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 Reaction to Seeing Muhammad Ali 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Reaction to Seeing Muhammad Ali
Jeanne, I was referring only to the public spectacle, not to private relationships. Would my husband willingly [knowingly] want to be presented before his former colleagues, who have not seen him for twenty years, in his present condition? Not a chance. If Ali was fully aware of the situation, then more power to him for doing it.

Perhaps this is something we need to include in our Advanced Directives, especially if we are public figures.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Apr 08, 2012 10:05 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Reaction to Seeing Muhammad Ali
Good point Pat. Luckily I'm not a public figure so I won't ever have to worry about it! But, perhaps this is a worthy discussion to have with our families in case we are in a medical situation where this will be important for all concerned.
I was very happy when some of my dad's oldest and dearest friends came to see him in his final week. I know some of them who hadn't seen him in more than a year were quite shocked to see his deteriorated physical state and to experience his almost total inability to communicate. I was heartbroken that a few couldn't bring themselves to visit him because of the aforementioned. It is still painful to think about how some of his friends abandoned him in his final months because they couldn't bear to see how he was. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Apr 08, 2012 11:02 am
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Joined: Tue Mar 29, 2011 3:02 pm
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Location: East TN
Post Re: Reaction to Seeing Muhammad Ali
Jeanne,

I absolutely respect people's wishes….for themselves….and their L/O's….

I have followed Pat's story….I see nothing but good there…..a Man with wishes and someone who cares deeply for him to carry those wishes out to the best of her ability….I respect that….

….on Ali…..I never liked him….when I was a young person….or a young man….
it didn't help that I never liked boxing…..

but, as an adult, I respect his integrity to his beliefs….even when he choose things to do that I detest….he stood for what he believed and paid societies price for the choice without complaining….and then continued with life….in his way….

My problem….was with questioning the motive….in and by the way it was done by someone who dismisses my very existence…..leads me to believe 'they' just don't want to see 'it'……
now….I could be wrong…..I could be delusional…..

But, I question Boldly….what happened to the recognition of Life?

Have any of you read Kubler Ross?
What I got out of it…well multiple things….but one in particular….
was the antiseptic cleansing of Life…..
go to a hospital and die…..go to a hospital and be born….
go into another room to vomit….
go into another room and shake….
go into another room and mumble….
just go somewhere else…..where I can't see you…..

I am Alive…..Warts, Farts, Diarreaha, Urine on my shorts, tremors, verbal blocking, inability to add numbers in my head….my constant complaining….my constant dreaming….
why should I go into another room?
who benefits?
Me?
You?
Neither?

There is a story in Kubler Ross…Death and Dying….
about a Farmer….who in his 'death bed'….in his house…..
gathers his family, friends, business and gets his final business done….and then dies…..
That is Living……that is Life…...

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sun Apr 08, 2012 12:12 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Reaction to Seeing Muhammad Ali
It sounds like we are all agreed (I think) that Ali should not have been paraded in public in his present state unless that is what he wanted. And I don't know how we could know what he wanted for sure.

Let us hope that Ali has a Pat in his life, who steadfastly acts on his behalf. Let us hope that for us all.

Pat is definitely a role model for me, as are many members of this forum.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Apr 08, 2012 12:52 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Reaction to Seeing Muhammad Ali
Jeanne,

Good point that one cannot specify in advance one's wishes for every possible future situation. (That said, I did have a client who specified in his POA that no one was to see him in failing health unless his agent approved. Well, I wonder how a hospital, or his agent, would have handled that. But at least he announced his wishes.) I hope that Ali's family truly knows his.

Besides just writing documents, it's really important to have "the talk" with one's agents and family so one's wishes are actually known. It's not fun and often uncomfortable, but much better than leaving one's agents in the dark and uncertain about all those situations that might arise.

Happy Easter, Happy Passover, Happy Spring to all!

Julianne


Sun Apr 08, 2012 1:11 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Reaction to Seeing Muhammad Ali
Jeanne,
While I suppose I'm in agreement with your summary, that aspect of the Ali story has no interest for me. I'm interested in many people being appalled about an "incoherent," "incapacitated" "geriatric" being seen in public, and how our society only wants to see the beautiful people on display.
Robin


Sun Apr 08, 2012 9:15 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Reaction to Seeing Muhammad Ali
Julianne, I suspect that when the caregiver is your spouse, especially in a long-term marriage, it is easier to assume that he or she will know your wishes. If you've lived together long enough to finish each other's sentences and to communicate with a lift of the eyebrow and a shrug of the shoulder, often without needing words, it is likely you'll each have a pretty solid idea of how the other would react to a given challenge, opportuity, or option.

