Friday, May 29, 2009


My husband and I are looking for some suggestions for a vacation in July somewhere up in the Northeast. It's an area we aren't that familiar with and would like to visit -- Maine, New Hampshire, Vermont -- any suggestions from my readers out there? We are looking for something not too taxing but that has some points of interest but relaxing at the same time. I know I'm not asking for much!! Please leave me a comment if you have some suggestions or email me at

Sunday, May 24, 2009

What A Difference a Couple of Days Make

My husband has been gone for a few days. This is pretty unusual for him because he is pretty much a home body and rarely travels by himself. But what a difference it makes to me. I know it sounds bad, but when he is away I feel a lot better. I don't have to think, I don't have to talk, I don't have to listen to the television or the radio all the time, I don't have to constantly watch what I'm doing because he is watching over me......and as a result I don't get as fatigued. I haven't had to nap for the last few days because I'm not feeling worn down by mid afternoon. I still get tired, but not that mental fatigue that is so draining. I'm sure that my husband would say "well, you don't have to do those things when I'm around" but he's wrong. He doesn't take an active role in a lot of things and that means I have to try to think about things even if I can't or don't want to. He hasn't quite caught up with the fact that soon, he will have to do most of the thinking for both of us. I have a half day left to myself and I am going to enjoy it!

Wednesday, May 20, 2009

Concentration - thoughts - words - images

I have been having a hard time concentrating lately. I haven't been sleeping well. They could be related. At any rate -- I was having a difficult time last night conveying something to my husband. I realized then that the way I "see" things in my brain has changed. I used to "see" things with words -- if I had a thought I was trying to say or get a point across it was words that I was forming in my brain and almost reading them back in order to explain something or even with a regular conversation. Now, I see more images in my mind rather than words. This makes it more difficult for me because I then have to convert those images to words and then get it out of my mouth! How simple is that? Not that simple for me. Last night I had this whole storyboard of images in my mind with this story I was going to tell my husband. I couldn't get it out -- I couldn't put the words to the images and make it come out. I'm sure this sounds strange to most of you reading this, but I can't figure out another way to say it.

I tried playing golf yesterday -- my concentration just wasn't there. I didn't play too badly but it was such an effort it kind of takes the fun out of it -- if there is fun in playing golf!!!

On another note -- my new friend Bill (who also has younger on-set Alzhiemer's) and lives nearby read my post about the walking stick earlier this week and he made me one! I haven't gotten it yet, but I'm excited about getting it.

Alzheimer's Project

My friend Carol suggested that I put a link to the HBO series that you can watch it on the computer if you don't have HBO. You can go to or go to and there is a link to the series.

Thursday, May 14, 2009

More Feedback on the Alzheimer's Project

I just finished watching the Caregivers segment of the HBO Alzheimer's Project Series. The first person interviewed, Chuck Jackson, is a friend of mine. It was great to see him and to see him in such great spirits. Some of the quotes from the Caregiver's segment I can relate to ----

"You're your own caregiver for awhile, then your friends and family"

"Living life in the moment"

"We try to stay in ther present and usually the present isn't so bad"

"If you can't cry about it all thet me you might as well laugh"

"Alzheimer's is a part of my life, I try not to dwell on it"

"People don't drop over like they used to. you don't get invited very many places"

These things are all so true

Tuesday, May 12, 2009


I've always said my best times were in the morning when I was rested. My mind works much better then. Or, after a nap. Today I tried to play golf in the afternoon. What a mistake. I can't play that well anyway, but my concentration was out the proverbial window today. Since we always walk the course, I have to look at it as exercise -- which we know is good for the brain!

I should have asked my son for a walking stick for Mother's Day. My balance is getting so bad. I always realize this when I am out on the golf course and use my club as a modified walking stick. When my husband and I go walking on trails I need one. But I never think of it until I need it. I forget......imagine that. Maybe he'll read this and remember for me!

Monday, May 11, 2009

Feedback on Alzheimer's Project

Well, I watched the Alzheimer's Project first series. Many people have logged on to the blog -- probably because of the gentleman profiled there that had a blog. My back story is that I was diagnosed 7 years ago with Early On Set Alzheimer's (not referred to as Younger On Set Alzheimer's) because I was diagnosed at an age before 65. I was 46 years old at the time.

Since I've kind of been following along with this project since its inception, I wasn't sure what the finished piece was going to feature. Like many projects, the focus of the this documentary started out entirely different --or at least that is what I remember. But, the finished product is something everyone should see. If people and mainly legislatures that see this don't realize this is a disease we need to take seriously, then I am not sure of what will convince them.

I'm looking forward to the future segments of this piece.

Some of the lines in this first episode that struck home to me were:

"That's what is so disgusting -- I feel so good......"
The disease does "not take her intelligence away" -- this is hard to accept when you can't do the simple things in life -- you know you aren't stupid --it is just the disease talking
"I have to read this a million times" in referring to a recipe -- I hate to have to do that!
"I never feel like I'm giving up" - you can't or you will.
"I don't want to be a burden" -- we all carry this I think
"One day at time" -- live in the moment
"Your judgment becomes an issue" -- how true
"my life is not that important in the grand scheme of things" -- you want to think so, but you have to know that it isn't.

I'm sure others with this disease will see what fits them. Since we aren't around others like ourselves at this stage it is almost comforting to know we aren't alone although we feel it.

