I see more and more that in his last weeks, and even months, he was merely existing, waiting to go ... even though I was concerned about his quality of life and arranged pleasant moments. He was in bed a lot, lacking energy, reluctant to move around because it was painful, and just plain sleepy much of the time. (A friend warned me last year that he would end up sleeping more and more towards the end, and so it was.)
Pleasant enough it may have been at some times, but only in his dementia did he gain a sense of purpose to do with this life here. Then, inspired as he always was by great things others were doing, he would want to visit schools and show the film of 'The King's Speech', which moved him deeply and which he would watch over and over again. Or he would want to go and visit the Prime Minister to put her straight on some of her policies. Or to involve me in creating a newsletter, with old-fashioned methods of layout, so as to present new ideas to the world.
Sometimes he would try to go to the WordsFlow writing group. 'I have to,' he would tell carers. When he was in the first nursing home, he worried the staff by getting very agitated about having to get there. Yet it was I who decided, early this year, that he couldn't come any more, after one dreadful afternoon when he couldn't stay awake and there was nowhere for him to lie down but our car. I laid the seat back and parked it in the shade, and he had water — but even so, it was three hours he had to be there! Just not acceptable — not to me. And he had not really been able to participate for a few months. It breaks my heart now, though, to think how much he wanted to be there when it was no longer feasible. (I myself had to be there. I am the group's Facilitator.)
Even in what I now recognise as the very, very early stages of his dementia, when he joined the Neighbourhood Centre's Management Committee, he did it with a view to improving the world. He didn't grasp the nature of that committee work, to do with the running of the Centre. He wanted to use it as a platform to rescue our deteriorating foreshore, stuff like that. Worthy aims indeed but quite outside the province of what he'd signed up for. So eventually he realised that and resigned. It was just typical of his burning desire to make a difference.
In those last many weeks, my thought was to find activities he could still enjoy. He couldn't handle the stairs at the movies? Then I would bring the movies home on DVD. He couldn't get out and about and meet with people? I made sure the caregivers' organisation knew he needed respite carers who could make intelligent conversation. (He and they did enjoy conversing with each other.) I searched the library and the second-hand bookshops for authors I knew he liked. And these things did provide enjoyment. But after all, enjoyment was not enough for him. He wanted to be fulfilling his purpose. I trust that now he is.
His daughter said that recently she seemed to have a conversation with him (cautious about stating absolutely that this was so). She said he told her he was helping young people — a thing he did in many ways during his lifetime. She thought he meant he was helping children who died to cross over without trauma or confusion. And he referred to some other work he was doing too, but she wasn't clear what that was. Then he suddenly said, 'Gotta go. They're calling me' — so typical of his suddenness and abruptness in life, that it made us both smile.
The things I thought I was doing for his wellbeing were actually not what he most needed and wanted. He wanted to be of service. He needed to move on.
(I need to move on too, despite reluctance. These writings are one way I hope to accomplish it.)