May 6, 2012

"The last five years have been wrenching and often lonely. Michael was the love of her life."

"When she married him, her sister asked, 'How does it feel to hit the jackpot?' In more than 30 years of marriage, she never heard him say an unkind word about anyone. He was an engineer, lectured at conventions, did volunteer work, belonged to a history book club, ran marathons. Now he can no longer speak, read, write or walk."

Frontotemporal dementia — it's not Alzheimer's.

"Whatever happens, we will go through this together. I will be there."

36 comments:

fleetusa said...

Truly sad. She's a saint.

Awesome said...

I'm guessing this is #1 on the most women emailed list of NY Times stories, huh.

MadisonMan said...

I'd like to think I'd do the same for my spouse. I hope I never have to.

Milwaukee said...

So, how does this compare and contrast with Creutzfeldt-Jakob disease? That too involves proteins, only then contorted ones. Since CJ is related to BSE, bovine spongiform encephalopathy. BSE is related to chronic wasting disease, which is has been found in Wisconsin.

I can not donate blood because I lived in England for over a year, before 1994.

Astro said...

There are a number of horrible neurological diseases like this that few people have ever heard of. The individuals suffering from them experience the loss of cognitive functions, ambulatory abilities, ataxia, lose the ability to talk or swallow,... the list goes on. Loss of a sense of dignity too, as dependence on others become necessary. (Google 'Multiple Systems Atrophy', for example).
In Congress's unfathomable wisdom, only ALS, Lou Gehrig's disease, qualifies a person for medicare regardless of age. Every other disease? Too bad.

edutcher said...

I took care of my mom, who had Alzheimer's and then helped The Blonde take care of hers.

I can only say, she has my best wishes and she can't do it alone. She'll find out who her real friends are, in and out of her family.

AllieOop said...

CJ disease, affects the entire brain, This type of dementia seems to affect only the frontal lobes. CJ is caused by a prion. I took care of one CJ patient in all my years of nursing, the behavior and physical characteristics were a bit different than other dementia patients.

This Frontal Lobe Dementia and Alzheimer's has no connection to prion ingestion, but has been associated with higher than normal blood sugar levels for an extended period o time and a genetic predisposition.

Deb said...
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The Crack Emcee said...

"Whatever happens, we will go through this together. I will be there."

Those are the most beautiful words in the world, and I despise anyone who doesn't understand what they mean.

They are the problem with the world.

Jordan Rodriguez said...

But Ruth said, “Do not urge me to leave you or to return from following you. For where you go I will go, and where you lodge I will lodge.

Pogo said...

My dad died of Lewy body dementia a week ago. His trials weren't as bad as those in the article, but bad enough.

Lyle said...

This is what wife and husband is.

MadisonMan said...

Pogo, I'm sorry to read about that. 'Bad enough' in that situation speaks volumes.

AllieOop said...

Very sorry to hear that Pogo, my condolences.

Peter said...

So, how does this compare and contrast with Creutzfeldt-Jakob disease?

That's a guaranteed death sentence and usually finishes people off in a few months. People don't linger for years, like in this case.

30yearProf said...

My God but that's a scary story.

Maybe I should go off my cholesterol pills?

Pogo said...

About a month before he died, he did a nice watercolor of two peaches. Later that day he saw the painting taped on the wall in the kitchen and asked who did it.

Mom said,"You", and he laughed and said, "hey, I'm pretty good!"

PETER V. BELLA said...

My mother died this winter of advanced demetia. It was a horrific thing to watch her deteriorate so swiftly. But she lived 96 years.

bagoh20 said...

I have never understood the fear that is often expressed of dying alone, as when people say they want to remarry in older age so they don't have to die alone. Probably my greatest fear is that I would be like this man. Not just dying, but dying helpless, useless, and putting someone I love through years of suffering; ruining what little they have left of life just because I got dealt some bad cards myself.

I understand the risks that some people would feel pressured to do what they may not want, but I still personally want the option to end it quickly if I get to this point, whether I'm alone or not, but especially if I'm not.

You can't ask the person who loves you to approve of such a thing once you get sick. Hopefully you can discuss it ahead of time, so your loved one does not feel guilty for your choice.

Dying is not so bad, but ruining the life of someone you love sounds horrible to me. To live your whole life trying to be kind, compassionate, and helpful to those around you, only to end it by dragging your loved ones through years of toil, pain, anxiety, and loneliness is just not how I want to write the last chapter.

I wish we could learn to be more comfortable with that. It's all a very hard thing, with no good alternatives.

My mother who is in her late 70's and still very active just lost her husband after a years-long demntia following a stroke. It was an enormous relief to me. She cared for him every day for years, and it was brutal physically and emotionally. He often said he wished he could die, and those were always the times when he was most lucid. The drawn out medicine extended last years were heartbreaking, and I wish he had the ability to avoid doing that to his beloved wife, because I know that's exactly what they both wanted. If he had passed years earlier, he would have missed out on absolutely nothing but suffering and indignity for himself and thiose he loved.

Shortly after he passed, my mother adopted a dog for companinship and today she left on a week-long cruise with her daughter - finally free to live a day as it should be lived - living. I'm so very thankful for that.

AllieOop said...

Bagoh, what many lay people and people who have always been blessed with good health don't realize is that any disease process that results in death isn't simply a nice sterile "slipping away". Suffering, pain and misery often accompany it for the one going through it and the loved ones, especially the spouse.

I wish people would be less judgmental about end of life issues.

Pogo said...

