Hi Everyone, Just got home and saw that Joan's trip is on! And many people have said they will contribute. Joan emailed me and said to make the checks out to:
The Alzheimer's Spouse, LLC
address: The Alzheimer Spouse, LLC Joan Gershman P.O. Box 880303 Port St. Lucie, FL 34988
Paypal should NOT be used for the purpose of funding this trip since the forum will take place on March 23-25 and it takes weeks for Paypal to get the $ to the bank.
I'm going to ask Joan to let me know when she gets enough checks to cover the $1,500 she estimates she will need (plus a "cushion" of a few hundred dollars), so you will know when to stop sending money. I'll post that info on this thread. From what I have seen already, it looks like we will reach this number quite soon.
My check will be in the mail in the am. It is the least we can do for all the support you/this website have provided to all of us in the single most difficult and trying time of most of our lives. I know Tim would bless this and send his best wishes for an amazing trip if he had any idea how valuable you have been to help me to be a better caregiver! Thanks for putting up with us Joan!!!
Here it is 2:30 AM, and I should be sleeping, but as is too often the case lately, I am still up having tried many times to go to sleep. My racing mind keeps me awake. This is as good a time as any to tell you how deeply your generosity has touched my heart. It has done something more - it has gotten me out of the depressive funk I have been in for a year. You have kick started my ambition - I am full of ideas and so looking forward to advocacy work again.
The one snag in the situation is the airlines. There are very few flights left from my area airports to Washington DC during Forum week. Unfortunately, it's too late to find anything reasonably priced, but I'm a good airline shopper, so I will find the best price I can. As long as I am up, I may as well look now. I read somewhere that good deals are often found at 3 AM in the morning.
As for any extra money, coincidentally, I was looking at the website bills recently - taxes, hosting fees, etc. I thought - I just paid those; how could they be due again? But when I looked back at my last request for help in those areas, I found that it was made 11 months ago in April 2014. That would explain why those bills have popped up again, so I can assure you, if there is extra money, it will go towards those pesky expenses.
Once again, I thank you from the bottom of my heart for being so kind and generous.
I should be going to bed, but I am going to give a quick check at the airlines. I will keep you posted every step of the way.
Mail truck didn't make it up my road due to the large accumulation of this fluffy white stuff on the roads. I think maybe the nice layer of ice underneath may be a contributing factor also. Check will be delayed by a day. The joke is on me...I moved south to escape this kind of winter misery!!!
I had a long talk with Myrtle today - she was so encouraging. I assured her that I would do my absolute best to represent all of us at the Forum. I made my plane reservations this evening, and will pay the registration fee for the Forum tomorrow.
Right now, I am exhausted, and am going to bed early, but over the weekend, I will write an informative blog about how the Forum works and what I will be doing for all of us. I am so excited to be roommates with Coco! Do you think DC is ready for the two of us?
This experience was an spot of brightness that caught me completely by surprise. I often feel that I’m living under a crushing burden of sadness and stress. I had come to believe that nothing good would ever happen again and that life would be an endless struggle with no point to it but to survive. And then something like this comes along out of the blue and people astonish you by their generosity and willingness to join together to get something done.
After talking with Joan today, I learned that Alzheimer’s advocacy is something she loves to do but has had to severely curtail. So in addition to doing something of real value for us, this opportunity will allow her to get back into the work she loves and is good at.
With all this going on, I forgot to say how much I appreciated the beautiful article about Coco and Dado that appeared in West Hawaii Today in December. Coco posted the link on the other thread about the Alz Forum but I’m copying it here in case you missed it.
Aunt B*, I have been saying for months now that if I were free to move, I would immediately pack up and head south to escape the snow. Hmmm. Based on your experience, not a good plan!
Yes Myrtle, this experience has lifted my spirits too, such an amazing outpouring of Aloha! I just got home after a long day in Kona, doing my local Ambassador duties and had a meeting with our islands representative for our member of congress in DC, Tulsi Gabbard. His name is Dwayne Mukai. As always, when I have to "talk story" about our cause with someone I have never met, I feel a bit anxious.
