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People Magazine
younghope1
Posted: Friday, February 1, 2013 9:03 PM
Joined: 12/5/2011
Posts: 127


Dear Friends, here is the story from People Magazine.


http://www.people.com/people/article...669645,00.html
__________________

I was a little disappointed, okay alot disappointed about the article. It almost didn't get printed as i actually told them if they couldn't tell the truth to just forget the whole thing. It is embellsihed a little in some areas, but for the most part they did tell the truth. 

I hoped they would have shared the more positive side of the disease and shown my proactiveness of the disease, but they didn't. They spent a whole day at Memory Walk with us and that wasn't even mentioned 
I talked to the CEO of my local Chapter today and she understood my disappointment but did point out she felt they were showing the view of a young caregiver and they did do that well. So, as long as it raises awareness overall to early onset dementia, then I guess it has met its goal. 
On the last page in the caption it does mention FTD as my diagnosis. 
I would encourage any of you that want to share your oponions with the editor to please do so and write into MAILBAG, that is where you can share your thoughts with the editor.

Tracy

Iris L.
Posted: Friday, February 1, 2013 11:05 PM
Joined: 12/15/2011
Posts: 18502


I liked the brief article, Tracy.  I'm going to pick up a People tomorrow so I can read the full article.  I'll write to the editor after I read the entire article.

Iris L.

dayn2nite
Posted: Saturday, February 2, 2013 2:11 AM
Joined: 12/18/2011
Posts: 3097


Just from the title I see their focus is on Austin, so is that what you are disappointed about?  That they are portraying what his life has become?

Tracy, what "positive" side of the disease were they supposed to show?  I don't know of anything positive they could have written.


Iris L.
Posted: Saturday, February 2, 2013 3:18 AM
Joined: 12/15/2011
Posts: 18502


I don't know what Tracy was thinking of, but perhaps she meant the positive aspects of her strength and inner fortitude in living with dementia.

Iris L.

younghope1
Posted: Saturday, February 2, 2013 7:49 AM
Joined: 12/5/2011
Posts: 127


Well, you see daytonite, the story really didn't display how a person with early onset and middle stage dementia can and is still a viable part of society. I still clean my apartment and I do work at home (yes I have to work at a snails pace and make mistake, but I I can still do it) I can still do shopping, sometimes I may need some help. They left out anytihng that I have done in regards to proactiveness towards to dementia and only briefly mentioned a camp. I hope those that have teens that can use a program as the camp think to contact the Alzheimer's Assocation for information, they were not clear about that in the story. 

More disheartening, I went on People Magazines site and there are over 129 comments, most are saying things like, "that poor boy, where is the rest of his family in helping them", where is family services, whjy is he having to take care of his mother", and more! Feel free to go there and read them and make your owqn comments. I tried to send in comments and they rejected mine. Why? They want to show the pity of the story and not give the whole truth. Now I know why I never buy People Mag. the paparazzi is so hurtful and don't care how they go about making their bucks.

I am still a person with feelings, I still have a thought process and still have a lot to offer. That is what people need to hear and see as well.

Tracy


dayn2nite
Posted: Saturday, February 2, 2013 8:12 AM
Joined: 12/18/2011
Posts: 3097


younghope1 wrote:

Well, you see daytonite, the story really didn't display how a person with early onset and middle stage dementia can and is still a viable part of society. I still clean my apartment and I do work at home (yes I have to work at a snails pace and make mistake, but I I can still do it) I can still do shopping, sometimes I may need some help. They left out anytihng that I have done in regards to proactiveness towards to dementia and only briefly mentioned a camp. I hope those that have teens that can use a program as the camp think to contact the Alzheimer's Assocation for information, they were not clear about that in the story. 

More disheartening, I went on People Magazines site and there are over 129 comments, most are saying things like, "that poor boy, where is the rest of his family in helping them", where is family services, whjy is he having to take care of his mother", and more! Feel free to go there and read them and make your owqn comments. I tried to send in comments and they rejected mine. Why? They want to show the pity of the story and not give the whole truth. Now I know why I never buy People Mag. the paparazzi is so hurtful and don't care how they go about making their bucks.  