It is very hard on the surviving caregiver, but suicide has its own lasting damages.

bagoh20 said...

"It is very hard on the surviving caregiver, but suicide has its own lasting damages."

But in this context it doesn't have to. With modern medicine, we are, in many cases, extending nothing other than misery, indignity and cost. When that's all you have to look forward to, there should be no stigma, regret, or guilt about deciding on a more compassionate, and I believe, life affirming choice.

We should develop more appreciation for the quality of life over the quantity of years. Recently, our culture seems to have moved the opposite direction, where we seem willing and almost obsessive about living less so we can live longer. I think that's the wrong balance.

AllieOop said...

Truer words Bagoh, I couldn't agree with you more.

I don't think we need to be unmindful of trying to stay healthy though, because being ill due to poor choices doesn't make for optimal living either, balance IS the key.

Methadras said...

Pogo said...

My dad died of Lewy body dementia a week ago. His trials weren't as bad as those in the article, but bad enough.


Sorry to hear Pogo. My heart is with you and yours.

leslyn said...
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Carnifex said...

My wifes greatest fear is to incapacitated, even before she had her stroke. She has asked me to "preserve her dignity" if she ever does. She knows my feelings about killing, but she asks this never the less. My dearest prayer is that I don't ever have to make that choice, because I will follow her wishes. Damn, now you got me crying.

Both my grandfathers were incapacitated. One by stroke, was totally paralyzed, the other lost his mind and had to be strapped down by the end. Each is hell.

Prions scare the ratfuck out of me.

Bender said...

I have never understood the fear that is often expressed of dying alone

A daughter of some friends of my grandmother died alone. After cutting her wrist in the bathtub.

They found her a couple weeks later. (Do you know what condition a dead body is in after being in the water for that long?)

Even those who do not make that curiously phrased "life affirming choice" through self-murder, those who simply live alone are right to be concerned about dying alone. Die alone at home and who knows when someone will find you lying dead in your bed or on the floor?

A roommate of mine died alone too at age 34. Or, at least, alone in his room. He didn't bother to tell us that he was diabetic. So he died alone in his bed, which is where I found him two days later.

Bender said...

As for suffering --

There is a choice. One can choose to have suffering be totally meaningless, leading to existential nihilism and despair, wherein one can be deluded enough to believe that a plastic bag over the head is actually a moral choice.

Or one can choose to obtain meaning in that suffering. There is one particular meaning that one can obtain in suffering, both for the one who suffers and those around him or her. Great meaning. And not the meaning of sado-masochism or stoicism, but instead humane, noble, and truly life-affirming meaning. And, thus, authentic hope and fortitude to endure and persevere.

But some people prefer to reject this particular meaning, to laugh and mock and jeer at it. Well, that is their choice. They can choose the nihilistic abyss if they really want it.

Palladian said...

It's on topics like this that I really appreciate your viewpoint, Bender, lest you think that I harbor universal antipathy toward you.

The Roman Catholic Church's view of the dignity and nobility of human life has always appealed to me.

Palladian said...
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Palladian said...

Recently, our culture seems to have moved the opposite direction, where we seem willing and almost obsessive about living less so we can live longer. I think that's the wrong balance.

I entirely agree.

This is the day which the Lord hath made; we will rejoice and be glad in it.

Roger J. said...

A truly moving story--and for those in our commenting community who have lost loved ones, my sincere condolences.

beast said...

I have been living with my GM for 23 years now Her diagnosis for dementia was given 17 years ago.The drugs have been great but with every medical issue she slips a little bit more.Since the last bout with pneumonia she has become monosyllabic.Ten days ago she fell with a home health care nurse my sister and myself within 15 feet of her.She did not call out for help.She now has a non displacement fracture of her hip.
For those of you who are not going through this be very aware.This is the new reality of medical care for many more people.

beast said...

I have been living with my GM for 23 years now Her diagnosis for dementia was given 17 years ago.The drugs have been great but with every medical issue she slips a little bit more.Since the last bout with pneumonia she has become monosyllabic.Ten days ago she fell with a home health care nurse my sister and myself within 15 feet of her.She did not call out for help.She now has a non displacement fracture of her hip.
For those of you who are not going through this be very aware.This is the new reality of medical care for many more people.

Pogo said...

Thanks for the condolences.

damikesc said...

I wish people would be less judgmental about end of life issues.

It seems to be a rational fear issue. A "There But for the Grace of God Go I" situation. I cannot even imagine having to undergo these types of nightmarish conditions --- to wither away relentlessly and not be able to do a thing to reverse its course.

Even thinking about it leaves people, as a rule, uncomfortable. And I cannot fault them for that. A family friend of my family's has dementia and it took her kids years to finally realize how bad it got and to have her committed to a home. It just wrecks them to visit her and not have her know who she is. They cannot take their kids with them because she doesn't recognize them at all and it hurts the friend and her grandchildren.

Would I end it quickly in that case? Yes. My wife would not like it, but while I have the chance to think it through, I would never want to force her to endure that type of Hell. But the hope for a cure is always there and a lot of people hold out a lot of hope.

I can come to grips with killing at that point, in spite of my religion's strong aversion to suicide, simply because I believe you are extending life beyond God's plan and the misery you will experience from that point forward is not something anybody wants.

...that being said, if it was I who were healthy and my wife who was suffering, I cannot fathom a more painful choice I would have to make.

And, in the end, that is why so many people oppose allowing doctors to assist.

Because it might be you having to make that decision for somebody you love more than anything.