The late, great, and definitely not sedate Emily Dickinson proclaimed in one of her many unwieldy and nameless poems, “After great pain a formal feeling comes –
The nerves sit ceremonious like tombs”. I learned that opening line and the entirety of the poem off by heart for the Irish Leaving Cert, which I sat in June, an event that now seems as distant as it was extraneous. Incidentally, I had entirely forgotten that quote, and indeed everything about Emily Dickinson herself until earlier this week. I try not to watch Fox News every day, mostly for fear of succumbing to what Johann G. Seueme characterized as “idleness of the mind”, but this article owes it’s genesis to a story they reported, quite commendably it must be said, on Sunday night.
Maria Arciega-Dunn told the story of a man suffering from Alzheimer’s in America, Billy Apley, who was conned out of $25,000 by a stranger who managed to convince him that he required a donation for his local churches. Apley’s wife, Sullen, was understandably distraught at the loss of her retirement money, saying that she wanted it in order to “spend the last few years with [Bill] before his mind is all gone.” The moral outrage is, as usual, not something that can be outdone when the commentators at Fox throw their indignation into the ring, but the story for me raised a rather more chilling question than anything regarding the deteriorating ethical values of con artists. How do we deal with the “great pain” of knowing those close to us who are suffering from dementia, and is it necessary to make an effort to avoid this “formal feeling”, for the sake of preventing it’s victims from becoming dehumanized by society?
Perhaps the only pain greater than losing a loved one, is to lose a loved one before your eyes, over what seems an unceasing and unrelenting period of time. That is essentially the tragedy currently being experienced by millions of families all over the world, as they have to cope with the realization that the mind of someone close to them is decaying into a shell. It may not even be apparent at the onset of the illness, and sure, the misplacing of keys and the struggle to remember names is something we have all occasionally done, and is often attributed to that whimsical phenomenon of “getting old”. Yet the worldwide misery inflicted by Alzheimer’s Disease is something quite different. Sufferers can deteriorate to such an extent that they forget not only recent events, but also the identity of their closest friends and relatives, such as in the case of Margaret Thatcher, to use a prominent example. The “Iron Lady” apparently fails to recall on a regular basis that her late husband Dennis has passed away. Political convictions aside, one can only imagine the pain that the duty to inform her of this fact consistently inflicts on her caregivers.
The dilemma of how a family copes with the diagnosis of a relative with dementia is not a pleasant conundrum to have to deal with. The oft-taken decision to send the person in question to a care home regularly evokes feelings of guilt and shame in those involved. The desire not to see a loved one suffering is, unfortunately, mistaken by many cerebrally challenged individuals for a lack of love and compassion amongst the family members. And as for those admirable souls who carry the burden of their ill relatives without any fuss or complaint, we should applaud these soldiers, but consider that perhaps not everyone is able to deal with such great depths of emotional agony in the same courageous fashion. The comedy actor Seth Rogen, usually an unflappable character of hilarity onscreen, gave an interview last year to CNN about the ongoing mental deterioration of his fiancée’s mother, in which the abject look of misery in his unrecognizable eyes conveyed a picture more gloomy than any sob story he could have told. Dealing with heartache like this on a daily basis is not for everyone.
There is another, perhaps less obvious issue that needs addressing in these circumstances. It must be very tempting, understandably so, for us to disassociate ourselves from an ill relative of this ilk by describing them as “not the same person anymore”. Such a belief, although it is clearly constructed as an emotional shield, is arguably a slippery slope on the way to viewing the victims of Alzheimer’s as nothing more than a lead weight on society, rather than people who are incurably sick. Bob DeMarco, the founder of the online Alzheimer’s Reading Room and a caregiver himself, is quoted as saying that after hearing such pronouncements he wonders to himself about these people, “Who are they then?” A prominent sufferer of the disease, the late former President of the United States, Ronald Reagan, echoed this sentiment, and articulated arguably one of the few correct ideas he had in his lifetime when he stated; “You know, people get frustrated because their loved ones who have Alzheimer’s, oh, he doesn’t recognize me anymore, how can I recognize this person, if they don’t recognize me? They’re not the same person. Well, they are the same person, but they’ve got a brain disease. And it’s not their fault they’ve got this disease.” Never have the facts of this horrific illness been so simply and truthfully put.
As nice as it would be to end this piece on a positive note, the realities of dementia are unappealingly fixed. It remains, for the immediate future, an incurable disease, despite the laudable efforts of researches to discover a remedy. The only effective thing we can do for the time being is to ensure that these hideously unlucky individuals get the best care we can possibly give them in their remaining years on the planet. Help networks are available for those caregivers who will inevitably find the burden too much to cope with on occasion, and Mr. DeMarco’s website is is an especially impressive example of this. In recalling that particular Emily Dickinson poem a few days ago, another one came to mind when reading harrowing interviews with several brave caregivers. Until a cure is found, all we have is the hope that one day science might blow dementia into oblivion, along with several other grotesque illnesses. As Dickinson eloquently wrote, ‘hope’ is the emotion that “sings the tune – without the words, And never stops at all”.