The meeting was so unexpected and so uplifting. He told me straight, I know next to nothing about this disease, please tell me all. He was very interested also because he has an uncle with it, sounds like stage 5. We laughed and even some tears, and he assured me that he believes our departed really are there in spirit, and that he got "chicken skin" looking at Dado's photo. He said, "Wow that is one local bruddah!" lol. I came away with a renewed faith in humanity and in this advocacy purpose. Just an amazing day.
Joan, if you are as on fire as me, then they better watch out in DC, we will kick okole. (behinds) more and more, I am so pleased we are going to meet, and be roomies. I cried and smile too, all the way home on the two hour drive.
To each and every one of you, my profound thank you. This is FOR ALL OF US.
First of all, my heartfelt thanks to all of you who are making this happen. I have been under the weather for a couple of days - think I am feeling a bit better now. That's why my DC blog did not get written this weekend.
I want to be as transparent as possible, allowing everyone to know how the money is being spent. However, this is a public forum, and anyone can come on here and read the posts. Therefore, I would like to keep privacy for myself and those who so generously contribute. For this reason, I am going to send private emails to anyone who contributes with the amount listed that you have sent. I hope everyone can understand my reasoning behind this decision.
I also want to send a great big thanks to all of you who, although unable to support this effort monetarily, always have and still are, supporting my efforts to bring awareness to Alzheimer Spousal issues. You have done so with your incredibly generous gift of advice, understanding, emotional support, and love to all who come to this website.
And of course, another big thank you to those of you who have helped financially support the website over the years.
This forum is a ridiculously expensive event - My airfare, because it was purchased so late, was 3 1/2 times what I paid the last time I went to DC. Registration for the forum, because I will be doing it after the March 2 deadline is $250 instead of $175.
Thanks everyone.
Oh, and I want to add - if you do not receive an acknowledgement from me within a week after your check was sent, please email me and let me know. I want to make sure everything is accounted for. And one more request - please put your "screen name" in a note to me or on the check. I don't always know your real name and your screen name. Your real name is not in the administrative profile to which I have access, unless you have listed it in there when you signed up.
Somehow I missed this thread. I was blown away when I read of the great generosity and support you have been offered so you can attend the forum in Washington D.C.
Not sure when you need the money, but I will mail my check tomorrow.
Again, thank you for all you do for us. I have always marveled at how you juggled so many things at once - taking care of your husband, your father, this site, your work, being our advocate, and still managing somehow to survive.
I have no interest in knowing how the money is spent. Neither for your website nor for this. As to contributions, when they come in you let them come in. And while it sounds like your initial estimate is covered don't forget that you promised to take Coco out to dinner and that I be allowed to backstop any shortage. At least that's how I recall that.
If you go over do something useful with it when the time comes. I'm pretty sure I speak for everyone when I say none of us have any concerns about how you conduct yourself and don't require an accounting any more than we do in how you run this place. As Vickie said, two mama bears will be on the loose in DC.
I ask Coco to write a nice long post telling us all about it afterwards. After all Coco, it's your stepping out into life that caused all this in the first place.
Wolf you rock you really do. And I would feel the same about the money. Everyone here knows it will be used in the way it should be, and it is up to you Joan. I have been dieting to fit in to my favorite clothes so I look hot for my trip...lol...and I am SO LOOKING FORWARD to some eating of a great dinner with wine too!
I am going to try to cut and paste a short blog from last year in my next post, minus the photos as I cannot do them here.
Nevermind. I have the feeling you'll be using your communication skills more in the future. This assignment is perfect for you. Make the movie then tell us all the story.
Joan, I agree with Wolf and marche. I don't need an accounting, either. As a record-keeping matter and in case you need it for tax reasons, you should keep a list of your expenses and hang onto or scan your receipts. But I certainly don't expect or want you to share that information with me. And please don't feel you have to explain to us how expensive plane fares, meals, ground transportation, etc., are. I think most of us realize that. (Anyhow, it's not as though you're in a position to negotiate!) Also, several people mentioned above that if you have any money left over, you should use it for the expenses of the website. I agree with them as well.
As I understand it, your role is to attend this conference, advocate for us when appropriate, and let us know whatever you have learned that you think is important for us to know going forward. That's a big job right there.
