January 25, 2019

"What does it mean to grieve someone who is alive, but who walks, talks, thinks, acts and looks different from before?"

"The experts call this kind of loss 'ambiguous grief' or 'unconventional grief.' People with loved ones who fall prey to Alzheimer’s may experience this, as may parents whose children become alcoholics or drug addicts. Naming my grief is helpful because it invites me to engage in rituals of grieving. When I lost my old husband, there was no funeral, no burial, no going through his items to decide what to keep or discard. No questions about when I might consider dating again. I never removed my wedding ring and gazed at my bare finger. I simply carried on, missing my husband and occasionally crying among strangers. My new husband isn’t the same person I married, but he has his beauty. I admire so much about him.... Every morning he sits on the porch with a cup of coffee, chatting with neighbors. Lacking a crisp memory of the past and unable to plan for the future as he once did, he lives in the moment. He meditates regularly on the couch with closed eyes. He rarely complains about anything...."

From a NYT "Modern Love" column called "Are You My Husband?" It's by Megan Horst, whose husband Christian, 18 months after she married him, had a bicycle accident that caused "obvious damage to his left temporal lobe" and probably also "shearing, or micro-tears." She is an urban planner in Portland, Oregon, and he was too, until the accident left him unable to "do professional work" or to "keep pace with carpenters or handymen, jobs he had excelled at previously."

36 comments:

rhhardin said...

That's the deal with marriage. It's based on responsibility.

The general modern out is no-fault divorce, from when they threw out responsibility.

Shouting Thomas said...

Why in the hell does Portland, OR need two urban planners... or even one?

Leland said...

I'm not sure it is "Modern Love", as my family has dealt with the juxtaposition of health hearts and dementia. At some point, you realize the family member has none of the character that you remember fondly, yet it is the same person. That point happens long before you get to the stage of routine care because they are completely unable to care for themselves. When its over, you look back and wonder; is there some point in which the suffering should have ended earlier? The answer usually is yes, and then you get the challenge of both wondering exactly when and what manner.

It is this that doesn't make me see the euthanasia movement as particularly evil. There's many people who want to be remembered for all the traits they had that others cherished, and they don't want to leave a memory that is horrific. Yet, the problem is these movements are usually lead by people with other motives. They might look at this woman's second husband and think "why stay loyal, because you may feel guilty leaving him? Just let him die early [because he is no use to you or anyone]". There's a difference between love and utility.

Much better topic NYT than trashing kids and the President, because you think it edgy.

John henry said...

I'm not the same person my wife married 45 years ago.

She's not the same person I married.

The change happened gradually rather than suddenly, but what's the difference?

John Henry

Ann Althouse said...

Remember, this is a woman in her 30s who had only been married to the man for a year and a half when this happened.

It's not a case of dementia coming in after a long marriage.

It's finding yourself at the beginning of a marriage with someone who used to be sharp and energetic and is not slow and retiring.

rhhardin said...

Well that's the vow. Take it seriously or not.

tim maguire said...

The fact that they have only been married a short while is irrelevant.

It's stand together no matter what, not "enjoy the good stuff now and the bad stuff later and this is all null and void if the bad stuff comes before you're ready."

Ann Althouse said...

"Well that's the vow. Take it seriously or not."

The wedding vow she tells us about is to be "a hand to hold in yours through each tomorrow.”

tim maguire said...

It's very sad for both of them. Life can be cruel. But, as with so much these days, it's unseemly that she has turned it into a byline in the Times.

BUMBLE BEE said...

My wife of 28 years has experienced 3 Traumatic Brain Injuries. Like me, the author is living with a vague stranger she once found thrilling to the core. Enough so that she staked her young life on it.
So much promise inverts to a lifetime trail of tears. She is living with the once beloved undead. She's young and gets to watch his deterioration over their lifetime... nothing but deterioration. His demeanor will change and she may find comfort in being a caretaker rather than lover, or not. As my wife has said many times, sometimes it is best to not survive. John Henry, I could go on for hours about the "difference". I've lost a lot of friends to PTSD and Agent Orange. Lots of family too... totally different.

gilbar said...

1st; can't she just get a new partner if she's not satisfied with the one she has this moment?
I'm mean, that's what it's all about; isn't it? finding someone that fills you needs: at this instant?


On a much more serious note...
After my TBI, I was only in a coma for about three days (which they is the Big Cutoff Line); so i can't relate to her husband's situation. People say that i recovered well, but i sure miss the old me. There's certainly a traumatic part of TBI. One moment you're biking along doing all the things that you do; and the next moment, your brain is scrambled.
I guess the moral of the story is Wear a Helmet. They might not do much; but if i wasn't wearing one, and i'll always wonder whatif

Craig Howard said...

