During the first week of September Maria Shriver will be spotlighting stories related to AD. Reportedly they will air during segments on the Today Show and the NBC evening news. One of the stories that will be discussed is mine.
I wrote my story for her blog and it caught her attention. I was contacted by the NBC producers asking if I would possibly discuss it and I said yes. They sent a camera crew to my monthly support group meeting. My group leader and I then met Maria for an interview in Santa Monica and then they filmed me at my house, my parents house, and my work(!) Hours of film that will probably take up only minutes on the screen after editing.
During the interview and in telling my story I tried to emphasize things related to AD that are not normally highlighted, such as SPOUSE AD. Maria knows all about parent/child AD but she seemed to have never considered the unique aspects of spouse AD.
In an effort to make sure our spouse story got though, I conspired with the support group leader who arranged for two spouses from her daytime group to attend the evening session and discuss their situation. Hopefully the viewers will get the message.
During the interview, Maria kept trying to get me to talk about how much 'hope' there is in the AD world. While I said I 'hoped' as much as anybody, the reality is that AD has but one fatal ending. (she did not want to hear that) I told her that while at present the fate of our AD spouses is sealed, we (the caregivers) are the only survivors and there is hope for US to be able to rebuild our lives after our care giving days are over. (that was an angle she could go with)
Anyway, who knows how it will turn out but I did give it my best.
I dont have a specific air date yet, when I hear of one I will post it. Jim
Maria is a smart, strong, intelligent woman. I know she has detailed the suffering of her father and the caregiving and the devastation of watching such a vibrant man succumb to the depths of this illness. I believe she is trying to give voice to the families of caregivers who suffer along side their family member who is suffering and dying from this terrible disease.
Having said that, she of all people knows there is no "hope" at this stage...clinical trials have failed, very little is on the horizon for new medications to treat the disease, AD research is VERY under funded, etc. Quite frankly I am shocked but mostly disappointed that she would try to influence you to espouse there is "hope" on the horizon regarding the treatment and outcome of this disease. Did she think her father died by accident due to this illness? If anyone could have been saved it would be her father who had many more resources, money and connections available to him than most of us struggling to care for our loved ones who are victims of this dreaded disease. I expected better from her.
M-man, thanks for continuing to advocate for us still in the throes of caregiving and living with the AD/dementia monster. Our voices and the facts need to be heard and I for one am grateful you continue to spread the message. Thank you.
Jim, that's so wonderful that you could/would do this. I did expect a little more "understanding" from her than that, though! Thank you for your advocacy on behalf of us all.
She has to remember her Dad had plenty of money for help and care. Too many of us do not have money, try to survive on a shoestring budget - many less than that.
And thanks to Jim's efforts, I will be one of the "Faces of Alzheimer's" featured on the NBC websites that week. Jim personifies the idea of making something positive out of a horrific tragedy. I know he tried to focus on caregiver burden, especially related to spouses. I hope that at least a bit of that escapes the cutting room floor.
Having done interviews over the years, I have come to realize that producers decide ahead of time what they want to focus on, and regardless of what the interviewee thinks or says, the producer is going to cut and paste to get the slant he wants. I'm willing to bet that in this case, the order was to end on a positive note no matter what.
Thank you, thank you, Jim, for your advocacy in the midst of your own pain.
Thanks Jim for being our voice! Your commitment and strength during your personal tragedy is truly amazing. May the producers of this segment be moved to allow your total message be told without compromise.
Maria is of course quite savvy and is no stranger to politics. The reinforcement of 'hope' represents "disease politics" at its best. The ALZ Assoc has used the motto "A reason to hope" as part of their activities.
We all want Alzheimer's Disease to receive; attention, awareness, research and funding. In order to attract this attention you need to give people something. That something is HOPE.
Nobody wants to assist somebody who has a hopeless disease. . . . Nobody want to donate funds to a cause that is hopeless. . . . No scientist want to do research for a disease that is hopeless . . . .
The problem is to BALANCE what we all know is the hopelessness of quack cures and the hopelessness of trying to change the inevitable conclusion of the disease process, against keeping people interested in the process.
You can see this balance in action in the movie Titanic. Everybody knew how the story was going to end, (the boat sinks) but everybody watched the entire movie because the focus was actually on a sub-story (young lovers). I tried to make the 'caregivers story' the sub-story in the Alzheimer's tale.
We all know that AD is unlike any other disease. When AD comes into a family, marriage or relationship, it always affects TWO people. You cant catch cancer from you spouse. If your mother has heart disease that does not automatically mean that you are going to develop symptoms BUT in the dementia world we all know that the caregivers DO show specific symptoms from stress and it is the caregivers who suffer. Commonly the caregivers suffer MORE than the person with AD.
One statement I made was that 'if your parents are dealing with your father's AD you might think that everything is fine and your mother has it all in hand. I told the cameras that NO(!) mom is not OK! Yeah, dad has problems but mom needs special help and attention because while you are losing your father, she is losing her mate/lover & marriage.' HOPEFULLY some child somewhere will hear this and give more help and support to their NORMAL parent . . .