I'm guessing that a daughter or son would have less intimate knowledge, but still a strong basis for educated guesses about what the parent would want. I had a pretty good idea of my dad's basic attitudes, but certainly not as well as I know Coy's. And my mother is kind of a mystery. I could make a pretty good guess about some things, I think, but maybe my sibs would see it differently.

A less close relationship would probably need even more written guidance.

So getting at least the basics in writing is a real good idea! And if you are a public figure, there are probably different things to be covered than for us out of the public eye.

Keep up your good work, Julianne!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Apr 08, 2012 9:30 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Reaction to Seeing Muhammad Ali
I am appalled with you, Robin, but not terribly surprised.

Maybe the more exposure we have to reality, even when it isn't beautiful, perhaps the less squeamish we will become (as a society). At least we can hope for that.

(None of us on this site are lacking in exposure to that particular kind of reality!)

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Apr 08, 2012 9:37 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Reaction to Seeing Muhammad Ali
Whatever happened to dignity? My husband was a dignified British gentleman who would have been truly appalled had he known he would be pooping in his pants, drooling and picking his nose in public. None of that bothers me--I am a registered nurse, after all! But I am his advocate, not just for his physical well-being but for his dignity.

Again, my concern about Muhammed Ali lies in the motives of those who arranged the exhibition and in whether or not he was a fully cognizant participant.

And, Robin, don't worry about people not being exposed to the ravages of such diseases. I know of no family today that has not been touched by dementia and many are dealing with Parkinson's.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Apr 09, 2012 12:11 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Reaction to Seeing Muhammad Ali
Actually, Jeanne, you might be surprised at the number of close family relations acting as agents who aren't sure what their family members wanted, even spouses and children, and they struggled with what to do. (I usually hear about it either when the agents have lost their copies of the POAs and come to me for replacements or when I am helping with probate matters later.)

That's why I stress so much to clients that having the written POAs is great but they really need to be accompanied by the conversation about what the principals (those writing the POAs) want. It seems to me that this is just an area that makes people uncomfortable because it is attached to the thought of final illness and death, and our culture seems to be squeamish about those things. Hence all the euphemisms for death: passed away, gone, etc. I have learned not to use the words "death" and "dead" with estate planning clients unless they use it first, even though that is what we are talking about.

Julianne


Mon Apr 09, 2012 8:58 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Reaction to Seeing Muhammad Ali
The preservation of respect and dignity for my dad was a big thing for me. Once in a while there would be a CG at the ALF who was just there for the paycheck, and the disrespectful attitudes were obvious by the way they talked to or in front of my father. For those of you whose LO is still alive, if/when this happens, going to the administration and calmly explaining what happened and how you expect your LO to be respected is really important. The few times we had to do this, the CGs attitude and behavior was much changed for the better. I could not stand to see some 20-something come in a be disresepctful to my dad. Luckily, his ALF was very concerned about maintaing the dignity of all the residents, for which I was very grateful. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Apr 09, 2012 9:13 am
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: Reaction to Seeing Muhammad Ali
I'm having a little trouble with pasting the Ali quote Robin supplied earlier, but I think there is a good point in it. Most of our LOs are, and have been, private people. And that is probably is as it should be. I wouldn't dream of trotting Mom out on an athletic field. She had enough trouble with just visits from friends.

BUT...let us not forget that the man who could "float like a butterfly, sting like a bee" was never a particularly private man, loved the attention of the crowd and was very vocal about his PD and having it seen by his fans. By letting the world see his PD, he has probably done more for athletic safety than any other person, both in and out of the ring. I suspect that his willingness to share this journey with the world may have been an impetus for studies of the dangers of football.

Has anyone considered that this might have been Ali's idea? Or his family's, being well aware of what he would want? Is it possible that, knowing this may be the last time he could appear in public, it was important to Ali and to his family that he have this opportunity? I'm not a big fan of boxing, but Ali's journey through PD has more than earned him my respect and I do believe that he would have wanted this.

