Nature Strikes Back

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CARING CONVERSATIONS

This page has evolved from conversations with care assistants.

All are anonymised and edited but remain largely verbatim.

Every day and every night

she said to me:
"Please. Pray for me to die.
I just can't do this anymore.
Please God let my body go".

Many, many people are frightened of dying. One woman I cared for was terrified. In conversations she constantly reiterated her request that resuscitation be attempted. Her doctor and family decided otherwise. After the meeting where that decision was made she kept asking me what had happened. So I lied.

One man increasingly got into an extreme panic state at night because he thought that if he went to sleep he wouldn't wake up. This meant that he stopped sleeping altogether. In the end he had to be medicated intravenously which meant he then slept all the time.

Another man I knew was distraught and didn’t know what to do but not because he was scared of his own imminent death. He was much more panicked and anxious about leaving his wife alone and about the impact his death was going to have on the rest of his family.

I have a lot of reservations about an assisted dying law. I understand and have witnesssed cases in which it would be compassionate and right but I also see situations so unclear it would be impossible to universally and correctly apply such a law. It is a difficult area. In a sense the option exists already in that very ill, elderly people are often kept alive by antibiotics. If the individual has no authority then decisions are passed to doctors and family who can choose not to authorise further antibiotic treatment when a new course comes up for review. This means that the individual will almost always die of a chest or lung related infection. This means that I watch this person struggling to breathe and choking on their own mucus for about 2 weeks until they finally die. This is hard. From my point of view, it is always better to continue with the medication in such cases. At this stage the person involved will not live for that much longer anyway but when they do die, they will have been comfortable.

There is often a gap between the perceptions of the family and the reality for the individual in care. One lady I cared for could do nothing for herself. She was immobile and had to be washed, fed and looked after entirely. She could no longer communicate in any orthodox way. The family perceived this fate as utterly appalling and extremely distressing both for her and them. They would most definitely have requested her life be ended if they had a choice. However, as is often the case, I saw her more than the family saw her and I knew that she was not suffering in the way they thought. She was not in distress because she was not really in that present reality but living completely in her own mind. She was calm and I would often find her smiling to herself and she would always smile at me. She was actually a very nice person to be around.

There are love stories. One couple I knew had been together for 60 years. They shared a room in the care home until she became too sick and he had to move into his own room. Every morning, he would get up to have breakfast with her and would then sit talking to her and holding her hand all day. She eventually died and he died 14 days later. It is quite common for people who have spent their lives together to follow each other closely into death. There is a profound beauty in this.

Sometimes people know and sometimes they almost seem to choose. One man had pneumonia. He was entirely compos mentis. Told he would survive if he was hospitalised but would die in a few days if not, he just said: “Well. I've got to go sometime so I'll stay here. That's fine". A few hours later he was dead.

A lady I once cared for knew she was going to die. She was relatively well. She had no obvious condition that suggested her death was imminent but on that day she kept making a point of thanking me and when I left that night she gave me a big hug and said goodbye in a very final way. I laughed and told her I would see her tomorrow. When i came into work the next day she was gone.

The worst for us are those who we cannot make comfortable. One poor man was nil by mouth and intravenously fed. He was skeletal. Immobile and had a locked jaw which means he couldn't close his mouth so his tongue was always hard and crusty. It was painful to see him. He looked so uncomfortable and there was nothing very much that any of us could do about it.

This profession is minimum wage. It sometimes feels that our lives are as invisible as the lives of those we care for. There are never enough of us and people often just need to talk for a while to feel better. To feel they are still here. To feel validated. I really wish there were more people who could just come and talk to someone for an hour or two a week. To listen, to befriend, to validate the lived life rather than the impending death of this person. It would have a massive impact on the people I care for and on the carers themselves. So many times as I go round do on my duties I promise people I will come back for a little chat. I never have the time.

WITH LOVE AND GRATITUDE TO THOSE WHO SHARED THEIR STORIES
All images (except final) taken from
Art without Epoch
by Ludwig Goldscheider
Published in Vienna, 1937.

Final Image: Eternal kiss of the Hasanlu Lovers, 2,800 year old skeletons discovered in 1972, in Teppe Hasanlu,Iran.

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