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.