"... in which the afflicted person steadily vacates her body until she becomes essentially absent. While this process may include moments of lucidity or levity, nothing substantially positive, life-giving or new can emerge for the person or her family and friends — because the person as person is disappearing. 'My mother is just a body now,' Ms. Jong-Fast writes. 'She has dementia.
She has breath and hair and pretty blue eyes but Erica Jong the person has left the planet.' She is 'dissolving,' 'slipping away,' 'a faint fragment,' 'an echo,' 'a zombie.' The trouble with this well established approach is not that the tragedy narrative is completely false."
Writes Lynn Casteel Harper — a Baptist minister and the author of "On Vanishing: Mortality, Dementia, and What It Means to Disappear" — in
"We May Soon Be Telling a Very Different Kind of Story About Dementia" (NYT).
I have seen up close that dementia is not just a decline unto death. It can also involve ascendant humor, compassion and connections beyond the strictly rational....
Rebecca Barry, in the beautiful essay “Alzheimer’s Can Be a World of Endless Second Chances,” frames her evolving relationship with her father, who has the disease, as filled with the freedom of new experiences, the surprise of having more of her father, not less, and the graces of developing “the heart connection.” Suzanne Finnamore, the author of “My Disappearing Mother: A Memoir of Magic and Loss in the Country of Dementia,” writes of her mother’s deep dementia as the land where her mother lives, rather than the totality of who she is.... There is dignity in Dementia if we say there is,” Ms. Finnamore writes. “There is wisdom and humor and radiance if only we can see it.”In “Dad, You’ve Got Dementia,” the poet Kristen Phillips turned her conversations with her father into poems, a particularly suitable form for a condition that resists the linearity of traditional storytelling. Rather than noting only what was lost, Ms. Phillips says she heard “magic and beauty in what Dad was saying as his brain searched for words.”...
Samuel Simon’s
play “Dementia Man” tells of his at times frustrating journey to diagnosis, his insistence that he is not vanishing and his emerging sense of justice for those living with the condition. Sy Safransky, the founding editor of The Sun magazine,
writes about his dementiawith a sort of wry nonattachment, declaring, “Dementia is what it is, not bad, not good. And anything can happen in anyone’s life, anywhere, anytime.” He continues, “Things fall apart. Move on.”...
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34 comments:
I already had a very low opinion of Molly Jong-Fast, but now my opinion is even lower. We didn’t need that information. Molly is a nepo baby of the lowest order; no talent and now gossiping about the hand that fed her. The Left is full of just plain bad people.
of course they would mainstream dysfunction, how can molly tell anything in her clockwork orange world,
My 2024 comment, “ MJF is a person who should disappear from the public scene.”
I'm challenged to note who is the zombie in this picture,
but when your grandpa is an old Commie polemicist, Howard Fast,
What planet are these people from?! My mom and MIL died from Alzheimer’s. Sure there were moments of humor and grace, but mostly there was a lot of fear, anxiety and obsessive thinking that took over both of my loved ones.
Ceti Alpha 6, well it's the Times creating their own reality,
Oh—and not being able to swallow, which made them choke and spit up all their food and drink, was a real picnic for both ladies.
I guessed that Lynn Casteel Harper would have a soft, pretty look with nice teeth and by gar a google image search proved me right!
What planet are these people from?! My mom and MIL died from Alzheimer’s. Sure there were moments of humor and grace, but mostly there was a lot of fear, anxiety and obsessive thinking that took over both of my loved ones.
I would guess that these people are dealing with someone in relatively early stages of the disease, when the person can often dig up old memories that may be charming or nostalgic or the like. It does not seem like they have dealt with later stages when the person can violently lash out, or still later stages where the person stares vacantly at the ceiling as they lie motionless for the bulk of the day.
Having experienced someone with dementia close up 24 hours a day for 3 years until death, I can say without any doubt at all that there is nothing nice at all about the process- not for the family and certainly not for the patient. This romantic view of this disease is demented and I suspect those holding that view of dementia spend one or two hours a week with their parents or siblings in the care facility.
as a chaplain I think she is deceiving those who are in her care,
Omg, the day has come. I agree 100% with Yancey! I have lived through it with four people (both my parents and both in-laws)
there doesn't seem to much emotion to molly, maybe she has spent it all on false outrage, to focus on real things,
My experience with my late wife's dementia convinced me that there is, indeed, a Fate Worse than Death.
