PimAfter participating in the Osho Sammasati Facilitation workshop in Pune of February this year, my life took a new direction. Instead of continuing to work in the local hospice, where I had also taken on more organisational tasks, I decided to focus on assisting people dying at home. After an eight month-long training in basic nursing skills, I joined a palliative-caregivers’ team in Leiden, here in The Netherlands.

My first assignment in early April concerned a fifty-nine-years old woman who had just returned home from hospital. The doctors had informed her that they were not able to do anything more for her; she was not expected to live longer than three months. Even though she knew this, she didn’t want to hear anything about dying. It was not a subject to be discussed with her or with her family. ‘I’m not going to die,’ she had insisted.

A mother of two sons – twenty-five and nineteen-years old – along with her husband she lived just a ten-minute cycle ride from my house. In 2008 she was diagnosed with breast cancer followed, in 2016, by uterus cancer. Now she was diagnosed with peritoneal cancer. Assisted by visiting nurses, most of the time she was cared for at home by her husband and sons. Her bed was downstairs in the living room, the family dog constantly at her side.

I was quite nervous about taking care of a person dying at home on my own and not being backed up by the safety net of the hospice. I didn’t quite know what to expect and whether I was capable of this task. I checked with the coordinating nurse and was told not to worry: I just had to help the family through the weekend. In the days to follow, the family doctor would come and a plan would be made to give her the best possible care for dying at home.

So I arrived Friday evening under the impression that I was to support her and her family during the nights. Her husband had been with her in the hospital for the last two nights and was relieved to have some help as she was having panic attacks at night. Her sons, however, immediately let me know that they were able to take care of their mother by themselves as they had in the past. They would be grateful if I would tell them what they could expect and then go home, returning on Monday. Here I was, in this family I didn’t know, that had two different needs.

I could feel the tension between the father and his sons. What to do? I went up to my client (I shall call her Anna, touched her arm and said who I was. She seemed asleep and looked as if she were in the last few days of her life. When I touched her upper arm to let her know I was there for her, she nodded very slightly and her face showed a little smile. I noticed her body relaxing and she sighed. The dog welcomed me as if I had known her for years. Then I went back to Anna’s husband and sons and I told them what they could expect during the night. I was honest with them in my observations of their different needs. It was up to them if I was going to stay or not; they had to figure that out among themselves. I offered them a third alternative, that I go home and be on standby in case they needed me. They all felt good with that last proposal.

I was home by midnight and had just got into bed when I got a call from the oldest son: ‘Can you please come? Mum is in panic and can hardly breath. We don’t know what to do.’ I quickly got dressed, packed my stuff and cycled back to them. As soon as I entered for the second time that night I knew I was welcomed by all. Looking back I can see that from that moment on we were a team in which the different qualities of each of us came together in guiding Anna to let go of life. We trusted and appreciated each other for who we were.

I learned that Anna had been afraid to suffocate and had panicked. As a consequence, she had more difficulty breathing. So far they had given her morphine nose spray to calm her down; that worked within minutes. There had also been a dispute between the father and the oldest son, which had increased the tension in the home. With the father going to bed the situation had calmed down… and so had Anna.

With the others in bed I lay down on the couch next to her. I had promised the oldest son to wake him up if his mother asked for him. During the night Anna often made an ‘Ahhh!’ sound and gestured with her arms towards her breast: every time I went up to her, touched her upper arm and let her know I was there. It relaxed her. She said she wasn’t in pain, but when I asked her if she was afraid she whispered ‘yes’.

Her son, who came in the night, said she was afraid to suffocate. After knowing that I reassured Anna that we had medication set aside to prevent that. Then I asked her if she wanted to follow my voice in relaxing the body, which would help her to relax her breath too. She nodded ‘yes’. I also told her I was with her the whole night, giving her whatever she might need.

She was very thirsty. She tried to sip from a cup of water but couldn’t swallow anymore. I gave her a wet face cloth to suck on and that worked out well. ‘Oh yes’, she said ‘more, more’. Her lips were dry and I put some Vaseline on them. She was noticeably perspiring so I gently applied another wet cloth over her arms and face. Every time we connected I saw a soft smile appearing on her face and she relaxed in her body by putting her arms down and breathed a bit deeper.