For those of you that are reading this blog that need help, please seek help with either a doctor's office, an association like the Alzheimer's Association or wherever you can find what you need. Keeping this blog for years has helped and I call it my therapy -- others have their way of dealing with this as well. Find out what works for you and try to stay positive. It's hard, but when you fight something it's almost as if you are in a competition -- somebody always wants to win -- and I'm not a very good loser.

Thanks for reading and hope that you will drop by often.

The Alzheimer's Project

The first part of HBO's series the Alzheimer's Project ran last night on television. The next part airs tonight with more on Tuesday night. I taped it. I need to watch these things in pieces. But, I know it is good -- from what I have heard and knowing how hard they worked on this I know that is good. Please try to tune in or to tape it for yourself.

I hope everyone had a good Mother's Day out there. As I said, my son was home last weekend and it was nice to have him home. Since I don't see him that often, it bothers me that I know my disease must seem worse to him each time he sees me. And, I always wonder when the next time I see him if I will remember him. I know my disease hasn't really progressed to that point, but you can never stop worrying about that. And, what this terrible disease does to the family. I hate it. I hate it with a passion. My mother always told me never to use that word, but I do hate it.

Friday, May 08, 2009

Mother's Day

Happy Mother's Day this Sunday to all those mothers out there reading this. The best thing that anyone has ever called me is "Alan's Mom". It was nice having him home this past weekend -- an early Mother's Day present for me. Just spending time with him is enough. I wish I could take the credit for him being the man he is today -- but I know that he has done most of that himself. I'm real proud of him.

My relationship with my mother was pretty bad. We were like oil and water. I was never good enough. We went long periods of time without speaking. And, it is sad. But, I tried. I don't remember early Mother's Days with her, but as I became an adult they became harder and harder. I never, ever bought her a present she liked. She would yell at me for buying certain things because "you know I don't like this" is what would come back to me. If I knew that I wouldn't have bought it for her -- but I guess she thought I was doing it on purpose. If I chose the route of sending flowers I would get the response "you don't take the time to go buy me a present so you take the easy way out and call the florist". As you can see a no win situation. Before she passed away twenty years ago we had become friends somewhat I guess, but never had that mother daughter bond. As a result, Mother's Day was always a problem for me -- I was damned if I did and damned if I didn't.

My first Mother's Day as a mother 25 years ago didn't go so well either. My husband is not a person that usually buys presents or thinks about getting a card or wishing someone a happy birthday. I always bought the presents for his mother, sent the cards and was sure that he called her on Mother's Day. But, I was sure that my first Mother's Day would be different. Was I wrong. After going most of that day without even a "Happy Mother's Day" from his lips (Alan was 7 months old at the time) I was sure that he had something planned for that evening. About 4:30 he asked me what we were having for dinner. At that point I knew there were no surprises. I asked him if he was ever going to wish me a Happy Mother's Day and his response was "You're not my mother". I don't think I need to say anymore!

So, all my friends out there that are Mother's -- even though you are not MY mother, I wish you all a great day on Sunday.

Tuesday, May 05, 2009

Manhattan Transfer Concert

Last night, in Macon Georgia we went to an Alzheimer's benefit concert by the Manhattan Transfer. That is a group I have always liked so I was glad when I heard they were playing. The development director in the Macon office asked Alan to come from Washington DC and speak before the concert. Last year, I spoke before their benefit concert so it was nice that they asked him to speak. I was so proud of him -- as every mother would be -- but he put a lot of his emotions into the speech and it was very well received. Lots of people came up to him afterwards and told him how touched they were by his remarks. I know how hard that must have been for him to write and I appreciate him and love him so much. I've posted a few photos from last night. Thanks to all in Macon for such a great evening.

Monday, May 04, 2009

HBO Alzheimer's Series

Several years ago HBO starting working on a documentary about Alzheimer's. This Sunday, May 10th the first of a four part series will run. Below is some more information about this. I was at several of the filmings for this documentary and I know how much time, effort, research and work has gone into it. It will run for three consecutive nights. If you can -- please watch. I'm sure it will be worth it.

Sunday, May 10 at 9 p.m. EST"The Memory Loss Tapes" "The Memory Loss Tapes" takes an intimate look at seven individuals living with Alzheimer's, seeking to introduce a new understanding by sharing the devastating experience of memory loss from the point of view of the person with the disease.

Monday, May 11 at 7:30 p.m. and 8 p.m. EST"Grandpa, Do You Know Who I Am? With Maria Shriver" and "Momentum in Science, Part 1"
"Grandpa, Do You Know Who I Am? With Maria Shriver" is a is geared toward children and young teens coping with a grandparent's illness, and presents vignettes that can help a child understand and deal with a relative's gradual decline into Alzheimer's.

"Momentum in Science" is a two-part, state-of-science odyssey that takes viewers inside the laboratories and clinics of 25 leading physicians, revealing some of the most cutting-edge Alzheimer research advances.

Tuesday, May 12 at 7 p.m. and 8 p.m. EST"Caregivers" and "Momentum in Science, Part 2"

"Caregivers" is a collection of five family portraits that illustrate caring for the different stages of Alzheimer's disease.

The evening concludes with "Momentum in Science, Part 2."

"The Alzheimer's Project" is a presentation of HBO Documentary Films and the National Institute on Aging at the National Institutes of Health in association with the Alzheimer's Association, The Fidelity® Charitable Gift Fund and Geoffrey Beene Gives Back® Alzheimer's Initiative.