August 24, 2011

Pat Summitt on her dementia: "It's not going to keep me from coaching. If anything it's going to inspire me more."

And her son, asked to comment, says: "It's hard to fight an invisible opponent, and now... we know what we're up against."

Have you thought about how you would respond if you got a diagnosis of dementia? Now that you've heard from Pat Summitt, will you think about it differently?

55 comments:

Curious George said...

I would go crazy.

Robert said...

Wait until she calls timeout late in the fourth, when there are none left.

traditionalguy said...

Pat has been the heroine of female leaders for years. But now she needs to let another coach do the job.

Mental slowness is not competitive.

People have human weaknesses. Their days are numbered.

m stone said...

As a caregiver to a dementia family member, there are no heroics and no determination makes any difference.

Dementia is an unstoppable, frighteningly progressive loss of memory and cognition.

Dan in Philly said...

I would hate the very concept, and I honestly don't know how I could possibly deal with it. I would rather lose my arms and legs than my mind.

That being said, Pat operates her mind at a very high level, and it's entirely possible the only reason they detected it so early is because she requires so much of it - ie if she had a job where she didn't need to be so sharp and didn't excercise her brain so much she might not notice for years.

I think one of the reasons dementia is so poorly understood is due to the fact that most don't realize when it begins to onset - by the time they notice they are far gone. I hope that this horrible thing happening to such a person as Summitt will increase awareness of it and hopefully also the understanding of the effects on the brain.

God bless her.

ndspinelli said...

Dementia didn't stop Bobby Knight from coaching.

AllenS said...

I've been called worse.

robinintn said...

It's so damn sad, but I wouldn't send my child into a program coached by someone with dementia.

G Joubert said...
This comment has been removed by the author.
Original Mike said...

Is that what happened to Woody Hayes?

Known Unknown said...

Wait until she calls timeout late in the fourth, when there are none left.

Dementia got Chris Webber early!


Also, there's no 4th quarter in college basketball. They play 2 halves.

Titus said...

I heard a story on the Canadian Broadcast Network that some 8 year old delivered his mother's new baby.

I find it disturbing.

He said he knew how to do it watching Hospital TV Shows.

He said the entire procedure took one hour and that his mom's pussy did not tear when giving birth.

This was in Canada, natch, probably couldn't get to a hospital because the wait, so the kid saw his mom's pussy and now has seen it all stretched out. He also knows if she shaves the beave or goes full carpet.

How would you feel if your young child delivered your baby?

Dust Bunny Queen said...

Is dementia really the same as Alzheimer's Disease?

I think they are part of a broad spectrum, one of which is Alzheimer's. Why did they use the word dementia instead of the actual term for her illness?

We have had a friend whose husband recently rather rapidly succumbed to Alzheimer's.

Very sad to see the husband realizing his situation in the beginning.

Such a terrible struggle for the family to deal with it long after he was beyond being able to be aware of not only his own self but of anyone else.

If I were diagnosed, I think I would make it a point to get together with all of the significant people in my life as soon as possible to share memories. Perhaps, write essays or make recordings and put them together with photos from our lives together.

I would also give away all of my treasured possessions NOW while I could still experience the joy of giving.

Known Unknown said...

Maybe she'll finally call for "The Voltron" in which all five players combine to transform into a super, unstoppable, 18-foot tall player.

edutcher said...

I wish her luck, but somebody needs to talk to her.

This is not something she will be able to control.

PS According to The Blonde, you're correct, DBQ.

YoungHegelian said...

I read a couple of articles on this woman and what struck me was what a nasty person she was (is?) even before the dementia.

Hitting one of her doctors! Telling another "Do you know who I am?" as he gave her the diagnosis.

I don't follow sports much, but I know that many coaches behave like pricks (e.g. that clown in Indiana throwing chairs). She, being the winningest of the winning in women's college basketball, may have felt entitled to be prickish for a long time now.

I don't wish suffering on any creature, but she didn't inspire a lot of sympathy in me, just sadness for those in her orbit as she declines.

Please feel free to set me straight if I've missed something here.

TWM said...

"Dementia is an unstoppable, frighteningly progressive loss of memory and cognition."

