Memories

I think my husband and I have become officially "old" people. The reason I say that is it that every day it seems we are saying "remember when". Whether it is something my son used to do as a child, what we did in college or as children we are bringing up the past. Yesterday I was telling someone how in college we used to go "Trick or Drinking" on Halloween. That was certainly a long time ago!

But, at least I can still remember a lot of these things -- recent things, not so much.

One thing I enjoy doing every year that hopefully will bring back memories for my son, is my annual letter I write to him. Every year on his birthday (his birthday was a few weeks ago) I write him a letter. I started this on the day that he was born. For some reason in the hospital I this desire to write him a letter to let him know what I was feeling that day. I don't know why but the urge was so strong I just had to do it. I wasn't sure at the time what I was going to do with the letter but I wrote it and tucked it away in my things when I went home from the hospital. A few weeks after he was born I found it and re-read. I sealed it in an envelope and thought I would put it in his baby book.

On his first birthday the thought occured to me to write him another letter, so I did. I sealed this one up and put it with the other one. Then I realized that this would become my tradition, each year I would write my son a letter on his birthday. My thought at the time was that when he turned 21 I would give them all to him.

Each year, I look forward to writing that letter come October. I write things down over the year that I want to include in it, gather some photos from the year and any newspaper clippings or whatever I might want to include. They don't always make it to the final letter but I enjoy collecting these items as the year goes on. When he was smaller, I used to write all of his milestones down and tell him what I thought his future would hold for him. This experience is really an emotional one for me because I usually pour my heart out and tell it like it is. As he has gotten older, I chronicle his accomplishments -- but of course he will remember those on his own, but I want him to know how he makes me feel.

Since my Alzheimer's diagnosis these letters have become much more important to me. Although I started scrapbooking after my diagnosis to help me remember as well as share what I could with my family through photos, these letters will hopefully mean much more to my son later on.

He's 23 now and there are 22 letters waiting for him. I skipped a year and there is a reason but I won't go into that. Obviously, I didn't give the letters to my son when he was 21. I'm not sure when he will get them -- my first thought is upon my death. But when my disease gets to the stage where I can no longer remember him, perhaps that will be the time he can read them -- while I'm still with him, but not at the same time.

Memory Walk

We are a week away from out Memory Walk here in Athens. It is a little later than usual but that is because of the UGA Football schedule. We have to work around football -- we either have to do it on an away weekend or an off weekend so November 4th was picked. Georgia plays Kentucky in Kentucky that day. But, because all groups have to work around the UGA football schedule, there are lots of events that happen on the same weekends. We have stiff competition from the Heart Walk that weekend.

Anyway, there is still time to donate. My personal goal is $3,500.00 -- and I'm close -- just need a little help from my friends. You can donate online by clicking here and following the prompts.......https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=160213&lis=1&kntae160213=DEB6C0D2006F40EEB471A6DB11D8D104&supId=9079347

Words

I have had the hardest time coming up with words lately. Usually this happens when I get tired but yesterday I couldn't think of the right words for things most of the day. When I get stuck, my husband will ask me "what does it do?" "what do you use it for?" or "what does it look like?" -- which doesn't help at all -- it just makes me more frustrated. I was on the phone last night with my son and couldn't remember some words and it is even harder for me when I am on the phone because I know the person can't see me struggling to find the words. A lot of times, I just have to quit talking and come back later to it -- if I remember!

Frustration

I know I have written here before about how frustrating it is for me to play tennis these days. I lack the concentration for it. And, tennis is probably about the only thing in life I have ever had a true passion for. Yesterday, one of our Memory Walk teams in Athens held a tennis tournament to raise funds for the walk. Of course, I had to sign up and my husband I played in it. Of course we didn't win -- but my frustration with it was very upsetting to me. First of all I forgot my earplugs. The noise from the surrounding courts bothers me and to make matters worse, we played at a local high school and their football team came out to practice just at the same time we started to play. So not only did I have to deal with the tennis court noise, I had the students making noise and the coaches whistles blowing all the time. And, I think that my frustration came from not the fact that I couldn't play well, but that the reality struck me that I probably shouldn't play at all. Giving up something like tennis for me is difficult.

Another frustrating thing is that my oldest brother is not well. He has diabetes and we think the start of Parkinsons. He won't seek medical attention in spite of our best efforts. He obviously has a death wish -- or so it would seem. We all feel very helpless. I feel even more helpless living so far away. He won't listen to his family. We know he is depressed and it hurts us deeply that he won't see a doctor about the things that he can do something about -- his depression and his diabetes. He was diagnosed with diabetes a couple of years ago and refuses to take medicine or watch his diet. His eyes and his feet are in bad shape and it is a shame to see him do this to himself. How frustrating.

A Few Days Off

My husband and I just returned from our first "seniors" trip. It was to the Greenbrier Resort in West Virginia. It was just beautiful. I have always wanted to go there and knew that we could never afford to go on our own. So when some friends suggested it I jumped on the chance.

The fall colors were at their peak in some areas and it was just breathtaking.

I did o.k. -- got tired earlier than I should have. I ate too much, didn't sleep enough so I got off my routine. But all I had to do was to follow people around all the time, so I did o.k. It's was so nice to have it all arranged for us. When we go on vacation we probably argue more about where we are going to eat than anything else.

