Well here is the letter I sent to Ellen. Please let me know what you think of it. I could have written pages & pages, but as it is I had to send it in 2 segments because it would only accept 1500 characters per e-mail. I hope her staff puts it together. Here's hoping she responds.
Hi Ellen, This letter comes in 2 parts. I am writing this as I watch you on TV. I want to thank you for all the wonderful things you did to promote the breast cancer awareness month. Breast cancer is a deadly disease & it would be wonderful to see a cure in my lifetime. I am writing though to tell you of another disease. It’s Alzheimer’s & November is Alzheimer’s Disease Awareness Month. Breast cancer is curable in some cases; Alzheimer’s is fatal in ALL cases. There are 261,000 new cases of breast cancer every year; there are 454,000 new cases of Alzheimer’s per year. Also, Alzheimer’s doesn’t discriminate; both men & women are affected. (I know that men can get breast cancer, but it is mostly a women’s disease). Ellen, I’m not saying that one is more important than the other, I am saying that there has to be more attention given to the fact that Alzheimer disease is increasing every year & it will continue to increase as the “baby boomers” come of age. There is a mistaken idea of the general public that Alzheimer’s is a disease of the elderly, but it’s quite the contrary. You would be surprised at how many Alzheimer victims are in there 50’s. 60’s & some as young as 40. On my support website there are many loved ones in the late 50 early 60 age group.(part 2 in next e-mail) (Part 2)Another mistaken idea is that the medications will help cure the disease. Not true, they only help some victims stay cognitively better for longer, but when the medicine stops helping they quickly catch up to where they would have been. Another problem is the medical community. The doctors can’t seem to agree on diagnosis, treatment, medications; I could go on & on. So why am I writing you? Well by now you can guess that someone I love has Alzheimer’s, it’s my husband & he is 63 years old. He was diagnosed with early dementia 4 years ago & exhibited symptoms 2 years before. So he was in his mid 50’s when the symptoms began. Ellen, any support for our cause of more awareness of this horrendous disease would be greatly appreciated. One thing I forgot to mention is that not only does this disease ALWAYS claim it’s victim it also claims a big part of the caregiver who is usually the person’s spouse. Thank you Ellen for listening to me. Again thanks for all you do for all the people you help. You are a hero to many. Your fan, Elaine Hurley
Very good letter Elaine. i hope its noticed. btw- i dont know if joan has a running count of how many members on this forum but i bet you anything EVERY ONE of us would cyber sign that letter to Ellen! now that would get someones attention. say 1000 cyber signatures or so???? thanks i hope it works. its scary statistics for sure. divvi
Thanks Everyone! Not sure what to do for a follow up. Charlotte, I LOVE your comment about crashing their system! If you decide to send your own e-mail you can do it through her TV website.
Elaine, thank you for the excellent letter to Ellen--and I would gladly sign it too! But if you think an e-mail from each of us would be more effective, I'm sure it can be arranged!
Elaine, after reading your excellent letter I thought, why not make some minor modifications in it and send it as a letter to the editors of newspapers such as the Washington Post, the New York Times, and maybe the Wall Street Journal? If you think more signatures would help, let us know and we will all "sign on".
Excellent letter. Great idea Marsh about sending it to the major newspapers. I would strongly suggest you name the "support website" you mentioned as www.thealzheimerspouse.com. The reason - relatively speaking, only a small number of people are aware of what caregivers and AD patients go through while on this miserable journey. The stories we have all told on this site are directly from the source and the heart. No amount of explaining can compare with the emotions written in my blogs and your messages. Quoting statistics about who and how many people will get Alzheimer's Disease is fine, but I cannot think of a better way to raise awareness of the true nature and devastation of this disease than for people in important places to read our stories.
I can tell you from my experiences in Washington DC that people listen politely, but eyes glaze over at dry facts. I saw honest emotion from legislators and aides when we relayed our personal stories.
Over the summer, my message board monitor and I had been planning on writing to the media - tv, magazines, newspapers - about this site and the stories we all tell, but you know how crazy my summer was, so we did not get to it. It never occurred to me to ask all of you to do it. So go for it!
Joan, I almost put the website address in the letter, but I didn't know how you would feel about it. Sure wish I would have asked you first. If by some miracle I get contactd by Ellen's "people" I will definitely get the website address out there. marsh, that is a great idea & if you want you can modify it anyway you want & send it off. If you want to add my name to yours when you submit it that's fine.....maybe adding all of our names or the ones who say it's ok would really make an impact. But go ahead & make any adjustments & send where ever you think it will help.
Here is my modification of Elaine's letter, to be sent to major newspapers. If you would like your name added to the letter please send it to me by e-mail. My e-mail address is in my profile. Also include the age of your spouse who has the disease.
We have just come to the end of Breast Cancer Awareness Month. Breast cancer is a deadly disease and it would be wonderful to see a cure in our lifetime. We are writing, though, to tell you of another disease. It’s Alzheimer’s Disease (a form of dementia). Dementia is distinguished by at least one cognitive dysfunction – language, sensory function, motor skills, or abstract thinking – and a loss of memory. The changes are so severe they interfere with normal life. Dementia is the seventh leading cause of death. November is Alzheimer’s Disease Awareness Month. Breast cancer is curable in many cases; Alzheimer’s (and other dementia) is fatal in ALL cases. There are 261,000 new cases of breast cancer every year; there are 454,000 new cases of Alzheimer’s per year. Also, Alzheimer’s doesn’t discriminate; both men & women are affected. (We know that men can get breast cancer, but it is mostly a women’s disease). We are not saying that one is more important than the other, We are saying that there has to be more attention given to the fact that Alzheimer disease is increasing every year and it will continue to increase as the “Baby Boomers” come of age. There is a mistaken idea of the general public that Alzheimer’s is a disease of the elderly. Although the majority of patients with dementia are over age 65, there are many patients in their 40’s or 50’s. On our support website (TheAlzheimerSpouse.com) there are many loved ones with “Early Onset Alzheimer’s Disease”.