Which seems to progress even more quickly in the relatively young, so I doubt she will be able to coach as long as she wants. Sadly.

SomeoneHasToSayIt said...

I would immediately start low-carbing, in the strictest possible way. There is growing evidence it will prevent it. Maybe it can arrest it, too.

MadisonMan said...

Her son is very young to lose a Mom, inch by inch, this way. I'd want to spend a little more time with my kids (they might be alarmed to know!), which would mean retiring. But I say that now...I don't know how I'd react to a terminal diagnosis.

It's a long road to acceptance.

William said...

How can someone with dementia judge the extent and limitations of her illness? Someone who considers dementia a source of inspiration is demented.

William said...
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kjbe said...

Yeah, I'm not thinking it's the best to stay on, but then, I'm not her. Walking away from a long, successful career in coaching, because of this diagnosis, is a lot of reality to face, for anyone. I wish her and her son, the best.

KCFleming said...

My plan, as I have repeatedly told my kids, is to give me $200 and put me in an old car and say goodbye.

I'll prolly end up on the side of the road in Scottsdale, selling rocks.

The Dude said...

Who cares? She coaches women in a sport unwatched by most people. Demented or not, she is irrelevant.

Calypso Facto said...

Go now, before every call of every future season is questioned.

Carol_Herman said...

Not really. It's a terrible diagnosis. It also means "someone" noticed the "missing things," already ... for questions to be raised with a doctor.

As Ronald Reagan said: It hurts the family members more. Most patients don't even know the differences from one day to the other.

Horrid diagnosis.

Carol_Herman said...

Oh. The skills that go.

I remember reading that Ronald Reagan, back in 1992, when he wrote his letter to the American People ... he actually no longer remembered his stay in the White House.

I had a friend who got this disease. What she lost first were her skills in real estate.

Then, when we'd drive the neighborhood ... and I'd point out to her homes she had taken me into! And, we had discussed before. She just shook her head. EMPTY.

The first things that go are the talents.

Same with Iris Murdoch.

But it's a long haul.

SunnyJ said...

The ignorance portrayed in the posts here is exactly what I see on a daily basis working in physical therapy with patients with the dementia/Alzheimers diagnosis.

The patients are not the problem. Those observing are.

Dementia can be an indpendent diagnosis or may be related to a syndrome, like Parkinson's disease. Though Alzheimers type may be given as a sub diagnosis of dementia, at this time it cannot be confirmed until autopsy.

Dementia is never the same in any two people. All dementia patients respond differently to medications, levels of medications, environment, verbal and manual cues and within wide ranges of response throughout the day.

There are generally ranges of responses within a spectrum as the dissent into to end stage develops. But, again, it is specific to the individual and can be accelerated or slowed based on other diagnosis the patient may have, responses to treatments and environment.

You do not become and idiot on Thursday. You do not wake up one day without cognitive function or memory. You do not suddenly look up and not know a member of your family. It is much more varied than that. We find it has been inadvertently covered up by caregivers for quite awhile before they come to the realization that something is wrong. This is especially true of men with spouses that fuss and care for them, espcecially those that jump in and answer questions for them when they are slow to respond. "Bob doesn't like pepper on his steak"..."Bob wants the ballgame on at 3PM" Where in fact, if you seved the steak or didn't turn on the game, Bob might not notice. Some patients personalities change and others just become more intensely whatever they were prior to the onset.

The most important thing I'll leave you with, is that the most end stage dementia patient knows when they are being treated with contempt and disrespected with tone, words, postures, eye contact etc. Many of the posts here are all of that and more.

How should Pat Summitt manage her dementia diagnosis? I suggest those so sure they know here try the 11th Commandment:

"Thou shall not "should upon" thy neighbor."

YoungHegelian said...

@SunnyJ

What the hell are you talking about:

"The ignorance portrayed in the posts here is exactly what I see on a daily basis working in physical therapy with patients with the dementia/Alzheimers diagnosis."

The comments here seem pretty much sympathetic, at least from those folks who followed her career and liked her before.

The preponderance here think that she should retire soon for family and professional reasons. That doesn't seem at first blush to be unsympathetic or cruel advice, just their realistic view of the available options. Do you disagree?

