Aloha dear friends. I am submitting some verbage from the Alzheimers Association website, written earlier this year. This act has now passed, it was one of the ones we were petitioning for when I went to DC in April. A very important milestone! It is cause for more hope for funding, research, and accountability.
Also, I cannot write much more I am sorry I am just too sad right now, with this season. However I felt it important to inform you of this. Please know I follow your writings, and, if I felt my input was really needed, I would write. Perhaps in the New Year I will feel a bit better.
Anyway...-
Please ensure accountability in the National Alzheimer's Plan by supporting the Alzheimer's Accountability Act (S.2192/H.R. 4351).
In 2050, up to 16 million Americans will have Alzheimer's disease, creating an enormous strain on the health care system, families, and the federal budget. Recognizing this growing crisis, Congress unanimously passed and President Obama signed into law the National Alzheimer's Project Act (NAPA), calling for the creation of a National Alzheimer's Plan. In May 2012, the first-ever National Plan was released, with a goal of preventing and effectively treating Alzheimer's disease by 2025. To reach that goal, the NIH has established research milestones and timelines. But what the NIH has not established is the level of funding necessary to reach them. The Alzheimer's Accountability Act (S. 2192/H.R. 4351) would require the scientists at the NIH to submit an annual Alzheimer's research budget proposal directly to Congress, specifying the resources needed. That way, Congress will know what the scientists need.
Then congress needs to provide the funds which it is not. They just funded 5.6 billion for ebola but can't even do a billion for Alzheimer's which is more important in my opinion.
I am glad they passed it but passing things means little if they won't fund it.
Hello Coco----thank you for posting about this important step. It does make me feel better about our trip to DC ---- so I have just signed up for next year's forum.
Everyone----the importance as we understand it of the Alzheimer's Accountability Act is that NIH will now send Alzheimer's/dementia research funding requests directly to Congress rather than via the executive branch, where it would "compete" with other diseases before getting in the proposed budget. That has only been done with a few other diseases--- cancer being one since the 70s. (That change was made in the 70s after people like Betty Ford raised awareness of breast cancer---Before then the media were actually not allowed to say the words breast cancer on TV.
So, we need to look at how far cancer research has come since the 70s---when most cancers were a death sentence----but they are not anymore. That is the goal----to increase Alz/dementia research funding at those same levels. It is a long-range goal---my husband is in a nursing home so won't help him, but hopefully the next generation.
Charlotte you hit the nail on the head. Our government send millions to other countries and it ends up in the hands of war lords who turn their guns on us. We have seniors caring for partners with dementia and living day to day on very little funding. We also need to have autopsy results that say a person died of dementia related disease so there will be a statistic of dementia deaths. Right now it will say pneumonia or some other disease so the death rate by dementia is very low. Research will help those coming after our partners but we can at least help them. It's to late for most of us. I haven't run into any forums here.
Saying many prayers that they start some really serious research. If the projections are correct that 16 million people will have Alzheimer's by 2050, we will have a national crisis on our hands in this country. If the stats are correct than over 65% of caregivers die before the AD patient, that translates to 32 million people wiped out. Maybe that is why the current administration is not worried about solving the problems with Social Security and Medicare running out of money? Wiping out 32 million seniors will certainly lessen the burden on those programs.
Feeling less positive about surviving after the meeting with his doctors. They say they can't do anything about placing him if he doesn't consent. They say there is nothing they can do to keep him from driving. Since I'm down to 99lbs. they suggest I get some counseling to help me cope. I won't embarrass myself or offend anyone with my reply to the medical morons.
You, Charlotte, Jazzy, texasmom and InJail clearly know more about this issue than I. Flipping through one of those give away magazines a few days ago I came across something like this: both Medicare and Medicaid provide subsidies to family members who care for someone at home. Specifically exempted; it was even in caps- BUT NOT THE SPOUSE.
I read this at a doctor's office (of course) so can't verify the information or say that my recollection is correct. But, I can say that it made me as angry as _____. Relating strongly to InJail's statement about the caregivers dying before the AD spouse....Sure, let the caregivers die or develop chronic illnesses themselves.
Good grief, InJail, where do you live? Find another doctor, is there a Memory Clinic near you? Few patients 'consent' to placement. Most states are anxious to get AD drivers off the road, a doctor's report to the Dept of Motor Vehicles should do it. And you're right, Soc Sec & Medicare are in deep trouble.