And each time I saw Anna struggling in this process of letting go, I felt so much love moving through me – love for her, for her sons and for her husband. She only uttered a few words and it was more from her gestures that I could see how she was doing. When I had wet her arms and face again she suddenly announced that she was going to tell me more about her husband the next day. I had noticed that as soon as her husband came close to her she became restless and when her oldest son would come close to her she relaxed. It looked as if her husband couldn’t sense what his wife was going through and what she could or could not cope with. Even though his intentions were good, he had a loud voice and clearly his presence was too much for Anna at this moment in the dying process.

*

When daylight entered the room, I made a cup of tea and when Anna’s husband came downstairs and joined me in the kitchen he opened up about what was happening for him. He mentioned how difficult it was for him to see his wife breathing with her mouth open. And the dying process was all going faster than he had anticipated. They hadn’t discussed anything around her dying. He didn’t even know if she would like to be buried of cremated. Each time she became restless, he was afraid and wanted to know what to do.

I explained that her hearing sense was highly active and suggested it would help her if he lowered his voice and talked more softly to her. He didn’t need to do anything but just be there for her: sitting at her bedside, holding her hand … or just being with her. At this moment of dying she was so sensitive that she was probably picking up every vibration: if he was calm it was likely that she would be too. I also advised him to keep the medication to a minimum as more would take her into a more unconscious state and the youngest son was hoping for a last conversation with his mother.

For the next day and night, the divisions of the tasks arranged themselves organically and the atmosphere in the house became softer and softer. Anna’s husband was taking care of the medication and had arranged for a low-air-loss mattress, which was much more comfortable for her. Anna’s sons were by her bedside at intervals, wetting her face and lips and applying some moisturizing gel on the inside of her mouth. During the night I was there assuring her she was not alone in this process. Gradually she became weaker and weaker. Her temperature dropped slowly and her arms and legs became colder.

During the third day the visiting nurse called me to say that she had the impression our patient would die in the coming evening. At their home by the evening, I sat down with the two sons, the husband and the dog on the couch. Anna was in the bed in the same room with us. The youngest son said he was relieved that he’d had a chance to talk to his mother that afternoon. They way he spoke about his mother made me interested to know more about her. In response to my asking more about her — what kind of a woman she was — they all lightened up and gave me a beautiful image of the mother and wife she had been. Her husband showed me all kinds of pictures of the four of them. Speaking softly now he recounted some of the family stories in which she played a heroic role. I could see that she really had been their inspiration.

While we were talking Anna participated in the conversation by gesturing from her bed ‘I am not going to die yet, guys!’ as one of her sons interpreted it. She continued to be a fighter for life as she had been for the past nine years. The husband and sons all knew she was dying and she was still fighting against it. Was it my job to have her accept that she was dying? At that moment I didn’t know how to handle such a big question and didn’t address it.

After our conversation we all made ourselves ready for the night. The father and the oldest son went to bed, the youngest son staying with Anna a little longer, holding one of her hands. After some time, not being able to sleep the oldest son joined us, sitting by his mother and holding her other hand.

At one point one of the sons said he felt her hand transpire heavily and the other acknowledged the same. In a Buddhist book I had read that this could be a sign a person was close to dying. I was standing at the head of her bed, looking at her chest to observe her breathing, which was becoming weaker and weaker. I heard myself say ‘She is dying right now, boys’. They were even more lovingly to her — bowing to her and saying  ‘Bye bye beautiful mum. We love you so much.’

I informed their father of what was happening and soon she was surrounded by her three men. Then within minutes, her breathing slowed down further, becoming more and more shallow until it finally stopped. With her breathing out her last breath, it seemed we all held our breaths; no sounds, no movements, no thoughts, no breath. I was in awe, as if time stood still. It was just like the experience of the ‘Awareness of the gap in the breath’ meditation that Maneesha has taught me. We were all in the gap.

Anna’s husband was the first one to break the silence, saying he was relieved that she wasn’t suffering anymore. The men all held each other firmly and said they were going to stick together. I started to light candles and make tea. All of a sudden the doorbell rang and the doctor on duty had arrived to check on the situation. After he had checked her heartbeat and closed her eyes, he went to her husband and sons and offered his condolences. He completed the necessary paperwork and left.

I wanted to leave as well as the three men had had so little time to be together with her alone. When I cycled home at two in the morning there was nobody in the streets. It seemed as if the world had stopped… as if the silence at the moment of her dying continued while I made my way home…and I, a witness of it all.

Red autumn leaves on bench

3 Comments for Dying at Home – my first experience


  • Sumano

    Thank you for sharing. Love


    Reply

  • Ruchi

    thank you for this very moving story


    Reply

  • Rupa Fitz

    Beautiful beautiful.


    Reply

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