The Will to Live, and Life’s Trajectories

I spent four days last week with my father, who’s 85, and who’s struggling a lot these days with memory, especially words and names. In the past year, he’s moved from the house he lived in for 57 years. The house my brother and I grew up in, the house my mother — the only child of a brutal but engaging Welsh railroad engineer to run away from him, after the terrible war that defined her teenage years, to the strange colony of Canada — lived her adult life in. The house she died in, of a cancer that consumed her in six short months at the age of 60, the age I’m approaching now, and which she managed as stoicly as the loneliness and depression that haunted her life. My father was with her every moment of those terrible months, as he had been for his own mother when she had died a decade earlier. After visiting my mother in the early stages of her cancer, I respected her request to fly home and not to visit her again, to remember her as she was when she was able to keep her demons at bay.

My father remarried a few years later. My stepmother was a WREN, a woman active with the navy during the final years of the war to defeat the enemy that was then raining terror down upon my mother and her family. Living a thousand miles away, I hardly met her in the years before she was diagnosed, more than a decade ago, with cortico-basal degeneration, an incurable disease that ravages the mind and body at the same time. From what I can piece together she had a terrible life, fleeing an abusive husband and raising her four terrified children alone. Her disease was the ultimate injustice. My father was pressed into nursing duty again, and tried for several years to care for her in his house, but finally had to admit her to a convalescent home when she kept falling and injuring herself. For the next seven years he spent twelve hours or more a day visiting her there, talking to her even after she could no longer speak, even after she could no longer move enough to even indicate if she knew who he was, feeding her and looking after her every need. He called it his “job”.

About a year ago, his memory started to fail, and he was also diagnosed with prostate cancer, and somewhat reluctantly agreed to move into an assisted-care facility, and give up his empty house, which he could no longer maintain properly, and his car. His new home is institutional but, as far as these places go, excellent. They make sure he takes the right pills and gets help with the treatments for his various ailments, and they offer a dining room with very good food, and drive him to visit my stepmother for three hours each day. At his insistance, we have hired a caregiver for her, to take up some of the slack of his reduced visit schedule (he’s convinced she is not well cared for at her convalesecent home in his absence). My brother and sister-in-law devote a great deal of time visiting and helping him. I’m the slacker brother, living a thousand miles away and only talking with him on the phone an hour or so a week.

To give my brother and sister-in-law a break, I’m spending a total of nine days with him this month and next, with twelve days exploring SW Australia sandwiched in between, while they’re in the UK on a much-needed vacation. Because his memory of words comes and goes, telephone conversations have become a bit hit-and-miss anyway, so I wanted to see whether our communication would be better with facial expression and body language to substitute for the missing words. I’ve discovered that it helps, but not a lot. The truth is that, philosophers and writers and voracious readers both, our worlds and lives require language to give them most of their meaning. I kind of wished we were carpenters or painters, so that we could do stuff together that didn’t require words, stuff he could still do without a struggle. I’m going to see if I can talk him into taking up some art or craft during my second visit. His coordination is failing somewhat, but it’s still a lot better than his memory and language skills.

I found two things that helped a lot. Thanks to my brilliant daughter, who gave me a scrapbook full of photos for him, I discovered that when there are visual clues, like photographs, he can find the words he’s looking for more easily. Because we have lived so far apart for three decades, however, there is no shared context for recent photos, and you can only look at old photos for so long before you start feeling like you’re living in the past. So I’m going to collect recent photos of his life, and of mine, and we’ll take turns telling stories.

When I was young, my father’s idea of the perfect weekend was to go fishing in some lake in Manitoba he had never tried before. I didn’t like fishing but I loved exploring these remote areas, some of them four hours or more away from Winnipeg, so he drove and I navigated, and when we got to our destination, he fished and I hiked.

It occurred to me that he might enjoy a ride now, and he did — scenery, like photos, seems to help him find the words he seeks. We explored the roads all along the flooding Red and Assiniboine Rivers, including some roads that were completely flooded out, and my Dad regaled me with stories of picnics and outings from his youth, and from mine, that I’d forgotten. Afterwards, we visited my uncle and aunt’s house for dinner, and I learned that my aunt is either a better listener or more intuitive than I am, since she was able to fill in the blanks when my Dad was at a loss for words much better than either I or my uncle could.

We also went to visit my stepmother one day — the first time I had seen her, other than in sad photographs, since she became ill. Now, as for nearly a decade, she’s confined to a wheelchair, and shakes a lot, and her mouth is constantly open, but she has a lot of facial expression, and looks remarkably healthy for someone who’s been bedridden and locked inside a body that is no more than a terrible prison for her, for so long. I believe that, if I were in her situation, I would choose to simply stop swallowing food. That’s the choice I’ve been told another uncle of mine made when he died last year, and since we (my family) all have stated clear preferences for no resuscitation and no tube-feeding if/when we get to that stage in our lives, it is my guess that she is not in a lot of pain, and she is eating because she still has the will to live.

My theory is that, at this point in her life, she is staying alive only out of love for my father, in the belief that is what he wants of her. I find that thought overwhelming.

Another thought that occurred to me often over the last four days is how much I’m like my father, and how much the vector of my life, and of his, have been the same. We were both the nomads in our family, the writers, the readers, the philosophers, the hopeless idealists, the radical leftists. My father is an honorary lifetime member of an organization called Junior Achievement, that helps young people learn entrepreneurial skills. I spent most of my career helping entrepreneurs, and now have published a book on that subject. My father wrote a book but never found a publisher, and my success as a writer is one of the greatest joys of his life. He also received great vicarious pleasure that I followed his advice not to go into the ‘family business’ (he spent his life working there, unhappy and unfulfilled) — that I succeeded on my own merits, and that my children are doing the same. He taught me to be self-confident, to question and challenge everything, and that if you have that self-confidence you can do anything you want to. I have tried to pass along that simple wisdom to my children.

Now, when I hear myself talking to other people, it is my father’s voice I hear — his tone, his expressions, his vocabulary, his hesitations at forgotten words and names (I’ve always been terrible with names, and I’m relying more and more on my blog as my ‘extended memory’). I am constantly becoming him, and that infuriates and terrifies me. Ironically, or perhaps perceptively, he absolutely loved the ee cummings poem I read to him, and I am going to print it out and frame it for him:

My Dad is aware that my marriage has ended, and when I told him about it he predicted that I’d remarry, but I get a sense that he appreciates that, in some important senses, ones he greatly appreciates and admires, the trajectory of my life and of his have diverged. More than anything else, that is probably due to his counsel and my observations of some of the things that he’s done that have not made him happy. He has no regrets (he told me yesterday), and if he had his life to live over he’d do nothing different.

In these visits, he will take the opportunity to do one more thing for me, and for his family — to show us, through a life lived well, and generously, and fully, in accordance with principles from which he never wavered, how to be different, not only from everybody-else, but from him as well.