My aunt started to suffer from dementia in her mid eighties, the early signs were saying something, then repeating it a bit later as if for the first time. She was very intelligent, but the decline was steady after that. She was happy, though, and managed to get around. She also had a remarkable singing voice and could still belt out hymns acapella. Blew me away, I understand she used to sing professionally. My cousins remarked that whatever she had, they would like a bit of it :) It was cancer that got her in the end.
Been there, done that.
Sucks for all involved, but only some participants notice.
"While this process may include moments of lucidity or levity, nothing substantially positive, life-giving or new can emerge for the person or her family and friends — because the person as person is disappearing."
Lynn Casteel Harper adds:
"I have seen up close that dementia is not just a decline unto death. It can also involve ascendant humor, compassion and connections beyond the strictly rational...."
I worked for a time as a senior caregiver, with several clients who had either a purely physical limitation or varying stages of dementia. I learned quickly that anticipating their needs was key to making their lives more pleasant. If rest was in order, help them to get a nap or some quiet time. If engagement was the need, find an activity of their choice and go to it. Don't wait for them to tell you they're thirsty, or hungry - watch for the signs and have something ready. If they're irritated, I found some ways to divert their attention to something I knew they would enjoy.
This came in handy when I assisted my sister, who was our Dad's live-in caregiver for something over ten years. She had situations where he became combative and physically threatened her. They were in CA, we were in WI, and I handled some of it over the phone, but when he was about to go in for cataract surgery, she asked us to come out and stay while he was recovering. She feared - rightly so - that he would rub his eyes after surgery and undo what the doctors did for him. We kept him busy with things, made sure he was well tended to even between meals, and came up with a way to protect his eyes overnight, with shop goggles instead of the taped-on eye shield from the hospital. It worked, and he had a full recovery.
The upshot is that he was able to live out his days in his own home, until COVID laid him low. My sis was assiduous about protecting him from contagion, but COVID found both of them anyway, and though she recovered, he didn't. She was able to be with him in his hospital room when he passed.
While most people's experience of dementia is Alzheimers, there are other forms which can have surprisingly different effects. My Mom had her wits and her memories intact even as she lost balance, impulse control (standing up from wheelchair to adjust crooked picture frames caused multiple falls), and eventually vision, then most motor function.
When end of life decisions were being planned, she made it QUITE clear to the doctors she had her wits with her. They walked in expecting someone with Alz, they looked in shock as she gave them a talking to with a clear head. So different from my in laws who both had classic Alzheimers.
I've seen numerous relatives/in-laws go through dementia, too many examples to mention. But my "favorite" is my mom's cousin's ex-wife. My second cousin enjoyed visiting her mom when she was in the nursing home, because Peggy thought one of the nurses was her daughter. Carol could visit her mom as a friend and have a pleasant time instead of being scolded for whatever.
Various experiences for many situations. Depends on the cause of dementia. Depends on the glide path. Depends on the number of care givers from a family or the ability to pay for trained care givers. Depends on a lot of other factors.
The NYT does NOT go out of their was to present a realistic spectrum on any subject. MJF must be pleased at the opportunity.
We have faced this more than once in our family. I would not provide the details to the general public because we were dealing with a loved one. Why would I tell of the individual horrors they faced? I sure as sh*t would not want to candy coat the experience.
Shame on MJF.
Quite frankly, this sounds like the next Lionel Shriver parody of American society... are we sure it isn't? It is ripe for satire of the apparent narcissists who, in the face of their parents or other loved ones losing their ego through the degeneration or dissolution of their grey matter, declare, "But hey I'm having a good time!"
My mom was in hospital and the doctor was assessing her mental state. He asked her if she knew where she was. She looked at him incredulously and said "Oh, you think I'm demented. This is obviously a school" She was joking of course...
