Saturday, April 23, 2005

The Week

This has been a busy week -- too busy for me. After my awful testing on Monday I was pretty run down and as a result didn't have a great week.

Next weekend my husband and I will be heading to Washington DC for the National Public Policy Forum for Alzheimer's. We went two years ago and it was a great event -- although depressing because it hits you smack in the face as to what we are facing -- not that you don't know that -- but when you have alot of people in one conference talking about it -- it can become overwhelming. But in the long run it does us good to hear what is going on and to catch up on the latest research. I've been told that about 20% of the people that are at the conference will be Early-On Set people such as myself. That will be good for me.

My son made his decsion about law school this week --he is going to become a "surfer dude" and go to Stanford in California. I'm glad the decision is behind him and I think he will be happy there. Selfishly, I was hoping he would pick Harvard because it is closer to us, but we'll just have to be content in visiting him in California -- which isn't all that bad when you think about it!

Wednesday, April 20, 2005

They probably just think I'm stupid

For quite a few months now, I have been in an "exchange" with the Social Security office to try to collect disability. I've been rejected a couple of times, which, we've been told is pretty normal for the Social Security office. But, they decided to send me for some neuro-psychological tests this past Monday I guess to assess "my disability". I've had these tests before and they are difficult but I had to I went.

The tests were suppose to last three hours. They began at 10:00 a.m. and didn't end until five hours later! We had no lunch break and I had one rest room break. They kept asking me if I wanted a rest room break but I settled for one during the five hours.

Now, think about it, it is very difficult for anyone to sit and take tests for five hours, let alone someone that has Alzheimer's. The last time I took these tests (for my original diagnosis) it was done over two sessions both lasting about two hours.

The tests I had done Monday were done at the UGA Psychology clinic and were administered by a grad student. (My nephew is studying for his doctorate in psychology so I kept envisioning him sitting across the table from me.) The sessions were videotaped and we were also in a room that had a two way mirror for observation. I felt like I was in a police precinct (although I have never been in one, it looks like those interrogation rooms from television).

The tests started off with me telling them a little about my condition and the things I could not do. Then of course, most of the tests were "things I can no longer do" -- like math for example. I just can't do that sort of thing -- in my head or on paper. It was all being timed so I didn't get many answers right. After doing a bunch of memory tests and sequencing tests they then moved on to vocabulary and general knowledge questions. I must admit that after about two and a half hours I probably couldn't have told you my name at that point, let alone who Cleopatra was or who the President of the United States was during the Civil War. Many times when I confessed to not knowing I was prompted for a guess. I'm sure they thought I was being a smart a** but I wasn't.....I was tired and cranky and just couldn't go on.

I'm not stupid......but how do they know I'm not stupid? These tests are designed to try to find me employment.....I can see them coming back and saying she can work...."she's just stupid". Alzheimer's certainly makes you feel stupid and many of us fight that all the time. We have to keep reminding ourselves that it isn't us --- it's the Alzheimer's. When you're tired it is hard to distinguish the two.

I was so exhausted when I got home (and I'm lucky I could get home on my own), that I fell asleep in the chair, couldn't carry on a conversation with my husband, went to bed at 7:30 and slept until 6 the next morning. The next day I was still dragging and not thinking real clearly.

I was talking with someone at the Alzheimer's Association in Atlanta yesterday and relaying this information to them. When I told her that "they probably just think I'm stupid".....she said that sounded like a title to a book. And it could be.

Friday, April 15, 2005

The Week

I just returned from a trip to Albany Georgia where I spoke to a conference put on by the Alzheimer's Association for Caregivers, some professional, some family members. There were about 250 people there and I admire each and everyone of those people -- enough can not be said about what these people do for their loved ones in a day's time. Their unconditional love certainly shines through.

I am always honored when I get a chance to meet them. I've said before that when I speak to groups I believe it is therapy for me. After I meet these people I am just in awe.

Wednesday, April 13, 2005

25th Anniversary

Yesterday was our 25th wedding anniversary. I never thought I would ever be married 25 years -- it just seems like a long time -- and it is I guess -- it certainly hasn't seemed that long. My husband and I enjoyed a nice quiet dinner last night. Our son sent us a card and a nice letter. In it he said he didn't think he had ever written us a letter -- which is not true as he went away a few times and actually wrote us a letter but I don't think he remembers. With the age of email and instant communication I feel like letter writing is a lost art. But don't we all love to get "real mail" and a letter from our son was a beautiful gift. It was filled with lots of reflection on his part and he raised some interesting points -- some which need to be addressed before too long and some that he will never understand until he is a parent himelf. I used to hate it when my mom would say this to me "You'll understand when you have kids of your own" -- but it is oh so true.

Lots of wonderful things have come out of our marriage but our son is the most wonderful thing. I'm sure that all parents feel that way.

My husband --a man of few words -- also sent me a "letter" of sorts --this time electing to use the electronic version of email. He said some things I would have never expected him to say but they were nice words to read. Even though we have been married 25 years it is hard for me to figure out what goes on his mind -- for those of you that know him -- you will certainly understand. He has certainly been good to me and Alan over the years. I am not sure I have been as good -- but we are still together.

I hate the fact that "Big Al" (Alzheimer's) will be taking more of my time as we continue our journey through life. My husband didn't marry that and for that I am truly sorry.

Friday, April 08, 2005

A busy few weeks

I have been extremely busy and of course that throws me out of my routine, so that is my excuse for this week for not entering information in here. It's not a great excuse but one just the same.

My nephew visited us for three days. He had two conferences in Atlanta -- on consecutive weekends so he came to visit us for a few days in between. While he was here I had a talk to give in Dahlonega and he went with me. It was nice to spend some time with him. He is 25 years old and we moved here 25 years ago so I never really had a chance to get to know him. He's a bright kid and studying for his PhD in School Pyschology. But we had a great time going to Dahlonega and the folks there were so gracious. When I speak about my Alzheimer's it is really more therapy for me I think than the groups I speak to so I'm always grateful to get the opportunity.

Then we took my nephew to meet up with my son in Atlanta and he spent a night with him before his next conference started. This weekend my nephew will fly back to Illinois late on Sunday and my brother is coming into Atlanta on business on Sunday morning. Our plan right now is to meet my brother, get my son, catch up with my nephew and all have a meal before my nephew gets on a plane. It's hard for me to follow -- so I am hoping that someone else is keeping track of all of this!

As I write this my son is at the University of Chicago Law School for their admitted students weekend. He went to Harvard's and last weekend he went to Stanford's. It is down to these three and I feel that a decision will be soon. I know this is a difficult decision for him and I'm trying to keep out of it -- it needs to be his decision. That's hard for me to do!

Next week is our 25th wedding anniversary. That is a milestone. I never thought I would ever be married to anyone that long!

I have another speaking engagement in Albany next week and after that I think I need to rest. Not being on my routine is difficult and I'll be glad when I can get back to it. I just have too many bad days when I am not on my routine.