Another less visible way of how the cost of the forum has gone up, in the past if you only wanted to see your Congressional reps on the last day there was not charge, now they charge the full fee.
paulc, I have no idea of the meaning of what you just said. What fee are you talking about and who is charging it? The Congressional reps or the Alzheimer's Assn? And what do you get if you pay it?
Wait! Wait! Pay to see the reps that were elected and are paid with our taxes and have their own Cadillac health insurance and pensions from our taxes?? Gak, Paul. Not sure whether to thank you for the information or not!!
I think what Paul is referring to is the cost of Forum Registration, which is now $250 for the 3 days. It's on the third day that we go to see the representatives and senators. But no matter how many days you are going to attend the forum, you need to pay the $250. Hopefully, by the end of today, I will post the blog that explains how this forum works. The first two days are extremely important, especially the second day, when we are given our advocacy information and taught how to present it to the legislators.
Myrtle, the Alz Assn. This is a change in policy, previously if you attended the Congressional rep meetings on the last day and nothing else there was no charge. I was told this by my dementia group moderator who is active with the Alz Assn. And she said if you happened to show up to see your Congressional rep coincidentally at the same time as the group on Wed, who would say anything (wink-wink).
You can see your Congressional reps at any time. This is seeing them as part of the Alz Assn group. So for the 3rd day you have to pay the Forum Registration fee, where in the past you didn't.
As of today, Wednesday (3/11/15), I have sent out emails to all who have contributed listing the amounts. This is to help both you and I keep track and make sure the amounts are correct. If you sent a check which you feel should have been received by Wednesday, March 11, 2015, and did NOT receive an acknowledgement email, please let me know via my email - joan@thealzheimerspouse.com. The mail in Florida is often slow, and I am not always sure at what time of the day they put it into the post office box.
The HOPE for Alzheimers Act is one of the main things we will be petitioning for in the upcoming forum. From what I could glean, basically it will have each provider have a PLAN put in place after diagnosis, and this would all be covered by Medicare. (not sure how it works yet with younger onset..I will find out) . There will be more focus on careplanning instead of just diagnosing and giving a pill and pushing us out the door. I wish we would have had this, but I do have HOPE that this can help in the near future, for the rest of the families that will encounter AD. It also will focus on helping the CAREGIVER. You can read up on it on the link below.
As to what our ASK is financially, we will not know that until next week.
Coco, I am not sure how that would work for younger onset folks either.I DO know that once we received the diagnosis when he was 56 years old, we applied for Medicare. He was approved almost immediately (we did have to wait for the 18 month waiting period for it to actually go into effect). So, perhaps even the younger onset could be eligible since they get approved for Medicare because of the diagnosis...not their age. At least in KY, where we lived at the time. I personally believe that the 18 month waiting period should be waived when the diagnosis is AD or any other progressively terminal disease process.
It is my understanding that a person can apply for SSI or SSDI and be quickly approved if the condition is on the Social Security Administration's list as qualifying for Compassionate Allowance. Both EOAD and FTD are on the list. I don't think there are any age requirements but for SSDI there have to be accumulated work credits. I really don't know anything about SSI.
After a person qualifies there is a 24 month waiting period before Medicare can be received if age is a factor. At least this is how it was explained to me in 2011. The Medicare language was something like this: "Once a person is qualified to receive SSDI upon receipt of their 25th check Medicare eligibility will begin."
In my husband's situation he died before he was eligible. So, it seems that HOPE would not have been a relevant factor for him.
Abby That is how it worked for my DH. He was on SSD for 2 years and then had to go on Medicare. He was 56. I was very fortunate. I had no issues applying for SSD. I had it in 3 months. I did all the work for them. I had a name and got forms and faxed emailed and stayed on the phone for hours. I hear stories of how long it takes some.
Joan, Thank you for the blog about how the Forum works -- the three days. And Coco, thank you for the information about the focus on care planning that will be one of the proposals that will be discussed. I hope to read a little more about the proposals when I get a chance.
I don't know how to thank all of you enough for making this trip possible, except to do my absolute best to represent you at the Forum. I have printed out the advocacy material, and am starting to study it. Sadly, it doesn't seem to me that we have made a whole lot of progress since the last time I attended the Forum in 2010 ( I think it was 2010 ). I am hoping that with Maria Shriver' s new initiative - see Marsh' s thread on women wiping out Alzheimer's Disease- that things will move more quickly.