In language people are not 'suffering' with AD. It also just doesn't seem correct to say someone is a 'victim' of AD. Their loss of awareness and memory means that they are generally not 'enduring' AD symptoms. BUT the caregivers are! Caregivers are suffering, and they are a victim, and they are enduring the loss of their AD person (spouse or parent)
THIS is the political viewpoint that can be played up to outsiders. Hope for a 'cure' from the stresses of care giving is something that we all need right now. One of those 'cures' (that we all need) is help with the burden of care giving.
AD will result in death. Unrelenting 24/7 care giving also results in death. (it sure did in my family)
The need for day care & residential care as a mechanism to save the caregiver is something totally unknown outside the AD world. Help for care givers is a cause that politicians can get behind. Help for care givers is a cause that (with education) the general public might be able to understand. Hence the reason for my disease political talking points.
Jim, This is so articulate, succinct, and profound. We can only hope that Maria realized what a gem of wisdom and experience she had in the interview with you. I wish I could send out your last post to everyone I know. Thank you for becoming a spokesperson for the caregivers and what the ravages of these diseases do to them.
My heart just breaks for all that you have been through. I believe God can and has turned this into something that can and will help many, many people for many years to come.
Thanks for your continued love and concern for those of us and our loved ones still going through this very hard, traumatic journey
For a long time I've been saying that dementia, of all kinds, do have survivors. The survivors are the caregivers. Maybe. If they survive. Because as Jim well knows, not all of them do survive.
Jim, all I can say is excellent - just excellent!!!
I think that in the "political" environment of today, the powers - that - be want to sound positive so as not to hurt anybody's feelings, or offend someone, so the truth of hopelessness (in this area, at least) is not going be part of their dialogue. The "fatal disease" part is going to be glossed over. I talked to a wonderful young man yesterday who is watching his father go through this disease - he was surprised to know that this is considered a fatal disease! No one ever told him that.
Jim, thank you so much........... I am so impressed with you and all that you said and are trying to get out to the public. I am at the beginning of this ugly disease and do not look forward to what's ahead of me........ or any of us. blessings to you and all!
Dear Jim, As of now, there are AD stories on Tuesday - Friday on the (NBC) Today show, and Tuesday on NBC Nightly News with Brian Williams.
Your story is scheduled for next Thursday morning, but all of that could change if news escalates, such as an action in Syria. Also, there will be a considerable online presence.
Jim, and Joan ... as others have already said, hopefully your stories will enlighten the general public about issues that we all know so well but are generally invisible to the American public. I just hope that whatever interview footage makes it to the TV screen represents what YOU wanted to get across and not the reporters' or their network's own personal agendas. Keep on advocating for all of us!!
Hello to everyone that has helped support this exciting effort at NBC News!
The official title of the series is “The Age of Alzheimer’s” and it will encompass all of your interviews, personal stories, articles, photos, and more. The website has now launched at http://www.nbcnews.com/health/topic/the-age-of-alzheimers.
This is the main hub for all of “The Age of Alzheimer’s” coverage and where you will eventually find all of the broadcast stories that will air next week. We will continuously update the site throughout the weekend and into next week, and there is still additional content we’ve yet to post. I will also send an official press release detailing the series overview in the next couple of days. (For those who have asked me for a series logo graphic, I hope to have it to you shortly).
We’re also encouraging everyone to spread the word via Twitter with hashtag #AgeofAlz. Be sure to check out all of the conversations we’re having on Facebook and social media HERE. And don’t forget to RSVP to our Google+ chat Tuesday 9/3 morning at 10:30amEST.
Thank you for helping us create such an important series. Let’s go get the word out! Best, Cydney
Just googled this, saw Jim's story......others are there too, but didn't take time to read. Hoping more exposure will do some good, although probably not in my & D's. lifetime :(
We have been watching MASH reruns and on a whim I looked up Harry Morgan (colonel Potter) on Wikipedia. Following all the loving stories about him from all the cast members, I came across this:
In July 1997, Morgan was charged with abusing his wife a year earlier, after a beating left her with injuries to her eye, foot, and arm.[16] Prosecutors dropped the charges after the 82-year-old actor completed a six-month domestic violence counseling program.
He lived until 2011. I then googled dementia and sure enough, there are comments to be found about him and it. But there is nothing in Wikipedia. You would think his family might want to update that entry so people know he was "not in his right mind" when he was charged.
I'm putting this here since some might be reading this listserv who generally don't, because of the NBC coverage.
Anyone can add to what is in Wikipedia or at least that is my understanding. At the top left I think it has a place to add to. All information on Wikipedia has been added by either the person themselves, their family or someone interested in it.
Charlotte, I think that used to be the case but now it's more carefully monitored to be sure that the person posting knows what they are talking about, far more than I would in this instance.