I could suggest that the crowd could have better prepared. This could have been their last opportunity to give Ali something that has always been important to him - the cheers of the crowd. That isn't shallow. It is how he has always known he is respected and even loved. With preparation, the crowd might have been able to give him the cheers he really needed.

Remember Kathryn Hepburn? I drove once from Fargo to Minneapolis in a severe blizzard because I had tickets to see her in a play. She was in a wheelchair with her ankle taped up and she was shaking from her essential tremor, but she went on. And she never let it stop the play, just as she never let her tremor stop her life.

This is what it means to be a performer. The performance, even if it is just being wheeled onto an athletic field for a few minutes, is everything and the applause and cheers are the very breath of a performer. Whether Hepburn or Ali, hiding isn't something they have (had) in them. The audience is family and the cheers are hugs. If the crowd had known what to expect, been able to cheer, I suspect that Ali would have soaked it in like sunshine.

That said, every performer knows what it means when it is so silent that you could hear a pin drop. It is the most gratifying reaction a performer can get - when you have taken the crowd somewhere they never expected to be. Somewhere that it takes them a few minutes to come back from. If Ali silenced the crowd, he can be just as proud of that as he could be of a shouting, cheering crowd. He received the ultimate accolade.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Apr 09, 2012 5:37 pm
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Joined: Tue Mar 29, 2011 3:02 pm
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Location: East TN
Post Re: Reaction to Seeing Muhammad Ali
I have to remind myself this a caregivers forum….
a caregivers space….
therefore caregivers perspective….

BS….

From what I have seen and read…most of those with issues like this….and especially Ali…
was 180 degrees from a private person……

I worked in high profile positions…..
think I want to hide in a closet?

let me tell you something….no actually let me tell you more than you possibly want to hear or can stomach….

you see something horrible….you have legitimate thoughts for 'you'…..

now let me put a different perspective for you…..

I hadn't seen my local internist since I was diagnosed a year ago…..
needless to say….I have progressed or declined…..based on your view of the glass and its contents….

He doesn't know how to handle my presence when multiple functions controlled by my brain….don't work as a 'normal's' would….

How in the world can we expect a stadium of cheering fans for the 'worlds greatest' to?

But…..that is not the problem……
that we have any problem at all….is the problem……

we have regressed….
we have cleaned up our image in our little minds to not include….the ugly things…..

think back a few hundred years…..what would Ali have been doing? if still alive?
probably begging on a corner in full view of everyone…..kids, babies, toddlers….old folks….family….clergy…..everyone….
and no one would have thought anything wrong with it….
not the begging……(people had to eat)….
and not the disease…..
because back then…..

EVERYONE KNEW THEY COULD GET SICK……EVERYONE….
old people, young people, kids, toddlers, babies….sick people….

We need this kind of thing….
I make this kind of thing happen every day…..
Every stinkin day……
Sometimes….not even on purpose….

Awareness….

it's not just for sick people, anymore…...

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Mon Apr 09, 2012 10:42 pm
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: Reaction to Seeing Muhammad Ali
Thank you, Craig. That's very well said.

Remember those commercials, I think by the March of Dimes, where they had kids with physical disabilities saying something like "see my disability, then see ME?" Or, its okay to ask?

As a child, I was taught to avert my eyes so as not to embarrass a person with a disability. That was, until my cousin who is a former March of Dimes poster child changed everybody's way of thinking. She makes people see her, talk to her, ask questions and don't you dare feel sorry for her.

Thank God there are people who are willing to share their journey. It gives the rest of us courage to face our own future and a desire to keep fighting.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Apr 09, 2012 11:13 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Reaction to Seeing Muhammad Ali
Kate, I really like your comparison to Kathryn Hepburn. I suspect (though certainly can't know) that appearing in front of a crowd is consistent with Ali's long-term personality and expectations. And I agree that it wasn't handled well for his sake or the benefit it could have provided a better-prepared crowd.

A few years ago I read What's My Name, Fool? Sports and Resistance in the United States by Dave Zirin. The title refers to Cassius Clay/Muhammad Ali, of course, and the book explores his resistance activity and his activism along with that of many other athletes.

Entertainers are not like you and me. :lol: I wouldn't judge what is good for Ali by what I would want for me. And entertainers who have also been activistis all their lives probably crave the limelight until the end. Thank you for that perspective, Kate.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Tue Apr 10, 2012 1:49 am
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