I am still a person with feelings, I still have a thought process and still have a lot to offer. That is what people need to hear and see as well.

Tracy

 

Tracy, the article is about what's going on now.  Not what went before, like camp.

 

I agree with the comments.  I'm not going to contribute to them, though.

 

I think some of the upset you're having involves the fact they mentioned you have wandered, fell into a ravine and had to be taken home by the sheriff. 

 

They did mention you take care of your apartment and work.  The article is not about "pity" - it's about a high school kid who is responsible for too much.

 

 


younghope1
Posted: Saturday, February 2, 2013 8:32 AM
Joined: 12/5/2011
Posts: 127


The only thing he is responsible for is taking care of his room keeping it clean and helping with my home business to the post office. I do EVERTHING else, including making sure he eats and does well in school as well as has his needs met with clothing, etc. The magazine embellished way too much and that is why I am upset. Yes, they show how hard it is on teens as caregivers, but they left out how parents are still capable of their role in MOST ways. They left out that I am his ride too school, not someone else. He helps me set my meds up as I get them mixed up. They left out I am his advocate for him at school. They left out I make sure he goes to church. They left out I am helping him to plan for his future and much more!

Tracy


younghope1
Posted: Saturday, February 2, 2013 8:34 AM
Joined: 12/5/2011
Posts: 127


Furthermore, why did they block my comment defending my honor??? Because they dont want people to know because you have dementia, you are capable of still living. How sad!
Mimi S.
Posted: Saturday, February 2, 2013 8:52 AM
Joined: 11/29/2011
Posts: 7027


Tracey, I'm writing as a person who has also been interviewed and seen the results. When one agrees to be part of a story one loses control of what is written.

There was one time when I was interviewed by a local paper when the interviewer asked if I would read what she wrote before it was written. She felt the topic was so important she didn't want to get anything wrong. It was, probably, the only time I had no arguments.


If the reporter gets facts wrong, they will apologize, but how they chose to interpret the facts and what parts they chose to print are up to them.

There was another time the print media came. The photographer was a bird watcher as I am. The article was mostly about the fact that I can no longer remember the names of most of the birds in my own backyard.


And then there was the one, still circulating on the net of an interview, that like yours was more than a day in length. The final shot, reminiscent of the Long Goodbye was a shot of myself with my grandchildren. I gradually disappeared. It so freaked out my children, that I doubt any of the grandchildren have ever seen it.

So dear Tracey, you did get publicity for dementia and the situation too many young children face. You know and we on the boards know how you have fought, the camp you established and how you are still fighting the good fight.


dayn2nite
Posted: Saturday, February 2, 2013 11:15 AM
Joined: 12/18/2011
Posts: 3097


younghope1 wrote:

. They left out that I am his ride too school, not someone else.Tracy


I sure hope that doesn't mean you're driving him.  I'll leave the article alone, I'm sorry you're disappointed in it.

 

 


SunnyCA
Posted: Saturday, February 2, 2013 12:22 PM
Joined: 2/14/2012
Posts: 1752


Tracy, the article is not a judgment on you ... it's a judgment on all the people who should be rallying around every caregiver for a dementia patient, to make sure that the patient and the family get the help and support they need.

And as others have pointed out ... the article isn't about you, it's about your son.

He is extraordinary.  He is remarkable.  He is the best of the best.  I am constantly dumbfounded by his love for you and how hard he tries to make sure you and he have a good life together.

You should be so very proud.
younghope1
Posted: Saturday, February 2, 2013 3:53 PM
Joined: 12/5/2011
Posts: 127


Using my middle name I was able to post a message on the People Magazine comments page. Yes, I am proud of my son for being here and helping me. His life it about to continue on as he graduates in May from high school. As I have been HIS advocate in school, I am MY OWN advocate for this disease. I do now realize the story was about Austin as a young caregiver, but people mag did what I asked them not to and lied about several things. YES, daytonite, I am still a licensed driver and YES, i do drive my son to school. I see my neurologist on Monday for my 6 month follow up. I am curious to see how that goes. Thanks to those of you that have been supportive and undserstanding of me with this situation.

