Reprinted with permission from Alzheimer’s the Journey blog
First, let’s do some housekeeping:
- Yes, I still have Alzheimer’s Disease (and no, I’m still not “Faking It.”)
- I know everyone wishes for (me as well as everyone else with a Dementia-Related Illness) a cure/prevention/stop of progression (no one wishes that more than me) but there’s still not any of these “yet,” so I live each day as best I can, one moment at a time.
- I’m still me and “on most days” you can still talk, joke and laugh with me and I will talk, joke and laugh right back with you.
- On the “not-so-good-days,” well let’s just say I have them but don’t remember too much about them, which, when you look at it from my point of view, is actually a fortunate occurrence.
That should bring everyone up to date, so let’s move on.
I don’t get out too much anymore being I am no longer able to drive. I have to depend on my family and some very close acquaintances to take me wherever I need/want to go. The “need to go” far outweighs the “want to go” because I don’t like asking anyone to take me anywhere. I do have the option to “UBER” anywhere I want to go, but I don’t usually opt for that either.
When I do get out and run into people I know, it’s nice to see them. It just reminds of years ago when I was out and about, being part of the social scene. The only difference now is the way I am greeted. (Please don’t think I am being disrespectful or ungrateful for what I’m about to say, just bear with me.) Now, when people see me, they come up and they get a sort of sad expression on their face and they say, in a very caring tone, “Hey, how are you? You look GREAT!!!” The first thing that pops into my mind is, “WOW! I must have looked like crap years ago. What I didn’t realize is the transformation I have gone through.
Let me explain:
One of the changes that comes with Alzheimer’s Disease and one that I am now experiencing is a change in my taste buds as well as in the way I smell things.
Here are 2 articles I found which may be helpful for you to understand . . .
How Dementia Tampers With Taste Buds
Food, Eating and Alzheimer’s
Putting 2 and 2 together, when you can’t smell and/or taste the food you are eating, you tend not to enjoy it very much and you also tend not to eat too much.
Growing up in New Orleans, I ate some of the best food in the world . . . and a lot of it. At my highest weight, I was 285 lbs. I lost a significant amount of weight and usually kept it between 240 lbs and 210 lbs, sometimes dipping below, sometimes going a bit higher.
Recently, I did notice that my clothes were not fitting me like they used to. Some were literally falling off of me. What I didn’t realize, until I started seeing recent photos of me is how much weight I had lost. Then I stepped on the scale . . . I saw it steadily drop from 180 to 170 to 160 and now to 155lbs. (I have no recollection as to the last time I was even close to 150lbs but i think it was around the time of my birth.)
I can still recall my Mother taking me to JoAnn’s Husky Shop in New Orleans to shop for clothes. I wanted to wear “normal clothes” but my body had other plans, which usually included the delicious, mouthwatering donuts and pastries from Haydels Bakery and McKenzie’s. I can still taste those delicious buttermilk drops, hot glazed donuts and every pastry you could ever imagine. It was a little fat boys dream for they were both in a “bicycle ride” distance. (All that sugar could be why I have Type II Diabetes today, but I digress.)
ANYWAYS, back to the present . . . I started looking at recent photos of me wearing clothes that were the correct size for me and THAT is when it really hit me.
(Here are 2 photos I took right after my walk this morning August 23rd, 2017, in case any of you haven’t seen me in a while.
And yes, I know I have NO BUTT, but even at my heaviest, I still had NO BUTT! Thanks Dad!
The reason I posted these photos is because if someone hasn’t seen me in a long time and they see me now, looking like I do, no wonder I’m greeted like I am. I would probably do the same if I saw me.
Don’t worry, I still eat, I just don’t eat nearly as much as I used to. I eat healthier food, I don’t snack a lot and now I’m walking every day (or when it’s not raining or due to scheduling conflicts) .
What I’m trying to say is, I’m sorry if I thought badly of anyone for having that sad tone in their voice or for telling me I “look great” which is what you tell a sick person to make them feel better about the themselves. Ironically, looking at me now and looking at me a year ago, I kinda-sorta do look sick.
I guess another reason I didn’t see what others see is because in my mind, I’m still me, or at least a version of me.
I know I’m not as sharp as I used to be.
I know I can’t remember too much from yesterday or the day before.
I know I still have to rely on electronic devices to tell me what to do and when to do it.
I know there are things I can no longer do, but I also know why I think like I do and I also know you’ve heard it before, but it’s what I live by . . .
I Have Alzheimer’s BUT . . . it Doesn’t Have Me
for I Don’t Allow it to Define Who I Am!