Nothing puts you in touch with the idea of humanity, than to see Alzheimer's and its effect on loved ones. My mom had advancing dementia and would often see impossible things, but she didn't ever get Alzheimers. A great aunt in the family did, and she was the peaceful type, and just slipped steadily away until she would just listen on the phone calls, which she still seemed to enjoy, without saying anything. It's sad when you see someone being diminished that way, day-by-day, reaching the point where they don't understand why, don't understand much, but know it's a loss.
The first folks I ever worked for in Texas ran a successful small family business, and were devout Church of Christ parishioners. The wife worked as the company secretary, an East Texas wildwood flower, always impeccably dressed and groomed, the most pleasant and charming lady. I ran into them by chance at a local tractor shop a few years ago, 40 years after I had hired on. He was picking up a part, and she was there, impeccable as always. She remembered me, or I thought she did, but when she asked me the same conversational question for the third time in 3 minutes, I realized it was pretty far along. For him to be taking her out with him, making sure she was dressed to her standards, perfectly coiffed, etc. What devotion it takes, what a statement of love and caring, what commitment - an homage to what she would have wanted, were she aware. I salute people like that, and the caregivers that provide the support to their clients and charges.
Jimmy Buffett's father went through Alz and wrote some about it in one of his books. His father knew it was happening at first and said there were times he could remember events that happened 50 years before as if they happened yesterday; other times, he would go into a room and utterly forget where he was.
I've only had an uncle go through it. Saw him only a couple of times during that process, when he was still fairly lucid. He, too, would bring up memories from decades before, although sometimes he would make a weird comment that nobody understood. He eventually had to be put into a facility -- I felt so sorry for his poor wife who had to deal with him much longer than she should have -- and it was difficult to find one because he could be violent.
I watched my father succumb to Alzheimer’s, which was his cause of death per the death certificate. Also watched my mother and brother with dementia post-stroke. My mother-in-law with growing dementia. A number of friends succumbing to dementia. It is really hard to watch, let alone be the caregiver as my sister-in-law and 3 of her adult children are doing. The wife of one friend caring for her husband with let’s say moderate stage dementia confided to my wife that she has contemplated suicide from the stress, although she said that she could never do that to her 3 daughters. I haven’t read the article (NY Times and all that), but I have great sympathy for anyone watching this happen to their loved one. Leaving out lots of stories from over the years (well, the woman in my mom’s nursing home who just screamed all the time—her husband visited her every day just as my Dad visited my Mom— my old boss who went from the sweetest, kindest man to a huge horse’s patoot, etc.)
A very Molly Jong-Fast to all.
There are some satisfactions in a relationship with a parent who has reverted to a child-like state, but more is lost in mom's or dad's transformation than is gained.
Sorry, Freder. That must have been very hard.
Dementia is typically a dissociative disease correlated with evolutionary processes. It's difficult to coexist with the loss of mental and physical fidelity.
Eric the Fruit Bat said..."I guessed that Lynn Casteel Harper would have a soft, pretty look with nice teeth and by gar a google image search proved me right!"
LOL. I had a similar thought. If the NYT portrays a Baptist minister in a favorable light, either she is a person of color from the right sort of ideological church, or she is a comfortable white woman from one of a few approved zip codes. I guess she lives in NYC, but her pictures nicely capture the look of what Connecticut anthropologists might call, "Fairfield County Woman, Darien Brunette Subtype." Not that there's anything wrong with that.
Both of my parents had Alzeheimers. I was the sole caregiver.
It was exhausting and difficult for all of us. They raged against it until they were gone.
Everyone is prone to universalizing their own individual experience. My take is that the effects of dementia are most probably idiosyncratic. that fact, along with the different emotional make up of individual caretakers allows the experience to fall across a wide spectrum. Some will experience only horror while others may not or look for the positive and a terrible experience.
My wife had Alzheimers and I was the sole caregiver. This was during the Covid lockdowns. She was the love of my life, but it was a relief when she died.
That’s “amid a terrible experience.”
As horrible as dementia is (and I’m a physician and have seen more than my share) I’d have to say that ALS is another order of magnitude. My step-daughter just passed away this weekend of it after a 6 year struggle. I first noticed it when she came to visit us and she had a foot drop. Formal diagnosis was made 2 months later. My wife(who is a remarkable woman in so many ways) is handling this pretty well, but no parent wants to have a child die before them.
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