"The patients are not the problem. Those observing are."

No, Sunny, the patients have the disease, no the observers. They are not the problem, but they have the "problem" just like anyone with an incurable disease has "the" problem.

Trooper York said...

If Andrew Sullivan can keep blogging and Carol Herman can still comment why should we stop Pat from coaching.

sane_voter said...

the potential harm in her staying as a basketball coach is not the same as if she was a surgeon or pilot, but it could short change her athletes if she is not functioning at the level she has over her career. She obviously has noticable mental effects since she went for a diagnosis, so I think she should retire now as her decisions will be second guessed way more than normal, espcially if the team has a drop off of their normal performance. Of course the mental stimulation of being a head coach will probably slow the progression of the disease.

michaele said...

Since I live in the outlying Knoxville area, I watch a fair number of Lady Vol games. Pat has a very competent coaching staff and has now stated up front that more and more responsibility will be handled by her assistants. She will probably be very hard on herself in evaluating her decision making skills. I don't envy sports announcers who will probably be tip toeing around how frequently to bring it up.

Christy said...

Thanks, Sunny.

I applaud Summit for having the courage and willingness to recognise and face the changes. Some of the commenters here are of Summit's age and have a close relationship to words (or we wouldn't be commenting.) How many of us closely examine the issue of that perfect word which is on the tip of our tongue, but we just can't quite get it? Our work and lives don't always depend upon pulling that word out this very second, we can let our writing sit for an hour or a day. Summit's career doesn't allow that luxury and she faced those small issues straight on.

My mom faked it for years. She even had her doctors telling us it was just normal aging.

Carol_Herman said...

Nancy Reagan was an excellent wife!

She really protected her husband!

And, there came a point where Reagan could no longer go to his Century City office. He didn't recognize anybody. He didn't even recognize the photographs up on his shelves.

And, then? And, then, Reagan got terrified of people! (Since he was recognized!) But Reagan couldn't understand why people he didn't know would come over and try to shake his hand.

He didn't mind the children, though.

While the Secret Service developed a pattern. Because Reagan had nots of energy. So they tossed leaves in the swimming pool. And, he'd scrape them out. (If he still had lots of energy left, the Secret Servicemen would add more leaves into the pool.)

Nancy Reagan however made sure NO ONE came by ... to pay a "family visit." If the next step would have been to entertain the press!

Real patients need this kind of protection.

Not many get this. Not many find the love that Reagan found and got.

The diagnosis, however, is terrible.

Not in the beginning.

Carol_Herman said...

I know a man who is a chemist. Who saw this happening. But couldn't call anyone else's attention to what he saw. So he called UCLA and set up an appointment.

It was there, after extensive testing, that the diagnosis was made. And, yes. Doctors must tell the patient!

The woman was also told she could no longer drive. And, UCLA told the DMV.

Only later did this woman's kids catch on. And, only recently did she pass.

She was put into a hospice at the end. And, on her first day, she managed to exit the elevator on the wrong floor. Where she scared the living daylights out of others ... walking into their room, instead of her own. (And, her family had to find another place, pronto.)

At the end it was pneumonia. Bedridden. Unconcious. And, just a matter of time ...

Carol_Herman said...

According to Kubler-Ross, at first, there's denial.

carrie said...

The book Still Alice by Lisa Genova presents a good picture of what life will be like for her and her family. It is sad when alzheimers strikes at such a young age.

SunnyJ said...

@YoungHegelian: You prove my point exactly. What do you know about what is "realistic" or what someone else's experience will be. You haven't a clue what her options are or should be for her.

In my informed opinion your comments regarding what you read as her response to her Dr's are ignorant. I've listened to more rude and obnoxious "well" people than those with dementia, though at the point of diagnosis you cannot know if that is her diagnosis responding or her prior personality or a combination of both. As I said, dementia patients may lose context of words and meanings but they know tone, posture, gesture etc. With reduced impulse control, condescesion of they type some medical professionals assume might be a trigger...including speaking to her family instead of to her while giving the diagnosis, as if they are a child.

Ms Summitt may not have noticeable signs for years...or she may be disoriented with sundowners tonight.

It will be whatever it will be.