Tracy


younghope1
Posted: Saturday, February 2, 2013 5:17 PM
Joined: 12/5/2011
Posts: 127


You know, we have no right to judge anyone, especially if we don't know them. When you have met one person with dementia, you have only met one person. We are affected differently by our dementias. There are factors that determine our mind sets such as age of onset, environment, medications, progression, etc. all of that plays into a persons being. Just because we have dementia doesn't mean our life is over. It simply means that we have reached a new chapter in our life and we have to learn to adapt as things go along. I'm so glad that I don't have the mind set of many caregivers here. So sad.......awareness of dementia has come a long way since I was diagnosed in 2002, but, it still has a long way to go in teaching others. The comments from people in regards to the story show just that.
Iris L.
Posted: Saturday, February 2, 2013 8:37 PM
Joined: 12/15/2011
Posts: 18502


Tracy, I read the entire article.  I think it is a strong article about caregiving a parent from the perspective of a young person who is still in high school.  It talks about his dreams for his future while he copes with his schoolwork and helps his mom.  The article states his mom did a good job in raising him.  Most of the comments were positive, about what a remarkable young man Austin is.      All in all, I think this is a good article.

Iris L.


Iris L.
Posted: Sunday, February 3, 2013 5:10 PM
Joined: 12/15/2011
Posts: 18502


Tracy, I searched back through your posts from last year when you first mentioned People magazine.  It seems that you thought People wanted to do an article about your summer camp and how it came about with you having Pick's disease.  But the article came out about Austin being a young caregiver to a parent with dementia with no other support. 

I can see now how you might feel disappointed.  You wanted to show how you were managing your life and what you had accomplished even with ftd, which 99% of the public has never heard of.  This was never meant to be an article about fronto temporal dementia--or at least, that is not how it was presented.  Perhaps it started that way, but the editor chose to focus more on the child-as-caregiver aspect.

Austin is 18 years old and I don't think that the chores he does as helping out at home would be a burden for someone his age.  Many teens do this and more.  But I can see how the worry over having a parent with dementia with no adult in the picture can put a stress on a teen.  The article makes no mention of your husband, although we on this board know of your husband's back and forth involvement over the years.  Lately you said your church members have been more supportive of you.

I wonder what was People magazine's aim for this article?  Were they thining of publicizing Austin's plight so that he could get more assistance?  Someone mentioned starting a FB page for you.  The members of your community will read this article and something will come of it.  What do you want to happen?  Be prepared, because I'm sure there will be many offers of help and involvement. 

In the past it seemed to me that you have seemed reluctant to have many outsiders involved in your care.  Now many more people know about you and Austin.  How will you deal with this publicity?  How will Austin deal with this publicity and the comments, not all of which will be supportive?

You are already upset by the comments posted on the article.  How will you handle comments from those in your community and your neighbors? 

I don't know what to advise you, because I have never been in this situation.  But I do know that you need to be prepared for what will come next.  It is hard for us who have executive functioning problems to prepare for the next step by ourselves.  You may need help.  Just be prepared.

Best wishes to you, Tracy.

Iris L.

younghope1
Posted: Sunday, February 3, 2013 8:08 PM
Joined: 12/5/2011
Posts: 127


Iris, yes they did lie, now maybe people can understand my upsetness over this issue. It was suppose to be about FTD and the camp and they completely lied about alot. As for my neighbors and church and even town, they know me, the know the truth, so they are aware that the magazine told lies and embellished the story. I have their COMPLETE support.

Tracy


Iris L.
Posted: Sunday, February 3, 2013 10:10 PM
Joined: 12/15/2011
Posts: 18502


Tracy, magazines write what they write to sell papers.  I know you're upset. 

Try to put it past you.  We all know how getting upset over anything makes us function poorly.  You don't want that.  It's over now.  Let it go.

Iris L.