BY PAUL M. LEWIS
How best to care for elderly relatives is an issue many people are struggling with these days. It’s a subject close to home for my partner and me, as well, given that his mother is in hospice care and has been for the past six months. In addition, we know at least half a dozen others, good friends, who are struggling in their own ways with taking care of elderly parents, whether they live close by or at a greater distance. We are, ourselves, some 500 miles away from my partner’s mother and make the nine-hour trip there at least once a month. Another friend undertakes a seven-hour drive to see his mother every week, arranging to work a full-time schedule in four days and compacting Mom’s care, plus the 14-hour round-trip, into his Friday-to-Sunday weekends. Yet another has his 93 year old mother living in his home, with him as 24 hour-a-day caregiver. And one other close friend is overseeing the care of both of his parents simultaneously, one of whom is in a skilled nursing facility, while the other still lives, at least technically, on her own, but needs almost constant care. Additionally, there are still others who have it much worse, those who have to combine eldercare with raising small children, for example, or those who are struggling with their own physical ailments, while attempting to deal with the illnesses of aged parents.
In one sense, this is not entirely new. To an extent, families have always dealt with taking care of the elderly. At one point in our history, it was not at all uncommon for grandma or granddad to live in the same home with a grown daughter or son and their family. People simply contrived to take care of the older person, as he or she got sicker and closer to death. What has changed, however, and changed dramatically, in the last few decades is the length of time that people have been living. Not so long ago—certainly within my lifetime and in the lifetimes of many of my contemporaries—common diseases would have caused the death of many an elderly relative. In my own family, both of my grandfathers had died before I was born, and neither of my grandmothers lived much beyond their mid 70’s. During the 1950’s and 60’s, when they died, that was relatively common, and simply seen as part of the rhythm of life that comes to its expected end. I am not suggesting that the loss of a loved one was any easier, or less traumatic, in those years. The point is only that it often happened earlier in that person’s lifespan, and consequently in the lives of their offspring and caregivers.
Today, diseases and other ailments that, only a few decades ago, might well have carried off an individual are now regularly treated by modern medicine in such a way as to prolong the lives of those suffering from them. I am speaking of afflictions such as heart disease, stroke, pneumonia, even some forms of cancer, to say nothing of helping those seriously injured in devastating accidents that at one time might have very well brought about death. Again, I want to make it clear I’m not at all suggesting that this is bad. Of course, we all want those whom we love to go on living. What I am saying is that the longer a person lives, especially into what we now think of as extreme old age, that is, the nineties and beyond, the more difficult it becomes not only for them, but for those whose lot it falls to to care for them, particularly as their quality of life becomes more and more compromised. And the burden of this care can be a heavy one, physically, financially, emotionally, and simply in terms of time and energy.
Ultimately, the larger and more overriding question may be this: What does it mean to die a natural death? Many people have decided that they do not wish to live on life support and have issued what is commonly referred to as a DNR—a Do Not Resuscitate order. Both my partner and I have done so, as has his mother. Even so, the question is not as clear-cut as it may at first seem. There are endless gradations involved, gray areas, in between places when it falls to the person who is acting for another to decide if “this is really it.” If an elderly mother, for example, has a stroke, who is to say if she can come back from it and regain much of her strength and mobility? Or if a father in his 80’s has an abdominal aneurysm, should he be operated on in order to relieve the potentiality of it rupturing? Of course he should, many of us would say. And yet, this was exactly the case for a good friend of mine. It turned out his daughters decided for him, as his mind was already somewhat compromised and he had difficulty fully understanding the ramifications of decisions. Yet, after the operation, he slipped more and more into a world inaccessible to anyone, and lingered for another year in that twilight state. This is not to blame his daughters, who did what they thought right, but was it what my friend really wanted?
At what point do we decide, either for ourselves or for those we are looking after, that no more medical help ought to be given, other than palliative, non-curative care? And what of people who have decided that the time has come, choose hospice care, and yet somehow still cling to life, in essence forgetting that they may have made such a decision? And if they made that decision while in sound mind, but now appear to no longer be capable of making fully informed, rational judgments, what then? What are we to do if, having made one decision, they change their mind again, back and forth sometimes even from day to day, or from week to week? These are questions that cry out for answers that we do not always have at the ready.
Could we even say that the very notion of a natural death has been so changed by the advances of modern medicine that we no longer exactly understand what we mean by it? I can offer myself as an example. Nine years ago, after having had a second heart attack, I underwent angioplasty. The doctors miraculously inserted two stents into the arteries of my heart, and I seem to be fine today. If they had not done so, there is every possibility that I might well have died long ago of a heart attack, as my mother did in 1970, at age 50, much before such things as stents were even dreamed of. It could be said she died a natural death. Or did she? But what of the fact that she smoked for most of her life, that she worried constantly about everyone, her children in particular, and that she worked hard in a factory much of her adult life? Didn’t all this contribute to her early demise, and if so, how “natural” is that?
Still bigger, in a sense more global, questions could be asked. What about poverty and its consequences, such as lack of access to medical care, living in overcrowded conditions and susceptibility to infectious diseases, the inability to buy healthy food and have clean water to drink. Even lack of education can affect a person’s lifespan, as we have seen when women tend to have fewer babies the more education they get. Is it natural to die while having an eighth or ninth child?
And while this may seem to have led us relatively far afield from the topic of eldercare, what I am suggesting is that it all contributes to our understanding of the overarching question of what it means to die a natural death. Indeed, in the world of the 21st century, it is more of a conundrum than ever. Do not resuscitate, yes, of course! Few of us would wish to linger on life support, while living essentially in a coma (although even here there are exceptions, as many of us may remember from the Terri Schiavo case).
All too often, the choices are not cut and dry. It is difficult enough for each of us to make choices when it comes to our own lives. Do we opt for chemotherapy, for example, if diagnosed with cancer, given its terrible side effects and the likelihood, or not, of its working? And it is even less clear when needing to make such decisions for someone else. Should we have told the emergency room doctor to do everything possible for Mom or Dad after that stroke? Is their current quality of life enough to have justified that decision, even though a DNR was on record? And add to this the fact that such decisions must often be made on the spot, amid the terrible haze of emotional trauma, when one’s own judgment may not be as clear and dispassionate as we might otherwise wish.
There are few clear paths through the maze of such questions. It may be that the best any of us can wish for in taking care of others is to follow our hearts, with the hope of an informed intellect and, with luck, perhaps even some clarity and wisdom. We all wish that, when the time comes to shuffle off “this mortal coil,” as they used to say in my Catholic youth, we may not linger, and instead exit with a measure of grace and dignity. Yet, no one is assured of what might be called a clean and clear-cut ending. Do we get the death we deserve, or the one that we need? Should it be conscious; or do we hope for a silent slipping away while asleep?
Maybe the best preparation for a natural death is for us to not be so concerned about it at all. In Hindu thought, there exists the notion of God’s “Lila,” the idea that all of creation, including life and death, is part of the divine play, with Spirit being the only true Reality. There is comfort in this view, and perhaps even great wisdom. As Krishna says in the Bhagavad-Gita: “Mourn not for those that live, nor those that die. Nor I, nor thou, nor any one of these ever was not, nor ever will not be, forever and forever more.” And if that is the case, then, in the end, maybe death itself ought not to matter so much.