Brian LeBlanc
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
https://www.everydayhealth.com/alzheimers/how-dementia-tampers-with-taste-buds.aspx
Food, Eating and Alzheimer’s
https://www.alz.org/care/alzheimers-food-eating.asp
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!
May everyone who reads this comment have a great day for this year! Together, let us not forget that we only have one life yet on a positive note, we have every day to make the best out of it. Let’s dedicate time for our friends, family, and loved ones, do our best at work and school, and always have time for fun and self-improvement.
Great blog!! So appreciate the perspective.
Brian- thank you for sharing. We all need a mirror sometimes– figuratively or literally–to see what others see. Your comments about how people greet you differently now–whether it be from concern over your Alzheimer’s and how you are managing it, or concern over your much more trim physique–should remind all of us to be sensitive to the feelings of others. The discomfort that so many people who who are not currently living with (or who don’t know they might be living with) Alzheimer’s disease have when encountering a friend who is living with the disease can manifest itself is so many ways. It can come from fear or from all the best intentions, but there are so many subtle ways we (those not yet living with the disease) treat you (individual people– our friends and family who are living with Alzheimer’s or other dementias) differently. I hope your blog helps to spawn honest and open conversations among you and your friends, and other individuals living with dementia and their friends and family, about the subtle stigmas we allow, about the true meaning of friendship, of how to reach out and help each other in ways large and small.
Wow! What an inspiring story. My father had Alzheimer’s–I wonder how he would have reacted to your blog. He probably would have loved it. I do.