FYI - As of 2006, the stats were: 43% of AD caregivers fall into a clinical depression that often lasts for years after the LO dies. An AD spouse CG has 3 times the depression of others in their age group. 15% of AD caregivers die before their LO. In 2001 the Alz Assn reported over 62% of respondents to the question, "Do you think your physician is knowledgeable about AD?" replied NO. Elderly caregivers with a chronic illness themselves have a 63% higher mortality rate than their non-CG-ing peers.
And so it goes - Some of these stats may have improved since 2006, but not by much. Not only do we have to compete with other valid medical conditions, but somehow AD is not as 'sexy' as AIDS, not as frightening as cancer--we all know that it's far worse, but getting the public's understanding it tough, everyone thinks, 'it can't happen to me.'
I remember in the 40's when you could not even say cancer, you whispered, 'the Big C.' I remember going to a lecture in the 60's by a man who told women about breast cancer and he was vilified for his efforts. It takes time.
thanks texasmom for explaining the act perfectly. No we certainly did not get enough funding for the research this year, but hopefully this act will change all that. It is a step in the right direction.
I too have signed up for DC again this March, though I am not 100% sure yet. I feel like I should go, as I am more prepared this time, and carry such a stronger message now that I had to lose Dado. Hopefully see you there texasmom.
“The Alzheimer’s Association and its advocates worked tirelessly to secure the inclusion of the Alzheimer’s Accountability Act in the Fiscal Year 2015 Omnibus Appropriations Bill that was signed into law last month. At the request of Congress, the Alzheimer’s Accountability Act establishes a mechanism for connecting scientists directly with Congress to help them determine appropriate funding levels to be provided to succeed at the U.S. government’s National Plan to Address Alzheimer’s Disease and its specific objective to successfully treat and prevent Alzheimer’s by 2025. We are now primed for the expert insight of the Alzheimer’s scientific community to finally be heard in 2015.
Just posting some more information from the Alzheimers Assn. site. (Myrtle brought it up in another thread) Though we did not get all the funding we wanted this is a very important and necessary Act . I am quite pleased we got this passed.
I am going back to DC on March 20, just over two weeks from now. (Unless there is more snow and blizzards I am canceling) I am feeling much different now that Dado is gone, and I hope to channel the deep lessons learned in to really pushing more funding forward. Personally, I believe a lot more attention has been focused on this disease what with the movie 'Still Alice" and with rumors of Robin Williams having Lewy Body Dementia, at least I hope so. And Glen Campbell of course. It is too bad it takes Hollywood to bring focus on it, but I say, whatever it takes. One of our speakers this year at the dinner will be Wolf Blitzer, last year we had Candy Crowley, and as her Mom has advanced dementia she was a wonderful advocate.
The A. Assn. is putting forward their goals, and one of them is to by 2025, have a way to stave off the disease by 5 years, meaning, if you are diagnosed, you will have 5 more years until it is really prevalent, and in the sickness, have 5 more years of a bit more "quality" life. THIS IS NOT THE MAIN GOAL, which is to find a CURE well before 2050.
Of course I wish for other things, like HELP for US, the caregivers, and this is a goal for other organizations.
The AZ. ACC. Act should speed up research and that is the most important.
I added DC Forum to the title of this discussion, rather than start a new one. I want you and everyone to know that although I have not written anything about it yet, I have been working in the background on this year's upcoming forum. The result is that I am unable to go because of the expense, so I will be depending upon you and the other website members who are going, to represent us. I know you will do a great job.
Except for paying the registration fee of $175 given to some delegates ( I was one of them who was offered this stipend), our Alz. Assoc. Chapter requires us to pay all of our own expenses - air fare; hotel; airport transportation; food. The "discount" forum hotel room rate for delegates is $259 a night. Besides that, the forum hotel was completely sold out of rooms early last month.
Thank you for posting those links. To Coco and everyone else - please use this thread to post information about the Forum, the Alz. Assoc.'s goals, and the Alzheimer bills before congress.
Joan, If anyone is going, it should be you. You are the hub of our information system and the advocate for our interest group. I would be willing to contribute to your trip. I can see that this trip costs a lot of money but if enough of us contributed, you could go. (30 x $100 = $3,000; 60 x $50 = $3,000, etc.)
I'm also going to suggest that for future conferences, our group establish a travel account well before this or a similar event so you can attend. There is absolutely no reason you should be spending your own personal money on this.
I would share my room with you Joan, that would help. I realize it is probably too late to make plans but you never know. I cannot contribute any cash at this point, but we can be roomies. The Assn. has paid my trip all the way from Big Island Hawaii and back, plus my hotel and the forum. I can manage "out and about" costs.
