This is a personal story, and it does have a moral, that we all may need a Plan B. When I was born, in 1937, my male age-cohort had an average life expectancy of 65 years, the girls 68. I retired at 65, and that was in 2002, seventeen years ago. In my head, so to speak, I am ageless, but if you press me, I will say that I feel about 37 — old enough to know how not to repeat past mistakes, and young enough to be able to do most things that I did when I was twenty. That was the case until a few months ago.
In 1991 I fell in love with, and married, the woman who had run the hospital ward I was in after the excision of a large melanoma on my leg. We were both refugees of failed marriages, had never met until I went into hospital, and wanted to build a new married life together. One of the first big things we did was to buy a house, which we later renovated and extended. She retired shortly before I did, and for ten years or so thereafter we had the sort of life that you see in the ads: we were physically active, travelled overseas, spent a good deal of time at another house we had on the south coast of New South Wales, and generally enjoyed ourselves. I became chairman of this and that, the roles you are likely to get if you’ve had the sort of life I had enjoyed.
Around 2012, when I was 75 and she was 70, came the first signs of possible trouble, though neither of us identified it as such at the time. She wanted to record television programs for later viewing, so I bought the appropriate gadget. No matter how I tried, I could not get her to learn how to operate it. Even a clear set of written instructions did not work. In the following year she stopped working on a project we were both doing, because she found it too difficult. Skip ahead another year, and she decided not to play bridge any more, yet she was highly ranked in our club. Her partner had moved away, that was the reason, and she didn’t want to learn a new partner’s style and strategies.
By now there was something plainly wrong. She would sit in a chair and stare into nothingness. ‘I’m not right. I’m just wrong,’ she would say, and we commenced a long series of tests, for heart, stroke and the rest. Finally I twigged that the problem was in the head, and another series of tests produced a finding of ‘mild cognitive impairment’. This is the beginning of dementia: your brain is receiving and/or sending scrambled messages; you are liable to forget something you have just heard, you will have difficulty in assembling information into a sensible whole, and so on.
We do not know a lot about dementia, but its incidence is growing as the population ages. My wife knew something was badly out of kilter with her, and she had run a ward for geriatric patients at the end of her service as a nurse, so she knew quite a lot about dementia. Nonetheless, the diagnosis was a shock to her. We grew much closer together, if that were possible, because I became through necessity the ‘Bub’ — the ‘back-up brain’. And the diagnosis led us to plan for our future: since dementia worsens slowly as you age, we ought to consider moving to an ‘independent living unit’ close to a high-care dementia unity. Canberra has several of them, which we began.
Finally we put our names down for a new development that would be ready in a year or two, with a high-care unit to come in the early 2020s. More, we managed to get exactly the floor plan and the elevation that we wanted. We then spent weeks working out, with a measured plan, which items of our furniture would come with us, and where each would go. It was enjoyable, and while we loved our house, which we had owned for twenty-five years, the new development grew in our minds, and raised the excitement level. We chose our real estate agent, fixed an approximate time for the sale, and went ahead with our planning, visiting the new development every week or so, and meeting the other future residents at meetings organised by the development’s owners.
After tennis one morning I felt a soreness in my back that had not been there previously. I was to see my chiropractor in that week for my three-monthly visit, and told him about it. He felt and prodded, and said that I should have an X-ray at once, and he would wait for the results and tell me what they were. This was most unusual, but he wouldn’t be drawn further. At dinner-time he rang to say that I should see my doctor, at once; there was a problem. Alarmed, I managed to see my GP late on the next day. He saw the results and said I should see a haematologist whom I had seen once before. All this was happening at a fast speed. The haematologist told me that I almost certainly had a bone-marrow cancer called multiple myeloma, and the faster I went into chemotherapy the better. I also had a compression fracture of the spine and osteoporosis. I was indeed not well, though I didn’t feel especially sick.
That was in July 2018. I tolerated the chemotherapy well for several months, and then fell really ill with a catastrophic collapse of my bowels. That put me into hospital, and gave me the highest possible ACAT rating (the Aged Care Assessment Team provides a summary of how ill you are, and whether or not you need a nursing home). After two weeks in hospital my wife and I moved into ‘respite’ at a nursing home. By now I had lost nearly a third of my body weight, and looked rather like a WWII survivor of a Japanese POW camp. I was weak, and unable to do much. As time passed it became clear that I would not be able to function in an ‘independent living unit’, and we were able to extricate ourselves from the new development we had planned as our next home.
What then? The nursing home became our home while we looked for alternatives. One of them would not allow us to have a double bed, so that one fell through. Finally, we chose to stay where we had been since November last year. We were very lucky, for a variety of reasons, and have been able to acquire a second, sitting, room adjacent to our bedroom, which allows me space to write, and provides a home for some of our art, books and CDs.
And while I am still awfully weak, the signs are good. The blood tests show a considerable improvement in my body’s fight with this cancer, and a recent biopsy put me close to the top five per cent: ‘Very Good Partial Remission’. So I fight on, gain a little weight, get stronger, but all of it slowly. What we have and where we are was not part of our Plan A at all. But it works, and we have adjusted to it. Before the cancer I was full of confidence that we would be OK in the new development, and even after it I was pretty sure that I would be right when we needed to move in. Our kids were much less sure, and they were right. We ought to have had a real Plan B. What it would have been was a nursing home, a possibility I had not really considered.
The Liberal/National coalition has another four years to govern New South Wales. I’ll write about that outcome in my next essay. The data will be better then, too.