One day a year ago, my father found my mother lying on the floor where she had fallen. Her collarbone snapped when she fell, an entirely predictable consequence of her combined ailments – Parkinson’s disease and osteoporosis. Something else appeared to have broken in my mother as well, however. Confused and fearful, she took to wandering from room to room at night, looking for intruders. My father, 80 years old, felt helpless to deal with the rapidly deteriorating circumstances of their lives.
Since then, my husband and I have moved back to Texas and now live down the road from my parents. During the past nine months, my father has had three operations, including a triple bypass. Between the two of them, they have seen a total of 12 different doctors over the past year. I have become an expert at reading medical statements.
My parents wanted to cause their children as little trouble as possible. Since I am the executor of their wills, I have a key to their safety deposit box, and know where to find their insurance policies. I was present when they planned and paid for their funerals. We had all prepared for death. What we hadn’t prepared for was decline. I needed a crash course in what is almost as inevitable as death – caring for aging parents. Kubler-Ross may have taught my generation the five stages of grief but no one had told us about the long goodbye.
I am not alone in facing this largely-ignored crisis ignorant and unarmed. For unless you are an orphan or thoroughly estranged from your parents – and those of your spouse – the chances are that you’ll be facing such a crisis sooner or later, if you haven’t already.
If you doubt this prediction, poll your own friends who are over 50. You will probably be as surprised as I was to discover how many of them are already wrestling with this problem. Thirteen million Americans presently care for their aging relatives in their homes. Thus, I figure that the number of people who have made major changes and spend a good part of the day helping with aging parents is at least twice that large. I also suspect that their new role came to most of them as a complete surprise.
Very few parents, I suspect, actually sit down with their grown children and talk about what’s going to become of them when they get old and infirm. Very few children are willing to face, much less force, the issue with their parents or their siblings. And not simply because they fear being thought insensitive. What we fear goes much deeper. Parents – mothers especially – are the oldest things we know about the world. They are an archetypal necessity in the structure of our universe. When they begin to weaken, we feel the foundations tremble.
Faced with our parents’ inevitable decline and mortality, we must choose then between causing pain by broaching unpleasant realities or conspiring in the dangerous illusion that everyone maintains good mental and physical health until the moment we draw our last breath.
But making the hard choice gets even more complicated if we must take into account the wishes and fears of our siblings – and perhaps those of our parents’ siblings as well. Finances, geographical proximity, accrued family history, spouses, and jobs must all be factored into decisions. And for the child who volunteers or is elected as the care agent, always and at bottom lies the daunting prospect of an open-ended commitment that could last for decades. Middle-aged children remember all too clearly what it’s like to be tied to toddlers and teenagers. The care of an ill and elderly parent could rob them of their last chance at personal freedom.
On the other hand, we may remember how our grandparents were cared for within the extended family. Perhaps we’ve seen our own mothers take on this responsibility. Don’t we owe them the same consideration? If they could do it, why shouldn’t we?
Remarkably little is said about old age in the New Testament, perhaps because so few of the chief players survived that long. The Gospel of Luke shows us Anna and Simeon, both exemplars of messianic hope, surviving into old age. Jesus’ own dilemma about what to do with His mother must have dogged Him throughout His earthly career. He was at pains to tie up this domestic loose thread, even as He hung dying on the cross.
Though the early church made provision for elderly widows, it was in the early Middle Ages that monasteries began to establish infirmaries for indigent old people. Some parishes provided pensions for the elderly. But as successive assaults of the bubonic plague carried off disproportionate numbers of children and young adults, the demographics of Europe became distorted (much as our own population will be in the next few decades by aging baby boomers).
In less than 20 years, from 1975 to 1993, the number of Americans over 65 who live with their adult children declined by half, dropping from 18 percent to less than 10 percent. There are doubtless many reasons for this decrease, from the improved health of older Americans to the number of two-or-more-job households. Nevertheless, a third of the over-65 population live entirely alone. One might expect the older that people get – and thus the more help they need – the more likely they are to live with one of their children. Just the reverse is true. If you make it to 85, the odds of your living alone jump to one in two.
I have noticed the tone of pride and satisfaction with which middle-aged children in America announce that their 80-or 90-year-old mother “still lives in her own house,” as if voluntary isolation were the pinnacle of geriatric heroism. In other parts of the world, however, people would find this arrangement both strange and shameful. At least until the last couple of decades, three-quarters of Japan’s middle-aged children cared for their aging parents in their homes – almost eight times the rate in this country.
Independence. Autonomy. Isolation. On this unstable trinity the lives of older Americans are precariously balanced. But if you live long enough, independence inevitably becomes an illusion. You can no longer keep up with the yard work, so you move to a condominium or even a retirement center. You can’t see well enough to drive anymore. The checkbook gets tangled in knots, the medical maze impossible to negotiate. You call the pharmacy, and a computerized voice gives so many instructions about pushing phone buttons you hang up in despair.
Seeking help with these mundane chores of living means surrendering control as well. If you ask others to take you to the grocery store, you must fit your shopping to their schedule and supermarket preference. Meals on Wheels delivers unfamiliar dishes. If your daughter volunteers to clean your house, you can’t point out the dust she missed. After a lifetime of doing and having things your own way, you may have to work at feeling – or even faking – gratitude.
Of course, the fear of losing control of one’s own life afflicts middle-aged children – my generation – as well. We are as skittish about pledging an unknown number of years to the care of our increasingly needy parents as they are about surrendering their autonomy. No wonder it typically takes a crisis to break through the denial both generations erect to shield themselves from the obvious. A parent falls ill in a distant location. You rush there, shocked by the disaster and the deteriorated living situation. How could things have gotten so bad without your knowing about it?
You call your siblings and only then do you talk about what you’re going to do about Mother or Dad. No one has prepared for it. Now two sets of people, each with deep though unspoken fears and reservations, must deal with a difficult situation. They will feel frightened, powerless, and overwhelmed. Their respective worlds are about to be turned upside down.
At this point, my parents live in their own home, but only because my father can still fix their breakfast, help my mother to the bathroom and call for help if she falls, And also because I am nearby for emergencies – and to help with regular responsibilities.
I still have many questions and quandaries about the future – my parents’ and my own. But since coming back to Texas to help with my mother’s care, I have at least learned not to repeat that oft-repeated cliché that undergirds and perpetuates our idolatry of independence: I don’t want to be a burden to my children.
We are all, throughout our lives, a burden to others. From the moment of conception, we are nourished and nurtured by others. As adults we learn to pay for or negotiate our mutual needs, but the fact remains that it takes an invisible army of other people to grow our food, clean our clothes, etc. When we marry, we accept another’s pledge to stick with us in sickness and health, prosperity and poverty. The load we lay on others only becomes more visible, less deniable, as we age. We simply aren’t much good at either bearing or being burdens.
Our relatively new culture, which makes both living anywhere and living longer possible, will no doubt devote a good deal of public resources and private energy in the near future to eldercare. In the meantime, I will be moving into that category myself. Yet nothing in our culture to date encourages us to accept the reality of our future liability. Instead, we are enticed to believe in the Centrum Silver myth – that our latter days will be spent on cruise ships or jogging into the sunset, not alone, but with our spouses. The truth is, though, should I live another 20 years, I will be a burden – to my spouse or my children or the state, if not all three. What I most want to learn during those decades is not how to live longer, not necessarily even how to live a healthier or more productive life, but how best to be a burden. One that might also be a blessing.
~ By Virginia Stem Owens