I am leaving for DC on Sunday, and will get at least one more blog written before then. Coco and I will keep you as updated as possible during the Forum, but the pace is non stop, so you may not hear from us as often as you would like. You can always follow what is going on at www.Alz.org. They update regularly.
By the way, I know of at least two other of our members who are attending, and I hope to meet up with them.
D.C. or bust is a good logo for me...FIRST a few days ago I felt a head cold and sore throat. I think I have nipped it in the bud....no no no cannot be sick. Feeling good today, then...CRACKED a tooth eating macadamia nuts!! Aaargghh!! Thank God they squeezed me in for an emergency appt. down at our little dental clinic in this one horse town. Had to get an old filling dug out...(from childhood), and a new one put in. I thought that dentist was going to rip my head off , seems he should be working on horses not people...but..glad it is done! As I was laying in the chair I was remembering our last trip there, when we had to hoist Dado up the steps as there was no ramp for his wheelchair, and I sat and held his hand as they pulled out a couple of teeth. SO I am in there today, and as he is working on me the memories came flooding back and aaarggh tears were rolling down my face remembering.
Anyway, no BUST here I am making it to DC by hook or crook.
Feeling much better today, that tooth was aching for some time , way better now. Also lighting 16 candles and singing that song....oh wait...it is 60 candles lol
I am going to have to pick up another jacket it looks quite cool in DC. Don't want to be shivering and whining.
I spoke to Coco last night. We're almost ready to go. Packing for DC is a challenge for a Hawaiian gal and a Florida gal. Sandals and capris aren't going to serve us too well in 40 degree Washington DC, so we're scouring our closets for some sweaters and jackets.
This will be one of the biggest years in Forum history for attendance. At last count, 1000 delegates from all over the country are attending. The legislative climate in DC is not to spend any money on anything, but we're going to do our best to convince them otherwise as far as Alzheimer's Disease is concerned.
We both are quite hopeful that Maria Shriver's latest initiative - http://www.cnn.com/2015/03/13/opinions/shriver-wipe-out-alzheimers/- will give a real boost to our cause.
UPDATE - Coco is flying from Kona to Los Angeles tonight ( Friday). She will text me when she lands in LA. She has at least a 3 hour layover. I think by the time she is on her way to DC, the weather will be better. I am bringing a big warm scarf for her.
I'm putting outfits together - Sid's side of the bed is piled high with clothes. Decisions have to be made - I'm sure all of you ladies can relate. Oh, how I wish which clothes to take on a trip were the only decisions I had to worry about. Wouldn't that be nice?
Last minute errands and finishing the packing tomorrow. My flight is Sunday morning. I will keep everyone as updated as possible. I think I told you, but just in case I didn't - Texasmom and Jackiem are delegates from Texas and Georgia, so I am thrilled to be meeting them on Monday. If anyone else is going and would like to meet with us, email me - joan@thealzheimerspouse.com
Sid does not know one day from the next, but sometimes he knows that I have not visited, and other times he is so surprised to see me, he asks what I am doing there and how I knew where to find him. I never know from one day to the next how he is going to be, but I did write on his calendar that I would be in DC and which days. That is in case he asks for me, the staff can show him the calendar and point to when I will return. After I see him tomorrow, I will decide whether to tell him that I am going to DC for a few days or if I will just say - see you in a few days. It depends on his level of awareness.
I thought I would have time to write a blog before I leave, but I don't think that's going to happen. In any case, I will put up a notice in the blog section about the DC trip.
We're here! I have to tell you something funny. I left Florida this morning with our weather predicted to be in the 90's. DC weather was predicted to be in the low 50's. So I go out of the DC airport and I'm COLD. I put on the winter coat that I took with me. I'm looking out of the taxi window and I see scores of people running in SHORTS! What the....? It's all in your perspective. LOL
Coco is as much of a sweetheart in person as she is online. We're all registered for the Forum, and after an early dinner, we will get a good night's sleep. But first I will read all of the advocacy material they gave us when we registered. I have FOUR stars on my badge - it just means that this is my 4th Forum, but I guess they want us to feel important.