The observers ARE the problem because they want to manage what is not theirs...they are the ones embarrassed by what it is considered not normal behavior, not the patient. They are the ones grieving the loss, not the patient. Patients are fearful of what is to come, and during some disorientation or when provoked by being prompted to do something they do not want to do. The hygiene issue becomes a fight for control, as the caregivers fear being judged if their patient appears disshevled or dirty and the fight is on, as if that bath was life or death.

The patients are not the problem. The societal response to their behavior and caring for them is, because it cannot be scheduled with a pill. It is massively variable from person to person, and with each person from moment to moment.

You ask if "you missed something here"? Yes, you missed the bus.

TWM said...

"The ignorance portrayed in the posts here is exactly what I see on a daily basis working in physical therapy with patients with the dementia/Alzheimers diagnosis."

Not all of us are ignorant of this horrible disease. Fact is, early onset Alzheimers does normally progress quickly and Summitt's job is one where its effect would just as quickly make it impossible for her to do her job in any meaningful way, save being a coach in spirit. Perhaps that is enough, though.

YoungHegelian said...

@SunnyJ

"In my informed opinion your comments regarding what you read as her response to her Dr's are ignorant."

You consider it okay for patients to hit or verbally abuse their caregivers? Do you let your patients hit you?

What I simply don't understand about your postings is all the anger you are spilling into this forum, concerning a bunch of postings that seem really rather mild.

You may have issues with your patients and their caregivers. Take it up with them, and leave us out of your pissiness.

Julie C said...

I have been dealing with my mother's dementia for several years now. I had a mom that the other kids loved - always nice, great sense of humor, just an all around sweetheart.

The dementia changed her personality - at first I thought it was just aging and some issues she always had with shyness and anxiety. After she was diagnosed and the disease progressed, she became very angry and mean and eventually ended up attacking my father one night (he was too weak to defend himself). We had to take her out of the home primarily for his protection, since having full time caregivers in the home hadn't protected him. She was also prone to wandering (or at least trying to escape).

It is a very tough disease, as others have mentioned. My biggest issue has been with a few of the paid caregivers, who don't seem to get that dementia is not the same as mental illness. I've had some caregivers treat everything my mother says as though it was gospel - she once told a nursing aide that no one in her family ever came to see her (which was not true). I got a call to come and see her, so I did. I was introduced to her with a "look! here's your daughter! She came to see you!" and she looked at me and at the caregiver and said, 'that's not my daughter. I don't know her." Towards the end of my dad's life she didn't know him either - to her he was just some old geezer, not the handsome young man she had married.

Sunny I appreciate your perspective and all that you are doing. It can't be an easy job to have. Most of the caregivers I've interacted with, those who specifically deal with dementia patients, are heroic. And I winced at some of the jokes here too. But honestly, my sense of humor is the only thing that keeps me going sometimes. The good news is the dementia has not impacted my mother's ability to wise crack.

Julie C said...

And my mom's pretty perceptive too - Obama was doing some live town hall type event on tv and the staff at her assisted living facility was watching it. My older son and I sat with her and she said to him, "who's that on tv?" My son said, Grandma, that's the new President."

Her response? She grunted and said, "Well, he sure says 'umm' a lot". And she was right!

We had a good chuckle over that one.

Bryan C said...

It would scare me. I know I'd try to compensate; I've always compensated for having a pretty bad short term memory, so I could probably limp by for a while. I'd hope my friends and family would have the courage to remind me of my own limitations.

The obvious difference is that sooner or later I'd be unable to remember, accept, or understand even why I was supposed to be compensating. Barring radical medical or technological breakthroughs, that'd be the end. So, as Insty says: Faster, please.

Unknown said...

I don't follow sports, but Pat Summit seems to have done a great job raising a strong, loving son. And for that, I admire her a lot.

SunnyJ said...

@YoungHeg: You said:

"Hitting one of her doctors! Telling another "Do you know who I am?" as he gave her the diagnosis.

I don't follow sports much, but I know that many coaches behave like pricks (e.g. that clown in Indiana throwing chairs). She, being the winningest of the winning in women's college basketball, may have felt entitled to be prickish for a long time now.

