Saturday, May 21, 2011

Washington DC Part Two

I'm back home after five days in DC. It was nice spending time with my son and daughter-in-law, but my main purpose there was to attend the Alzehimer's Association's Advocacy Forum. We spent one whole day on Capitol Hill talking to our legislators and their aides about the two bills I mentioned in my post below. Reaction was good and hopefully we will see some movement on these bills in the near future.

I was also able to meet many folks who belong to a Facebook group called "Memory People". It was started several months ago and has almost 700 people in the group. Had I thought about it before, I would have planned to have a "meet up" with everyone, but as word spread that some of the group's members were there we were able to meet. At first the Facebook group started out with just those with Alzheimer's and has grown to include caregivers as well. It is a closed group and you need to be invited to be a part of it, but if you are interested in it, please leave me a message with your email address (I won't publish it) and I'll get back to you.

My husband accompanied me to DC but didn't go to the meetings with me. He says it depresses him. I understand that -- it depresses me too, but I get through it. Having him with me was hard. Hard from the standpoint that I can only process so much information at a time. Usually when I go to these meetings, I'm able to go to my room at night and not have to talk to anyone, not have to listen to the television blaring and just have some down quiet time. When you are sharing a room, that is hard to do. I couldn't really relax or wind down before it was time to go to another meeting. I know I only absorbed about half of what was said because my brain was on overload, but I was there. I also worried about what my husband was doing, when and where to meet him, etc. Plus, as you know from my other posts, he worries about everything -- the weather, the cab fares, the restaurants, you name it he worries about it. And he doesn't just worry silently -- he has to share with me. I've lived with it for over 30 years -- i should be used to it right? Again.....slow learner!

I encourage you to hop on over the website for the Alzheimer's Association and check out what happened at the Advocacy Forum. And, if you aren't already an advocate -- I hope you would consider doing it. It doesn't take much time, and we need you.

Another site I would encourage you to go to is Alzheimer's Impact movement (AIM) is a nonpartisan, nonprofit advocacy organization working in strategic partnership with the Alzheimer’s Association to make Alzheimer's disease a national priority. There's lots of great information on the site about current legislation and issues that are vital in moving our cause forward "A World Without Alzheimer's"

Keeping Mum

is a book written by Marianne Talbot. The book deals with caring for someone with dementia. Ms. Talbot tells the stories of caring for her mother in a truly unique, humorous and loving way. For all of my readers out there who care for someone with dementia, it's worth reading. You're not alone although I know you feel it sometimes. Believe me, the person with dementia does as well. Ms. Talbot's book starts out with the definition of "piglet" which she uses throughout her book. She borrowed it from another writer, but the word "piglet" is used throughout the book to stand for the person being cared for. It stands for "Person I Give Love and Endless Therapy to". It took me a little while to get used to this word in the book, but before long I caught on -- yes, I'm a little slow to new ideas.

The book deals with all phases of dementia as well as most phases of care-giving....from in home care to nursing home care. The author has friendly tips all throughout the book in dealing with her "piglet" to dealing with other family members. In the back of the book she offers practical advice on dealing with the stages of dementia.

But it is humorous and warm and filled with compassion. If you are a caregiver, please look for this book. You'll see yourself in it, you'll have dealt with the same problems, and you'll feel like part of a community.

One word of note -- the book was written in England and many of the references deal with British agencies, laws and legal issues inherent to the British ways. You will probably find something comparable in the country you live in, but there are lots of British references.

Thanks to Ms. Talbot for having the courage to write such intimate details about her life and her relationship with her Mum. Knowing I am on the other side of the coin made me feel bad, knowing what my family has to look forward to. I'm not sure I could be a good caregiver if I had to be, but you never know I guess until you are facing it. God bless all the caregivers out there -- you are heroes in my book!

Tuesday, May 17, 2011

washington DC

I'm in Washington DC right now. I'm getting ready in a few minutes to head to capitol hill for meetings with legislators and aides to ask for more funding for Alzheimer's research. It's a rainy day here in DC . I'm at an advocates forum and this year over 600 people are here. Over 300 of these people are here for the first time -- that says a lot! We are here to help get the Alzheimer's Breakthrough Act passed as well as the HOPE act which insures a care plan for those with an Azlheimer's diagnosis.

