As you know, I was unable to attend the Washington DC Advocacy Forum this year, but our member Marilyn did attend, and she has written a guest blog about her experience. I invite you to log onto the home page and read Marilyn's inspirational blog. Thank you to Marilyn for taking on the arduous task of the Forum. Unless you have been, you cannot imagine how exhausting it is. And thank you to Marilyn for writing the blog for us.
Thank you, Marilyn, for your report from the field. Now that you've got your foot slightly in the door, what do you recommend we can do as interested parties? I am gazing at a very blank future--becoming a full-time caregiver on the heels of being a full-time mom pretty much derailed any thinking or planning about what I might do to earn my air as I attempt to peer into the next several decades.
This is absolutely a problem that needs to rise above Congressional bickering. How did you start? What could possibly be useful?
Emily, I'd recommend you do two things. Go to alz.org and sign up to be an advocate. I think that will result in emails telling you when to contact your representatives in Congress and what the current issues are. Also, call your local Alzheimer's Association chapter and tell them you want to advocate--there are different types of advocates, find out what appeals to you.
We got started when I called our Greater Maryland Chapter out of desperation. I knew I needed support, and that seemed the logical place to go. Steve and I came along when they were starting to push awareness of EOAD, and we were what they needed--a couple who would speak publicly about what a "young" dx does to your lives. In the beginning, Steve did these public speaking gigs with me, because he realized, too, that it was important.
Here are some figures given out at the Forum that irritate the heck out of me:
Change in Number of Deaths Between 2000 and 2008
Breast Cancer down 3% Prostate Cancer down 8% Heart Disease down 13% Stroke down 20% HIV down 29 Alzheimer's UP 66%
I think we face two major problems. (1) The public still thinks it's an old person's disease and old people are expendable and (2) There are no survivors to advocate and we caregivers are too overwhelmed, as a rule, to take on the role.
If you write a letter to your representative(s), here are some buzz words to include. This list was given out by a terrific communications expert at the Forum.
"Imagine" "Devastating, debilitating" "Essential research" "Accountability" "The tipping point" Measureable research results "Respect" (for caregivers) "No excuses" "A public-private partnership" "Patient centered" "The human cost" Compassion for the caregiver "Major breakthrough" "Peace of mind" "The simple truth" "Heartbreaking" "We are falling behind" Effective prevention/treatment "Innovative approach" "Believe in better" "Our mission"/"My commitment" "The diagnosis is hell. Death is the relief."
Thanks Marilyn, I will look into that. Our way of trying to contribute in the past has been via clinical participation...a vaccine trial at Georgetown U., and a couple of different studies at NIH by a doc whose particular area of interest is the unusual variants of AD. I hope they can make some use of the 3 scans I felt, by 2011, like I was inflicting on Jeff. By then he was losing the thread of what and why, so we retired from research.
(editing out the part where I balk at buzzwords...I'm sure there's a GOOD reason for buzzwords.)
I commend Joan on all of her past advocacy , and Marilyn now as well (great blog, marilynMD!!), but I would also like to suggest another way to advocate. For caregivers with writing skills and lots of persistence and determination, consider writing articles for publication in journals read by internists, neurologists, geriatic psychiatrists, etc. to educate them and, hopefully, help improve the diagnostic process and treatment of AD patients and caregivers. It's not easy for a non-medical person to have an article published in a refereed medical journal; the online submission process alone is enough to discourage even frequently published writers. But if lucky enough to get published, you can really make a difference. I've heard from doctors across the country, and from around the world, in response to some of my articles, and if just one doctor makes a change in his or her practice to improve the patient/caregiver experience, than I am happy. (My wife was diagnosed with EOAD at age 63 ... but only after having been incorrectly diagnosed and treated for stress/anxiety/depression for two years while doctors continued to ignore my journal notes documenting observations of obvious AD symptoms.) So many issues come up on these message boards ... treatment at ALF or NH facilities, meds, you name it ... that those with the ability to write and get published can really make a difference. I tried the 'write the politician' route, writing and faxing letters to appropriate House and Senate committee chairs, leaders, etc. but, too often, received either no acknowledgment or form letter acknowledgment. So just as marilynMD noted how 'making your case' in person can have a powerful effect on politicians, making your case in writing can have a powerful effect on doctors! Think about it!!
acvann--great post. Would you please consider giving us more specifics about the medical journals and your experiences?
Because of our relationship with the Alz Association, Steve and I spoke at some professional conferences for social workers, people who run long-term care facilities, etc. Can you imagine the impact when Steve, himself, spoke about having EOAD? I also spoke at an "Alzheimer's Summit" we both attended in Washington years back. After my presentation, a doctor came up to me and told me about a procedure whereby genetic engineering could be used to prevent our unborn grandchildren from possibly inheriting the EOAD gene (it didn't apply to our family situation). However, my point is, if I had never done the talk, I never would have found out about it.