Another mistaken idea is that the medications will help cure the disease. Not true, they only help some victims stay cognitively better for a little longer, but when the medicine stops helping they quickly catch up to where they would have been. There is NO really effective treatment and NO prevention. Dementia is 100% fatal. The cost of caring for these patients amounts to $172 Billion per year, with estimates that it will exceed $1 Trillion when the “Baby Boomers” start developing the disease. In addition, unpaid caregivers provide care valued at $144 Billion per year. Most of this cost is not covered by any insurance, so the caregiver spouse runs the very real risk of being destitute at the end of the patient’s life, including losing their home. While these statistics may be boring, the stories told by the caregivers of their daily life are truly frightening. They have to contend with anger, rage, physical abuse, incontinence (both urine and stool), loss of their companion – all due to the effects of dementia. The strain on the caregiver-spouse is often so great that the caregiver dies before the patient. One worker in the field has said that the caregiver is going through “grief on the installment plan” as their loved one loses more and more of what makes us human. Although the “usual” duration of dementia from diagnosis to death is 8 years, the range is from 2 to 20+ years. The longer the duration, the greater the cost and greater the strain on the caregiver. We are writing this letter to ask people to contact their representatives and senators and ask for more funding for research into the cause, prevention, and treatment of dementia, and for some type of help for the caregivers. We, the undersigned, are all spousal caregivers of patients with dementia. In parentheses after our names is the age of our loved one who has the disease. Elaine Hurley Marshall Smith (80)
I will email on Ellen's website as well. Marsh and others ... I sincerely hope your letters to the editor will find someone willing to publish. I've tried the Times, Post, WSJournal and USA Today with similar type letters to the editor over the past few months ... but to no success. Again, it's that 'critical mass' that's missing, I think ... but hopefully someone from this site will have better luck than I have had. Now I'm going to Ellen's website!!
Letter has been sent to the Washington Post. If anyone gets that paper, please check to see if the letter is printed and let me know. They do not acknowledge letters they don't print. Also, they require that the letter be exclusive to the Washington Post, so I will have to change it somewhat to send it to other papers.
marsh, I get the Post & hopefully I will remember to check the letter to the editors before my DH rips the paper up. I wonder why they have that rule about being exclusive ( would they even know if you sent it to another paper?)
And........if it is okay with Marsh to reprint his letter, please email me with your name and age so that I can include as many caregivers as possible!
Ann, yes, please send the letter to any paper you can.
Pat, I looked into NYTimes. Their information said the letter had to be related to an article within the past week. If you can get it to them, please do so.
For anyone else - Send the letter to any paper you can. I will e-mail the names and ages of spouses I have received to anyone who needs it. Since it includes full name, it shouldn't be posted here. Home town might also be helpful. Also, remember the original letter was written by ElaineH to Ellen DeGeneres. I modified it for newspapers.
I am trying to keep things organized and not duplicate topics, so I am posting information about my latest blog here. Please log onto the home page - www.thealzheimerspouse.com - and read today's blog about raising awareness. Please post all ideas and information about letter writing here.
Elane H, You've said it so well. Any life threatning disease is upsetting, but dementia carries a special burden, as we all know if we've been involved with it! The Alzhemer's organization has made many attempts to alert the public to the wide spread of this disease and its probable burden on the medical facilities and costs in the future. Sadly, the word is slow to spread. Cancer publicity has had a running start, and the "snowball effect" has allowed cancer organizations to collect more contributions, and with that create more publicity! Sadly, Alzheimer's disease is getting more attention as time goes on, but money is needed now to further research and publicity. Having Ellen or someone of her stature would be a boon to the cause! Glad you have bought it to her attention, and I hope she will respond.
earlyjazz---Welcome. You're new. Joan will soon give the official welcome and tell you about the many resources avilable here.
You should know that if you have a question or concern you can bring it here and we'll try to help. If you're frustrated, tired and heart sore, come here to vent. Venting is good. There is no problem or issue we haven't or are unwilling to address, and there is no judgement. We've helped some of the men with questions regarding makeup, hair care, and fashion, for their wives. We've discussed the effects of the Dementias on our marital relation ships. We're all in leaky boats, but by tying them all together we are keeping them afloat and will get throught this. Tell us your story and how we can help.
earlyjazz, Welcome to our little corner of the internet. As carosi said we are here to listen & help if you ever want it. Please feel free to vent. We understand because we have either been there done that, or know that we will soon be there. Tell us about youself.
By the way, I haven't heard from Ellen yet. Doesn't surprise me. After I thought about it she probably only sees the letters her aids choose to show her. I can just assume that the person who actually read the lettter doesn't have any LOs with ALZ. Too bad.
trish your friend karen is an amazing lady. sending prayers to her and her family. i see Ellen did participate in the event. so maybe the work paid off. divvi
I was extremely impressed with the PURPOSE of the Alzheimer's Federation - - "the Foundation focuses on the CARE for individuals and their caregivers. While research is imperative, organizations such as the Alzheimer's Association raises money for that. As Hector Elizondo so eloquently said, "while there's currently no CURE for this disease, we have to do all we can to help CARE for those with the disease". That was the main objective for this event. They touch on: young onset, day programs, the explanation of the disease, their "Quilt to Remember", and even how to get young children to understand the disease."
My mindset has been leaning in the direction of CARE for a long time. Yes, we need research dollars, but the patients and caregivers need help NOW.