Yesterday, Melody Barnes spoke to our group at lunch. She is the Director of Domestic Policy for President Obama. Imagine my surprise when in the middle of her speech she mentioned my name! She then began to quote from an article I had written for The Shriver Report. I was shocked when I heard my name mentioned by her. My cell phone started buzzing with text messages from others in the room commenting about my mention. It was a little embarassing but I was humbled at the same time. I guess the administration is looking at lots of sources out there on Alzheimer's. I've also met some folks from the Facebook Page Memory people. Many of them are here for the first time and are enjoying their experiences.

Have also had a chance to spend time with my son and daughter-in-law while in DC. More when I return.

Sunday, May 08, 2011

Vince Gill Story Part Two

I received a comment on my post below. It is from the cousin of the young man who got up to dance with his aunt. Thank you Ms. Reynolds for sharing this lovely story. I didn't want to just post this in comments, as many of my readers don't always read them. So, I hope you don't mind. And, speaking from someone that has Alzheimer's -- I know that this certainly meant a great deal to your mom. We should all wish for such a "touching moment" in our lives.

I came across your blog and thought I'd tell you the story behind that "touching moment". The couple you saw dancing was my mom and my cousin (he's more like her grandson than nephew as his father is my father's baby brother). "Look At Us" was my parents song from the day they heard it until last year when Daddy was snatched away from us following a tragic accident. Mom has Alzheimers and Daddy was taking care of her. She now lives with me, my husband and daughter. On April 29, 2003, 3 days before my parents' 50th anniversary, my niece had gotten front row seats for my parents and aunt and uncle (parents of the young man you saw dancing) to go and see Vince in Sarasota, Florida. We had made them a sign and my aunt gave a letter to a security guard before the concert asking that Vince sing "Look At Us" for my parents. Not only did he sing it for them but he brought them up on stage and they danced on stage while he sang. It was a moment that is one of my mom's most treasured memories and one that Alzheimer's hasn't touched. Before Daddy died he promised Mom he'd take her to see Vince one more time. When my cousin heard on the radio that Vince was coming to Macon and it was an Alzheimers fundraiser he called to let us know and I bought tickets the day they went on sale. We knew this was orchestrated by God as it was 3 days after Daddy's birthday and Mom and Dad's anniversary and with Mom having Alzheimers we knew how special this opportunity was. Both of Daddy's sister's, his only living brother and his wife, their son,and my husband and I were there with Mom. We didn't tell her where we were going and she was so surprised and excited when she picked up the program from her chair. My aunt and I had written Vince letters and I gave them to the guitar player when he was tuning he guitar before the concert. If you remember Vince dedicated the song in memory of Dennis Segars - my dad. So now you know...... the rest of the story. Vince Gill is an amazing person that has given my mom and my family 2 of the most precious memories and I will forever be grateful to him for taking the time to read a letter and then having the compassion to touch the lives of people he's never met in such a special way!!

Thursday, May 05, 2011

Vince Gill - Macon

Tonight I was in Macon for an Alzheimer's Fundraiser featuring Vince Gill. I'll post some photos soon, however, one very touching moment during the concert is when Vince played "Look At Us". I noticed a young man (late 20'as I would say) get up and an older lady followed him. I guess she was in her early 80's maybe? Anyway, the young man, took the lady in his arms and started dancing with her. I'm sure it was his grandmother or something, but it was so touching. It brought a tear to my eye. Several people got up to take their photo and when Vince Gill finished his song there were lots of women around that young man clapping for him and his partner. I shed a tear at that, too. How many young men would do that -- with 2,000 people in the room!

Tuesday, May 03, 2011

Larry King Special

Larry King did a special on Alzheimer's Sunday evening. You can find more about it here

I recorded it and watched it this morning. It's very informative for those not knowing a lot about Alzheimer's. If you are already dealing with Alzheimer's you probably didn't learn much, but it was a good overview. Enough to get people talking some more about the disease. We can't stop talking about it!