I've also spoken to nursing and pharmacy students (again, through referral by the Alz Assn). I wonder if a caregiver contacts a medical school, a talk could be added to the curriculum for geriatrics?
Emily--let us hear it about the buzz words. They're only suggestions--you have exceptional writing skills, I can understand why you wouldn't need them. For most of us, they would be a big help to get the writing going.
I know that some members here haven't been thrilled by their contacts with the Alz Assn; however, my experience shows that it's not just about support groups or raising money, they can be a conduit to advocacy opportunities, as well.
I've had 2 pieces published in 'American Journal of Alzheimer's Disease & Other Dementias,' one each in 'Journal of Family Practice' and 'Clinical Trials,' and 2 in 'Journal of the American Geriatric Society' with a third piece due out in with them the next few months. Some have been full blown articles, some were Letters to the Editor. I have 2 more pieces now under review at journals. My articles have described our experiences, along with suggestions for improvement in the diagnostic process and follow-up with AD patients and caregivers. I am particularly concerned with getting doctors NOT to use the MMSE as the primary and/or sole initial screening test for AD; it was never meant to be used for that purpose, so several of my articles touch on that issue!!
Thank you Marilyn for going and giving a voice and a face to US. I had original planned on attending but Delaware ALZ group was very late in getting it's info on the bus and it's pick up place was to far up north, not excuses, reasons. Hubby's needs taking a turn for the worse (anxiety, sundowning) made it impossible for me to go. I think members of Congress need to see our faces. I agree and believe if I survive this disease advocacy for EOAD will be my gift to my husband. But my survival is key :)
please share the details "Some of the activities included in this year’s Forum were: training on how to communicate with members of Congress, WHO ARE KEY CONTACTS ?
Marilyn---thank you for your informative guest blog! I was in DC also (sorry we didn't meet) but then stayed in the area for another meeting, so just now unpacking and catching up with everything at home. You really summarized the high points and hope more of our virtual community will attend next year. FYI to Joan---I did tell several spouses about this website---particularly the younger ones I met whose loved ones had just been diagnosed! Marilyn, I had mixed feeling about my various Congressional visits themselves, but that may be due to the political climate we are facing. The more I think about this issue, the more I believe that we may need to frame it as the economic crisis we all know it is in order to get Congressional attention. In my visits, however, one thing I discussed was the need for the caregivers to meet with doctors after the patient no long can which is part of the HOPE act. My husband can no longer get to the neurologist's office, thus I can no longer meet with them---that did get some attention from the policy staff we met with. To answer some of our members' questions about what they can do from home, Marilyn is right that you can be an advocate without going to DC----just go to the Alz Association website----and acvann's comments about writing articles and letters to the editor is exactly the type of stuff which can be done at home. Also, I do volunteer as a speaker with my local Alz Association---spoke on a panel the week before I went to DC to a police training meeting on dealing with dementia individuals, and we were all so impressed with the interest and questions from the group. My DH was diagnosed at 53 and at 60, now requires 24/7 care, so while I often discuss the issues affecting young-onset persons, I will pretty much discuss what the groups want me to. I decided that if I could help one person in my situation---since I remember how alone I felt the first year after my DH was diagnosed---feel a little better, that was worth my time.
I have lost track of what has happened with you during the last week or so....I just read again read your post on this topic. In my mind, I thought you had said "bleak" when you said "blank". I guess I am projecting, just a bit...
For me, each word is powerful and each applicable. "Several decades"; fear resides there.
Marty--to answer your question--key contacts for each of us would be our state's Senators and Representatives. Each of us visited our own state's people because they are more responsive to their own constituents.
Which reminded me of something else, there were several references to seeing the Senator or Rep "back in the district." Someone else may here may be able to clarify this--but I'm thinking it may be possible to call their local office and schedule an appointment (probably with a staffer) and have the same type of conversation we had in D.C.
Texasmom--I'm sorry too we didn't meet up--maybe next year?
One thing our delegation did was to immediately ask the staff if they had any close family members with AD. These folks looked to be in their late 20's or early 30's. Surprisingly, most said they didn't. So I said, "Would you mind telling us how old your Dad is?" Answer--usually early 60's. I then said that Steve was dx at 60--can you imagine if your Dad had to stop working, couldn't drive, couldn't be left alone, your Mom had to quit work to take care of him, etc.? Tried to take it to a more personal level. As I said in the blog, the Congressman we spoke with clearly didn't expect me to say that Steve was dx so young--younger than his own age.
One of the advocates in our group had brought along the actual bills for her Mom's prescriptions--they were a great visual. Hundreds of dollars of medications each month, NONE of which actually affect the actual disease process, only give symptomatic relief for some people for a short time. This really underscored the need for money for research in a dramatic way.
