There are few things in life that compare to the suffering of those left behind by their elders who lived long lives and suffered long deaths. It is insensitive, I know, to think of the suffering on the part of the survivors when there was clearly so much more suffering on the part of those that have passed.
But, too often, the way in which we impart (often misguidedly) sympathy and pity to those who pass on, more than to those who must carry on in the wake of their passing, is non-helpful and leaves many invisible and, therefore, untended wounds that never fully heal.
It is not enough that the death of a loved one who suffered for years with a long and debilitating illness provides some modicum of closure; the pain and anguish and years of often-stifled sobs of the survivors echo throughout the rest of their lives. Worse, and far too often, they never fully recover from their self-imposed recriminations and second-guesses and misplaced guilt over what they might have or could have or should have done differently… in the clouds and the haze of the eventual death they convince themselves they could have prevented somehow… “if only” they had acted differently.
Personally, I have lived with and cared for my own aging Mother for three years now. I have become wise enough, during this stretch of my life, to understand that there are just simply some things that we will never fully understand or completely grasp about our brains and our bodies and how they interact… and what life becomes as their communication with each other breaks down. And even as a 24 hour a day, seven day a week caregiver and direct observer of these things, I still – after all this time – struggle with separating out the person from the disease.
I came across an article written by John Davis, titled “Dementia: A Personal Reflection”, in which he discusses his own observations and experiences with dementia. I highly recommend this to anyone who is dealing with a parent or loved one that suffers from this disease. It’s a testament to Davis, and to any of us that has to deal with a person that has dementia, that he speaks so softly about such a hard issue:
It is obvious to me that what I have seen and known in my life informs how I perform my job. That is never clearer to me than when I encounter the devastating effects of memory loss in the life of someone that I come into contact with. Both of my grandmothers fought their own battles against the disease, and in so doing taught me about life in ways that they could never have done otherwise. These words are a tribute to them.
In my attempt to understand a disease I begin by trying to define the word that is used to describe it. The word dementia literally means apart or away from the mind. To be apart seems to imply an otherness. To be away from the mind suggests that one is lost, lost within one’s self, and unable to find a way out. Dementia then is a lostness, a wild unknowing, an uncomprehending path that leads nowhere and means nothing.
The affliction is not generous. It does not easily lend itself to sentimentality or imagined goodness. It is stark and haunting. It weaves itself into the very fabric of a family. At first its presence is barely noticed: a name not remembered, a misplaced pen, a pause, a break, a whisper of a stranger’s voice coming from mother’s mouth. But eventually it forces its way into the center. It strikes the one in whose mind the family had always been so firmly one, so tightly bound that eventually the individual parts slowly came to form the whole that she had always envisioned.
But maliciously, unnoticed and unchallenged, it begins to redefine the narrative of an individual. It alters interactions and mercilessly constricts until only a shell remains. One sees the mimicking mask of a stranger and feels the sting and ache of a familiar body inhabited by one who is now not known. The disease is a great deception, a cruel joke, a wrong that no one seems to know how to make right.
This is very well said and, even though he is describing the person with the disease, he is describing the essence of how their caregiver feels as they try to help the sufferer navigate the last years of their lives as well: “a lostness, a wild unknowing, an uncomprehending path that leads nowhere and means nothing”.
It is tremendously difficult to know how best to provide for the needs of a dementia sufferer because there is no clear, reliable way to verify with them that their needs are being effectively communicated and ultimately met. That’s the damnably frustrating part of it because, like the broken communications between their brains and their bodies, our own communications with them are broken down as well.
There are no set timelines for when a person dies from Dementia; as with everything else in life, it is different for each of us. In the time leading up to the death of a sufferer, for both the patient as well as the caregiver, it has to be enough to just “get through” each of the moments of each of the days, searching for and successfully recognizing a good moment that can be cherished and treasured in the days after the sufferer has passed on. It’s not much, but it has to be enough for us, after the mourning has passed; there is no comfort in the death of a loved one except where we can seek it out and find it in the memories of them when they were living.
The close of Davis’ personal reflection is beautiful and somber and touching, and provides some degree of comfort (or should) to those of us who will ultimately be left behind by the loved ones who leave us. I say comfort because, even as he says his goodbyes to his own loved ones with such humble dignity and grace, he points to a beautiful poem, rich with incredibly deep and meaningful passages, written by Edna St. Vincent Millay, in which she – like us – accepts but refuses to approve of the passing of those we have so deeply loved and worked so hard to adequately care for.
If you’re like me, you will be printing this out and prominently displaying it somewhere that you can see and re-read whenever you’re reminded of the journey you had with your own loved one:
Dirge Without Music By Edna St. Vincent Millay
I am not resigned to the shutting away of loving hearts in the hard ground.
So it is, and so it will be, for so it has been, time out of mind:
Into the darkness they go, the wise and the lovely. Crowned
With lilies and with laurel they go; but I am not resigned.
Lovers and thinkers, into the earth with you.
Be one with the dull, the indiscriminate dust.
A fragment of what you felt, of what you knew,
A formula, a phrase remains, — but the best is lost.
The answers quick & keen, the honest look, the laughter, the love,
They are gone. They have gone to feed the roses. Elegant and curled
Is the blossom. Fragrant is the blossom. I know. But I do not approve.
More precious was the light in your eyes than all the roses in the world.
Down, down, down into the darkness of the grave
Gently they go, the beautiful, the tender, the kind;
Quietly they go, the intelligent, the witty, the brave.
I know. But I do not approve. And I am not resigned.