Anyway, part of my advocacy was an interview for our local paper a couple of months back. I think I may have shared it before, but here it is again if you want to read it. I think it starts on page 6... This week I have a meeting with our district rep for Tulsi Gabbard, who is the member of Congress assigned to me in DC. I met her last year and she is awesome. Her grandma died of AD so she has compassion.
That was a very kind gesture, and I appreciate it more than I can possibly express, but I just don't feel comfortable with the idea of other people paying for such an expensive trip. I was also going to mention that it doesn't matter anyway, because the hotel has been sold out for a month. Then I saw Coco' s roommate offer, which would reduce the trip price considerably.
Coco, I am half asleep right now, and cannot think or write straight. Please email me your phone #, and I will call you to talk about the roommate idea.
I just came back to this thread and saw your (Coco)comment about something you said being taken the wrong way, but I don't see the comment to which you are referring. Anyway, let's you and I talk about your hotel idea. My son used to live in Hawaii, and the six hour time difference makes for some challenging phone coordination, but we'll figure it out. We're a couple of smart ladies, right? Lol
Hi Joan I just called the hotel and they are going to try to book two beds as they have me down for a King. But they did say it was likely I could get that. AND, it is the Courtyard DC Dupont Circle, not the Wardman Marriot. I will email you.
and of course as the room is paid for there is no charge to you. I am sure our Aloha Chapter would be happy to know about it.
Coco, We keep crossing in the mail (message boards - look above for my edited comment. It's almost 11 pm here, and I am so tired, I have to go to sleep. I will read your email and then we can talk tomorrow.
You said you just don't “feel comfortable with the idea of other people paying for such an expensive trip.” Excuse me? This is not charity. We’re talking about a business trip. When I suggested that our members finance your trip, I was thinking that you would advocate our views as spouses and also report back to us what you learned at the various informational sessions. Your position would be similar to Coco’s, who is representing her local Alz. Assn.
Anyhow, I did not intend to pressure you to go. If you don’t want to go, just say so. But if you do want to go and you think your presence would benefit our members, please consider it. Since Coco will provide the hotel room, you are going to need the registration fee, a round-trip plane ticket, and money for meals, taxis, tips, etc. (These are all standard expenses for business trips.) I think we can raise that. But if we can't, we will find out.
Thank you Myrtle. Coco and I are going to talk tomorrow ( today, since it's after midnight already), and yes, if I can stay with her, it will significantly reduce the price of the trip. I would love to go, and I do have a business account for this website, so maybe we can make this happen.
I looked up available flights, and that will take some creativity, because what I saw wouldn't work. The flight is the night of ( and I do mean NIGHT - 7 PM) of the first day of the forum. If, after I talk to Coco, we can work out the hotel room situation, I will do extensive plane research.
This was one of the years that I particularly wanted to go because I know our congressman; he is very receptive to our cause; votes with us on every issue; and our chapter's liaison between his office and our chapter is a dynamo woman ( Alz. widow ) who goes to every one of his offices in the district, keeps him up to date on all of our issues, and talks him into voting with us. And he usually meets with our delegation himself. He doesn't send one of his aides. BTW, his grandmother was diagnosed with AD last year. (He is one of, if not the youngest, members of congress at 31)
I am attending the forum also. I will stay with my daughter who lives in DC. She is right around DuPont Circle. I am paying for my trip and forum cost. I would contribute to your trip, what do I do to do this? I am going on Saturday March 21st. Would love to meet you guys!
Thank you for the generous offer, but I won't know anything until after I speak to Coco today. That will be between 4 and 8PM (Wednesday, March 4, 2015). There is a 6 hour time difference, so that is morning for her.
I too would like to make a donation for this very worthwhile venture....two strong ladies like Coco and Joan advocating for all of us...Please let me know how to go about contributing!
Please check your email later. I am sending you a private message, but I do want to thank you and everyone else for your generous offer. After speaking with Coco this afternoon, I have decided to accept your offer of helping with the expenses. I will be very honored and excited to represent not only my State of Florida, but all Alzheimer Spouses at the DC Forum.
I checked all of the expenses you mentioned in your post above, and I have to say, I was a bit shocked at how much prices have increased since the last time I attended, which I believe was 2010. However, being able to stay with Coco reduces the amount by more than $1000.
After I get in touch with Myrtle, I will let everyone who has so generously offered to help, know exactly what the expenses are.
