JJ: Journey’s end

Mr Kidlung passed away peacefully at 12:30pm today, Saturday.

For many of you this may well be all you need to know but, for those of you who would like to know, here follows a more detailed account of his last few days with us.

In our last post on Wednesday, I reported that he was very weak, mostly in bed and that his speech was very difficult to understand.

His daughter came on Wednesday evening and has been staying almost continuously since then.  It’s been very meaningful for our mother and me to have her here. Mr Kidlung seemed happy to see her – when she first arrived he reached for her hand strongly.

On Thursday old friends came to visit, but for the first time he did not really rally for his visitors and only came downstairs briefly. He slept for most of the day.

For Thursday night and Friday Mr Kidlung had more energy. His speech was stronger and clearer and his eyes were open more often. It was lovely having the opportunity to talk to him more at this time. I was able to thank him for his kindness to me and tell him that I loved him. At one point he even expressed an interest in beer and drank a very little, saying that it tasted good.

He was, however, still not perfectly orientated and sometimes caught up in dream stories. As he described it on Thursday morning “My brain is fucked”. Usually he would say “probably” if I suggested that something was probably from a dream. He said to me once “Is there something wrong with that chair in the corner? Should it be there?” I reassured him it was right where it was and had been there a while. “It’s like that”, he said, “Everything feels wrong”.

Although he would often complain about the syringe-driver box hanging in a bag from his shoulder and delivering morphine etc. to him, he would remember when we reminded him. Amazingly, he would also remember that he had forgotten about it and been reminded many times before. He even laughed about this once! “It comes back with an ‘Ah'”, he said.

We often asked him if he was in pain when lying down and he would generally say no, or that it was only an “unpleasant discomfort, same as unsual”. It clearly hurt when he moved, however, and the pressure sores at the base of his spine began to trouble him, so we increased his morphine levels on Friday morning and again in the evening. After that pain ceased to be an issue.

Throughout Friday Mr Kidlung demonstrated some of the restlessness that can commonly occur in people who are close to dying. Every hour or two he would want to sit up, holding out his hands asking to be pulled upright and his legs swung out of bed. He would then sit on the edge of the bed but the purpose wasn’t clear to us and may not have been to him. Sometimes he might agree to lie back down after a bit, sometimes he would sit on a chair for a few minutes, sometimes he would go to the bathroom.

Mr Kidlung was helpful and agreeable throughout his time. He might get a  little frustrated if we couldn’t understand him and he didn’t like being fussed with, or hovered over closely in the bathroom. But if we asked him to do something or encouraged something he would do it. Many times he would express concern about some task or other, but if we reassured him that he had done all he needed to do and everything was fine, then he would easily accept that.

In the early hours of Friday Mr Kidlung was shaving himself in the bathroom when he said to me “I don’t know how much longer I can go on like this. I feel so ruddy exhausted. I thought they would just increase my drugs to the point where I’d drift off in a haze.” When the GP visited at lunchtime on Friday, Mr Kidlung asked him “What’s the longest you’ve know someone go on like this for?”. Dr Muir reassured him that it would just be a few days at most.

On Friday afternoon we decided that with such restlessness he was perhaps not as calm as he would like to be. Therefore we followed the advice of the GP and hospice and, with Mr Kidlung’s consent, added a little extra sedation to his drug cocktail. This wasn’t an easy decision, as it felt close to choosing to silence him permanently. It was in fact the hardest part of the whole process for me, the most emotional point since first hearing about his cancer.

The effect was anyway not dramatic and, though his speech became weaker on Friday evening, he continued to have bursts of activity. Kristoff, a lovely Polish carer from the hospice, came to spend Friday night with Mr Kidlung so that we could sleep soundly through the night (I had been awake looking after him almost all of Thursday night). It was an unusual experience for Kristoff, as people near the end of life are usually much more bedbound. I heard Mr Kidlung exchanging words with Kristoff, perhaps getting up for the final time, at about 4am.

When my mother, sister and I came to sit with Mr Kidlung at 7:15am on Friday morning, he was soundly asleep. His breathing seemed changed, which Dr Muir had warned us would be the next step. As well as the classic ‘death rattle’ where saliva bubbles in the throat (odd sounding but not uncomfortable) his breathing seemed a little difficult and he would make occasional movements as if to try to ease it. We moved him a little to a slightly more upright position and that seemed to ease it.

Mr Kidlung did not waken when we moved him, so we began to expect that he would probably never wake again. I phoned his mother and let her know.

At 12:25pm Mrs Kidlung and my sister were sitting with him. They heard a rattly sound from him and then he seemed to stop breathing. Mrs Kidlung fetched me and we spent some puzzling minutes trying to figure out if he was still breathing or even had a pulse.

With wonderful timing, a pair of district nurses then knocked on the front door . They were able to quickly confirm that Mr Kidlung had passed on and gave him a final wash and brush of his hair.

The end was swift, painless and peaceful, exactly as he wanted it. We find ourselves both happy and sad, crying and cheerful. I have every confidence that we will be well and to me we feel very close as a family at this time. My sister’s husband has just arrived this afternoon and my partner will be here shortly.

Mr  Kidlung did not wish for a sombre funeral but envisaged a celebration of sorts. We’ll post more about this after some days. Thank you for all your love and best wishes, both for us and for Mr Kidlung.