  18. My thoughts & prayers are with you, Tobias & Titien. My name is Catharina. I met you both once in 2018 when you visited Beijing. It was Ka yan who introduced me to Titien. After since, I often lift up my prayers for Titien & you.

    Tobias, you are awesome. You are the living proof to this fallen world that faithfulness & love still exists.

    You do keep your marriage vow, “…to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death do us part.”
    With all negative things that poison marriages, such as divorce & affair, your testimony will surely be the antidote.
    May God comfort & strengthen you during this darkest moments. May He give you hope of eternity & resurrection.

    Titien, you’re a real hero. Thank you for standing strong during this hard time, for giving unforgettable memory about your life, and legacy about dipg awareness. In the end of mortality, I want to quote 2 Timothy 4:7 “I have fought the good fight, I have finished the race, I have kept the faith.” Till we meet again in our Father’s home called heaven. May you go held in His arms peacefully. We’ll always love you.

    ~Catharina, Indonesia~

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