Just to give you an idea of what has happened in five years - The last time I attended, registration fee, air fare, hotel, airport transportation, extra meals ( the forum provides most meals), and incidentals cost me $1300. My Alz. Association reimbursed me $800. This time, those same expenses total approximately $2500, with the Alz. Association reimbursing $175 for the registration fee. However, as I mentioned, not having to pay for the hotel reduces the price to approximately $1500.
I will keep you posted after I get in touch with Myrtle.
Thank you everyone. You overwhelm me with your kindness.
You go ahead and plan that Joan. Good for you Coco. I'm in for $750 US funds. I presume this cheque is made out to you personally but can be sent to the same address. If you're short afterwards, email me and we'll work something out.
Please confirm who the check is made out to so I can get it in the mail. There is one sent a week ago to the normal consignee which is the late one not to be confused with what I'm talking about now. Go get 'em, girls.
I too am overwhelmed. It is so hard to be financially strapped, and I myself am doing ok, (just ok), due to Dado's Social Security and a small pension from the VA. Getting those paychecks has made my me feel so much "safer" . So to see these offers of help for Joan, my heart warms for her, (for you Joan); your life is so tough and sad and challenging right now, it must lift your spirits. You deserve it and so much more. You all do.
I am SO ready for DC this year! I have educated myself on policies and research, and my spirit feels strong and real and focused. I know it will be hard too...Dado will be so on my heart and it still hurts so. This is for you my darling, and all the ones who have had to suffer unspeakable suffering, and all that will.
Just full of tears and hope right now. Thanks to all of you.
You made Joan able to consider it Coco. Kudos to you.
Joan, we would like you to take Coco out to dinner. Up to you of course.
As for my little part, I found out today that Dianne had a small insurance policy with P&G and then I came here and caught up with how this idea was going and in Cdn funds it's almost exactly a tithe. I was just minutes after Joan's last post and my bit of good fortune is the conduit of those that would love to contribute to this and can't right now. Consider 200 to be from me which I would have done and the rest to be from the grace of all those who wish this for you. It fell out of the sky today and some fell on you.
I am so touched by the dedication of so many here. Coco. You are amazing for finding the strength and time to prepare for DC. How generous to offer Joan a place to stay.
Joan..there are not enough words to describe your courage, generosity and willingness to help others.
All members of this site are such a special, caring group of people..you continue to make me believe in the inherent goodness of humanity. I wish I could meet you all.
The first thing I did this morning was put my check in the mailbox. Yes, as wolf said, those of us fortunate to be able to give this way do it for all who give of themselves on this website when we reach out and they answer
Joan and this group saved my life and made Larry's so much easier than it would have been/could have been without the knowledge and support offered here. My check went out this morning, and I only wish it could have been more. It is in honor of Larry and all the other dear loved ones who have left us or who are on the long journey out…and in honor of the brave people who take care of them.
Gourdchipper is in for $200 also -- my check is written and will be in tomorrow's mail. While I don't post much anymore, I still read the new posts every day, and I second all those who have said how much help they got from this message board over the years.
Lets face it, this entire thread is genuinely uplifting. It documents in real life the stories of what actually happens where a group hurt badly by life experience - are what??
I'll center Coco out here but I have Charlotte and Mary and others including myself in mind. Coco is more than she was because these truly hard experiences don't make anyone smaller. They make everyone bigger. What is also true is that our hurt is powerful at the same time.
It's quite possible to do all the impressive things Coco is doing here (my opinion) and not take one bit of it in. We may see only the hurt. Which would be as unfortunate as it is untrue. Everyone who reads this thread knows Coco appears to be moving strongly into her life and that that life sounds like more. Unfortunately none of that matters. The only thing that matters (because it's a feedback loop), is what does Coco choose. Don't answer Coco, it's rhetorical.
The memories of the experiences that hurt us in the past either get owned by us or they own us. This is true of all things we believe. It is always us and only us that gives the validity that makes it a belief. Serious events that happened to us have great power. At some point we are safe from them recurring and yet they own us. Well they do not.
It is one of the great powers of serious events that it inflicts victimhood. Victimhood is a bitch. It transfers the responsibility into you in places you cannot reach and can only argue against. But you are not a victim. You were a victim. You are the survivor of seriously powerful events and you have the power to conceive of this in a way that puts a leash on it and starts teaching it how to behave.
That's for truly negative events. Positive life evidence such as Coco is faced with of what we actually are now (you can put Myrtle and others in there too) are just as hard to own. Which is almost, almost funny.