Tough crowd this morning.

Virgil Hilts said...

Fascinating story in New Scientist (Instapundit linked) that suggests Alzheimers may actually be caused by porphyromonas gingivalis, the key bacteria in chronic gum disease. We may have been fighting the symptoms rather than the cause. I hope this is true. I am going to brush my teeth and mouthwash (again) now.

John henry said...

Bumblebee,

I am sorry for your wife and your loss. I understand how awful it can be. On reflection I was being overly flippant.

Dealing with a sudden change, as in the article and in your case is always going to be more difficult than with gradual change. Dealing with incapacitating change is going to be much more difficult than dealing with the kind of changes that have happened to my wife and me.

It is different. Of course it's different. But I think it is different in degree rather than in kind.

Between that post and this I went back and read the article instead of just commenting on Ann's post. The article, from first paragraph to last reads like a parody of a NYT article even though it is not.

John Henry

wild chicken said...

Gee, and here I am about to turn 70 and wondering if I should get back on the bike this spring. The older I get, the more I fear mishaps like these.

Not a way to live really.

Ralph L said...

A major plot point in one of the Poirot novels was that old UK divorce law would NOT allow you to divorce someone mentally deranged & institutionalized (or in prison IIRC). This led to 3 murders.

My father has non-Alzheimer's dementia, so his personality hasn't changed and he seems normal at first, but his memory of details after HS is nearly all gone, and his reasoning powers are too, but I'll pry his checkbooks (he has 4) from his cold, dead hands. At least he can still dress and feed himself. One of his cars was totaled in the last hurricane and the other's battery is dead, so I no longer worry he'll drive away when I'm gone for a few hours. His hip is bad, so he ain't walking away either.

Several times he's said he once worked for the police and met Elvis on a train in South Carolina, and he's met many famous people on TV and been to most travel show locations (sometimes this is true).

MayBee said...

It would be so hard.

mccullough said...

She needs to change as well. Stop reading The NY Times and stop writing items for it. She’ll be much happier.

Wince said...

Every morning he sits on the porch with a cup of coffee, chatting with neighbors. Lacking a crisp memory of the past and unable to plan for the future as he once did, he lives in the moment. He meditates regularly on the couch with closed eyes. He rarely complains about anything...

Hell, I'm afraid some will view this as a serendipitous discovery that frontal lobotomies are a cure for "toxic masculinity".

gilbar said...

wild chicken said...
here I am about to turn 70 and wondering if I should get back on the bike this spring.

you should wear a helmet! helmets are More important for bikes than for cycles (on a motorcycle, you're usually going fast enough that you'll die from your other injuries (at least, that's why i never one: until i hit a deer in a park)).

Fernandinande said...

[he was] an urban planner in Portland, Oregon

So not much of a loss.

Tom T. said...

What if one's spouse transitions genders? I'm curious whether the no-divorce cohort would indeed remain married under those circumstances.

mockturtle said...

When my husband developed Lewy Body Dementia, he became a different person: Paranoid, hallucinating, delusional and combative. Half the time he believed I was an impostor. During the ten years of his illness I grieved far more for the husband I knew than I did after his death.

Maillard Reactionary said...

"Naming my grief is helpful because it invites me to engage in rituals of grieving."

Ye gods, are these people for real? "I will now observe myself engaged in my ritual of grieving."

You can overdo this whole articulate, self-awareness thing. (Is it one of those "Things that White People like"? Honest question.)

Sometimes a disaster is just a disaster. Grieving, tears, lasting sorrow, despair are all around us and are, generally speaking, incurable and untreatable. The universe doesn't care; it isn't even aware of it. It's all on you. That sucks, but that's how things are.

Enjoy the ride.

NotWhoIUsedtoBe said...

Bicycle accident. I wish people would start questioning the safety of bikes. I don't know any serious cyclist who hasn't had a bad accident. They aren't anywhere near as dangerous as motorcycles, but they are much more dangerous than cars.

As for the column, it's sad. The wife is dealing with it as best she can, and good for her.

Rick67 said...

Interesting article that strikes close to home. Since my accident and brain injury 3 years ago friends and family occasionally say they "miss" me.*

I am right here. But I understand what they mean.

*There is an exceptional science-fiction series Travelers (set in our time, about people who travel here from about 900 years in the future) on Netflix. One of the characters is actually "rewritten" (her consciousness/personality is edited by an expert from the future). Later a team member says he "misses" the "old" Person. Because she is different from before.

Maillard Reactionary said...

John Lynch: You're right, in a collision with a car, the cyclist is going to end up second best, often with prejudice.

