It is no revelation that as people age their eyesight often deteriorates, with vision losses ranging from simply needing stronger eyeglass lenses to more serious afflictions such as cataracts, macular degeneration, and glaucoma.
But one impact that accompanies the loss of eyesight, Charles Bonnet Syndrome, apparently is only now gaining recognition in the United States even though it was discovered centuries ago in Europe. Due to unfamiliarity with the symptoms, this syndrome can cause untold misery and fear for those experiencing it, and total misunderstanding from those observing it.
In the case of my mother it resulted in antagonism and even ridicule from family members who were attempting to force her into a nursing home more than two years ago before she moved to my home. Their complete misunderstanding of her symptoms, and refusal to believe that what she was telling them was true, was used as “evidence” in their legal efforts to portray her as mentally incompetent.
Ron Winter
Simply put, Charles Bonnet Syndrome – named for the Swiss naturalist who first described it in 1769 – occurs when a person has lost most of their sight but continues to see people or objects. In England, this phenomenon has been noted among people who grew up in the 1920s and 1930s seeing people dressed in period clothing from their childhood, or military personnel from the WWII era.
The afflicted person, who is otherwise mentally healthy, sees these images as clearly as if they were real. But these are not the more typical hallucinations caused by neurological issues such as dementia or Alzheimer’s. Rather, they are similar to the “phantom sensations” felt by people who have lost a limb, yet feel their fingers or toes as if they were still attached.
Sufferers, who are mentally healthy people with substantial vision loss, often have recurrent “Lilliput hallucinations” in that the objects are smaller than normal. The hallucinations usually don’t speak, or otherwise interact with the person suffering from the syndrome and usually don’t affect any sense other than sight.
Some estimates indicate that up to 40 percent of the elderly who lose their sight also suffer from Charles Bonnet Syndrome although some research indicates the number is closer to 20 percent. Exact numbers are difficult to obtain because many people who suffer from it won’t report their sightings due to not understanding the syndrome or fear of ridicule.
I first learned of this syndrome about three months after my mother moved to my home in late 2008. Family members told me before and after she moved in with us that my mother was “delusional” and seeing people or things that weren’t real. Mom finally told me at dinner one night that she saw a small girl, clad in a black velvet dress, standing right next to me – a somewhat disconcerting event, I must say.
But rather than dismissing her, or ridiculing her, I took Mom at her word, went to my computer and did a Google search on “elderly seeing false images.” In seconds a list of 127,000 sites dealing with the issue appeared and the third site on the list www.buzzle.com listed: Charles Bonnet Syndrome, This is the most common cause of hallucinations in the elderly.
So I looked up Charles Bonnet Syndrome and within five minutes had a rudimentary understanding of what it is and its history. When I told my mother that she wasn’t crazy, but her brain was playing tricks on her due to her glaucoma – and also due to severe retina damage to her “good” eye, which at that time had not yet been treated by a specialist – her sense of relief was palpable.
There really isn’t much that can be done about Charles Bonnet Syndrome; doctors often treat related issues such as depression that arise from people suffering from the syndrome, but can’t do anything about the hallucinations themselves. I have noticed that it occurred in my mother’s case in times of great stress. It often goes away by itself.
As is the case with so much else afflicting the elderly, knowledge, understanding and compassion are they keys. Imagine how frustrating it must be to deal with so many other issues that come with age, and suddenly, in addition to losing your sight, you are seeing images that appear to be completely real, but you are being treated as if you are delusional and no one takes you seriously.
Deteriorating vision will affect virtually all of us to some degree, and it would be a big boost to our medical futures if some of these issues were taken seriously and researched now. Wouldn’t it be great if major strides were taken in the treatment of so many of these afflictions before we reach old age?
It took only about five minutes to find out what was afflicting my mother once I started the search; we should be able to spare that much time to help out our elderly, don’t you think?
Update in New London Probate
Last week I wrote about the case of the late Mary Gennotti of New London, whose will is being contested due to alleged irregularities – such as her remarrying her ex-husband just weeks before she died, when she was by many other accounts not aware of herself or her surroundings, with a marriage license signed by an X instead of her name.
Mary Gennotti was the daughter of Josephine Jetmore who died in 2005 at the age of 101, and her will also is being contested in New London. I mentioned how Atty. Sally Roberts of Hartford has taken on the case, assisting Robert Jetmore, son of Josephine and brother of Mary Gennotti in resolving the probate issues.
Atty. Roberts made an appearance in New London court this week and aside from convincing the judge that funds should be released to pay back taxes on a home that is caught up in one of the challenges, she came away with a good question, one that we all should consider when we deal with probate courts – and for that matter any court.
The question: “Is a judge required to refer evidence of criminal behavior to the appropriate authorities when parties in a legal dispute ask for a criminal investigation?”
It is Atty. Roberts’ position that there were sufficient irregularities in the Jetmore/Gennotti cases to spark a criminal investigation long before she became involved. In fact, Robert Jetmore sent letters to everyone in authority he could think of, including former Gov. Rell, Sen. Joseph Lieberman, and former Sen. Christopher Dodd – whose response is a classic of bureaucratic buck passing – asking for help.
He got nowhere. But the issues still remain, Atty. Roberts is dogged in her methodology,and by all accounts a lawyer on a mission. My money’s on her.
I have only scratched the surface in digging through the information Atty. Roberts has sent me, but it is obvious even from this vantage point that something is amiss, not just in the New London probate court, but with our probate system.
When I first became aware of Granny Snatching I was convinced, as I remain, that we need uniform national legislation to adequately protect ourselves and our elders from schemers who would rob us of our life savings and retirements. But Granny Snatching couldn’t exist if the courts at the most basic level – probate – were operating in the best interests of the people they are supposed to serve.
It is obvious that in our efforts to enact uniform and effective national legislation, we need to start at home and clean up our own back yards first. As Atty. Roberts said regarding the estate of Mary Gennotti, “All that’s left is the stench.”
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