Marilyn and texasmom--please keep us up to date on ongoing opportunities. I have filled in the info at Alz.org, and hope to receive emails and whatnot so I begin to get a clue. I am not excellent at being the "face" of anything, but I can write and would love to channel it to some good.
Thanks to all you writers and speakers who can "work for us."
This is small, and only local, but when my hb was in the special unit of our care center, I became aware that altho' there were some activities and some understanding of caregiving, Alzheimer specific activities and information weren't at the forefront. Staff wasn't aware of classes in the area that would help. Now, several are attending the classes (and receiving professional credit), head nurse and director of activities have visited other facilities to see how they work w/dementia residents. I donated books and suggested activities to the special wing staff. Since I no longer had the direct care stress, I volunteered to help as I was there every day. Now I'm taking a break, but plan to get back to them.
emily--I hear what you're saying about preferring writing to being the "face" of AD. I feel the same way. One reason why it was so hard for me to speak publicly about Steve's illness, especially in the beginning, is because I've been a big crier all my life--for happy and sad things. So, it's always a struggle to keep the tears from flowing as I speak on the issue. But I have to tell you, I think a caregiver speaking to a live audience, no matter who they are or the size, has more impact than any written word can. People always come up to me afterwards to share their stories, offer encouragement, etc. At professional conferences, participants always comment that the most meaningful part of the agenda was the "real people" telling their stories.
Here is something simple that I did today. First of all, I look like Hell - am completely exhausted, and haven't had my hair dyed or cut in months. For someone who never used to go out without eye makeup, it's a big comedown. But anyway, I went to Publix to pick up Sid's prescriptions and get some Lean Cuisine that was on sale (and chocolate chip cookies). At the register, the clerk asked how I was, and said I must not be feeling well - she clarified it by referring to the prescription bag. I saw my opening and took it. I told her that I was fine (relative term), but the scripts were for my husband who has Alzheimer's and Diabetes, and since I may look bad, but I don't look 85, I took the opportunity to tell her that my husband began AD at age 59, and that it's not just a disease for 85 year old's. To my surprise, the bagger, who was 40ish, said that his mother was young when she got AD. I take the teaching moments when they come.
I remember only a few weeks ago when someone I barely know said "you have lost twenty pounds and gained twenty years". I was so angry, so I thought I needed a treat. Went to TJ Maxx and didn't even end up buying a thing. Lusting after some of those handbags, but no purchase for me. Went to their restroom, looked in the mirror and said to myself that either that was the worst lighting in the world or those words are true.
The words froze me. I congratulate and admire those who use their voice.
Abby, that person was an idiot. People are stupid and think they can speak without using their brain. But I will confess I do hate that this disease is taking it's toll on aging me (face wise). I may feel like crap....call me vain.....I just don't want to look like crap. Ignore the idiot and their lack of manners.
Abby, it has been 10 months since my husband died. I have people telling me that I look 10 years younger........be prepared...people don't think about what they are saying or how it effects us - even AFTER.
I always knew that people, including myself, say stupid insensitive things at times. If there is one "good thing" about living with an AZ spouse, it has changed me to not be so callous and jump to conclusions, to choose kinder words.
EXCEPT when they **!!## me off! I have developed a short fuse for idiots. Whoever said that was an insensitive idiot abby, I would like to slap them.
Marilyn, thank you for the wonderful summary of your experiences and advocacy on our behalf in Washington, DC. We are blessed to have you and Joan as the "real people" representing our spouses, and we as caregivers to our policy makers.
I am one of the members here who has had a disappointing experience with our chapter of the Alzheimers Association and frankly I do not contact them for information or support. However, I do want to advocate for more funding, research, and informing the lawmakers and public about the terrible toll this disease takes on the whole family. Therefore, I've decided I will contact the Alz Asso to see how I can be of service-being disappointed in the lack of support they provided is not a legitimate reason to not use their avenues of spreading the word. Thanks for the inspiration.
LFL--Glad to see you'll contact your Alz Association chapter. I think your comment using their avenues for advocacy, even if one has been disappointed by their service, is a very valid one.
Along those lines--I want to mention that our Alz Association chapter has tremendous staff turnover (my guess is that the reason is the nonprofit world pays so poorly). I can see that if this a national trend, it could lead to poor service. On the other hand, if you were turned of by a contact with them some time ago, there's a good chance that the employee is no longer working there and you'll have better luck this time!
My experiences with the local Alz. Assn. were all negative, which led me to the local branch of the Alz. Foundation ... which, at that time, I didn't know even existed. It is through the local Alz. Found. chapter that I not only became involved with a terrific weekly support group, but my wife is also in a group meeting weekly at the same time with others at the early/moderate AD stages, plus the Alz Found branch provides many other daily and weekly programs as well. So to anyone else out there disappointed with their local Alz. Assn. branch ... check to see if there is a nearby branch of the Alz. Foundation and chekc them out!