Back when I was cycling, I crashed from hitting a sinkhole in the pavement. We were going about 19 mph at the time. I took out the guy behind me. We had to sit for a while to remember where we were, and how we got there. Fortunately there were no motor vehicles around when it happened.

If I hadn't been wearing a helmet--which was smashed--I may well have ended up crippled or dead. As it was, I cracked five ribs, but was otherwise not too much worse for wear. (I learned about the ribs several days later, after I had ridden home 20 miles from the accident site.)

Wear your helmet when cycling, folks, and stay off of roads with a lot of cars.

mockturtle said...

Everyone I know who cycles has had a terrible accident. Part of this is due to the incredibly stupid behavior of cyclists, themselves. Winding, mountain roads with no shoulders and considerable traffic? Death wish?

Yancey Ward said...

I have written about my father here a few times in last two years. He remained himself as I had always known him until August of 2017- at that point, the man I knew and loved disappeared seemingly overnight. It broke my heart to have to see him like that- helpless, confused, and fearful all the time. He never forgot who my mother and I were, but it was clear he didn't really trust that we were who we appeared to be. Yes, I was grieving him a year before he passed away.

rhhardin said...

Everyone I know who cycles has had a terrible accident.

I have over 350,000 miles on a bicycle and no problems.

mockturtle said...

Well, rhhardin, I don't know you. ;-)

Bill Peschel said...

Virgil Hilts said...
Fascinating story in New Scientist (Instapundit linked) that suggests Alzheimers may actually be caused by porphyromonas gingivalis, the key bacteria in chronic gum disease. We may have been fighting the symptoms rather than the cause. I hope this is true. I am going to brush my teeth and mouthwash (again) now.

Let me add this: My f-in-l is rail-thin but has a belly. He had been mentally declining for several months (he's early 80s), but his doc had shrugged and said that's aging.

This last visit, his German wife went with him and insisted the belly, which had been growing, be looked at. She's a tough bird, and it took a lot of effort to get the doc to pass him on to a specialist ...

... who discovered a blocked bladder and drained six pints of urine out of him.*

He was put on a course of antibiotics for the bladder infection, and within days he started regaining his mental faculties.

The connection between antibiotics and brain functioning was repeated recently with a friend of ours, who is taking care of her 91-year-old mother.

(* Added note: I love my f-in-law, but he's one of those stoic types who will not, will never, tell you if something is wrong. He'd been having trouble peeing, but wouldn't say anything. Now his bladder is distended beyond repair and he's on a catheter. Guys, don't be like him!)

BUMBLE BEE said...

Brain injury #2 the wife was crossing the street in front of our house on a perfectly sunny day shaded by tall oaks, to do her 5 mile walk. Struck from behind by an elderly driver, (a doctor), who was returning from his eye exam with pupils dilated. He didn't see her. Thankfully, a glancing blow sending her to the asphalt.
If you're going to share the street with who knows who, BE SEEN. Riding a bike? Think deer season, not Tour de France, and dress to be seen. Bright clothes on moving body parts. Walking? Same same. Of course bike helmet.

Tomcc said...

rhhardin- 350,000 miles would be 20 miles per day, every day, for 48 years. It seems a high number.
To the issue of living with someone whose cognitive abilities have been altered to the point of changing their personality, I feel for the author. Her description makes it seem that her husband is physically okay, but can no longer plan for and/or enjoy life's events. Both of their lives have been diminished as a result. It's good that he survived his injuries, but sad that they will both enjoy life less.

Ralph L said...

He was put on a course of antibiotics for the bladder infection, and within days he started regaining his mental faculties.

Doc Martin had a patient whose daily dementia was caused by dehydration. She wouldn't drink during the day for fear of peeing in her sleep, thinking her son would send her to a home.

My dad's thirsty switch has been broken for years, so I now have to push fluids on him all day. He won't drink overnight. Winter dehydration caused painful back muscle cramps that caused a compression fracture. Advil led to a bleeding ulcer that nearly killed him.

Leland said...

It's finding yourself at the beginning of a marriage with someone who used to be sharp and energetic and is not slow and retiring.

We knew a couple that faced this. The husband was driving home from work when a city dump truck ran a red light, hitting his car, and pushing it into some workers. The legal result was pathetic, but that's a different story. The husband was left in a mental condition as described in the other case. He needed constant care, with the wife having to abandon her job to provide care full time.

All of us would have understood her moving on immediately. However, she had no intention of doing so. Instead, she stayed faithful for several years until his injuries finally caused an early death. Her commitment, in my view, made her an incredibly positive role model for their only child. It showed her the value of life and the value of the child's father to the mother.