In a few weeks we are planning a trip to see the kid in California. He was coming home for Thanksgiving put the airfare and scheduling didn't work. So we will have our Thanksgiving early I guess.

Since I'm pretty tired I am going to stop for now and more soon.

Religion

Yesterday, I went to a funeral in a Catholic Church. I wasn't raised Catholic and I always feel awkward when I go to a service in the Catholic Church because I don't know what to do and to say at the appropriate times. My husband was raised as a Catholic but gave it up long ago. I was raised as a Christian Scientist and gave that up long ago. But one thing I realized when I was at the mass yesterday was that I miss going to church. I also realized how much I missed singing the hymns.

After our son was born, I asked my husband if we could shop around for churches as I thought it was important to bring Alan up with some understanding of the religious world -- if for no other reason than for him to be able to decide for himself later on what was right for him. I wanted us to go to church as a family and be a part of a church. But for various reasons, we couldn't agree on a church and that hope of mine was not fulfilled.

However, I found a church that I enjoyed attending and did so for awhile by myself. But the problem I found was that in the south you don't just "go to church". Church becomes you. When I would go to this church I would see people that I knew and they were constantly asking me to "come to Sunday School", "come to my Bible Study group", "come to a church dinner", etc., etc. I didn't want to do all that stuff -- I just wanted to go to church on Sunday morning and listen to the service. When I explained that to my well meaning friends I think they understood and they let up for awhile but then they were back at it again. I felt bad always having to say no and as a result I stopped going to that church. It was the same with some other churches that I attended briefly.

I'm not a deeply religious person but I do believe in certain things. If you live in the south and don't belong to a church you are certainly an outsider.

Switching topics -- Since being diagnosed I have become aware that I am much more emotional now than I have ever been. The littlest things can bring me to tears. I have attended several funerals lately and although I didn't know the deceased very well (knew their spouses better) I was overwhelmed by my emotion. Things on tv get me stirred up to. Perhaps it is at those times that I realize how much we take life for granted and we shouldn't. I thought I had come to realize that -- but it is probably a good reminder.

Birthday/Friends/Relatives

My birthday was yesterday -- and amazingly -- I didn't wake up to a Red Miata sitting in the driveway.......or a new screened in back porch......or tickets for me and my family to go to Australia. Go figure.

But I did get lots of calls and emails from friends and relatives. And, of course, Alan was home for the weekend and that is the best present of all. I cherish time with friends and family so much these days. But now I'm tired....just a little gets me off my routine and I haven't had a nap in two days. I know that sounds like something little to most people, but I have such bad days when I'm tired. I really need to do better about those naps.

I certainly notice a big difference in not only my reaction time to things, but memory and lack of concentration. It's days like this that you do stupid things and then it makes you feel stupid. It is sometimes hard to distinguish the two -- that you really aren't stupid, you just do stupid things sometimes.

Just wanted to share a photo of me and my son. It always brightens my day when he comes home for a visit.

The weekend

It's very early on a Friday morning. My husband has just taken off to get my son at the airport as he is visiting from California for a very short weekend. I'm anxious to see him although it has only been about a month since I last saw him. But I realize how precious my time is with him and savor every moment we have together.

He is interviewing for jobs in Atlanta and Washington DC for the summer. At least that means he might be on the East Coast this summer.

I always worry about how different I might seem to him each time I see him. It's hard on all of us but I suspect in some ways harder on him.

New Message board for Early On-Set Alzheimer's

For those of you suffering with Early On-Set Alzheimer's or are caring for someone with it, there is a new message board on the National Alzheimer's Assn. website for us. You can access it by going to www.alz.org. We all need to stick together and this will help all of us. Thanks to the Association for doing this.

Thanks

I have lots of "thank you's" for this week.

Thanks to all of you for responding to my "Call For Action" last week as stated below. I really appreciate it.

Thanks to the Georgia Alzheimer's Assn. for the special greeting they sent me last week. These folks are a great group of people.

Thanks to all that have contributed to the Memory Walk this year. But if you haven't, there is still time -- you can click to the left of this blog and find a link.

Thanks too, for all your comments that all of you have left on my blog. Many do not get published for everyone to see for various reasons, but I see them all and they are very inspiring to me.

I'll save the rest of my "thank you's" for a time around Thanksgiving!

On a few other notes, I would like to say that the interview with our family that was done as part of a series for CNN is scheduled to run this Friday, October 6th. It will run in Headline News and is schedule to run once an hour from the 1:00 p.m. to 6:00 p.m. The Healthy Minute segment usually runs about 8 minutes after the hour. There will be four Healthy Minute segments dealing with Alzheimer's in all and the other one that has my family in it will run on November 6th. I'll be encouraging you all to contact CNN after they run as I did with the NBC piece.

The National Alzheimer's office asked me to come to Washington to speak at a meeting that would include the FDA and some of the pharmaceutical companies. Alzheimer's drugs was the topic. I had to decline the invitation because of a trip we have scheduled to California to see Alan and it is also just a couple of days after the memory walk. I really hate it when I have to turn down a request like that because it is so important to me. I feel like I have let them down by not being able to do this, but my stamina isn't what it used to be. When I'm tired my brain doesn't work right and it gets to be too much for me. I appreciate them asking me and I know they will find someone else to do this, but I am disappointed I can't do it. It's always been hard for me to say "no" to things, but I think I am finally realizing my new limitations and I don't like it so much.