I don't wish suffering on any creature, but she didn't inspire a lot of sympathy in me, just sadness for those in her orbit as she declines."

And you're commenting on my "pissiness"? I'm commenting on your ignorance as you seemed quite OK with commenting on Ms Summitt who you do not know, did not know and what is or isn't right options for her...though without sympathy, you are careful to say. So, take it or leave it, no sympathy from me for you either.

You ask: Do I let my patients hit me? My friend, no one "lets" them do anything...they do what they will. Many years ago (and sometimes unfortunately still today)they were restrained and tied to chairs/beds or drugged into oblivion to be easier to deal with. Now we cover doors with posters that look like book shelves, use music, swings, lighting, pads on hip bones to prevent fx if they fall, mattresses on floors and on and on to create a safe environment.

Our job is to observe closely, find ways to communicate that work for each one, attempt to avoid triggers but be ready to protect ourselves and others as needed...without judging their actions. For caregivers/family members that want to learn, we can show them ways to communicate, but it takes a great deal of patience...and as one poster remarked, these patients do not stop being people and are perfectly able to manipulate and play one against the other and all other human behaviors too. As well as be very very funny and witty and "without brain to mouth brakes" will be incredibly direct.

There have been some very bitter sweet posts here from those that have actually lived this experience. Read and learn.

roesch-voltaire said...

For some exercise, diet and mind games can slow the process, and I hope this works for Summitt. My mother had dementia verging into Alzheimer's disease. One mind game I played with my mother included calling at night and pretending to be radio quiz host asking her to answer questions-- often related to her childhood on the farm--what is the name of baby cows etc. We struggled through twenty or so questions, and I often felt these games combined with all the walking I would make her do when I visited the nursing home, or had her stay with me for a weekend visit helped to keep her mind more active. At the age of 94, when she passed, she still recognized her son.

Unknown said...

You got dementia, how can you remember what you think? How can she be inspired by things she has forgotten?

Trooper York said...

You know you are a good man Rochy.

For a communist.

Trooper York said...

I do the same thing with my uncle.

I ask him questions about the days when we used to go fishing.

"Hey Nino and Chubby want to know if you are ready to go fishing tomorrow. What rods and reels do want to bring? The spinning reel?
Are we going for porgies or flounder?"

He perks up and starts answering the questions. He can remember stuff from forty years ago but forgets what he had for lunch.

G Joubert said...
This comment has been removed by the author.
Deborah M. said...

I have lost four family members to Alzheimer's disease: grandmother, mother, aunt and uncle. The outlook for my old age is not promising unless medical science comes up with something pretty quickly. The disease did indeed intensify my mother's anxiety while other people I have known with Alzheimers were seemingly blissful. Now we are witnessing my mother-in-law's dementia progress in a fairly typical fashion. I think you are correct that keeping the person active, mentally and physically, even after diagnosis is very important. My mother declined rapidly and i am convinced it was partly due to her inactivity and depression. She also hid her disease successfully for who knows how long - we did not know anything was wrong and once we did, she went downhill fast. But maybe that was merciful.

Dust Bunny Queen said...

And you're commenting on my "pissiness"? I'm commenting on your ignorance as you seemed quite OK with commenting on Ms Summitt who you do not know, did not know and what is or isn't right options for her.

From Sunny who seems to have no problem herself commenting on commenters that she doesn't know or know what 'their' personal situations are.

Judge not....

I do that all the time (riff on other commenters), but I'm not on my supercilious high horse about it either.

Francisco D said...

DBQ,

Your comment was very thoughtful.

The medical community believes that almost 65% of dementias are Alzheimers and almost 35% are vascular (e.g., stroke related). The Loewy Body and heavy metal toxicity dementias are rare.

However, we are starting to understand that the two primary forms of dementia are not mutually exclusive. You can have DAT and vascular dementia. They have different courses of progression which really confuses things for caregivers.

Caregivers have it hard. It helps them to know that a demented parent is not behaving in a volitional manner. The kids need to forget the past struggles with their parents.

pm317 said...

Wow, that son looks like a kid but so well poised like an elder. She is lucky to have him by her side.

Methadras said...

Seeing dementia in people is an awful thing to witness. Seeing it in dogs is just as awful.