Part I of this post began: In our death-denying and youth-glorifying culture, how does dementia figure as a disease? Is there a cause? Is there a cure? What pills can be prescribed? We might choose to view dementia is a dark side of longevity. Where we have unprecedented longevity due to medical advances, isn’t it right to wonder about what our lives are for – especially if we have more length of days to ponder the meaning. As I frequently comment to clients, we have never had so many old people on the face of the earth before. Many of the challenges we face in supporting elders and caring for them – the legal, financial, medical, social and emotional challenges – are new problems and require new thinking.
How is it decided who gets to go back home, back to their independent living arrangements, after a discharge from a hospital or rehab facility? Long term living arrangements for elders in institutions have been becoming more rare – but is this trend likely to continue as more of the baby boomers reach retirement age? In the institutional setting, a major issue presented in this context of dementia and capacity is the “choice between” autonomy and restraint. This is a recurrent dilemma for many elders living in facilities and the staff members charged with managing their care in these institutionalized settings. This is “big brother” in the context of the growing number of elders.
What is it that matters about old age – why do so many people want to live longer? When we focus on the do-ing part of our lives, extending that “active adulthood” indefinitely, or at least valuing that part of our lives as the only part worth maintaining and carrying on, we do disservice to the be-ing part of our lives. I recognize that the vast majority of our culture is focused on the doing, the active (not contemplative), the choosing (not reflective) and the control, and that these are the hallmarks of a culture that holds choice and self-determination in high regard. However, there is also the more fundamental backdrop of human dignity that often gets overlooked when we get caught up in our rights-bearing choice-making mindset. This is the challenge of dementia and and other end-of-life scenarios and why we need to rethink our thinking in some fundamental ways. For an institutionalized person with advanced dementia, that person is entitled to dignity and respect as a person, simply by reference to their being alive, and without reference to a focus on all the capacity that a person has lost. How many times have we heard comments like “look at him now, he used to be a university professor.” I think these comments are symptomatic of our unbalanced focus on the do-ing part of our adult lives, (which undoubtedly helps many of us maintain our sense of control over our lives) at the expense of the be-ing aspect of our lives. We exist as people as long as we are alive, as human beings.
Below I quote the entire poem “Tithonus,” by Alfred Lord Tennyson, a poem about aging as told by the lover of the goddess Eos, whose immortality was granted by Zeus – but Eos forgot to ask Zeus for his eternal youth and he was thereby left in an eternal prison of old age.
The woods decay, the woods decay and fall,
The vapours weep their burthen to the ground,
Man comes and tills the field and lies beneath,
And after many a summer dies the swan.
Me only cruel immortality
Consumes; I wither slowly in thine arms,
Here at the quiet limit of the world,
A white-hair’d shadow roaming like a dream
The ever-silent spaces of the East,
Far-folded mists, and gleaming halls of morn.
Alas! for this gray shadow, once a man–
So glorious in his beauty and thy choice,
Who madest him thy chosen, that he seem’d
To his great heart none other than a God!
I ask’d thee, “Give me immortality.”
Then didst thou grant mine asking with a smile,
Like wealthy men who care not how they give.
But thy strong Hours indignant work’d their wills,
And beat me down and marr’d and wasted me,
And tho’ they could not end me, left me maim’d
To dwell in presence of immortal youth,
Immortal age beside immortal youth,
And all I was in ashes. Can thy love
Thy beauty, make amends, tho’ even now,
Close over us, the silver star, thy guide,
Shines in those tremulous eyes that fill with tears
To hear me? Let me go: take back thy gift:
Why should a man desire in any way
To vary from the kindly race of men,
Or pass beyond the goal of ordinance
Where all should pause, as is most meet for all?
A soft air fans the cloud apart; there comes
A glimpse of that dark world where I was born.
Once more the old mysterious glimmer steals
From any pure brows, and from thy shoulders pure,
And bosom beating with a heart renew’d.
Thy cheek begins to redden thro’ the gloom,
Thy sweet eyes brighten slowly close to mine,
Ere yet they blind the stars, and the wild team
Which love thee, yearning for thy yoke, arise,
And shake the darkness from their loosen’d manes,
And beat the twilight into flakes of fire.
Lo! ever thus thou growest beautiful
In silence, then before thine answer given
Departest, and thy tears are on my cheek.
Why wilt thou ever scare me with thy tears,
And make me tremble lest a saying learnt,
In days far-off, on that dark earth, be true?
“The Gods themselves cannot recall their gifts.”
Ay me! ay me! with what another heart
In days far-off, and with what other eyes
I used to watch if I be he that watch’d
The lucid outline forming round thee; saw
The dim curls kindle into sunny rings;
Changed with thy mystic change, and felt my blood
Glow with the glow that slowly crimson’d all
Thy presence and thy portals, while I lay,
Mouth, forehead, eyelids, growing dewy-warm
With kisses balmier than half-opening buds
Of April, and could hear the lips that kiss’d
Whispering I knew not what of wild and sweet,
Like that strange song I heard Apollo sing,
While Ilion like a mist rose into towers.
Yet hold me not for ever in thine East;
How can my nature longer mix with thine?
Coldly thy rosy shadows bathe me, cold
Are all thy lights, and cold my wrinkled feet
Upon thy glimmering thresholds, when the steam
Floats up from those dim fields about the homes
Of happy men that have the power to die,
And grassy barrows of the happier dead.
Release me, and restore me to the ground;
Thou seest all things, thou wilt see my grave:
Thou wilt renew thy beauty morn by morn;
I earth in earth forget these empty courts,
And thee returning on thy silver wheels.
Alfred Lord Tennyson
Does our culture’s denial of death as part of life, our glorification of youth at all costs condemn us to Tithonus’ fate?
If we cannot stop to think about the purpose of our lives during our adult years, can we abandon to hope that such meaning will somehow arrive at our doorstep, unbeckoned? If this were to happen to us, would we even recognize its meaning? I think not. Elderhood is an extension of adulthood, and growing up is – quite simply – optional in our culture.
©Barbara Cashman www.DenverElderLaw.org
Unfortunately, we live in a culture that makes it difficult, if not impossible, to make a choice about death v being institutionalized. The balance seems to be skewed towards “life” even if it is wretched, drugged, and boring.
I agree Steve – most people don’t want to talk about this, but we do have the ability to have the conversation with loved ones and put the documents in place.