FINALLY! I have written the blog about the Washington DC Forum experience. It is in two parts, both posted together. It is in two parts because I thought that the emotional impact of your project to make it happen, meeting website members, meeting advocates from all over the country, and making a difference in each other's lives, deserved its own discussion apart from the "nuts and bolts" of the advocacy work. I invite you to log onto the home page - www.thealzheimerspouse.com - and read the blog. Please post comments and opinions here. Thank you.
By the way, I have not looked at my email since I returned. I will be tackling that project tomorrow, so if you have written to me within the last 10 days, and have not received an answer, one will be coming soon. Jackiem29, Texasmom, Coco, paulc, Nikki, and myrtle - I will be emailing you within a few......soon.
Dear Joan- it was my honor and delight to meet you in DC. I told both of my daughters that I was meeting one of my heroes- what you have done for all spouses dealing with this disease is immeasurable! And fyi, I told the "personal story" at my 3 meetings- the difference between the responses 4 years ago and this year was amazing. Regardless of whether these offices end up supporting our "asks" it is clear we are educating them on the horrors of this disease. Thank you again and hope to see you next year!
Joan here is a link to the Co sponsors of the Hope Act. Note there are at least six from your state! None yet, from Hawaii, dissapointing.
Your blog is really really good and the explanations on how it works needs to be cut and pasted to keep for reference. Thank you so much for that Joan, really great job.
DC was an amazing experience, I am so glad I went, for so many reasons. I did feel like I helped to make a difference. However..
I am in a really down sad place, and I almost feel guilty about it. How I know so many others hurt as much and more, but this is my journey. Maybe by next year, I will be in better shape, and able to go again. But for now, coming home after all that intense time has really struck hard. Strange, before I left for the trip, I felt quite good, and strong. Now, all I can do is look out in to the yard, and he is not there, moving the rocks around in his dirty jeans and knee pads, and head wrap. Raking up the flowers and leaves. Hopefully I just am in a phase, will re hash and re boot and get back on track.
Thanks to everyone on this site for their support to us on this trip, your support constantly in our ongoing battles, and for the love and care you give your mates. Next time I come back to write, I will be in better shape.
Being there in that capacity, Coco, had to have an effect on you. Take the time you need to de-compress. After DH died, I had to get as far away from ALZ as I could for a long while. Now, not so much. I visited yesterday with my BIL's mother in the nursing home with ALZ. It was her 97th birthday! I thought it would bother me - but it really didn't and she was a delight to visit. She chattered and sang and seemed happy. And I was happier when I left.
You will regain your strength and go forth and conquer the demons that we all have had!
Joan, you mention Nikki in your opening about emails, I have been thinking about her lately and that we have not heard from her. Thank you for the blog and for going to DC. A lot of us would be so lost without this web site. It has helped me in so many ways and helped with the coping with all the bizarre things that happen that you don't ever realize by observing others because 24/7 is the harsh reality. My husband has been in care for 2 years now. My daughter or I go every day to feed him his lunch. There are two tables separated in the dining room for those who need feeding, anywhere for 8 to12+, and they all are in advanced stage, it's very hard to see that and many have died and new ones replace them. I get very upset with some of the ads on TV for aricept, etc. as they only have nice quiet smiling people in them which sure isn't the typical picture that most of know. Enough of my rant. Thank you again for all you do for us. Dorie
Joan As I have said the forum was overwhelming. I did not realize how tired I was until I returned home. Although I think it was attending the forum and placing DH 2 days before I went. I too got to tell my story to 2 senators (aides), and 3 representatives (aides) from Georgia. 2 of whom have signed the "asks". They asked me during the training Tuesday if I would in front of our training groups. I did. Then they asked if I would the other times. There was a couple with us who also told their story after mine. He and his wife were together. She has Alzheimer's. This was their second year doing this together. There were so many stories that have stuck in my head. The young college man who spoke during the Monday night opening. It is so sad to see so many dealing with this. I want to thank everyone who has been an advocate before me. As most people with and illness in their family, I would never have been doing this if it had not hit my family. So thank you to all who have gone before us in this fight! I am already planning to attend next year. Talking to my SIL in going with me.
I too want to thank each of you for advocating on behalf of our spouses and ourselves. Our legislators in Washington need to have an understanding of the devastation this disease causes with marriages, family relationships and finances.
Joan, I am so glad you were able to "frame" your story that you and Sid were productive, contributing members of society paying taxes and doing your fair share in the community. And it wasn't 25-30 years ago either. Also mentioning that the caregiving demands for Sid made it impossible for you to continue working long before you were considering retirement. I think our congressmen and their staffs really don't understand that is what happens with younger onset dementia. In fact very few people actually understand that.
Coco, Texasmom, and Jackie, thank you all for the hard work and inspiration you give to all of us. I can't think of better representatives, You make us all very, very proud. I am honored to know you.
Yes and it was great to see you yet again Texasmom. I missed meeting so many others, it is just too nuts too much to do! And for the brief time spent in our room it was so good to hang with you Joan , someday we will get together again, for some fun too.
I am feeling a bit better today, it is to be expected I know. After all the excitement and love to come home to a quiet house. However things really did get "stirred up" at the convention, Dado was just with me in spirit the whole time.
Paul it was too bad we could not have some more time too, I will always remember your energy and friendliness and my heart goes out to you and all those challenges. Please keep in touch ok?
I must share one funny story. Joan and I were having dinner, and this young, tall, dark man, with dreadlocks down to his waist , came up to us to tell us how wonderful he thought we were, that he could just sense our energy. (something like that) Then, he honed in on Joan and made her give him a high five. It was quite funny, and it was a bit tough getting him to move on. We were not really interested...I think the cowboy type is more in our line....LOL
Besides being able ( thanks to all if you) to go and speak to legislators/aides in person, I am most pleased that I was able to thoroughly explain the workings of the Forum to all of you. It is important that you know what is being done and how we do it in relation to advocating for our needs.
The first year I heard about the Forum, I decided it would be a good idea for me to go. I had just started my website the year before, and I figured the Forum would be a good way for me to advocate for spousal issues. I had NO IDEA what I was getting into. When I got there and experienced the magnitude and pace of the event, I was OVERWHELMED. "You mean I have to TALK to these big well known politicians????? I have to study and learn legislative bills???? And I have to walk miles to do it on little to no sleep??? I literally walked around like a Zombie that year.
So now I do my part to educate all of you about how this all works, so you can be more equipped to know how to navigate the system should you want to make our needs known to your legislators.